Wildflowers for Jade: Grief

Saturday, August 21, 2010


Mid September last year was the turning point in my life. That’s when we learned what we had grown to suspect; all was not as it should be. That’s when we learned that my son is special needs. Through the course of a year we’ve been on excruciating waiting lists and had various assessments. Some gave answers and some just brought more questions. September was the beginning, and each assessment just brought on a new level as I was told it was worse than my optimism kept making it.

Jaden is my only child, I’ve had nothing to compare him to except himself. Sure there were some things in the books, or the occasional play dates, or the advanced cousin who you shouldn’t compare your own child to. Everyone develops at their own pace, boys develop language slower, every personality is different. These things I told myself, these things I read, these things our pediatrician assured us of.

A few months before he turned 3, those things stopped bringing me comfort. At play dates he wouldn’t play with the other children and obsessed over one toy or one idea until he completely melted down. Almost everyone else his age was potty trained, but I was a bad mommy because for some reason I couldn’t find the trick that made it work for him.

I remember one particular day playing in the backyard of a friend’s house with about 10 other families. As usual Jaden obsessed over the ride-on car, following the kids around the yard when it was their turn, jumping on the hood and crying. That day as I chatted with another parent who’s child was a year younger than Jaden (and who had just successfully potty trained), said child sat down with us and talked to me. Looked me in the face and spoke in calm and clear sentences that I understood. Whole sentences.

That day I went from code yellow to code orange. Something was wrong. In spite of everyone’s assurances, something was wrong. I wanted Jaden to talk to me like that. I wanted to understand what he was saying when he spoke, and not have the heartbreaking task of trying to decipher complete babble. I wanted to know what was going on behind those insightful looking eyes.

Then someone posted a developmental checklist on our group’s site. Maybe they did it randomly… maybe they were thinking of me. I’ve seen the milestones. But I read it again that day. And I showed my husband. We went from code orange to code red. Something was WRONG.

What exactly that something was it would take a year to understand. In the meantime grief was strung out and added to in small parts like adding beads to a necklace. Since we were so lacking in answers it was a hard thing to confront and get through all at once. Just little bits and weeping jags in the Target parking lot when I was alone.

I know my situation is worse than some and better than others. But all parents of special needs children share this commonality. There is always grief.

I want to clarify mine because often when I read what others have written, it doesn’t work for me. They don’t speak for me. But there it is over and over, until I heard it from a friend’s mouth who was not a SN mom, who was only saying it because she’d heard it somewhere else and thought she was comforting me.

“I’m sure you’re grieving over the loss of your hopes and dreams, and how you thought your life was going to be.”

No. Not exactly. It makes me cringe every time I hear it. Because, to me, it adds an extra layer on what it is that I am grieving for.

When Jaden was born something amazing happened to me. Previously I was a pretty egocentric person (as many are). I cared deeply about others, but my life was mainly about me. It was my story. The moment he was born the world shifted. It was his story now, I was his supporting cast, and that was ok. In fact it was great.

This isn’t about me. Theoretically, as parents we can all walk away at any time. We won’t, but we can. Jaden can’t do that. This is his life, this is who he is, and this is his struggles. I grieve for him. For how much harder he has and may always have to work at what others find easy. For the fact that there are a lot of heartless people in the world, and one day some of them might say things to him that dims the beautiful innocent light in his eyes. That even now when we go out people see a child who misbehaves, not a child who’s overwhelmed and can’t help it.

I grieve because I don’t know what his future is going to be, and I want him to have a good one. From the beginning my hopes were for him to find what it was he loved in life, and to be able to pursue it. Whatever that may be. Only through time and hard work now will we know if that’s possible. In that, one could argue that I grieve for the loss of my dreams. And I believe, or want to believe, that that’s what many parents mean when they say it. But to the outside world those words take on new meanings of pity and burdens.

My son is not a burden to me. For anyone to think that I grieve for the child I planned to have is missing the point of who he is. He is much more than I could have envisioned in my pre-child word. More beautiful, more quirky, more loving, more full of personality. I look at myself and my husband and I’m in awe that Jaden is much more than the sum of us. My husband aptly called him a ball of sunshine wrapped in a little boy. I tell my husband that we didn’t do anything so good in life that made us deserve him. He agrees.

Jaden looks at me with big blue eyes full of trust. He really believes that “Mommy can fix anything.” (He must considering some of the things he brings me to fix.) I can’t fix this for him. That’s why I grieve.

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