Ahhh, the holidays. Time to relax and enjoy having family gathered around you, eating delicious, fattening food before renewing your annual resolution to lose weight, right? Sadly, when you have someone in your life with special needs, it doesn’t always work out that way.
Two days before Thanksgiving 2008, our family received a crushing blow. The baby we were expecting in April was diagnosed with what has been described as “the most devastating congenital defect compatible with life”. Spina bifida. My husband didn’t understand what the doctor was saying. As a nurse, I did. A pall had been cast on the whole holiday season. I had to get through it while worrying about how much it would affect the lives of our entire family. I had to explain to family and friends that we didn’t know how Micah would be affected until he was here and even then we would still have to watch and wait to see what he could do as he grew.
I wanted to hide. But I had a toddler who needed her Mummy to share the excitement of the season and the coming baby. I didn’t want there to be an “elephant in the room” at family gatherings. You know, the thing that is so overwhelmingly big that you can’t help but notice it, and wonder why no one else is talking about it? I didn’t know how friends would accept a “disabled” child. We don’t have family close by and didn’t really have any good friends either, having relocated to Ohio only a year before. My husband works for a school district and shared Micah’s diagnosis with a few of his colleagues. One of the librarians learned of it and after hearing that we didn’t have plans for Thanksgiving, insisted that we come to dinner at her home. I didn’t want to. Our daughter was young enough that she wouldn’t know she was missing out on anything, so why not stay home and not have to talk to anyone? Why not hide from the questions of well meaning strangers? But we didn’t.
I wish I could say I knew we needed to get out and live our lives as usual, but that’s not why we went. We went because my husband, an Aussie, has grown to love turkey drumsticks. And stuffing. And mashed potatoes. And pie. Any excuse to make a pig of himself with unlimited access to food? He’s there. So we went. And I’m glad we did. Yes, it was difficult. Vickie, his colleague, was kind enough to ask her questions about Micah’s health in private, and didn’t share with the rest of the group, so as far as they knew, I was just your average pregnant woman. It helped to know that I didn’t have it written across my face “I HAVE A CHILD WITH SPECIAL NEEDS!” It helped me realize that we will have lots of holidays to celebrate with both kids. Even though Micah has a disability, he has a right to celebrate like everyone else! Christmas was a blur spent with family and friends out of state. I went through the motions, and tried to just concentrate on my daughter’s pure joy over all the pretty presents, lights and fun.
It’s nearly two years later–and Micah has surprised us all. We didn’t know if he would even be able to stand on his own. He not only stands, he loves using his walker to chase his big sister. It has not been easy, though. So far, we’ve been through 7 surgeries and spent our 9th wedding anniversary, Palm Sunday, Easter, the 4th of July, and my birthday in the hospital, courtesy of those surgeries. How do we handle it? Honestly, first I cry. Then, I try to replace the tears with laughter. I bring in treats for the nurses who have to work those days. They don’t exactly want to be there either. My husband brings us food from our favorite restaurant since we can’t get there. Our favorite drinks taste just as good from a disposable plastic cup as they would from an expensive crystal goblet, right? When friends and family offer to help out, I try to find some way to let them help–accepting help is so important when you have a special needs child! One friend in particular brought me a pint of my favorite sorbet when I had to spend my birthday on the rehab floor with Micah, who was recovering from spinal cord surgery. She sat there and enjoyed her own pint of sorbet with me, since my husband was on a business trip. Was it how I wanted to spend my birthday? Oh heck no! I would have chosen to spend it at a fabulous spa being pampered and massaged and treated like a queen! But my little man needed me, so there I was. Sitting on the pull-out couch eating sorbet with a plastic spoon and laughing with a friend.
What have I learned from having kids with special needs? You really have to be flexible in every area of your life. If something isn’t going the way you wanted it to, don’t fight it. Accept it, and make the best of it. Celebrate, no matter what blow you’ve been dealt. As a youth pastor of mine used to say… fake it ’til you feel it. You’ll get there. And your family will thank you.”
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