5th Birthday

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