21 hours ago
Thursday, August 19, 2010
A letter to Max: I do not mourn who you are
After I put up the post yesterday on being sad about us not getting a happy ending, it occurred to me that someday, you may read it and think that I consider you a tragedy. (I know for sure you will think I am the world's lamest cook, but that is a whole other story.)
I wrote to you last year right around this time, too. It was the night before you got the stem cell infusion at Duke University, and I wanted you to know that I do not regret your disabilities. I didn't want you to ever get the impression we were doing that procedure because we thought you were lacking in any way. Once again, I don't want you to feel that I in any way mourn who you are.
Because I am your mother, I mourn that you had a stroke. I will always mourn that. At times, I get bummed that you have more challenges to overcome than other kids. At times, I get sad that you were not miraculously healed.
But I do not mourn YOU, Max. I can't imagine any other Max. Like last year, you are a boy who is full of enthusiasm and sweetness and brightness and all sorts of wonderfulness, not to mention Good Hair. This year, you've become a boy with a really great sense of humor. You've developed lots of, shall we call them, passions—purple! Car washes! Toyota Siennas! More purple! You're spelling your name out loud and doing an admirable job of writing it. You're saying lots of new words, and wow, is your "NOOOOOO!" clear. You are trying hard to speak in sentences. You are getting very wise; when you want to sleep in our bed at night and I say "You can't, it's broken!" you laugh at me and say "NOOOOOO!" (Apologies for trying to put one over on you, but you kick in your sleep.) You're doing an awesome job of feeding yourself. You're walking up and down stairs by yourself. You pedal your green tractor down the hill like a speed demon, with a wicked little grin on your face the entire time. You've learned how to isolate your pointer finger and use it to point to things and peck out stuff on your iPad, quite the amazing feat. You are getting really brave about exploring new places, even pancake houses. You have a best friend at school, Caleb, your first ever best friend. You have all sorts of new interests like miniature golf, computer games, finger-painting and the show Max and Ruby, and you think it is hysterical when I call it Max and Poopy, which is good for my ego because it's really hard to get a laugh out of Sabrina. You plant the yummiest kisses on my cheek and when you nestle your head into my shoulder and make those sweet sounds, I am the happiest girl in the world.
I love you as you are, Max. I always will.
Posted by Ellen Seidman at 11:45 PM