Parents of kids with disabilities deal with a chronic grief that never goes away. In the beginning, it is an intense grief similar to the stages following the death of a loved one, denial, anger, bargaining, depression, and eventually acceptance. We are grieving the loss of the “normal” child that might have been. But the child is still with us, so the cycle of grief never ends. Transitions in the child’s life often get the grieving cycle started again. For example, when the child starts school, has a birthday, goes to their first dance, a graduation; or worse, the child may miss out on these typical transitions.
Thankfully, the intensity of these emotions tend to fade over time and we eventually learn to cope. But the grief is always there and sometimes you just never know when it will raise it’s ugly head. Sometimes the grief can hit you when you least expect it. My life is good, my family and I are healthy and happy. I’m able to care for my boys, I’m coping well and I’m content and happy. Some people wonder how I manage to stay so positive with three children who all have special needs. For the most part I’m it that acceptance stage; after all, I’ve had 15 years to work on these issues.
Some parents of children with disabilities describe life as a roller coaster ride. Others say it’s more like bumper cars, you never know when something will sneak up on you from behind and hit you like a ton of bricks. I did feel like I was on a roller coaster when the boys were young. Things moved so fast, too fast. I could barely catch my breath. I had no control over the direction my life was heading and no way to get off the ride. But now, I think the bumper car analogy is better. You merrily drive along, minding your own business, when apparently out of nowhere, something hits you from behind. That is what happened to me today.
I was checking my morning email and I got a notice from JibJab that the new “Elf Yourself” script was out. If you’ve never heard of Elf Yourself, it’s a popular seasonal ad from OfficeMax where you can turn your family and friends into elves by sticking heads on elf bodies. It’s just silly Internet fun that I find hard to resist. This year you can make Disco Elves, and being a 70’s girl, I decided to have Rich dancing with the twins. I happily spent too much time choosing photos, cropping and fitting heads into the elf costumes. It wasn’t until I played my finished project that I got hit from behind. The overwhelming sadness of seeing Eric dancing around and looking exactly like is twin brother just made my heart sink. The boys were dancing around with their dad, just like it should have been…
So, the grieving cycle starts again. You don’t necessarily go through every stage and the emotions are in no particular order. I’m not in denial and there is no one to bargain with, so right now, I’m somewhere between anger and depression. But don’t worry; I’ll work back toward acceptance. I’m a veteran and I know this hit won’t keep me down for long!
Oh, and Happy Holidays!
I think it feels like living with a cancer that has no cure. Still a work in progress. What we do today may make a difference for those that follow all of us. Our blogging, words, and photos will provide insight for many decades to come and others that face what we all deal with every day, including yours truely, will inspire others not to give in or give up.
I have to admit Cindy, it’s somewhat comforting for me to know that you too still have your moments of sadness. I hope that doesn’t come across as wrong, but you always come seem so “together” and you set the bar high for us other parents of special needs kids 🙂 I respect and admire how you’ve turned a bad situation into a livable and mostly happy situation. I enjoyed watching the video and with both boys up and dancing, I could really see that they are identical twins because I couldn’t figure out who was Eric and who was Aaron most the time. Do I dare try the same thing with my family. I can’t even imagine what it would like to see Jack vertical!
Have a great weekend ……..
I hear you Ann. For the most part, I think I was just lucky to be born an eternal optimist. That is something you don’t have to work at. But even so, it is a constant battle to stay happy. I think that’s true for most people regardless of their challenges. But you know I’ve always said that the twin thing is tough for me. Maybe because Aaron is a constant reminder of what Eric should have been or the fact that they are so different even though they are supposed to be “identical”. I don’t know, but the times that are hardest for me are usually twin-related. That said, if they weren’t twins, it would probably be something else. We all have our unique perspectives.
I just told myself last week, that I would not grieve anymore for the life I thought I would have with my husband and child.
I am now divorce ( my marriage lasted a little more than a year) and my son was born almost 3 months early. He has had his trach since he was 5 1/2 months old. He is now 4 1/2 years old.
My son spent 5 1/2 months in the hospital and life has been full of challenges ever since.
When I start to feel sad, I tell my self, my baby is home and I smile. We are having a great time now but deep inside me the grief is there and at times I am scared. But I say a prayer and know God is there for me.
It makes me feel better when I reach out and listen to others like myself.