By JENNY WADE
Posted December 12, 2012 at 3:14 p.m.
It’s Christmas time again! Seems like last Christmas was not that long ago. I, like most of you, have been very busy this month with holiday preparations. It’s amazing just how much needs to be done. So in all this seasonal busyness, I neglected to generate ideas to write about this month. I didn’t have any. So I asked my husband and daughters and they all expressed in one way or another that I should write about Christmas. In December that is the main thing on everybody’s mind: Christmas.
One of my favorite parts of being a parent is watching the world through my children’s eyes; seeing their faces light up or happiness in their heart. The joy of Christmas has a whole new meaning with children in your life. When my girls were little, I wanted them to feel and see the magic of Christmas. We would go to church for a Christmas Eve service and then spend time with our extended family, usually at one of their houses. It was such a special time. Excitement and joy were in the air.
Then along came precious Austin, who drastically changed our lives. A child with special needs can impact and/or alter family traditions.
Until last night, when my husband mentioned how having a special needs child has changed some of our family traditions, I hadn’t thought much about it. I guess it has become our life and some of the smaller changes are less noticeable until I sit and think or write about them. Our family has had to change the way we celebrate Christmas. Now, we usually stay home and our extended family comes to us. We are blessed with a fairly big family, and it can get quite hectic in that beautiful crazy way. We have not attended a Christmas Eve service in many years; it is just too much to get everybody ready and out of the house. It is less hectic and more peaceful for us to be at home. However; most of the important aspects of celebrating Christmas are still observed: spending time with family, opening presents, special desserts and food, worshiping the Lord and just being together. My father still reads us his yearly Christmas Story. It is a tradition that has endured since my childhood.
Austin’s first Christmas was just two weeks after he had surgery to put his left bone flap from his skull back in his head. The surgeons who saved his life removed the left bone flap of his skull because they knew his brain would continue to swell after his life-saving brain surgery. They did not want his skull to further suppress his brain. After a severe brain trauma, the brain often continues to swell. So they put the bone in the freezer at the hospital. It was an eerie feeling to know that part of your child’s skull was not in his head, but in a hospital freezer. The surgeons had to reopen the incision on Austin’s head to put the bone back in.
That was probably the hardest Christmas, but yet joyous that our son was still alive and now had the bone back in his head. He finally started to sleep a little better. I guess he felt more put together. That year we started Christmas at our house with our extended families. As Austin has grown, we have kept with this tradition. It is much easier for us to be home with all his equipment and supplies.
Austin needs totally daily care and is in a wheelchair. It is quite a production to take him out and about, and sometimes it can seem overwhelming. Do we have his medicine for when he needs it? Do we have food for him? Purified water? Diapers? A change of clothes? Extra tube-feeding supplies? The tube-feeding pump? His bag? We also have to lift him up in his wheelchair into our van or bring out the heavy duty, hard-to-carry metal ramp to put his wheelchair in the van. It is quite a production. If I have someone to help, it is much more doable. Then once we get somewhere, we have to make sure things are wheelchair accessible. It isn’t until you need it that you notice there are still many places that are hard to maneuver or impossible to go to in a wheelchair. Most homes today are still not constructed to deal with mobility equipment.
The hardest thing for me about the holidays is my son will not be running around, eating Christmas treats and playing with his cousins and toys. He is not able to understand what Christmas is. My family will not experience the joy of watching him open presents. He is simply not able. His sisters will open them for him and he might hold a little wrapping paper, but not for long because he will try to put it in his mouth. Everything he can grab goes straight to his mouth.
I am really not trying to feel sorry for myself about my son at Christmas time; it’s just the reality of our lives. Sometimes it smacks me harder in the face than others. Sometimes writing about it is very therapeutic for me.
I will mostly contend and rejoice in the little things my son can do. He can look at the Christmas lights that we strung along his specialized bed, and he seems to watch some movies on his portable DVD player, even if he only catches a few movements on the screen. He may not understand the movie but I know for sure that he enjoys the sounds. But maybe — just maybe — he knows so much more than he can communicate with us.
I will totally love seeing the excitement in my girls’ eyes. Now that they are a preteen and a teenager, Santa is not important, but presents sure are! It no longer works to tell them they better behave or Santa won’t come. That stopped long ago. They are turning out to be wonderful young ladies though. I have such joy in them.
Life gives us curve balls and twists and turns, and we just have to try and make the best of it and hold our chins up. I intend to enjoy Christmas with my nuclear and extended family. Being together and celebrating the birth of Christ is really what it is all about.
If you have a child with special needs, what traditions or customs have you had to change or alter?