Our Mailbox Has Been Full

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

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

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

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

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.