Happy Birthday Max

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

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

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