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