Matt I’ve been thinking of your life as a tragedy. I’ve been feeling sorry for our little family. I’ve imagined hundreds of times all the things you won’t be able to do over your lifetime. I’ve been depressed that you might not ever walk or feed yourself. I’ve sat and cried thinking of your inability to be like other babies, sulked over toys you won’t respond to, been embarrassed when people see you have seizures. I’ve told strangers that you have medical problems before I’ve told them your name. The truth is, I’ve brutally smothered you in a grim imagined future and spat animosity at your every flaw. Ultimately I’ve put everything but you first. Your symptoms have seemed like the most important thing about you and about me. I’ve been utterly self-centered. And I’m so sorry. I just didn’t understand before. I’m glad you are young and that there is time for me to change my perspective before you learn to see yourself as needing a disclaimer or learn to feel like your whole life is flawed. You are such a gentle and precious person and all I want to do is celebrate you. I never want you to feel like you are anything but absolutely perfect. Your struggles may be greater than most, but you are capable of living a full and wonderful life, however brief, because these challenges do not diminish the spirit of your character or the value of who you are. Thank you for giving me the chance to know you and to love you.
Posted on: Wed, 17 Sep 2014 15:28:23 +0000
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