2nd Anniversary

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