Just as Z has grown and progressed, so have I. It’s important to assess where you are at throughout your life and celebrate it. Embrace who you have become at all stages in your life.
When I think back to pre-diagnosis and the couple of years following the diagnosis I feel sorry for the girl with the broken dreams. We all have this idea of what our kids will accomplish (become a pro sport player, president, doctor, musician). I was filled with hurt, confusion, bitterness, sadness. I was overwhelmed with having to switch gears and slow down expectations. I had to step aside and give all my effort to this new part of our lives. I lost friends, family, my job, my health. I gained 20 pounds and felt terrible.
Then something snapped…
I realized I felt terrible because I was allowing others to invade and control my reality. I was allowing for what society said was “normal” to form my ideal of a perfect life. I allowed myself to feel responsible for the feelings of others. For what others portrayed onto me as what should be “normal”. I was trapped in the grief without realizing it and was being engulfed by it. Along our path, I disappointed many and took ownership of that. Even when I knew deep down it was out of my control.
How did I move out of this slump? I re-focused on what WE needed as a family unit and got my health in line. I lost those 20 pounds (and then some 😃) and didn’t hold myself back.
You see, in these past 11 years I have learned not to own anyone else on this path. I used to meet special needs moms of older kids and was so in awe of their inner calm and “take no sh**” attitudes. I thought, I will never be like that. They were MADE for this life and I am not. But you know, with years comes experience. I have experienced the worst of the worst and nothing can phase me now. Sure, there are bumps and I lose some ground. I stumble along this path almost daily. I find myself on my kitchen floor crying more than I will admit. I still visit that grief from time to time. But I get up, dust myself off, move on and don’t internalize it.
And this has been freeing. I feel that calm I cherished in those older moms. I can be in public with Z, know there are stares and judgments, and just honestly not care. In fact, I almost welcome them. Bring it. You want me to explain why I hold my 11 year old’s hand? Why I look normal but park in handicap? Why I hug and tickle my son even though it is faux pas at this stage of his life? Why I take him in the bathroom with me? Why he might be screaming and hitting me? Yes, bring it. Each of these are opportunities to bring awareness and broaden YOUR world. Each of these are opportunities for YOU to own your feelings and reactions.
I know I can handle this path with Z without too many stumbles. I know that his life is more important than anyone else and his progress is part of me. That I played a role in this. That things I gave up allowed for his growth and mine as well. That I am a better person for what we have gone through. I hated confrontation before but now I understand for this to work that I need the BEST of others (vendors, school, work, family, friends). It is not enough to say “That’s just who they are, ignore them.” No, we all need to change. We can all be better.
There have been casualties along the way and I mourn those. Some day I will share those with you. The most important lesson I have learned is that it is the TRIBE that matters. Everyone that plays a role in Z’s life is part of this tribe and helps me in more ways than they know. It takes a village, my friends, a freaking village. And I love all of you that are a part of that.
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Tilted Axis 