Forever Mighty Max

Happy Birthday Max

2009-07-06T22:48:00.009-05:00

July 7, 2008

Max would be 7 years old today, on what Grace would call, his “golden birthday.” It is so hard to believe 7 years have passed since his birth, and 5 ½ years since his death. How unnatural it is for a child not to be here to celebrate his birthday, and oh how we miss him every minute of every day. Just look at our beautiful boy.

Time passes so quickly, and it seems as if we just wrote our Thanksgiving update. So much has happened since then. Grace finished a very successful 3rd grade year and is busy with lots of different activities this summer, including dance, swim, pottery, guitar lessons, invention camp, and classes at the Art Institute. Mike is busy with work (as always) and is training for another run, despite a back and hamstring injury. We are both trying to live healthier, and exercise more. In an effort to combat grief last November I started attending an outdoor women’s boot camp. I must have been out of my mind at the time, but I have stuck with it, and though I am still the worst person there, I am making improvements, and feel much stronger and healthier. When Mike and I push ourselves, we do it for Max and Grace.

I have been very involved in my women’s club for many years now, and I joined it as a way of paying back all of the kindness that was shown to us when Max was sick. We do many community service projects throughout the area, and it has meant so much to me to be able to be a part of doing good. I have always done it in Max’s memory. I have been President for the past two years, and was looking forward to ending my term on a positive note this spring. Our world came crashing down around us when we learned a very close family friend, who was the treasurer of the group, had been writing herself checks since she began her term last year. Mike and I were devastated and heartbroken, as were all of the women in the group.

Grace and this woman’s daughter had been best friends since kindergarten, and our families spent many holidays and events together throughout the years. We are left feeling extremely taken advantage of, embarrassed, stressed, and worried. Since I brought her to the group I feel a tremendous weight for what she did. I know many people are furious with her and disappointed in me. While Grace does not know all of the details, she knows the families are no longer friends, and she is sad. Mike and I are confused and very hurt.

Why do I even mention this in an update on Max’s birthday? It is because it has forced me to take a very long look at myself. I realized that I have thrown myself and my family into all of this volunteering over the years not just to honor Max, not just to pay it forward, but because in some way I felt I had to atone for the fact that we could not save him. In fact, though it sounds completely nuts, it took until last November for me to actually realize that all of this volunteering was never going to bring him back. And while I attribute the volunteering to helping save us, and especially me, from the depths of grief, I must admit that I used it too much as a crutch. It became too much of who I was as a person, and when someone I thought was a friend destroyed what I had worked so hard on, it really took a toll, and continues to do so. My mother tells me my former friend’s actions do not negate the work that our group did over the years, it is just heart breaking for it to end this way.

So where does this leave things? Mike is encouraging me to take control over my life and start working on myself for a change. Exercise is a part of it, as is my enrollment in graduate school next fall. I will continue to volunteer, but hopefully have a healthier outlook on it. And, as always, we are trying hard to keep focused on the positive things in our lives, even as the grief and sadness try to weigh us down.

One positive will always be an excuse to entertain and to be among friends. This 4th of July we threw our biggest outdoor party ever and though it rained on us, we did hear Grace tell her friend's little brother that she was sure that her brother would be friends with him if he were alive. She spoke so matter-of-factly and confidently about what kind of person her brother would be that it was another remarkable reminder of how her strength comes from the purest, most direct, emotionally hopeful place. Spending as much time as we do with this family and with this little brother, I'm sure she's right!

While one person did so much damage to our lives, we have to think about all of the people who jumped in to help during this episode. We are blessed to have some very smart and professional friends to advise us and step in when needed. And it reminds us of all of the other people who have come to our aid over the years, and put up with the fact that we are absolutely and forever changed by the loss of our son. Whether it be a family member who took off work to spend time with us in Minnesota, a long-lost cousin who drove up on Thanksgiving and packed up our belongings to move them back home after Max died, a mom who befriended me after Grace announced to her new pre-school classmates that her brother had just died, a new friend who takes the time to learn about our experience, and especially for those who remember our precious boy - we are grateful for you. We are so grateful for the brief time we had with Max, for our wonderful daughter, and for each other.

Happy Birthday, Max. Every ounce of us loves and misses you so very, very much.

~Margaret & Mike

5 Years Ago

2008-11-25T17:00:00.005-06:00

It's that time of year again, and the past few years it has been the only time we ever write an update. We toyed with the idea of writing an update a month ago before all of the sadness settled in, but Ilife got the best of us and we never did get around to it.

The beginning of November brought with it the usual sadness, but overall we were feeling a bit more "normal" this year. That didn't last long, and we find ourselves at grief week again. It has been 5 years now since Max left us. And the 26th falls exactly as it did 5 years ago - the day before Thanksgiving. Unbelievable.

To quote another website (who quotes someone else who lost 2 children), November feels like this:

“... those deathdays are hard. Or, I should say, it is the anticipation of the deathdays that is hard. For me, the day itself is not so bad. it is the days leading up to it, as I have a sense that death is coming again and I can’t stop it. I feel a sense of dread and helplessness."

We are not usually ones to start quoting other people, but when we read this we immediately understood what she meant. In November, the memories of Max's greatest suffering come back. It really is quite exhausting. And sometimes it is even worse to remember the good times - his smiles, his laugh, because then you realize just how much you have lost.

We cannot say enough how much small gestures from friends or family mean to us, especially in November. They get us through our days. To know that he is remembered, when it seems he is being more and more forgotten, is a lifesaver. So thank you to those of you who still read this, and to those who let us know you think of Max.

Grace broke down in tears tonight at dinner when we started discussing our plans for Wednesday. Grace is going to play at her friends house while we go to the cemetery. We usually bring her whenever we go, but this day we like to keep her from our deepest grief. She just doesn't understand why something like this happens. She has been a very sensitive girl these days, and crying comes very naturally, but tonight she cried a different cry. After requesting and watching some videos of her and her brother, she felt much better. Seeing her 3 and almost 4 year old self interact with her brother on video really makes her laugh. They really were beautiful together.

We don't have any answer to Grace's question of "why did he have to die?" Because there isn't an answer. Even when we try to remind her of the positive changes in our life that have risen from the rubble of 5 years ago -- new friendships, new perspectives -- it doesn't seem enough. In so many ways we want to believe that we are "better" for having gone through such an enormous tragedy. We think we're better people to others, we think many ways we're better parents to Grace. But who knows? Our relationships with others are certainly affected by the layers of grief that are always covering us, no matter how transparent they may seem. Our parenting of Grace comes with an inevitable weight of over-protection, over-sensitivity as we try so hard to make sure that the one child who remains is never hurt again.

We are members of a club whose membership no one wants. Even five years out, when work is a normal day, and school is a normal day, and all of the minutia of everyday life is filling all of the little cracks of grief, the dam can break suddenly when a memory comes rushing to mind. People who have lost a child know this, people who have watched great suffering know this. When we are with these club members, there is a shorthand, an ease to understanding. We are thankful for the friendships that have been made through mutual sadness, however strange that sounds.

Since we last wrote an update life has been very busy. A few days before last Christmas we had some very messy, very expensive plumbing problems with our old house, followed by some very drawn out, expensive heating problems. Luckily things on the home front have settled down. We will soon celebrate Grace's 9th birthday, and our 13th wedding anniversary. Mike is busy with work as always, Margaret is busy volunteering, and Grace is busy with everything! We are so very grateful for each other and for everything we have.

This summer Max was featured in an ad for the Ronald McDonald House charities on the back of the USA Today sports page. What a feeling it was to see his picture in print like that. We hope that his story continues to inspire people to help others in need, just as his smile and his struggle keep inspiring us everyday.

And we cannot end this update without mentioning a very special, very beautiful 9 year old girl. Sweet Susannah White, daughter and sister to our good friends Amy, Klane, and Madeline, joined Max in heaven this past July. Her fierce battle with Hurler Syndrome and complications from transplant, her determination to live, and her absolute love of life will never be forgotten. The same weekend of Susannah's funeral, Mike travelled to New Jersey for the burial of his grandmother. The emotions surrounding the passing of a 9 year-old and a 90 year-old were very different, but comfort came from knowing Max has the best, most lovely playmate now, and is probably sneaking candies from the dish of the greatest storyteller we knew.

Best wishes for this Thanksgiving and the holidays.

Margaret, Mike, and Grace

4th Anniversary / Thanksgiving

2007-11-20T21:43:00.000-06:00

It has been four years now, four years since we lost our baby boy, heard him laugh, saw him smile. Where has the time gone? Sometimes it feels like only yesterday, other times it feels like a million years since we've held him in our arms, or kissed his baby soft skin. We have worked really, really hard at life since Max left. We've worked hard to honor his memory and to keep on living. Fall is especially difficult, and despite all of the efforts to keep the sadness away, grief is a powerful force, and it manages to creep in. Halloween parties, volunteering, meetings, play dates, get-togethers, and work all serve as distractions, and we try to pack our fall with activities. Everyone thinks we are psycho for having bought and wrapped, and even shipped many of our Christmas gifts already, but we do it because we have to. Because if we sit around for too long with nothing to do in November, it all comes crashing down around us. This week, grief week, there is no keeping the sadness at bay.

People keep asking what we are doing for the Thanksgiving Holiday. We just say, "staying in town, what are you doing?" What we would love to say is, " Grieving. Fighting hard to survive what should be a joyous holiday. Trying not to panic when we see everyone at the grocery store loading their carts for Thanksgiving dinner. Putting on a brave face for our daughter. Reliving our son's last days, the sound of his very last breath. Remembering the look of sheer helplessness and terror in our spouse's eyes as we watched Max slip away, giving Max a bath after he left us and dressing him so that his sister could come over from the Ronald McDonald House and say goodbye, watching Grace climb into bed with him so happy that he was no longer connected to tubes, and try and stick his pacifier in his mouth." That is what we would like to say, so that people know just how hard this is.

Without a doubt we are grateful this Thanksgiving and always. We are probably more thankful than most people. To have survived this, to have such a wonderful daughter and spouse, to have had Max even for such a short time, to have managed to create a new life for ourselves - these are all things to be grateful for. But it will be hard, harder than anyone can imagine unless they have gone through it themselves. It is true that as time goes by, the day to day gets easier. We just have to accept the fact that Thanksgiving is always going to suck. This holiday weekend we will take Grace to the movies, visit with friends, and shop. We will get through it like we always do, but oh how we miss our son, and how our hearts ache for him.

What we miss today and always:

Happy Thanksgiving,

Margaret, Mike, and Grace

5th Birthday

2007-07-07T00:10:00.000-05:00

Today is 7/7/07 and the news has been reporting what a good luck day this is, how people have picked this day to be married, or at least to buy a lottery ticket. For us it doesn't feel very lucky, it's Max's birthday, and his 5th one at that. The 5th birthday is really the first "big" birthday, loaded as it is with the thoughts of kindergarten. When Max was sick it was hard to imagine him as a 5 year old kid because he surely wouldn't have been like any kid I could see around us. But since he has passed away, we have seen Grace pass through the big 5, and as she began school we have seen plenty of little boys grow and turn 5 as well. None of them have the complications from Hurler syndrome or from stem cell transplant, but they run around with their big sisters and they see Grace and they show us a small sign of what might have been. Who's to say what kind of 5 year old Max would have been? But it sure gets your mind racing when you see the kinds of boys who chase Grace around the playground.

Grace still has a hard time processing the unfairness of being an "only child" when all of her friends have siblings. While the advantages of such a fate seem obvious to us in both goods (stuffed animals, art supplies) and services (personal chauffeur, chef), these pale in the thought of what it would be like to have a playmate in the house every day. As she has grown, she does seem to be slowly accepting her situation, but that doesn't mean she doesn't push us. In time I'm sure what she is acting out is the same feelings that we have. She's not really jealous of anyone else, she's just sad for her loss. She doesn't really want a baby in the house, she just wants to be with her baby brother again. This, I believe has nothing to do with being an "only child" and everything to do with being the "only child left". Still, when she is truly sad about her life, it can be devastating.

Last week we were interviewed on camera for a video for Ronald McDonald House Charities. In between interruptions for audible airplanes, trucks, and an occasional premature firecracker we tried our best to tell our "story." We have a mostly accurate account of the day-to-day process of transplant, thanks to this and our previous website. And we have a photographic record of our son that still contains some of his very best smiles and memorable moments. But talking about our son, side-by-side with lights shining and with camera make-up on is another story altogether. In some ways it is performance, we are storytellers, and while we very much can recall images and moments as painful and as real as if they are happening in the present, there are other facts that remain somewhat elusive under the pressure of an "interview." I'm not sure when (if ever) there will be a time when we can talk about our son in a way that is effectively quotable for this sort of thing. What we said, and how we said it seems like a blur. Writing is always erasable, and spell-checkable, and for that, I have been always grateful. But speaking is live, unscripted, and once the words are out they have taken on meaning, and we can only hope that the editors of the video can find meaning to portray our son in a light that both dignifies him and reflects positively on the Ronald McDonald House. It is truly an honor to be asked to tell Max's story. In talking about our son, we are keeping his story alive And if that story can reach an audience and perhaps inspire others, he will have given a wonderful gift.

After we were finished they interviewed Grace in her bedroom. She was able to easily conjure up stories based on pictures I had shown her in the morning, but when pressed was a little foggy on some things that seemed so very important only 3 and half years ago. But of course, for her, that's half a lifetime. She mentioned her friends from the house, Rileigh, Rowan, and Kendall. She told the interviewer that Rowan was from Egypt and Kendall had died. They mostly asked her about what it was like to live at the RMH and she did her best to remember many of the good times. She even told them a hospital memory, when she was leaning in close to Max's bed and fell off a high stool and while falling said "I'm OK" before she had even hit the ground. She was very poised on camera, and made us very proud.

As in the video we made a few years ago for the RMH in Minnesota, they took some "B Roll" of us just walking around the yard and watching old videos. Grace was cracking up at herself, how little she was and how silly her brother was trying to climb the walls of our room. For all of his complications, he really was a little spark plug of a kid and he was so determined! So much of that is in Grace too, of course, but to see how far he could "walk" along walls is still very inspiring. As Margaret likes to say, he had "fire."

The night before the interview we cooked a luau dinner for our local RMH and we were touched by some of the compliments we received for our decorations and for our food. On the video Margaret explained that she first called our local RMH two weeks after Max died and they must have thought she was crazy. But it remains our most direct way to give back to the people that helped us so tremendously, and to try to help families that are struggling through the exhaustive care of a sick child.

And yesterday we received a small card from the RMH in Minnesota, our true home for the 5 months Max was in the hospital. It told us that he was being thought of, and it was a simple gesture of kindness that we have come to treasure, though certainly not expect. I can imagine that with a house so large, they have to send cards for nearly every day of the year. With all of the other things going on, and all of the kids who need care now, it means an awful lot to be reminded that we still have a place in the minds of those who cared for us.

Since our last update was about MPS Day, it seems like a long time since we gave our family news. Grace finished first grade like a rock star, adding new friends and great families to her already large social circle. She remains active in gymnastics and ballet, and has added swim, camp, and a couple art classes to keep her busy this summer. She just lost her first front tooth, another sign that she is growing up way too fast. Margaret continued her work in Grace's school and in her women's guild, even telling our story as a way to get her group involved with RMH. She just got back from a Vegas weekend with Grannie and Aunt Katie, where she managed to win a small amount of money on a version of Wheel of Fortune. In between lots of busy work weeks, I had a fun trip to NYC for work to support one of our designers who won an award and was able to see my old friend Jeb. When not trying to out-shred the other Oak Park/River Forest Guitar Hero parents, I've kept up with running and have even enjoyed myself in an 8K and a 5K, with a 10K coming in August. In addition, we had a visit from Grandma Chick in January, Aunt Lisa and cousin Viv in April, and Aunt Dana, Uncle Geoff and all the Maryland girls in June. For Spring Break we took on Walt Disney World for the first time and had a great week. Whew!

Many thanks for the support this year, and may all your lottery tickets be winners.

--Mike, Margaret & Grace

International MPS Day

2007-05-13T21:34:00.000-05:00

This Tuesday, May 15, is International MPS Awareness Day.

Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials. Individuals with MPS have a dramatically shortened life span.

As most people know, our son Max was born with MPS 1 - Hurler Syndrome, and like so many other children born with this disease, he passed away from complications from a stem cell transplant 3 1/2 years ago. He died far too young, and we have suffered far too much. Tuesday is a day that many families like ours will be taking a moment to remember, recognize, and rejoice in each other. We ask only that you consider this email a reminder of this day, and that MPS disorders are just one of far too many diseases that are too rare for cures to be funded properly. "Awareness" means an increased understanding of the reality and presence of something otherwise unknown. We had not heard of MPS or Hurler Syndrome before our son was born, and we certainly had no idea that our beautiful boy - so pure and full of love - would be gone so soon.

Perhaps you will have a moment this year to make a contribution to a charity of your choice. Please consider the National MPS Society. It is a grassroots group of families who have created a community to engage with doctors, pharmaceutical companies, and each other to work continually towards future cures and current quality of life concerns.

To make a donation or to learn more, please visit:
http://www.mpssociety.org/

Thank you for your support,
Mike, Margaret & Grace Ciacciarelli

3rd Anniversary

2006-11-21T21:53:00.000-06:00

Nov 2006

It is hard to believe a full year has gone by since we did a proper update. The last anniversary of Max's death was truly an exhausting experience. Last year at this time we were feeling the depth of our loss while witnessing the rest of the world moving on. Rationally we know that the world keeps going even after such a light has been taken from it, but during the depths of our grief it sometimes feels unbelievable, unnatural, and almost insulting that it does. Time should stop, shouldn't it, at least for a day, to recognize the loss of our son? And yet, even we go on, and we find ourselves at the 3 year anniversary of Max's death. Grief week has begun.

Something about the change in weather as fall begins always brings about memories of Minnesota. Things we haven't thought about or talked about in months and years come back to us - a certain nurse will come to mind, moments with Grace in Max's hospital room will be remembered. Even Grace is reminded of her time there. Just when we thought she was starting to forget it all, she remembered the most obscure game she used to play at the RMH. The feelings of helplessness as we watched Max get sicker and sicker come back as well, and the fear and panic. With the best intentions, this week many people will encourage us to "be comforted by the good times we had with Max." The truth is, remembering the good times is almost more painful than remembering the bad. It is in the memories of the good times that we realize how great our loss really is, and when we miss him the most. We also miss what life could have been with him, what we had planned on it being. We mourn that Grace will never have a sibling to play with or confide in. We mourn the loss of our old selves, and the parents we used to be. Without a doubt we have tried our best to be good parents to Grace and partners to each other, and we are proud of how well we have done, but we can't help but wonder what we would be like without the weight of the last few years.

This year Grace has undergone a transformation in her understanding of and reaction to what has happened to her and her brother. She has eased up a great deal on the incessant asking for a brother or sister, though she still points out every cute baby that comes into her view. Much to our sadness, she has also chosen to keep information about her brother private from friends. At the beginning of first grade she was chosen to be student of the week. As part of the assignment and oral presentation she had to list her family members. She chose not to list her brother, which just about broke our hearts. She argued that she was afraid she would cry in class at the mention of him. She was also afraid her classmates would not believe her, and would ask too many questions. It was very painful to hear her say this, but at the same time we understood her desire to not feel so different. At times we too feel the uneasiness of others at learning our situation, and wish to be "normal." As most disagreements with her (the master negotiator) end, we compromised with her and she placed a star on our family picture to represent Max.

Grace is doing very well in all other aspects of her first grade life. Ballet and gymnastics continue along with the addition of Brownies this year. She also completed a season with the Soccer Sisters and a 2-4-2 record. Mike was the ref for almost all games, and remained (mostly) impartial to Grace's team. She is doing really well in school, and if she isn't at an extracurricular activity or on a play date, Grace can be found watching SpongeBob with her father, in her art room, or with her nose buried in a good book.

Mike continues to do well at his job, and has taken up running, with his first 5K race on Thanksgiving day. Grace and I will be there to cheer him on, and after we will head over to our favorite restaurant to stuff ourselves. With Grace in first grade, I am adjusting to an empty nest. I started off the beginning of the year full of home improvement ambition, but as time has gone by I am missing the company of my girl more and more. She grew up way too fast. I always thought I'd have Max at home when Grace started school, but now I find myself with too much alone time. I am volunteering at school and with my women's club, and am still cooking at the Ronald McDonald House, but still really feel like I need to fill my life with something else. What that is I really don't know, and am feeling extremely lost. A few moms have (innocently) commented on how wonderful it must be to have so much free time, but I'd much rather be busy chasing my son around than have extra time to complete tasks or read a book. I'd much rather have a home cluttered with toys than the neat and tidy one I have now. I am really hoping something will come to me and I will have the guidance to know what to make of this new phase of my life.

Mike and I had our 10th anniversary in February. We met in college many years ago in Italian class, and what better way to celebrate than to travel to Italy! With Grace and Granny in tow we headed to Rome to visit Margaret's sister Katie (studying there for a semester) for 10 days. We rented an apartment, visited all of the local attractions, walked a lot and ate a ton! It was the trip of a lifetime, and we were all very sad when it was time to come home. Grace asks almost every week if we can go back to Italy. This summer we attended a family reunion on the east coast, where Grace got to visit with her cousins. We ended the trip with a stay in NYC, where Grace got to attend her first Broadway show, The Lion King. We also had a fantastic trip to MOMA, and got to see the work of some of Grace's favorite artists. A few weeks ago we hosted Grace's annual Halloween party, and had a record attendance.

Best wishes to everyone this holiday season. We are very thankful for those who still support us and think of Max.

Margaret, Mike & Grace

National MPS Awareness Day

2006-02-23T14:19:00.000-06:00

Last year the U.S.Senate passed a unanimous resolution, officially making February 25 (Saturday) National MPS Awareness Day.

As most people know, our son Max was born with MPS 1 - Hurler Syndrome and, like so many other children born with this disease, he passed away from complications from a stem cell transplant. He died far too young, and we have suffered far too much. Saturday is a day that many families like ours will be taking a moment to remember, recognize, and rejoice in each other. We ask only that you consider this email a reminder of this day, and that MPS disorders are just one of far too many diseases that are too rare for cures to be funded properly. "Awareness" means an increased understanding of the reality and presence of something otherwise unknown. We had not heard of MPS or Hurler Syndrome before our son was born, and we certainly had no idea that our beautiful boy - so pure and full of love - would be gone so soon.

Perhaps you will have a moment this year to make a contribution to a charity of your choice. Please consider the National MPS Society. It is a grassroots group of families who have created a community to engage with doctors, pharmaceutical companies, and each other to work continually towards future cures and current quality of life concerns.

If I may be allowed to quote from a press release from the MPS Society:
Mucopolysaccharidoses (MPS) and Mucolipidoses (ML) are genetic disorders that cause cells to perform improperly, resulting in progressive damage throughout the body, including the heart, bones, joints, respiratory system, and central nervous system. The diseases are rarely apparent at birth, but the signs and symptoms develop with age as more cells become damaged. As the damaged cells accumulate in the body, the body shuts down, eventually leading to a premature death. At this time there is no cure.

As the original sponsor of the resolution, U.S. Senator Lindsey Graham, R-South Carolina, said, "It is a parent's role to make sacrifices for their child; yet, for the parents of a child diagnosed with MPS, the sacrifices are exceptional. I have had the opportunity to meet with a number of parents of MPS children. These parents exhibit amazing hope, love, grace and humor that can often mask the many trials they undergo in caring for their children. My staff and I are constantly impressed at their ability to advance their cause while also selflessly caring for their children."

Additional information is available online here:
http://www.mpssociety.org

Thanks for your continued support,

Mike, Margaret & Grace

2nd Anniversary

2005-11-23T00:52:00.000-06:00

While Saturday the 26th is the calendar anniversary of Max's passing, we will forever feel the weight of his loss today, the day before Thanksgiving. At this time of reflection and giving thanks, we are compelled to measure the depth of his loss with the joy of the memories he created in his short time with us. Margaret asked me the other day if I thought he forgave us for all that happened to him. Nothing was his choice, of course, all decisions were our own. And while I believe Max never grew old enough to cast blame, I too hope that when the time comes to see him again, he will understand we only wanted the very best for him.

The second year has been harder in many ways than the first. The first year is shock: "I can't believe this is the way it is." The second year is just the opposite: "This IS the way it is." The reality hurts more than the disbelief. We have found ways to push away the sorrow, often burying ourselves in house projects or just focusing completely on Grace. But this time of year (known quite seriously as "Grief Week" around here) puts the emotions front and center. We are put back in his room, back on 4A, back at the Ronald McDonald House, back at the funeral parlor, back in our house alone, without him.

Our lives manage, day by day, but there are moments, sometimes only for a few minutes or two, where it is clear that no one else can really imagine what we're going through. For every kind gesture where someone mentions his name, there are far more parents meeting us for the first time who ask us if Grace is our only child. Yes and no, we tell them. We had another, but he passed away. She's the "only child," the only child left. Oh my God, they say. "I had no idea." One never knows the private grief of another, and while they can not imagine our pain, from our perspective, we can not imagine their good fortune. And that opens the door to what is fair. There are parents unable to have children. Surely this is unfair. Perhaps they are jealous of the joy we have in our daughter. When they see us out with our beautiful girl do they feel the way we do when we a big sister help her Mom with her baby brother?

Grace continues to be our light, our glowing shining light. While no one wants to read me complaining about what is fair or not, the truth is we are faced with a reality that makes us ask the question every single day. Grace wants to know why she can't have a sister. She wants to know why we don't just have another baby. She understands the genetics, and she would never wish suffering on anyone, but doesn't understand the inequities of not being given the same thing that all of her friends have been given. We should be happy with what we have. But that would be so much easier if what we have was what we had, but it's what we have left.

Faith? Should that get us up and out the door? Perhaps. I am jealous of the true believers, those whose faith is blind. I am jealous of their peace. But I have a hard time reconciling a benevolent God with a wife in so much pain and a daughter so lonely. "God must have had a place for him" they say. What place is better than in his mother's arms? Or next to his sister, laughing on the floor? "He's not sick anymore," they say. Well why was he sick at all? Even the priest at his funeral had to admit that there is no explanation for so much suffering in a soul so pure. Two years ago this week there was a tube that was pulling up blood and the lining of his intestines while dialysis machines cycled his blood and his skin scabbed over. And yet I haven't given up on heaven, if only because I won't let myself. It's the only part of faith hanging onto, the part that predicts future reunion.

So we send our daughter to public school, happy that she doesn't have to believe in something that doesn't have all the answers, while at the same time admitting that neither do we. How should we act? How should people act around us? We've seen people change when they hear "our news." Soon after Grace started kindergarten I received a call from the school social worker. I asked him about how to deal with delivering our news to other parents. He warned me about becoming part of a "pity party." He warned me of a kind of group reaction of shared gossip, under the guise of shared sympathy. He warned me that just as quickly as people will attach themselves to us, they will leave us. We have seen this on many levels, often times choosing to not share our grief or our story. Maybe that's why so many people seem to think we must be "over it." Far fewer people checked on this year. Maybe it's because we haven't been updating (who's still reading?) or maybe it's because people have moved on.

There is no timetable for grief. We will never be "over" our son's death. But we will move forward. I am so very proud today to be with my wife and daughter and to have a future with them. Pain this deep has destroyed marriages and/or has rendered one or both parents unable to take care of their children. But we are as strong as anyone can be in our situation. That doesn't always make us easy to be around. But we are buoyed by our love for each other, by the knowledge that there is goodness in the world, by the small feats (getting out of bed every day) that when added up are in fact great accomplishments. I am proud that when called to speak about our son at his funeral we both were able to speak so proudly. But I'm even more proud that 2 years later we still all climb in bed at night to read stories.

Grace is deserving of an amazing update all about her, but this day is for Max, and I've vented long enough.

So I will end this note with lyrics from a Mason Jennings song that's been playing on our "painting stereo"

If this darkness came from light
then light can come from darkness, I guess

Happy Thanksgiving,

Mike, Margaret & Grace

Summer Update '05

2005-07-02T01:00:00.000-05:00

As usual, it has been very long since our last update. We often struggle with these updates, as they can at times be very exhausting. We agonize over what we write, as it leaves one very vulnerable to others' judgment . To be honest, we aren't sure how much longer to continue writing. But for tonight, we will write, as much has been happening in the Ciacciarelli household since January.

February was a busy month, and we celebrated our 9th wedding anniversary. This year it was a little easier to celebrate
than last. We went out for a nice dinner and movie, and before we left Grace slipped us an anniversary card which read "I will miss you guys." She was jealous not to be included on our date. The next day we took Grace to Wisconsin for a day of skiing (her first time) thanks to Aunt Peeps and Uncle Charlie. Most of the day was spent picking her up off the ground. She was getting quite frustrated and Mike was getting quite tired when we finally decided to just let her go down the mountain. She made it down the bunny slope one time all by herself (when she started going too fast we had her plop down on her bottom to stop). It was nice for Mike to get on skis again like he did when he lived in New Hampshire, and for him to share his old hobby with Grace.

We had the opportunity to watch Grace's cousin Vinny for a few days at our house in February. Grace was more than happy to act as her younger cousin's unofficial babysitter, and to have a playmate around the house so much. She truly loves her cousin (just one month older than Max), and often asks if he can come and live with us. Grace continually asks for a brother or sister, which just makes our hearts ache. She is very bright, and we think she understands the genetics of why we cannot have another child, but is a master negotiator, and just will not let it go. "Maybe the next baby won't die," she says, and even suggested taking her ballet teacher's baby once it is born ("she has two other kids"). Her desperation is apparent, and our situation sets her and us apart from everyone in every way. Almost everyone she knows has a sibling. She recently said to me out of the blue, "I am mad at God because he made my brother sick." Her grief and understanding of our situation is always evolving as is ours.

Our desire for Grace to be around more kids, and our determination to give our only child the best opportunities to succeed prompted us to make a very big decision. Just a little over a month ago we left the only home Max lived in and moved one town over. The decision to move was very hard, and very complicated.

The two towns neighboring ours both have excellent school systems, and being that Grace is very bright we wanted her to have the chance to attend those schools. Though it's a financial stretch to move to these towns, their proximity to Mike's work and to friends who already know our story made them our best option. We made it clear to our realtor, however, that it would take a very special house to get us to move from the home we loved. After some looking we found what we thought was that house. We made a bid, and to strengthen our offer, put our house on the market. Well, thanks to an unscrupulous realtor (not ours, the seller's), we lost the house we bid on, and within less than 24 hours of putting our house up for sale our house was sold! I guess all of the work we put into it paid off, and you would have thought we were excited about selling our house so quickly. We weren't, and instead immediately regretted our decision. But, the house was sold, the buyers wanted to close quickly, and we still wanted all of the same things for Grace so we went on a frantic search for a house.

In the middle of all of this, we took a very nice trip to Maryland to see Mike's sister Dana and her family for Easter. His sister Peeps came to visit as well, and Grace "totally" loved playing with her cousins and helping take care of her littlest cousin Viv. The trip was too short, and we were too distracted with the idea of being homeless, but we had a really good time.

Once we got home from our trip, as fate would have it, Margaret ran into a friend of Mike's from a previous job. This woman had helped us find our apartment when we first got married, and put us in touch with the person we bought our first house from. Wouldn't you know it, her brother was being relocated and needed to sell his house right away. To make a long story short, we are in his old house right now! It is very old, very crooked, and needs a lot of work (all of which made it more affordable for us to buy). We have our work cut out for us here, and have made many trips to the paint store already (the clerks know Grace by name). Grace and Max's pediatrician happens to be our next door neighbor, which is nice, and it is on a really beautiful street directly across from the school Grace will attend. We went to the open house and she made herself right at home in the kindergarten classroom.

The days before the move were very difficult, and the emotions were often at times very powerful. It is almost too hard to believe that we cannot take our son with us to our new home. To move to a place with no reference to Max, no memory of him is very sad. Not to be able to sit in his room anymore and remember him sleeping in his crib is very hard. The night before we moved we packed Max's dresser, where we had been keeping some things of his we like to look at (the hand prints and molds we made the day before he died, his pacifier, jacket and Super Boy outfit ...). It was very emotional to say the least.

Of course we wouldn't sell our house to anyone who wouldn't let us take Max's tree and rose bush with us. It simply wasn't an option to leave them behind, so thanks to the help and very hard work of Uncle Vince and our dear friends Chris and Craig and Marko and Tunia the tree and bush came with us to the new house. Despite the stress of moving and the drought we are experiencing in Chicago, they are doing quite well. The area of the yard they are planted in looks quite pathetic though, so Mike and I will be spending Max's birthday (July 7th) sprucing it up.

In the days just prior to the move we celebrated Mother's Day and Mike's birthday, and of course we recently celebrated Father's Day. On the days we honor parenthood it is especially painful not to have our son with us. Grace, however, really loves those days and as always brightens our moods.

We are settling in to our new home, working our tails off painting and decorating as we prepare for the arrival of Mike's sister Dana and her family for the 4th. After they leave we will be visited by some transplant friends who are stopping in Chicago on their way to MN for check ups. Last week we met up with our RMH neighbor and Grace's friend Dustin. He looks so wonderful, now 3 years old and cancer free! Grace really enjoyed playing with him at the park and we enjoyed catching up with his parents. Besides visiting with friends and family Grace is busy this summer with t-ball, swimming and will soon start gymnastics. She finished dance a few weeks ago with a dance recital performance of Petticoat Junction. She is quite a little lady, really into fashion and friends these days. She is a challenge, a wonder, and a joy.

We hope you all have a safe and happy summer.

Love,
Margaret, Mike and Grace

Tax Day aka Diagnosis Day

2005-04-15T23:27:00.000-05:00

To most people, April 15th is the day their tax returns are due. To us, April 15th marks the day when our lives changed forever. Two years ago today Max was diagnosed with MPS. We will never forget looking at his smiling face as the doctor told us the news. We will never forget the anguish we felt knowing he'd probably only live 5-10 years. Little did we know that he'd be gone only 7 months later.

It's been very hard this week as this anniversary approached. We miss our son more and more each day, and Grace deeply misses having a brother. It is still all so unbelievable to us, and yet all too real.

Much has been happening since we last wrote, but we will save all of that for another update. Tonight we just want to remember our sweet Max.

New Year Update

2005-01-16T22:47:00.000-06:00

Our last update ended right before Halloween, so I guess we should begin there.

Halloween was filled with LOTS of activity and fun for us, especially Miss Grace. She was beautiful as Sleeping Beauty, and had a wonderful time at her school party, cooking at the RMH and at her own Halloween bash at our house. A highlight was Mike being wrapped in toilet paper as part of the game "Turn a Daddy into a Mummy." She especially loved meeting her new cousin Vivienne that weekend. Grace has such a love for babies and other children, and it showed as she helped her Auntie Peeps care for Viv. Amidst all the other partying, we managed to also squeeze in a Ralph's World concert, one of Grace's favorite musicians.

The festivities of Halloween helped keep our minds off of the anniversary it
marked: one year prior Max had become extremely ill, and it was the beginning of the end of his life. Once the excitement had died down, and the company had gone home, reality set in once again as we began the month of November.

November was a month of remembering and reflecting. At times we grieved harder than we had since Max died, other times we felt pride and relief that we made it through the year. The impending threat of Thanksgiving week loomed over us, as we wondered and worried how we would handle the
anniversary of our son's death. As the world around us worried what it
would be serving for Thanksgiving dinner, we were worried that the anniversary would mean an end to the significance of each day. After all, every day for the first year we could remember where we were the year before, and how our son was with us. After the anniversary, each day now
means that it has been more than a year, and it seems too far away. In
April he will be gone longer than he was here, and that too, is an anniversary of sorts, and a reminder of the awful cruelty of his fate.

One of the harder moments involved bringing in a family photo for Grace's class Thanksgiving bulletin board. Looking through old photos during an already tough month brought back so many memories and so much grief. Max was such a beautiful and happy boy, how did all of this happen to him? To look at ourselves in those photos is to look at different people - so young and naive, so completely unaware of what was about to happen to their child and their family. What made the assignment extra hard was that we have only a couple of pictures of the four of us together, and that there will never be an opportunity to take another family photo again. In the years to come as Grace grows older and is asked to bring in family photos, we will no longer be able to present a picture of her at age three with her brother, but will one day have to turn in a picture of only Grace and us.

While the date of Max's death (Nov. 26th) was the day before Thanksgiving, this year it fell on the day after. So it was almost as if we recognized two anniversaries. This year we spent the day before Thanksgiving in Grace's classroom, at a "Thanksgiving Feast" of pumpkin pudding, muffins and popcorn that the children made. Grace was dressed as a pilgrim, and we watched their Thanksgiving presentation with joy and sadness. The bulletin board was a main attraction, and a reminder to us of what we had lost. Afterwards we went home where we found numerous packages and cards on our front porch. So many people remembered us, and most importantly remembered Max, that it truly touched our hearts and lifted our spirits (or maybe that was the candy elevating our blood sugar?).

Since we did not know how we'd handle the holiday we opted out of a big family Thanksgiving dinner and instead made reservations for the three of us at one of our favorite restaurants. The morning was a very emotional one, and we stopped at the cemetery on the way to dinner. Once there at Max's grave we felt much calmer (as we always seem to do), and we headed off to celebrate Thanksgiving, much more for Grace than for any other reason. We thought the restaurant would be somewhat of a lonely hearts club, but it was actually very crowded and festive. Our mood improved (especially after so much yummy food and dessert), and after dinner we spent some time with family at Margaret's sister's house. There Grace got to spend some time with cousins and friends, who were helpful in shielding her from our deepest sadness. Auntie Beth was kind enough to let Grace sleep over and we headed home to be by ourselves and our grief.

The next morning was the actual date of Max's death. Most years we'd be out shopping at 6 am at the crazy day after Thanksgiving sales, this year we were buried in grief. We got ourselves together, stopped at the flower shop for some arrangements for Max's grave, and headed to the cemetery to visit our son. Afterwards we picked up Grace and once we saw her we started to feel a bit better. It is amazing what a light Grace is in our lives. By the end of the day we even felt up to taking Grace to the Holiday Lights celebration at the zoo. We have literally dragged ourselves through this year, for Grace and for each other. The desire for her to have a good and happy life has forced us to face situations we would not have faced, and do things we would not have done to make ourselves feel better.

Though hard, this December was easier than last. We were so numb last year we barely remember what we did. This year we were actually able to enjoy ourselves. Grace seems to have developed her mother's love for shopping, and so we had many enjoyable trips to the mall with her to buy special gifts for family and friends. She also enjoyed the holiday windows in downtown Chicago, a Christmas party at school and seeing Santa at Mike's work. December was another busy month for our girl.

We were scheduled to cook at the RMH Christmas Eve, but thanks to a triple case of strep throat in our house, we were unable to go. Luckily, Margaret's siblings took all of the food and decorations to the house and did a great job. We were disappointed to have missed an opportunity to honor Max's memory in person, but we know that his spirit was felt. Thanks to Margaret's mom, sibs and cousin for their help that night. By Christmas day we were all feeling much better. As usual, Santa was very generous. Grace attacked the presents with gusto, but even she pooped out at the end, and we had to help her open the last few. We had a nice quiet dinner with Margaret's family that evening.

Grace was looking forward to New Year's weekend almost as much as Christmas, due to the arrival of her cousins Anne, Ems and Veronica from Maryland. It was amazing to see her so entertained without us. Grace has always been independent, but since Max's death we have been her main playmates. With the girls around it was almost as if we were invisible. We had a blast New Year's Eve, letting the girls stay up until "New York midnight," banging on pots and pans, blowing noise makers, and screaming when the ball dropped. We were all very sad to see them return home.

All of the excitement of New Years must have taken its toll on Grace's recuperating body, and she caught a nasty cold soon after, followed by the stomach flu. You would think with our experience we'd have germ control down pat, but despite all of our antibacterial wipes, we have had a lot of sickness this year. It is hard not to panic when Grace gets sick, and trips to the doctor bring back memories and much anxiety. Grace seems to get anxious herself at the mention of illness. Recently she told us that she worries about dying, but knows it would be okay because she would be with Max. We have to remind her that she does not have Hurler Syndrome like her brother. Luckily, Grace is now feeling much better just in time for her Birthday!!!!!!!!

Yes, our little girl is turning 5 this week, and as we type this we have so many good memories of the awesome party we had for her this weekend. She was the host of about 20 kids at a children's gym and everyone had a fantastic time. As we drove away, Grace said, "Today was the happiest day ever." Of all the things you want to hear from your kid after you throw them a party, that's about the best.

We cannot believe how time flies. Birthdays have always been important to us, but having only celebrated one birthday with Max, they have even greater meaning to us now. We simply cannot understand parents who do not have parties for their kids. We are so blessed to have Grace, and so proud of her. She is a miracle to us. Her pregnancy was difficult and scary, and she was born premature. She could have very easily been born with Hurler instead of just being a carrier. And despite all that she has been put through the past few years, she remains the smartest, prettiest, friendliest, most social, adaptable, and wonderful child in the world. Can you tell how much we love her? She is our Amazing Grace.

Well, we have many post-party thank-yous to write, and also some exercise too. Yes, that is right, we are trying to work off some of that grief weight. With a Christmas purchase of a treadmill (or as Grace calls it, the Dread Mill), maybe we will be a bit smaller the next time we see some of you.

As always, thanks for checking in on us. Hug and kiss and take lots of pictures of your loved ones!

-Mike, Margaret and Grace

Almost 1 year, RMH Gala

2004-10-23T17:28:00.000-05:00

It has been such a long time since we have updated, and we apologize to our loyal readers. We are not sure just how many people still check up on us, and sometimes we wonder if we should be writing this journal any more. But then we remember that this diary will one day be read by Grace when she is older. Hopefully it will help her understand who her parents are and why they are the way they are.

The past few months have marked the anniversaries of so many important dates for Max. August 14th was the anniversary of Max's transplant. We were filled with such hope that day, and were so grateful for the second chance at life being given to our son. It was just 14 days after transplant that Max became very ill. We have been going back into our journal and reading our entries from last year. It is all so unbelievable to us, and sometimes feels like it was just yesterday we were in his hospital room with him. Our most difficult times are ahead of us, as we remember Max's sickest days. On November 26th it will be one year since he died. God we miss him so very much.

Since Max's death we have tried very hard to keep ourselves busy. Grace, of course, helps out with that. A very large part of us is proud that we have kept going, kept living life for each other and for Grace. We have never spent a day in bed crying, sent Grace to someone's house because we were too emotional, etc. Sometimes we wonder if this has been the smartest thing to do. The weight of all of it seems to be settling in, and we are feeling very tired. I guess it is only to be expected. Here is a recap of just what has been keeping us busy ...

Mike's parents came for a visit in August. Grace had a great time with her Grandma and Grandpa Chick, especially during their visit to the newly opened Millennium Park in Chicago. Hopefully we didn't wear them out too much. In an effort to keep ourselves distracted (and because it was badly needed), Mike and I decided to remodel our kitchen. The Ciacciarellis' visit came in the middle of the messiest part. They endured the less than perfect accommodations, and helped out a lot with the work. While the Ciacciarellis were in town Margaret's mom and sister decided to throw an early surprise birthday dinner for Margaret. It was a nice party that unfortunately ended badly. Margaret's mother fell down one step and broke her leg so bad that we had to call an ambulance to take her to the hospital. She had to have surgery, and has been stuck on her couch for weeks now.

Margaret's actual birthday in September brought back many memories of Minnesota. The day before she turned 30 Max went on the ventilator a second time. We never believed though that he wouldn't be here when Margaret turned 31. Like last year, Margaret's family tried very hard to give her a great birthday, and they did. Margaret said it was hard to feel too sorry for herself when Grace was so thrilled to celebrate. Grace just exudes a love for life.

Speaking of Miss Grace, she has been very active as usual. She started 3 day preschool as well as ballet and gymnastics. Grace caught her father's Olympic fever this summer, and after catching her trying to do some dangerous gymnastics moves, we decided she would benefit from some real instruction. She absolutely loves the class, and as she said the other day "It is just so much fun!" She has the same preschool teacher as last year, which helps as she is well aware of our situation. We were a little worried about the fact that her best friend would not be in her classes with her, but Grace seems to have adjusted well. It is awkward at times as Grace meets and wants to play with new kids. We always stress about the appropriate time to bring up the topic of Max, as we don't want anyone (especially kids) to be freaked out by our experience. So far we haven't had any problems, and the moms have been very understanding.

Grace continues to talk about and miss her brother. Her teacher even told us that Grace brings up Max about once a week. We are not sure how much she really remembers, but she often looks at pictures of him and asks to watch home movies of them playing together. Several of her friends have had recent additions to their families. This has brought up many questions for Grace. One day upon seeing my not-so-flat, grief-enlarged tummy Grace excitedly said "Mom you have a baby in your belly too!" (OUCH). I had to give her a mini genetics lesson on the spot. She is very bright and you can see her trying to work things out in her head. She recently asked me whether her best friend's new baby sister would need a transplant too. She sighed a huge sigh of relief when I told her no.

This summer we were contacted by the Ronald McDonald House in Minnesota and they asked us to be the guest speakers at the house's 25th Anniversary Gala. We were touched and honored to be asked, and of course said yes. It is always a good feeling to talk about Max and to share his story with people who are willing to try to understand our loss. But after the difficulty we had speaking at the hospital memorial, we were concerned about our ability to convey the dignity of Max's life in front of a large audience. First we were told that we would be making a trip to Minnesota the week before the gala to be taped with Don Shelby, anchorman of the local Channel 4. Then it was decided that Don would make a trip to our home that same weekend and interview us here. This turned out to be a great idea. We had to scramble a bit to get the house in order after the kitchen remodel, but it all got done. Don came with Tony, the RMH marketing manager, and Bill a cameraman who was donating his time. Don even brought his grown daughter who turned out to be a wonderful distraction for Grace. They shot footage all around the house and the discomfort of wearing the microphones was minimal. They shot us looking at movies on our computer, they shot us in the yard and then we settled in for the interview. Don Shelby made us feel very comfortable, and we were able to tell our story to one sympathetic interviewer (and a camera!) which was a lot easier than a room full of people. After the interview was over, we all had lunch and we spent some time with Don looking at pictures. He was very kind to us both on and off camera, and we are grateful for his patience and understanding.

Tony also asked us if we would come on stage at the gala with Don after the video played and perhaps say a few words after he acknowledged us. Our concern was that it would be hard to know what to say without seeing the finished piece. Thankfully, as we arrived in Minnesota on Friday, Tony met us and told us that we could see the DVD at his house. We were blown away. They chose all the best pictures of Max and the footage of Grace was edited so well with our interview. They had put our material across two segments. Everything was tasteful and dignified and we found ourselves caught up in our own story. It was very emotional. In addition there were also some very powerful pieces made about "The House That Love Built" in honor of the 25th anniversary and these were very moving.

After we killed a couple of hours at the hotel, we got dressed up -- Grace was so very proud to wear a ball gown -- and headed off the the gala. They had a huge ballroom decorated beautifully inside and out. Grace had a blast just watching the drinks being poured through an ice sculpture. Outside were tables of silent auction items and inside were tables for the guests and a stage for the speakers and band. The show began and it was a mix of emotional videos and sincere expressions of gratitude to so many generous donors with exciting live auction items. A puppy even went for $4100! As our videos played it was breathtaking to see our beautiful boy on screens so big. I know my heart was pounding and I'm sure Margaret's was too. It was such a relief when it was over and we could see so many people touched by Max's story. We still had another video to go and some more items went for auction. Some people around us leaned over and thanked us for telling his story. This made us feel really great.

Before I mention how the second video went I want to mention Rowan, Grace's friend from a year ago who was back for her brother's check-up. Her family is from Egypt and it is such a long trip for them. Rowan was so thrilled to see Grace and her mom told us that Rowan still had the picture Grace made for her the night before we moved out of the house. It was so nice for Grace to see her friend and to have a buddy in an otherwise adults-only event. It was also great to see Bryanna, a little girl whose treatment for cancer has lasted over a year and was about to begin a kidney transplant from her Dad. We wish them well.

As the second video began, I started to wonder why we were chosen to be the guest speakers. After 25 years, surely there were "happier" stories to tell, things that would better show the "success" of the house. But I realized that our story rightly emphasized the true mission of the Ronald McDonald House, to be the support for the FAMILIES of terminally ill children, and we are certainly very appreciative examples of this goal. The second video played and ended with Margaret's beautiful words of how in the context of confusion and turmoil that has been our year, the only thing that makes sense is the Ronald McDonald House. The only thing that matters is how you treat people, and the shining example of that is the staff and volunteers of the house. The crowd applauded and Margaret, Grace and I got on stage. Margaret said a few more words of thanks and then I introduced the Adopt-A-family Program. They were hoping to get 48 audience members to stand and pledge $500 each to adopt a family at the RMH during the holiday season. We were really touched when 81 people stood up. This part of the evening raised $40,000 and for that we are so very proud of our son.

Overall, the experience was quite overwhelming. For the rest of the night people approached us to thank us for sharing our story, to say what a beautiful boy Max was, and to wish us well. For the most part, Grace was unaware of how emotional the night was for us. Grace was more worried about Rowan seeing her waving on stage than she was about anything else. And truthfully, we were glad for that. Too much of Grace's innocence has been lost already and we were happy to see her having fun.

After the videos and auction, a band headed up on stage for some dancing and entertainment. Grace was looking forward to this part of the night, and she stood right in front of the stage doing her best "moves." She really didn't want to dance with anyone, only herself, and was quite annoyed that many people, having recognized her from the video, were coming up to her and patting her on the head. "People keep doing stuff to me!" she said in a huff at one point. But she was more than thrilled when I began to throw her up in the air during a few numbers.

Since the gala itself was so emotional, we decided against visiting the hospital, although it would have been nice to see many of Max's caregivers. Instead we opted to take Grace to Camp Snoopy at the Mall of America. She had a great time riding all of the rides, and left with a new Enchanted Princess doll from the Disney Store. The trip was both difficult and rewarding, sad and joyous. We are really glad we went.

The coming weeks are expected to be very busy. Halloween is fast approaching and with that Grace's annual Halloween party. Grace had one 2 years ago when Max was just a few months old, and great fun was had by all. Max, appropriately donned in a Superman costume, slept through the entire party. Last year we were in MN for Halloween, enjoying a great party at the RMH and suffering great heartache at the hospital. Mike's little sister, her husband and new baby will be visiting us for Halloween. We are all so excited to see them, and meet the newest addition to the family. In addition to the festivities in our house Grace has parties to attend at another friend's house, ballet, school, Mike's office, and our local RMH. We are sure to have candy coming out of our ears! Also somewhere in the middle of it all we will be attending another concert by Grace's favorite rock star. No wonder we are tired!

Thank you so much for checking in on us. Sorry for the lengthiness of this update. Happy Halloween!

-Margaret, Mike and Grace

2nd Birthday Eve

2004-07-06T21:30:00.000-05:00

It is the eve of what should be Max's second birthday, and words cannot begin to describe how much we miss him. We should be helping him unwrap his birthday presents, not struggling to pack up his room.

The events of Max's birth are still so very clear in my mind. People had been commenting on how big I was. A stranger at the store had said a few days earlier that I must be due soon. I guess she was right. The night before his arrival Mike and I were watching a movie when my water broke. I was only 31 weeks pregnant at the time, and we thought we knew how serious the situation was. I calmly called the doctor, got dressed, and we drove to the hospital.We stayed calm throughout, and I remember feeling like my life was taken out of my control. There was really no point to panicking, it would do no good or change what was about to happen. Moments before his birth we decided on his name. It was between Matthew and Max, and we chose Max because it sounded tougher and we knew he had a fight ahead of him.

Max was born at 4:48 PM. They took him from me immediately, and all I could see was the back of his head and that beautiful, thick, dark hair. We heard a very tiny cry, and that reassured us. We were so surprised to hear he weighed 4 pounds, 15 ounces. The doctor had predicted he would only be 3-4 pounds. As the doctors continued to work with me I could see the team of doctors and nurses working on Max in the back of the room. One nurse snapped a polaroid picture and brought it to Mike and me so we could see what Max looked like. Before they whisked him off to the NICU they stopped his incubator by me so I could see him in person, and touch his tiny little fingers. He was intubated, and his chest was covered in electrodes. He was beautiful.

It was a few hours before they would let us up to the NICU to see him, and it was over a week before I had the privilege of holding my son. Many of the nurses referred to him as a "big boy." Though he was tiny to us he far out weighed many of his NICU neighbors. His hair also endeared him to many on the staff. We'd come in to see him, and the nurse would say "I couldn't help myself, I gave him a bath and just had to spike that hair up." His hair fell out a few months later, and thinner, lighter hair grew in, only to fall out once again during chemo.

Last year we planned Max's first birthday party knowing that it could be his last. We were to leave for transplant soon after his birthday. For the party we made a poster with a picture of Max from his NICU days and a picture of him at 1 year clapping his hands. The poster stated, "what a difference a year makes." I think about that poster all of the time now. So much can change in a year.

Max entered this world much like he left it - too early and hooked up to too many machines. But unlike his birth, at his death I had the honor of holding him in my arms. Sometimes I think he was taken because I wasn't good enough to have had someone as special as he. Other days I wonder how I got so lucky to have had him for only just a short while. It was a privilege to be his mother.

I have so may birthday wishes for you, sweet Max. I hope you are having the most wonderful party in heaven, joined by your friends who also left this world too soon. I hope they have apple-strawberry-banana baby food, piles and piles of Cheerios, vegetable crackers, breakfast bars, Carnation formula and apple juice. I hope they have a Baby Einstein movie marathon, and your most favorite toys for you to chew. I hope there is a little electronic piano for you to bang on. Grace tells me there is a mom in heaven who takes care of all the babies, and I hope she is letting you hold her fingers as you do lots of laps around the dining room table. I hope she plays clap-clap and sings your favorite songs in your ear (No, No, No, You Are My Sunshine, and the prepositions song). I hope you have someone like your sister to make you laugh. I hope you like the balloons Grace is going to send up to heaven, and the pin wheel she just had to have for your grave. I hope you know how much you are loved by so many people, especially me, Dad and Grace. Happy Birthday beautiful boy.

April & May

2004-05-22T20:00:00.000-05:00

We haven't done a proper update for almost 2 months, so I will begin with a recap of April.

For most people, when they think of April 15th, they think of tax day. For our family it marks a much more significant event in our lives - the day Max was diagnosed with MPS.

On April 15, 2003 Mike and I took Max to a neurologist for the slight tremor he occasionally had in his chin. We noticed it the day he was being discharged from the NICU, and it was initially thought to be a reaction to one of his meds, or caused by an immature nervous system. It wasn't going away, however, so the doctor wanted us to see a specialist. We had to wait quite a while for an appointment, and we expected he was going to tell us it was a result of the brain bleed Max had at birth.

In the week prior to Max's visit to the neurologist Max had two other significant appointments. He saw an orthopedic doctor for the lump on his back, who diagnosed him with kyphosis. He also had his 9 month check up, where we learned his head had grown significantly. Max's head had always been large, and I remember one of the nurses commenting that preemies had to grow into their heads. I knew his head was getting bigger, as I had just purchased a new hat for him, but I wasn't that worried because he was a such a big boy.

I usually attended Max's appointments by myself, as he had many of them and Mike couldn't miss that much work. Thank goodness he came with me that day. I don't know what I would have done without him. I think we knew something serious was going on with Max, we just didn't want to believe it. We had looked up kyphosis in infancy on the web, and had read about Hurler. We dismissed it because it sounded too horrible to be true. How could it be true, as we had gone through so much to have him, and he had been through so much as a preemie already? And, we had already been to so many doctors and therapists and so far no one had suggested anything genetic.

The doctor told us he suspected MPS, and told us it would affect Max's mental and physical development. He did not, however, tell us it was terminal. Instead he let a resident print out the home page of the MPS Society for us, and sent us on our way to the lab. We almost couldn't breathe when we read the description of MPS. We called our families from the car. When we got home my mom and sisters were at the house with Grace. We sobbed the entire night. It wasn't until several lab mix ups and weeks later that we got the final diagnosis of Hurler. We never imagined that come this April he would be dead.

Of course, April also marked the celebration of Easter. It was much harder than we had expected it to be, and we missed Bubba greatly. Grace was treated very well by the Easter Bunny and his associates, as many people remembered her this year. Thank you all so much. We made dinner at the RMH near us, and it was a great success thanks to the help from my mom, sisters, brother, aunt and cousins. We also had a fiesta at the RMH for Cinco De Mayo. Thanks to my family and the Micucci's for your help with that, or should I say gracias?

Everyone who reads this site knows how grateful we are to the RMH in MN. We were extremely honored to be a part of two publications by the house. Max and Grace's pictures appeared in the RMH newsletter and pledge card. I really hope their faces inspired a lot of donations - who could say no to those smiles and dimples?

May was not lacking significant events either. Although, when your child is gone most dates become significant. We celebrated Mother's Day on May 9th, and Mike's birthday on May 10th. What better way to celebrate than by running away from our troubles? Thanks to some secret planning by Mike and his accomplices, we were able to take a MUCH needed trip to San Diego! Mike and Grace presented me with a locket containing Max's pictures before we left. We wanted to get most of our crying out of the way before our vacation.

TRIP RECAP: We spent 4 very quick days in San Diego and it was beautiful.
We stayed at an amazing resort on Mission Bay and we swam every day in the heated pool. The grounds of the resort were spectacular, modeled after a tropical paradise, and the foliage and flowers were gorgeous. We felt a million miles away from Illinois. We spent Saturday exploring the resort and jumping on the bed. Sunday started with a great Mother's Day brunch and a trip to Legoland. We discovered that our little princess LOVES rides. Lucky for Mom and Dad's queasy stomachs, Legoland is rather gentle in the ride department. Grace rode on two boats, a safari jeep, two roller coasters, and was totally in her element. She loves Legos and she got to see so many sculptures that were almost too good to be true. The highlight was probably Mini-Land, an area that took 16 million Legos to build, and is home to reconstructions of New York City, San Francisco, New Orleans, Washington DC and so much more. It was a perfect day.

Monday all the frenzy of travel, swimming and running around caught up a bit at Sea World. Grace was less than impressed. The park and the shows were outstanding, but after Legoland, our little tyke sure was looking for some rides, and some weren't open, and some weren't opening until after Memorial Day. But we still had a good few hours and getting home earlier gave us a better jump on what turned out to be the highlight of our trip - our visit with the White family, our San Diego Hurler friends. We learned about their amazing daughter Susannah when her Mom, Amy, first spoke with Margaret before we ever went to Minnesota. We met Susannah, her big sister Madeline, and their parents right before transplant began, and they were supportive to us on a daily (and very-late nightly) basis. Amy was able to make it to Max's funeral, and while the outcomes of our respective transplants are very different, the level of understanding and mutual admiration was clear from the moment they welcomed us into their home. It was as if we were seeing family, and in way, we were. Grace plotted and played with Madeline like a big sister, and the way she talked about Susannah was another indication of the unconditional love she had for her brother. When we met the Whites last July we had an indication of what could be, and less than a year later, we saw what might have been. Both Margaret and I remarked that a hug from Susannah sure felt like our Bubba. Most Hurler kids look alike, but Susannah was very much a girl and while she didn't look like Max, she did feel like him. Thank you Amy and Klane for your extraordinary generosity. Tuesday came all too quick, but we squeezed in a short drive up to La Jolla and had a great lunch and a little trip to a rocky beach before we had to head home.

Returning home was very hard. It was as if we had just pushed Mother's Day back a few days. We also learned that Niki, a beautiful girl with Hurler undergoing a transplant in Chicago, had passed away on Mother's Day. Our thoughts and prayers continue to go out to all the families affected by all aspects of this disease. We want to say thank you to everyone who sent messages on Mother's Day. It really means a lot to us, and it really helped us get through the week.

This week marks the 6 month anniversary of Max's death. I am sure it will be very hard for all of us. We have been attempting to pack up Max's room. It is unbelievably hard, but we are slowly getting it done. We have also made some very good progress sorting the 100+ envelopes we have received from our insurance company. We put it off as long as we could, since every charge is a reminder of the countless procedures Max had endured. We are already worried about making it through Max's birthday in July.

Some of our friends in the Hurler community sent us a flowering tree which we planted in our yard in Max's memory. They told us about the tree after Max died, but of course you can't plant trees in Chicago in the winter, so they had it delivered to our house a couple of weeks ago. It is a beautiful reminder of our beautiful boy and the wonderful friends we have met along this journey. Our green-thumbed friends Chris and Craig (the web-mistress and master of this site) have offered to help us plant some flowers near the tree to create a little memory garden.

Now on to Grace news ...

As many of you already heard, right after our March update we took Grace to her very first (kids) rock concert! Ralph, of the Ralph's World CD's, held a kiddie rock concert in a bar close to our house. Don't worry, the bar was made kid-friendly, complete with a carpet to dance on and juice-box serving waitresses. Grace danced the entire time with her friend Mary. We enjoyed watching her so much, and were swept away from everything for a brief period. I can actually say it was the first time I felt pure happiness in a very long time. Once I realized I was happy of course my eyes welled up with tears and my heart ached for Max. Soon after the concert we realized Grace had developed her first crush. She talked about Ralph with a funny look in her eye, and stated "Mom, I don't want to be a doctor anymore when I grow up. I want to be a rock star!" I told Grace she could be both.

Grace is wrapping up the school year, and we cannot believe how quickly time has passed. Her best buddy Lindsey moved last week and over all Grace handled it pretty well. A little girl moved next door, and Grace of course is thrilled. They have yet to play together and we are hoping they will be well matched. Ballet is also coming to a close, and the class is preparing for their recital. We are hoping Grace and Lindsey can stop giggling for the few minutes they are to be on stage.

Thanks to all of our loyal supporters. Have a wonderful Memorial Day weekend.

Love,
Margaret, Mike and Grace

Mother's Day

2004-05-06T21:03:00.000-05:00

I am full of so many mixed feelings as this Mother's Day approaches. I miss Max more and more each day. And yet I feel so incredibly honored and blessed that I was chosen to be his mom for the brief time he spent on this earth.

Every day I think about how lucky I am to have Grace. (Even when she is driving me insane!) We are so fortunate that she was spared the health problems her brother endured. Like her brother, Grace was born prematurely, but she spent no time in the NICU. We are so blessed that she only carries Hurler and is not affected by it.

This Mother's Day I am also grateful that I wais able to meet so many wonderful mothers this year. All mothers work hard, but no one works harder than the mothers of children with chronic or terminal illness. How blessed am I that I have come to know such strong, loving and amazing moms! You are all such inspirations. I thank you for the example you set, and the friendship you have offered.

Happy Mother's Day!

-Margaret

Cold and Flu Season

2004-03-25T21:17:00.000-06:00

remember last year I waited and waited for the beginning of spring and the end of the cold and flu season. We wanted so badly to be able to take Max out of the house and be a "normal" family. I had no idea what was in store for us.

Much has happened this past month and the ups and downs of grief continue; if only the ups could be much higher and the downs not so deep. Last week I finally had the courage to call our social worker at Fairview to see if Max's autopsy report had been completed. A few days later I received a call from Dr. Grewal, Max's primary BMT doctor. We went over the report on the phone, which confirmed just how sick Max really was. I hesitated to give details in this update, partly because I didn't know if I could bare rehashing my beautiful boy's suffering, partly because I didn't know if anyone cared to read such a thing. But then I realized that we had the autopsy done to help other Hurler and BMT children, and this information could quite possibly help one of our readers. I will do my best to explain everything, and I hope I understood all of the information correctly.

As we already knew, Max was suffering from uncontrollable GVH of the skin and gut. The report revealed that his gut was SEVERELY damaged and scarred. In addition, his pancreas was enlarged (reason unknown), and his liver had excess bile from either GVH or TPN (IV nutrition). Hurler deposits (GAGS) were found in his coronary artery, but the deposits were not significant enough to explain his need for blood pressure pressers (the more likely reason was infection). As we knew, he had hydrocephalus (fluid on the brain). At the time of diagnosis, it was unclear whether this was caused by the brain bleed he had as a preemie, or by Hurler Syndrome. The autopsy showed Hurler Syndrome to be the culprit.

Two things found in the autopsy took the doctors by surprise. The first was the presence of cytolytic thrombi in Max's lungs. These are kind of like a stroke in the lungs. The doctors were surprised at this finding because they are not very common, and because Max had so many of them. They are only found in patients with GVHD, and often are misdiagnosed at first as fungus via a CT scan. They are definitively diagnosed by a lung biopsy or autopsy. They went undetected on Max's CT scans because of the bleeding in his lungs.

What frustrated us so much during Max's treatment was the disagreement between different doctors on whether or not GVH of the lung exists. Some argue that GVH of the lung does not exist because of the lack of apoptotic cells (cells which have self destructed), present in GVH of the gut and skin. Cytolitic thrombi are not referred to as GVH of the lung per se. However, they are treated the same as GVH. Some medical personnel think they are manifestations of GVH in the lung, others believe they are a separate entity. They also found bleeding in Max's lungs, something we also already knew, which also was the cause of death listed on Max's death certificate. While Hurler children are more likely to have lung bleeds during transplant compared to patients transplanted for other diseases, thrombi are not known to cause a lung hemorrhage, though in Max's case they may have been a contributing factor.

The other surprising bit of information learned from the autopsy involved Max's brain. More Hurler deposits were found in Max's brain than in any other Hurler child autopsied at Fairview, including those who were significantly older than Max. Theoretically, children older than Max at the time of death should have had more deposits since the disease had more time to progress. Dr. Grewal and Dr. Charnas, Max's neurologist, are very puzzled by this, especially since Max was doing so well neurologically at the time of transplant. They have pulled the autopsy reports of the other Hurler patients and will be reviewing them in more detail in hopes of learning something from this.

Where does all of this information leave us? I wish I could say we now have total closure, but that is not exactly true. We do know that we made the right decision to withdraw life support. Dr. Grewal said that knowing how sick Max was he feels that they did not have the technology to save him. We could see that he was suffering greatly, the autopsy showed that he was suffering more than we imagined. Our hearts are forever broken at the thought of this, and we will never understand why such a beautiful child such as Max had to endure so much. The world simply is not fair.

One thing we do know for certain is that Max was stronger and more determined than we realized. Because he was born so prematurely, we held our breath for every developmental milestone. We were filled with sadness, as we knew he was further behind than he should have been. Then he was diagnosed with Hurler and we realized how much he was overcoming. In some ways his diagnosis set us free, and we were able to enjoy what he could accomplish each moment, instead of worrying about what he wasn't able to do. Now that we know how severely his brain was damaged by Hurler, we are even more proud of him. Max was born 9 weeks early. He had a brain hemorrhage at birth. He had asthma. He had all of the problems associated with Hurler Syndrome. His brain was filled with Hurler deposits. Despite all of this, before transplant he was pulling himself to stand and walking along the furniture. He was sitting and crawling. He knew how to feed himself, and give hugs and kisses when asked. During chemo he mastered pushing to sit from his belly. He was a star and we knew it, we just didn't know exactly what he was battling in order to perform all of these tricks. He had amazing will and spirit and we are so very proud. We are also thankful for his three therapists who worked with him each week to help him gain these skills and have a better quality of life.

This weekend we were able to summon the strength to finally go and purchase the marker for Max's grave. We didn't do it after he died because it was winter in Chicago and they cannot be placed in the frozen ground. How we wished we had made the arrangements back in November, when we were somehow possessed by people able to make life and death decisions. We put it off as long as we could, but now that the snow finally melted we knew it was time. Grace picked out the color (we had to steer her away from pink), and the stone will read "Our Brave Boy, Max Ciacciarelli." We also ordered a ceramic tile with Max's picture on it to be placed on the stone.
Now on to Grace news. This month was busy for her as well. It started off with parent-teacher conferences at preschool. Mike and I both went, and were most proud when the teacher told us what a lovely transition Grace made into the class mid-year. Other parents have commented on her social skills as well. We are so lucky to have her, and so lucky that she is so adaptable. It certainly helped throughout the past year. Grace's teacher also told us that she talks about her brother all of the time, and seems at peace with him being in heaven.

Grace recently gave us quite a scare. She had the stomach flu last week like half of her preschool class and then she caught a cold. She developed a pretty bad cough and the next day she started breathing fast. I called the doctor and she told to me try a few things which I did and they seemed to work. Then right before bed it happened again. It was if she had just run a race when all she was doing was laying in bed. At first I thought I was overreacting or imagining things but then Mike got home and told me I wasn¹t crazy.

We took her to the ER which was stressful for all of us. Grace told me recently that if you go to a hospital you don¹t ever get to come home again. She must have been so scared, but she was really brave. She got a breathing treatment, which is a really simple thing, but was hard for Mike and I to watch. They gave her the same oxygen mask Max had several times in the hospital. She also got a chest x-ray (something Max had one or more times a day). She handled it all really well until they swabbed her nose for RSV then she cried her eyes out (I don¹t blame her).

The x-ray showed a little pneumonia, though her pediatrician said it was borderline and could have just been bronchiolitis. Her ear was also infected. We stayed up all night in shifts watching her breathe. We were so freaked out, and I think I was nearing a nervous breakdown at one point. You would think with all we have been through that this type of thing would be no big deal to us, but it was extra scary I think.

The other day I had to break the news to Grace that her life-long best friend and next door neighbor was moving. Some of you may remember our neighbors who ran the awesome Mighty Max raffle, and who have been so helpful to us this past year. When hearing the news Grace immediately began sobbing. Her brother died, her cousins moved to Maryland and her best friend is moving soon as well. I think sometimes it is just too much loss for one 4 year old to bear in such a short period of time. She calmed down when I told her they would only be a short drive away, and she seems to be okay with things now. She loves her friend so very much, and we are so grateful to have had such wonderful neighbors for the past four years. Though we are sad to see them go, we are glad they are not going too far. They are really great people who deserve every happiness in life.

We are so sad that we lost our son, but we are most sad about Grace losing her brother. Being Max's big sister brought out so many wonderful things in her. He was so much entertainment for her. He was her buddy, her Bubba. When discussing lucky things on St. Patrick's Day Grace listed not having Hurler Syndrome and getting to be on earth as her lucky things. While we realize Grace probably understands the important things in life better than most adults, we often wish she could be a "normal" four year old for a day and list some things like her classmates did - toys, money, and treats.

Before I end this rather long update I must also extend our deepest thanks to those who made contributions to the RMH in MN in Max's name. Because of your donations, we recently learned that Max's name was placed on a tile on a wall at the house. On the tile is a glass heart, and a replica of the heart was sent to us as well. It is such a nice way to honor Max's memory. The RMH truly is the house that love built.

Thank you to everyone who continues to check in on us. It means so very much. Happy Easter and Happy Spring!

--Margaret, Mike & Grace

Why Not Us?

2004-02-22T00:07:00.000-06:00

It's hard to know how many people are still checking in on us these days, but the smattering of encouraging notes on our guest book tells us that some of you have been very patient with us and and are due for some news so here it goes:

There isn't a day that goes by that we aren't brought to an emotional standstill as we feel the full impact of the loss of our son. Some days this is felt like an impending storm, clouds swirling and no sun. Others it is a brief but powerful rain shower in an otherwise bright day. What brings these moments on is hard to explain. Sometimes it is just the emptiness itself, the void that remains because part of us is gone forever. Other times it is a thought, an idea, of the future that previously would have included him, but now in that moment only includes the notion of him not being there. In fact, this (second, unintended) future is the hardest part to bear of all because, well, we live for our kids. We are secondary to them. Our future, and every facet of the future was being driven by the very presence of our children, one of them very sick, and every idea for what comes next is an idea that, however interesting or exciting is also one that can only be achieved because of what is NOT there. Since Max died there hasn't been one thing that we have done that was like what we did before. His presence was that focal to our lives. His needs were great and he was the axis around which the rest of our lives spun. Without him, we have been doing our best not to spin out of control.

Our last month and a half has included lots of busy work - better to keep the mind active so as not to get pulled by the undertow of grief. I've returned to a very busy schedule at work. Margaret has been on a home improvement binge, organizing and cleaning and trying to catch up on all of Max's medical and insurance concerns (a task no grieving mother should have to do). Though it comes at the same time every year, our anniversary seemed to arrive this year in a most suspicious manner. It felt like a challenge, like it was daring us to do something good for each other when neither of us felt like it. But we did manage to have a nice day and we were able to realize that 8 years of marriage is an achievement for any couple, but for all that we have been through we have a lot to be proud of. Having read so many accounts of the difficulty this sort of emotional trauma can cause in a marriage we feel fortunate to be able to lean on each other, and to balance each other out as needed.

Finally this brings us to Grace, now four years old and wise beyond her years. It is in her that we find our greatest joy and our most searing pain. She carries in her small heart such enormous love. She talks about her brother constantly, often to strangers and speaks truthfully and matter-of-factly. When her schoolmate introduced Grace to her younger baby brother, Grace told her, "I have a baby brother who is 1 named Max who died!" With us, the comments range from the nostalgic "Remember when Bubba used to drop all his spoons off his high chair?" to the brutal - "I don't want to wear my 'Supergirl' tee shirt today, Mommy. I'm not a super hero, I didn't save anyone. I didn't save Max." But by talking about him so much she is bringing his wonderful light and smile out again. Driving home the other night she first was upset because Max's star stopped "following" our van. But then she thought about it and guessed that Max probably knew a shortcut. She was so excited to see his star when we came home. Her joy for her brother is the definition of bittersweet. We celebrate the amusement of these moments, but we are crushed by the reality that had he lived, what a wonderful team they would have become.

Which brings us back to his loss, and what to make of it. When we were watching him deteriorate every day, when we saw all the equipment come in and out of his room every day we had to be so narrowly focused on his progress that we had very little time to place his situation in the context of his disease or in his process. But since we've left Minnesota, of the children who we've been following closely, we have seen much more suffering than success. The lesson we learned the hardest is that life is not fair. And for so many families of terminally ill children, that lesson is learned over and over again. There are just so many sick children. We have come to realize that the question is not "why us?" but rather "why not us?" as such tragedy can happen to anyone.

In addition to all of the amazing Hurler families that we have on our site, we would like to turn our readership to the following families, all of whose hospital stay were concurrent with or overlapped Max's:
Saralee - (AML) - what a fighter, over 60 days on a vent http://www.caringbridge.org/mn/saralee/

Marshall (Fanconi Anemia) - one of two children in the same family with Fanconi who we met at RMH http://www.caringbridge.org/la/marshall_n_amelia/

Dylan (JMML, passed away February 11) http://www.caringbridge.org/mi/dylan/

Tom (Fanconi Anemia, passed away February 17) http://www.caringbridge.org/ri/tom/

Cade (Fanconi Anemia, passed away February 18) http://www.caringbridge.org/nc/cadesmith/

In addition, we would like to invite as many of Max's followers to Christopher Joseph's site, he is a boy with Hurler just like Max and he is in the thick of the tough days of transplant at Johns Hopkins: http://christopherjoseph.com/

A boy who lives not too far from us has a rare disease called adrenoleukodystrophy (ALD) and his progress is being recorded at: http://www.hultmanhome.net/

We would like to extend our most sincere thank you to everyone from Fairview University Hospital and the Ronald McDonald House of the Twin Cities who reached out to us with notes about our son. Our time there will be remembered for so much more than our greatest tragedy, it will also be remembered for so much goodness, personified by so many of the staff of the hospital and the RMH.

Finally we would like to direct you to check out the updates for Max's little buddy Susannah White. Her Mom, Amy helped us through many long nights at the hospital with supportive phone calls and Yahoo instant messages. She has written a beautiful tribute to Max on her site and we hope that all who came to know our son take the time to read it. Thank you Amy for being such a good friend and a champion for our son.

Until next month ...
Mike, Margaret, and Grace

The Holidays Came and Went

2004-01-11T00:17:00.000-06:00

It is so strange not to start an update with the number of days post transplant and Max's white blood count. But then again, life is strange these days. We are doing well, as well as can be expected, maybe even better than some people expected. We miss Max more and more every single day. I really do not think we will ever get used to the fact that he is gone.

The holidays came and went, and we celebrated for Grace. Without her I do not know where we would be. With the help of my brother, sisters and two of my sister's friends we cooked dinner at the Ronald McDonald House near Loyola Medical Center (where Max was born and lived in the NICU for almost 6 weeks). At first it seemed like no one was going to show up to the meal and we were very disappointed. But then more and more people started arriving from the hospital and it was a success. The families were very appreciative. We were so grateful to have the opportunity to honor Max in that way.

For some very strange reason, New Years Eve was harder than Christmas. We have never celebrated New Years before, it was just hard to accept the fact that we were moving into a new year without our son.

Mike returned to work on Monday the 5th after being off for 6 months. We were SO FORTUNATE that he was able to get the time off to be in Minnesota with us. Mike would have never forgiven himself had he missed that time with Max. We spent the past month catching up on some Mike and Margaret time and Grace time. Even though we were all out in MN, we were rarely together, since one of us was always at Max's bedside. To have this past month, with only each other and our daughter has been a very special time. Mike and I saw a few movies and even went to a play. It almost seemed gluttonous to have so much time together. We took Grace to museums and new restaurants, and we spent a lot of time with family and friends. Right before Max died Mike and I took Grace to dinner while Mike's mom and Aunt sat with Max. It almost seemed like this past month was an extended Gracie date and someone was sitting with Max. At times we feel like we should be able to walk out our door and walk over to Fairview hospital to be with Max like we did so many times in MN. Mike's return to work ended the unspoken fantasy land we have been living in the past month. Now it is back to "life as usual" and we keep wondering how we can ever feel normal again.

Grace has been doing well. She talks about her brother all of the time, to anyone who will listen to her. She struck up a conversation with a woman at the bakery about Max, she told a woman waiting for an elevator at the museum about him, and she told a woman at the mall with a son the same age as Max '"my brother died in Minnesota, " leaving the woman a little shocked. Most times she is much more articulate than that. She explains that he was very sick, that we had to move to MN, and that he is in heaven now. When her friend asked her "how is Max going to get better, how is he going to get back from heaven?" Grace explained that Max was already better in heaven and that he was not coming back. Her eyes then filled with tears.

Grace started school this past week and attended her second ballet class. You would think she would be a little scared, especially since all of the kids have been in school for months, but not our Grace. She went in and made herself at home, barely taking the time to say goodbye to us. This week will be busy, as her birthday is coming up and Thursday will be her day at school to pass out treats and do Show and Tell. It is so hard to believe she is turning 4. While she's at school twice a week I will have some time to myself. I feel like I should be spending that time with Max, taking him to therapy, or just enjoying him. Instead, I will try to catch up on things around the house and maybe do some more volunteering. For now, distraction seems to be our best coping strategy.

We want to extend our warmest thanks to those who have continued to check in on us. It means so very much, and it truly keeps us going. We are very behind on thank you cards and emails and for that we are very sorry. Speaking of keeping in touch, I have misplaced our address book and therefore have lost all of our contact information. To our family and friends (especially our friends in MN), please send us an email with your number and address so we can keep in touch.

Take Care and Happy New Year,
Margaret, Mike and Grace

Our Mailbox Has Been Full

2003-12-20T00:19:00.000-06:00

The holidays are here and we are preparing the best we can without our son. I've been thinking for a long time about what to write in this space. It's hard to know if people are still reading, but it's been a few weeks and even if there's no one to read this, it will do some good to get some things down.

Surely people want to know how we are doing. I think we are dealing with things well. We have our moments (sometimes much longer than a "moment"), but overall we are doing well. Other families who have been through our horror have reached out and been very helpful. Thank you, and yes, you are the only people that can truly say "I know how you feel." We still have no regrets for the decisions we were faced with at the end of Max's life, but we will never understand or be able to justify the suffering that he endured prior to his final peace.

Our mailbox has been filled since we've been home, first with sympathy cards then with a mix of sympathy and holiday cards, and now mostly holiday notes. We have to say thank you to all of you who did take the time to write to us. Many of you couldn't make it to Max's services and we know from your cards how much you care. Thank you. Special thanks to the nurses and therapists who wrote from Fairview. Such a simple gesture, but such a deep impact. We miss you all. Many of you have written that 4A is not the same without us, and that is very kind. We would give anything to be back with all of you.

I'm still not back at work and Margaret and I have strived to make the most of this extended generosity (thank you Optimus!) to spend special time with Grace. We have been to the Play Zoo, the Children's Museum in Oak Park, brought her to her school and ballet classes (both begin after the New Year), gone on a carriage ride downtown in Chicago, and we've had great mommy-daughter or daddy-daughter time out shopping for each other. This time with her is very special. Since Max was born she has been cared for with less direct attention, and it is a pleasure to focus on her as a beautiful little girl and not as "the sibling" of her sick brother. She sure misses her brother, though. She talks about him every day and night. She even made a pretend call to heaven on the phone (only she knows the exact number). We try to have our breakdowns away from her, to lessen her burden. But she too is hurting, and we think hurting rather deeply. She doesn't ask "Why?" thank God, because that's unanswerable. But she does miss him. And she's lonely. She spent the last five months with other kids accessible by walking down a hallway or going to an event at the Ronald McDonald House. So now she's home, and her friends have their own schedules, and they live down the block, and you can't just knock on their door.

And then there's my sister. Unfortunately for us, especially for Grace, my sister moved to Maryland. Her husband began a great new opportunity and they left this week. Grace had really enjoyed the time with her three cousins since she's been back, and it's a blow to have that loss on top of Max. We know that they're going to do great in Maryland and they've got each other to lean on, but Grace is lonely without her brother and now without her cousins. Hopefully she can make new friends, but it will be hard for us to establish friendships with people who have no understanding of what we've been through. That's why the loss of family at this time creates such loneliness. But we have to persevere because the reality of life for us is that the overwhelming majority of people in our life will have no understanding of our pain and suffering.

We've been slowly going through Max's things and his room and some of the stuff that was "easier" to pack up and donate was given to a family that we heard about through Max's therapists. They have a little baby who was born at 24 weeks and has made it home from the neonatal unit and the family has sort of been "adopted" by the nurses and caregivers at Loyola. We feel good knowing that Max is helping those in need during the holidays. And in that spirit, Margaret volunteered to cook Christmas Eve dinner at the Ronald McDonald House near Loyola. We will be spending the whole day there, decorating and cooking and it's the best way for us to think of and support the Ronald McDonald House family that supported us so wonderfully. It will be good for our souls to be there.

We have encountered our fair share of "weird reactions" to us. People who can't look us in the eye. People who didn't call or write until Max was dead now feel "terrible" and want us to relieve their guilt. People who say incredibly inappropriate things, etc. We know it is hard for people to be around us. They do not know what to say or do. But as hard as it is for people to be around us, it is SO MUCH harder to be us. Anyone who has followed this journal knows that we are not going to fall apart at the mere mention of Max's name. In fact, we love to talk about our wonderful son and the wonderful people we have encountered the past 6 months. Please do not be shy, we are not. Some people we haven't seen or talked to since we left are acting as if nothing had ever happened, like our beautiful son never existed. It is crushing. We've tried to stay positive. It is very hard to find the silver lining in a storm cloud. We did receive some generous meals from our friends and family and while it might seem like a small gesture, it is truly the nicest thing you can do, and it means more than you all know.

We've tried to keep up with the other families whose stories have touched us and we've been reading of families having to spend the holidays without their children and families who know that their child's life is their best Christmas gift. Our thoughts are with all of you. Please know that while we may be writing less, we will be checking in more as our lives stabilize. We hope that Max's spirit and giant heart are looking down on all of you in
whatever situation you may be in. We hope that people reading this
continue to check on the other families that check on us.

An Eleanor Roosevelt quote read on a Christmas card:
"Yesterday is history, tomorrow is a mystery, today is a gift. That's why they call it the PRESENT" Please consider sharing your gifts with others.

While nothing can justify Max's suffering and death, we would like to know that good things have resulted from it. PLEASE consider volunteering. Support your local Ronald McDonald House (cook a meal there, drop off food, collect pop tabs and donate them for recycling). Write to the guest books of Max's Hurler friends. These are such small sacrifices that mean the world to people going through similar situations to what we went through.

It's not what's under the tree, it's who's with you when you get there. We miss our Max so much. Please hug your kids and celebrate the joy, recklessness, and terror of children at holiday time.

Merry Christmas to all, and love to all,
--Mike, Margaret, and Grace

Day By Day

2003-12-07T00:20:00.000-06:00

The days following Max’s death were a scramble. Maybe it’s best to go day-by-day:

Wednesday, November 26
Following Max’s death, we were able to get him dressed and have some time with him. Margaret and Anmarie bathed him and it was amazing to watch the love and care from both his loving mother and the nurse who spent the most time with him. The entire experience at the hospital was always so respectful and to the end the care shown by Anmarie and all those who were needed to help with all the equipment and machines showed tremendous respect. Thank you. After a couple hours, Grace, Grannie, Auntie Bethie, Auntie Katie and Grandpa J. came over and sat with Max for the last time at the hospital. Grace came in first and climbed right in bed with him. She asked “Where’s Kendall?” because she thought that if Max was in the room and he was dead, then the other angel that she knew should be there too. She gave him kisses and was very loving. As time passed, more nurses came in and were so nice to us and told us how much they would miss Max. A few of his doctors came in and told us we had done all we could. They have to say that, but it was nice to hear at that moment. At around 3:30 in the afternoon, we slipped out, carrying the last of his stuff from the room, and entrusted Anmarie to follow Max’s body to the morgue. Max’s autopsy was scheduled as well. We hope with all our hearts that something can be learned from Max that will help other children suffering from Hurler Syndrome and all other children undergoing.

Thursday, November 27 (Thanksgiving)
We began to make the funeral/visitation arrangements over the phone, and we are thankful to both Grannie and Pat Micucci for making most of the phone calls for us. We decided to drive back on Thanksgiving because spending the holiday with all the other families at RMH would have been difficult emotionally. Aunt Eileen and cousin Jenny jumped in their car with no notice on a holiday and drove their van up to get the rest of our stuff. We left at around 4 and got back in great time because there wasn’t really anywhere to stop on a holiday. Grannie, Katie, Aunt Eileen and Jenny all drove back the same night and got to our house at around 5am.

Friday, November 28
Most of this day was spent trying to recover our house. We found the emotion of the homecoming to not be as overwhelming as we feared. There were some signs of our little guy throughout the house, but these conjured up all good memories. Max’s life in Illinois was pretty good; it was in transplant in Minnesota that he suffered. We found a house that still had stuffed closets even though we had been wearing clothes and playing with toys the whole time in Minnesota. It was clear that we needed to do some house cleaning. Margaret and I started to bag and box up lots of old stuff for donation, and we cleared out a lot of Grace’s toys when she wasn’t looking. Our neighbor Jodi was nice to take Grace for most of the day so we could get so much cleaning done. Grace was happy to see her old neighbor girlfriends, Lindsey and Megan. Max’s body meanwhile was being autopsied.

Saturday & Sunday, November 29 & 30
This weekend we got a lot of errands done related to the funeral with a lot of help from Grandma and Grampa Chick. Grace spent some time with her cousins and we were able to meet with the funeral parlor and church. The funeral parlor was very helpful in quickly setting up a lot of the arrangements. They did not have a lot of suggestions for readings in regard to the death of a child so we were eager to speak to the priest. When we met with Father Kilbridge on Sunday, he remembered baptizing Max and that was a comfort. He also listened to all of our stories about him and said he would read the big printout of Max’s story that we wrote. As he said, “This is a lot of information for someone only 16 months old.” That night we finished making the poster boards with Max’s pictures.

Monday, December 1 – VISITATION 5-8pm
In the morning we drove to the cemetery again. We had driven out on Saturday and seen the “Guardian Angel” section and we were a little concerned that it might not be right for Max because some of it was a little unkempt. But we were shown other sections and they just didn’t seem right. Max was a baby, and the Guardian Angel section is just for babies. It seemed right that he should be buried alongside other babies and we found a spot next to a nice tree that was open. The guy who we met with told us most people don’t even bother coming to the cemetery when babies die, they are just too overwhelmed or they want it over quickly. How sad. Later a good friend told us that when he saw all the colors on all the tchotchkes left all over the graves it was a beautiful, vibrant sight on an otherwise dreary day.

When we got to the funeral parlor we had only one concern: Was Max presentable? Because of his condition at death (scabbed over eyelids, broken down skin, etc) and the autopsy, we weren’t sure we would be able to have the casket open. But the funeral parlor did a great job of dressing Max and covering his wounds with make-up. He was wearing a red hat and they told us not to touch it so we obeyed. In the casket we put a picture of Max and his sister and a little stuffed stegosaurus that she gave him. The only other thing was a pair of min-boxing gloves because he had been such a fighter. He looked like our Max when you stepped back a bit. But up close, we could still see the suffering and we did our best to put on a brave face. As people arrived, we realized that it was as close to a homecoming party for us that we were ever going to get. We had both thought many times of the day we could show Max off after transplant and to say thank you for all the help. The outcome was as far from anything we could have ever hoped for, but we still wanted to show our son off. He had fought for so long and had been so brave, we thought we should match his effort and not break down if that was at all possible. But the truth is, it was so great to see so many people. People who had meant so much to Max and to us and to our ability to take care of him. Many of his pediatricians and therapists came and even nurses from his time in the NICU. There were flowers from all over the country, even from other Hurler families and from the MPS Society. There was a huge group of people from Mike’s job and we were able to say thank you for being so generous with his time. We saw so many comforting faces and it really helped for us to be able to have so much love in one room. We know Max felt so much love in his time here and we hope he knows it continued on after he passed.

Tuesday, December 2 – FUNERAL (10:30am)
This day was much harder. All of the positive energy from the night before seemed to lose steam as we saw Max’s body again. We both felt more overwhelmed by the reality of things and it really hit home when the casket was closed and put into the hearse. It was so small. We had four pallbearers (all of Max’s uncles) and they were nearly on top of each other. We went as procession to St. Vincent Ferrer and the pallbearers brought Max into the church. We saw the faces of people who weren’t able to attend the visitation and there was so much sadness. We could hear the voice of the soloist and it was beautiful. We would not have known anyone to sing at the funeral but the soloist was wonderful. She began with “I Am Not Afraid” which was strong and clear. At this time it bears mentioning Auntie Dana did a tremendous job with the program for the day, it looked great. Thank you. Father Kilbridge did a great job talking about Max and trying to find answers for his loss. The gifts were brought up by Jenny Birmingham and Amy White (two moms of transplant survivors for Hurler). What a wonderful gift to us it was to have such amazing moms at our son’s funeral. Thank you so much. After “Amazing Grace” (the perfect song for so many reasons), the emotion was very powerful. Soon it was our turn to talk, and Margaret gave the eulogy and Mike talked about what came next. You can read our words here:
Margaret’s Tribute
Mike’s Tribute

Then we hugged some more outside the church and went to the burial. Father Kilbridge was short and sweet under the tree and everyone put a flower (Thank you Chris for gathering them!) onto the casket. Then most of us went to a lunch set up by Auntie Dana and Uncle Geoff and it was our last chance to be with everyone in one room. Of course as always there wasn’t enough time to spend with everyone and say proper thanks.

We were so touched by the amount of support our son received. The amount of flowers (each one outstanding in its beauty), the amount of travelers, the amount of cards and notes was astonishing. Our son was a gift. So too has been the love he created. Thank you all so much.

That’s about all we think our audience can stand to read at one time and it’s about all we have strength to write. That said, we heard again and again about how people were inspired or encouraged by our writings so for all of you we hope this update will suffice for a time. PLEASE NOTE: We have also updated the “Max’s Story” Section of the web site found on the bottom of the home page. This summarizes Max’s journey for those new to the site, or those who want to review his short life.

Love to all,
Mike & Margaret

Max's Story

2003-12-05T23:58:00.000-06:00

Our son, Max Ciacciarelli, was born on July 7, 2002. But his story and his fight began in the months prior to his birth. In December of 2001 Max's Mom (Margaret) was scheduled for surgery to remove a suspicious lump from her breast. Things became much more complicated when she realized she was pregnant. Surgery was put on hold as the oncologist, OB and anesthesiologist weighed the benefits and risks of performing surgery. Eventually it was decided that we wait until she was 12 weeks pregnant for the operation. It was an extremely difficult and stressful time.

Margaret underwent surgery with only a local anesthetic to minimize the risk to the baby and thankfully the tumor was benign and the baby was fine. We were so relieved, and thought for sure that the rest of the pregnancy would go well (our daughter Grace, now 3, had been born 6 weeks premature). Even after the surgery the pregnancy would be high risk, but we thought we'd endured enough stress that fate would give us a break and a full term baby. We were very wrong. On July 6th Margaret's water suddenly broke and there was no stopping Max's early arrival. The next day he was born 9 weeks premature. He was on life support, but after 5 1/2 weeks in intensive care we brought him home. He had a feeding tube, heart and apnea monitors and began speech and occupational therapy. Soon the tube was out, the monitors were gone and he began to make slow progress.

Max had always been described as "floppy" with low muscle tone, which was attributed to the fact that he had an interventricular hemorrhage at birth. Winter 2003 was very long, as Max developed chronic wheezing whenever he got a cold. He began receiving daily breathing treatments and oral steroids as needed, similar to an asthma patient. He had tubes placed in his ears for minor hearing loss, and his slight far sightedness was being monitored. He remained delayed in his development, but we remained hopeful that he would outgrow his problems.

By 8 months it became apparent Max's back was developing abnormally. He was very arched when he attempted to sit, and he was referred to an orthopedic doctor who diagnosed kyphosis. At his 9 month check up his head was abnormally large. It became apparent that something more serious was going on with Max. A pediatric neurologist recognized Max's symptoms to be indicative of MPS. In May he was diagnosed with MPS Type 1, Hurler Syndrome.

Once diagnosed, our first response was devastation. Our early readings of the disease were of all of the gravest and most tragic kind. We learned that the disease had no cure and the children affected had very short life spans, within which there was extraordinary suffering. We spent time crying together and then we began to find some resolve to do our best to give Max the best life possible.

Our research began slowly, first by making contact with the National MPS Society and then by reading story after story. We came to learn that the latest most exciting treatment (Enzyme Replacement Therapy) was more appropriate for children with less severe symptoms. We also learned that if diagnosed prior to age 2, many children had been given successful stem cell transplants.

While the transplant carries risk, and has a less than perfect survival rate, we realized that if successful, Max would be able to enjoy some quality of life. By destroying the cells that lack the enzyme he needs, and by replacing them with cells that do, the progression of the disease would
be halted. There is a significant chance that Max may die or may end up
with chronic issues for life because of transplant, but without it, there is a 100% chance he will die.

Once we made our decision, the next step was to find out the best path for treatment. Hurler children are rare, and the total number of transplants worldwide is still extremely small. There are a few hospitals with more experience with others, but they differ greatly in their approach. Our goal was to find out which facility would be the best for our son. We were willing to go wherever we had to go to fight for Max.

Looking back, we can now see that a lot of Max's issues may have been early signs of Hurler. All of the doctors and specialists who were following the path of prematurity may have been a little too focused in one area, but we know now that their efforts to help Max "catch up" to his real age were also helpful in fighting the progression of his disease. In fact, the therapies (occupational and physical) he has been on have been helpful in slowing the progression of the disease compared to a child without these therapies.

So now at the time we write this, we have decided to undergo a transplant at Fairview Hospital. And we've decided to share our story with friends, family, and fellow families affected by this devastating disease. We are hopeful that Max's story will be an inspiration for many people and that his life will be one of determination and strength.

Max arrived in MN on July 19, 2003 to begin his work up for transplant. After a few delays, he was admitted to Fairview University Hospital on August 3rd and began chemotherapy the next day. Max's bone marrow and immune system had to be wiped out so he could receive his donor cells. After 10 days of chemo he was given a new chance at life when he received his cord blood transplant.

Contrary to what most people think, a stem cell transplant is not a procedure, it is actually a blood transfusion administered by a nurse. Max's transplant took less than 15 minutes.

In true Max style, he handled the chemo beautifully, with minimal side effects. In addition to destroying the bone marrow, chemo also attacks other cells in the body. He continued to eat well, had some but not too much nausea, and avoided the very uncomfortable mouth and gut sores that many patients get. As expected, his hair fell out but he looked adorable. He remained extremely active for a transplant patient, and even learned a few new tricks while in the hospital.

Then day +14 came. Fourteen days post transplant Max got horrible diarrhea and vomiting. A few days later his blood pressure became dangerously low and he had trouble maintaining his oxygen saturation. It became obvious that Max was septic: he had an overwhelming infection in his body of unknown origin. They began treating the mystery infection with everything they could, and they medicated Max so his heart would pump more. A few days later, just when his blood pressure began to stabilize, Max's lungs became flooded with fluid and he ended up being put on a respirator. A bronchoscopy of the lungs showed bacteria known as VRE was growing. Because of this, from now on, anyone who entered Max's room had to wear a protective gown and rubber gloves as to not spread the infection in the hospital.

During the time Max was on the vent, we received two pieces of information. He was 100% engrafted with donor cells and his body now had the enzyme he so desperately needed and lacked because of Hurler Syndrome. However, he was suffering from Graft vs. Host disease (GVHD), whereby the donor cells were attacking certain parts of Max's body. His skin, gut and liver were under attack by his new immune system.

After almost 2 weeks on the respirator, the breathing tube was taken out and Max was left to breath on his own. Soon after, he began treatment for the GVH with a drug called ATG Max suffered a massive asthma attack. Despite all efforts to try and stop it, Max had to be intubated a second time.

During his second period on the vent his skin and liver began responding to the GVH treatment, but his gut did not. For weeks he stooled massive amounts of straight blood. But, his breathing steadily improved and a little over a week later he came off the vent once again.

Despite intense Respiratory Therapy, after about 7 days breathing on his own he began wheezing again. The doctors tried all possible treatments, but after 5 more days of working extremely hard to breathe, Max was intubated for the third time.

What was so strange about his third intubation was that his wheezing stopped after the breathing tube was inserted. This led the doctors to believe Max had an upper airway problem. After 6 days on the vent, Max was extubated once again and an ENT scoped his throat. No upper airway obstruction was found. He was doing well breathing on his own, but he began to shake and move his arm randomly. He had a glassy look in his eyes and was unable to focus on anything. He had this look during intubations 2 and 3, but this time it was worse. An EEG of Max's brain activity showed he was having continuous seizures. The cause of the seizures was never pinpointed, but some possibilities were drug toxicity, hydrocephalus or the GVH.

Despite the seizure activity and medication to suppress it, Max’s breathing had improved to the point where he was receiving very minimal oxygen support via a nasal cannula. But one morning after a breathing treatment Max experienced a pulmonary hemorrhage. His lungs were bleeding, and he had to be placed on a vent for a fourth and final time. The next day his lungs bled again, the left side of his heart was collapsing and he was placed on an oscillating vent. His kidneys stopped working, and his body began to fill with fluid. The doctors sat us down and told us there was nothing more than they could do. We called our family and began preparing for the worst. But the worst didn’t come for a few more weeks.

Max lived through the night and his vitals improved. His kidneys began working again. He amazed everyone. He improved enough to be placed on the conventional vent once again. However, that is where the improvement stopped. Max never made any advancement on the conventional vent, and several times had episodes of lung bleeds. The doctors discovered new bacteria had invaded his lungs, and he began to show signs of infection. His GVH flared once again and he began another round of ATG to treat it. His blood pressure had to be maintained with pressers, and each day it seemed the need increased.

During this time Max’s kidneys began to shut down again. He gained a lot of fluid weight and dialysis was started. Max managed well, but his lungs did not improve with less fluid. In addition, he now was diagnosed with pulmonary hypertension. The conclusion was becoming clear: Max’s lungs were permanently damaged from so much ventilator need and from infection. The likelihood of ever coming off the vent was remote. In addition, his body was now dependent upon dialysis. His graft vs. host disease was not under control and the risk of treating it outweighed the possible benefit. The doctors sat us down again and this time it was a group of all specialists associated with his care. We asked them if there was anything else to try and they said no. Max had reached the end of treatment and his body was not healed and was, in fact, only continuing to decline.

We made the decision to stop his life support two days later after some family arrived to surround him with love for the last time. On the Wednesday before Thanksgiving, Max was placed in his mother’s arms with his father kneeling beside them both. He was resting comfortably as they turned down Max’s settings on his machines. The respiratory therapist removed his breathing tube and Max took his last breath. A few minutes later, his heart stopped. The face that we were so excited to see free from tubes and tape looked blue and ashen. His mouth was dry and gray. His spirit was gone, and the body that was left behind was devastated.

Max’s last days included great pain and suffering, and only his passing brought him rest. We would have taken our son home in any condition, no matter how sick, but in the end, that wasn’t possible.

The doctors who visited Max’s body after he died all said the same thing, he was an amazing fighter and there was no other choice. The damage to his body would have taken him shortly. We told one of the doctors that we wished we didn’t have to make the decision, and he said, “Oh, no, you don’t have to make a decision, the decision has already been made.” To the end, we are so proud of our son.

We are grateful for the tremendous effort displayed by all of Max’s caretakers, those with us on his final day. We received wonderful care during our entire process, and we are indebted to their compassion forever for helping us get through those difficult months.

Mike's Tribute

2003-12-02T00:25:00.000-06:00

Father Kilbridge said if I get choked up I just need to STOP and let it subside. I’ll keep that it mind.

Thank you Father Kilbridge for being here today. Sunday when we met with you and you told us you remembered baptizing Max, it meant a lot to us. After that day, the only other time Max met a priest was in the hospital in October when the Blessing of the Sick was performed on him. Life in between these two events was pretty good for Max, but life after the second one was very hard. Thank you for remembering us and for remembering that with a name like Max Alexander it was like Alexander the Great. We certainly thought so.

Thank you also to my wife, my bride, my life, Margaret. No one loved our son more and no one could better speak of his life. It speaks your love and his life that Max could only say two words, “Mama” and “Bye-Bye.”

But my task is not to look backwards, it is to look forward.

The death of a loved one leaves many questions, and the death of a child even more. But we know that “Why Us?” is a trap and that lingering in the past leaves us powerless to seize the moment. And what a moment today is. We will not be able to celebrate our son’s Preschool, Kindergarten, Elementary, High School or College graduations. We will not see him score a goal or win a science ribbon or paint a picture.

We have today. And Max has today. We know what it is to live life day to day. We know what it is like to live like every day might be the last for our son. We know that every day, and in fact, every moment of every day is special. Today is our day to remember and to celebrate our son. We have this time, with these people for whom Max meant so much. Yesterday so many of you saw the boy you only knew in pictures or online. As Margaret said, however, he was real and we loved him deeply. He is gone to this earth but his spirit remains. We hope you saw that last night. We hope that the pictures and the slideshow made clear that while there was great pain, there was also great joy. We hope that we didn’t look too sad. We were too proud to be sad. We cried together before you all arrived and we cried after you left. But in front of all of you, we were proud to show off our son. Our champion.

But all of us who have been touched by Max or by his struggle have the same problem – how best to recall his spirit.

Many people might feel that Max was so chemically controlled that he didn’t even know what was happening to him. Or you may feel that Max lived so long and fought so hard because he was a baby and what else was he going to do? But anyone who ever tried to feed Max a food he didn’t like or made him stop walking around the dining room table knows that Max was determined and in control of his choices. And Max chose life. Again and again. When letting go would have made so much sense, Max chose life. He chose pain and suffering for the chance to live another day. Even with his body rotting from the inside out, he chose to fight from within.

What for? For a mother’s love? For a sister’s hope? For a father’s dreams? We’ll never know. We just know for certain that his will was indomitable, and his heart enormous. Even when the doctors told us that Max’s body would not heal – that his disease and injuries were not reversible, we struggled to say no to such spirit. It was the kind words of an intensive care doctor that helped ease our minds. When we said we wished we didn’t have to make the decision, he said, “Oh no, don’t feel like you have to make a decision, the decision has already been made.” And it was then that we were reminded that there is medicine, there is determination, and there is something else – something untouchable and invisible and in control of the unexplainable.

So it’s what comes next that matters most. Because his choices, and our choices, and his efforts, and the doctors and nurses efforts all have to add up to something.

We received such kindness and charity in our time of need that we have a new understanding of those two words. There is more kindness in an hour of nursing than a lifetime of “good intentions”. There is more charity in a shoulder to cry on than in a lifetime of writing checks.

We lived in a Ronald McDonald House – a house for families of terminally ill children. We imagined that there would be a pall in the air of immense sadness. But the reality was much much different. Instead we felt like we were part of the most loving and caring family imaginable. We were living in the depths of despair but looked around and saw hope. Always. Always hope. For every parent of a terminally ill child there is hope until the very end. You never give up hope, you just change what you hope for.

Today we hope for Max’s impact to last past his death.

We received many emails and notes that Max’s struggle had made people look at their own lives differently. Many people found out they had unknown fundraising abilities. Many people found out how easy it was to send a package or write an email. Many people found that there are great rewards to getting over the “I just don’t know what to say” hurdle. But as Grace told me, “It’s OK, Dad, you don’t have to cry. Bubba’s not sick anymore.” So for the parents who said they are looking at their own children differently and they are appreciating them more, I have to ask, can you do it today? Can you do it with Max above and not sick here on earth?

For people with illness or disease, there is a need for contact. When reaching out there are only two reactions, COMPASSION and PITY. Compassion is love followed by action. Pity is sorrow followed by inaction. Compassion comes from the belief that people live with a disease while Pity comes from believing that they are dying from it. It is our sincere hope that you Max’s death grants us the wisdom to recognize this important difference and to always act with compassion in the face of illness and disease.’ Can you follow example of our daughter, who saw children disfigured and diseased and never asked a question of them except, “Do you want to play?”

Can you never, ever, say to yourself, “I’m sure they don’t want to talk about it”?

The lessons we learned by caring for our son will stay with us the rest of our lives. We will try to be better people, better parents and better friends. We ask today that while the memory of Max will fade for so many of you, the actions he helped you do will stay with you forever. It will be up to us to find permanent and lasting ways to remember and honor our son, and we will reach out to all of you at times to reach this goal. But we ask of you some simple things that are sensible, can be done everyday, and in their own small ways honor our gentle son’s life:

Hug your kids each day. Tight. Take a day off just to be with them. If you are a father, acknowledge the importance of the mother and vice versa. Kiss your wife or your husband in front of your kids. Visit them at school. Thank all of their teachers. Show them love. Show them compassion. Teach them that there are children for whom today is not a guarantee, it is a privilege.

Life is precious. Even one day.

Thank you for this day, Max. Thank you for your lessons. You have all my love. I will miss you forever. Please look down on us from above and help us to live in love.

Margaret's Tribute

2003-12-02T00:23:00.000-06:00

There are so many people who are mourning the loss of our son Max. And yet, there are not many people who really knew him. His prematurity and susceptibility to illness kept him inside and away from crowds, and his treatment over the past four months kept him from home. Max has never been in a grocery store, he never attended a mommy-baby class, and in fact, the last time he was in this church was less than a year ago at his baptism. So when Mike and I were trying to decide whom to ask to speak here today, we had a hard time coming up with names. But then we realized the answer was simple, who knows him better than his mother and father? There was the Mighty Max that people came to know and love from his web site - strong, courageous, and determined. But he was so much more than that to us. He was real. I must admit that at times even I have a hard time believing that statement. Sometimes I am amazed that we were so blessed to have such a beautiful child. Let me tell you about him…

Max started dying from Hurler Syndrome the minute he was born. He was premature, he was developmentally delayed, he had asthma. From the time he was 3 months old he had to be held down and given breathing treatments three or more times a day. He took medicine for his acid reflux, and he had therapy to strengthen the muscles weakened from the brain hemorrhage he had at birth. To someone who never knew Max, these facts make it sound like Max had a horrible life. But he didn’t. He was happy, he was unaware of his illness, and he was capable. He found ways around obstacles placed in his path. For instance, because of the deformity in his spine, Max had a hard time pushing up to sit from a lying down position. So what did Max do? He would crawl over to something, pull himself to stand, and then plop down on his bottom. With all that Max was able to accomplish, how can one ever say a challenge is too hard?

Max had a killer smile and a dimple that could knock your socks off. He loved his bottles and his pa-gos, he loved his electric piano, he loved his Baby Einstein movies, and like most kids, he loved things he wasn’t supposed to have. Many times we used the remote control or cordless phone as motivation to get him to do his exercises. Max’s schedule of doctor’s appointments and therapies challenged even my organizational abilities, and without a doubt, his knack for catching every germ that came his way boosted regional sales of hand sanitizer. But if you really want to get to know Max, just look at his sister Grace.

Though Max had an uncanny resemblance to all other babies born with Hurler Syndrome, he still looked like his sister. Their beautiful big brown eyes, tiny noses and down-turned mouths let the world know that they were siblings. The smiles and laughter they shared told the world they were friends. Max loved no one more than Grace, and she was proud of everything he did. Grace was always determined to get Max to laugh, and she was always successful. Their favorite thing was to take a bath together – Grace in the big tub and Max in his little tub on the floor next to her. Bathtub peek-a-boo and splash mommy were the games to play. Neither one was aware of how sick he was. Grace hugged and kissed him, no matter how bad he looked. After his death, she crawled right into bed with him and got under the covers. Some may chalk it up to the innocence of childhood; I attribute it to the bond they shared. Grace loved him so that she offered Max her spirit so that he could live. I believe that thoughts of Grace kept Max alive for so long.

The thing that we will remember most fondly about Max was that he was a good boy. He never held a grudge against us for all of the medication we had to give him, the doctors’ appointments we made him attend, or the therapies we made him do. He fought to the very end, and tried harder than we could have ever asked of him.

To say that Max suffered greatly over the past four months is an understatement. To say that he is in a better place now than he was before he died is a fact. He was so sick, and death is so ugly. But Max was beautiful and we are so proud of him. We are proud of his will, his determination, his inventiveness. We are proud that he brought out the good in so many people. His life was painfully brief, but his influence was great.

Thanksgiving

2003-11-28T12:25:00.000-06:00

To our family and friends, we thank you for the condolences we have received. We hope these arrangements will be accommodating to most people. It is our intention to celebrate Max's short life as much as we can while at the same time we mourn his loss so deeply.

VISITATION: 5pm -8pm
MONDAY, DECEMBER 1
Peterson Funeral Home
Contact: Tom or Rosie Ahern
6938 W. North Avenue
Chicago, IL
(773) 637-4441

FUNERAL: 10:30am
TUESDAY, DECEMBER 2
St Vincent Ferrer
1530 Jackson Ave
River Forest, IL
(708) 366-9266
All our love,
Mike, Margaret, and Grace

Farewell Sweet Prince

2003-11-26T12:29:00.000-06:00

Day +104

At a little before 10am the final flicker of life left in our son Max's body ascended to join the rest of the stars in the sky. Look up tonight to find the star with the most brilliant twinkle and you will see his glow.

It should be noted that to the end he fought and it was only in death that we could see just how destroyed his body had become. The passing was very quick, indicating how dependent on machinery he was and how sick he had been. The agony of the decision to remove his support was lightened by feelings of relief we both felt in the time after his passing. Even at the final moment, when the doctor had to listen for a heartbeat, Max still was fighting and the doctor had to come back a second time. In the end, his will was stronger than his body. And his spirit has carried him to a better place - free of pain and suffering. He was and is our mighty mighty Max.

Happy Thanksgiving to all. We are thankful for the 16 months we had our son, and especially for his his effort these past three months. Thank you Max. Thank you angel. You are our love.

Grace will be coming over shortly. She just asked us if Max "was just bones now." We told her he still has skin and hair and all the outside stuff but the inside stuff that made him play and love went to heaven. She told Auntie Bethie that "it's fun to play with people in your dreams." She will be our salvation.

Please pray for his soul and for strength for our family at this difficult time. Please continue to look to this update for funeral arrangements.

With love from Minnesota and from above,
Mike, Margaret, & Grace