There's a unique grief that belongs only to those of us who are parents of children with special needs. It's a grief that can lie dormant and unnoticed for seasons, and then it can come flooding back all at once in fresh rivers of pain and sorrow. Maybe it's a Facebook post with a photograph of happy children around your child's age, celebrating a birthday at a party to which you and your family weren't invited. Perhaps it's a post about how someone's child has reached a milestone or won another trophy in a sport or been elected class president, or maybe someone tells you about how their children are reading or asking for books to be read to them or, hey, even talking at all. I don't know what it may be, but something triggers that overwhelming sense of loss deep within you. And you know people don't mean to hurt you. And you also know that they have every right to share their joy about their children's successes. Then you feel guilty because you think that you must not love your child enough because some part of you longs for them to be like other children. Plus, you also feel guilty because you resent other parents for no reason other than the fact that they simply have neurotypical children. I don't know about other special needs parents, but I can get stuck here for days or perhaps weeks. Honestly, I've been stuck there sometimes for months and even years. I still have to fight to keep a root of bitterness from growing in my heart.
I get so angry sometimes. I look at people who can take family vacations, and I can't even take my daughter to the grocery store without my husband's help. She is in a phase of going into a total meltdown almost every time I speak to her. She spends most of her days in her room; she doesn't come out until my husband gets home from work in the evening. I try to interact with her and get her to come out and spend time with me, but when I do, she will just self-harm. She is non-verbal, so there's not really much chance that I can figure out exactly what it is that I've done wrong and exactly why it is that she suddenly comes running out of her room smiling when she hears my husband's voice in the evening. No, this is not what I envisioned when I thought about parenting my daughter. She is nine years old now, and I had plans of talking about clothes and hair and staying up late at night, just the two of us laughing and talking. I imagined baking and making messes together in the kitchen. I never got the years of tea parties and dress-up or baby dolls and Little House on the Prairie and Anne of Green Gables. I will never get the prom or the wedding planning or the excitement of her first baby. So many missed milestones; so many fresh waves of grief.
I have no words of wisdom here. I cannot say that I have found some perfect way of dealing with this. Therapy helps. I've learned coping skills. And I take this day by day, hour by hour, and minute by minute.
