Walking the Wall

16 years ago today the most amazing little peanut uncurled from inside of me and slipped into the world with the most amazing blue eyes and the cutest little butt of all times. Thinking back, there are so many people that I have to thank, so many people who really had a tremendous impact on my son’s life that I can never thank enough. I remember being so surprised to realize that his first birthday was just a week away–we literally had never thought about it, wouldn’t think about it because of his prognosis. 16 years ago I never could have thought so far ahead as 16 years–one foot in front of the other, one day only, that was the only way. So to look up and see the clock flip over onto his 16 birthday…

Dear Mike. We have come so very far, I cannot believe that our son snuck up behind us and turned 16…we were younger than he is now when we met and you threw that football into my yard just to have an excuse to come and meet me! We have been through an amazing life full of joy and heartache, good times and awful times and despite the insanity, here we are, better than we ever. Thank you for being the most amazing father, your kids are lucky to have you and watching you with them gives me such joy. It’s funny how that first day when we sat and held Michael, I couldn’t see 16 years into the future, I could only see that little face that looked so much like you–now though, I look back and see it all.

Dear ICU Intern, Thank you so much for recognizing Michael’s syndrome so quickly, it often goes unrecognized and the diagnosis helped in treating him correctly right from the beginning. I hope, though, that in the last 16 years you have that there is a difference between saying “This will be a long battle, but let’s take it a day at a time” and “Take him home and enjoy him, he won’t live beyond a year”. I wanted truth, but the ability to know when someone is going to die is not a gift you have, thankfully. That sentence haunted me for a very long time. I hope you have learned grace and balance in dealing with parents. I know it’s time to let it go, but I cannot resist just once more, “You were wrong, so very very wrong.” Thank you, thank you so much for being wrong.

Dear Dr. V, Dr. B, & Dr. H, There is nothing that I can say to describe how much I understand that my son is laying asleep in his bed on the morning of his 16th birthday because of you. You refused, from the very first appointment we had with you, to accept that Jeune’s was fatal. You dealt with each situation, each day, each problem, each hospital stay, each cold and you had hope in abundance. While I was never not afraid those first few years, when I talked to you, I always had hope. Thank you for understanding my need to be given facts, and thank you for never treating me with a condescending attitude. Thank you for understanding Michael’s need for facts, for putting him up on the table, showing him his x-rays, and explaining what was happening. Thank you for everything, for giving all the time and the hours and the stress–I know you have all given up time with your own family so that my family could stay intact and there are no adjectives to add on to thank you to make it mean how I feel.

Thank you Dr. D, for not saying “no”, for not saying (like the others) “wait until he’s dying” but instead for saying, “I don’t know what I’ll do, but I *will* do something” and then just doing it–developing a surgery and giving my son, literally, the extra air he breathes. I can’t find any words. I am just so grateful.

Dear Dr. S, I’ll never forget the first time I met you, we had been through such a long few weeks, he was so sick and for the first time, he asked me if he was going to die, he was eight years old and my heart died a little. “We think he has AIDs,” they said, “No, not that, we think he has Leukemia,” they said, “No, not that, maybe it’s…” and then you came and put so much time, poring through all his blood tests, sending his bone marrow tap results to hospitals, trying the medication that has made his life so much better. I hate giving Michael shots every other day, Michael hates getting shots ever other day–I am so glad that we have these shots to hate. The work you do in oncology must be extraordinarily difficult and stressful–thank you, it doesn’t go un-noticed.

Dear mom…I love you. Thank you. You were always there, every moment, all the hospital stays, all the doctors visits, carting oxygen, sitting on floors in the hall because he couldn’t be in the waiting room, making me go home and breathe, watching Katie when he was in the hospital, unconditional support, you were still raising young children of your own and you always had time, always made time, I never went to those appointments alone. You watched him when no one else would, went to CPR classes, popped his feeding tube right back in if Katie pulled it out, you always ignored the tubes and wires and saw only your grandson–so much love, I can’t begin to imagine the last 16 years without you there. I love you so much, Michael adores you, I cannot believe he is sixteen.

Thank you, Michael, for teaching me that every single day is an amazing gift. Thank you for teaching me that strength is unlimited when love is feeding it. Thank you for your trust, your trust when I had to (have to) do things that were painful, allow people to do things that were (are) painful–for trusting me that it was (is) for a reason. Thank you for giving me your love, I love you more than all the stars, I would say–oh, but I love you more than all the grains of sand, you would say. Whenever I feel sorry for myself, or feel like I’ve come to the end of my rope, always always I see you sitting in a pile of toys, not even a year old with the oxygen tube and the feeding tube all taped to your face and wires coming out of your shirt with the world’s largest grin and the brightest blue eyes. That is what strength looks like to me and I know that if one boy–now one young man–can have that strength, then surely I can shake it off and keep on going. I am immensely proud of you, I adore you, and I am in shock that you are 16 years old–how did that happen? I think back on so many memories and they seem like yesterday, I can see them and feel them and time just folds. I can only ask your forgiveness for all the family videos I’ll be subjecting you to today when you wake up.