Before Isabella’s Acquired Brain Injury (ABI), Christmas was a time filled with decorating and shopping. We would listen to and sing Christmas music; Isabella even had her own version of a few songs. We would stay up watching Christmas movies and go out at night to enjoy the Christmas lights. Our weekends were filled with Christmas parties and other gatherings. Christmas morning was the chaotic rush to open gifts followed by visits with family etc. Isabella loved Santa as long as she didn’t have to get close to him.
Since Isabella’s ABI, Christmas is very different. It is more thought out and planned. Everything is structured and organized. During the holiday season, life is kept as close to regular as possible. Isabella has significant memory deficits so I have spent the last few years, reintroducing Christmas to her. As each year passes, Isabella “gets” Christmas a little bit more. Our Christmas is no longer that crazy, chaotic time that it once was. We have had to make some major changes to help Isabella during the holidays. Some of these changes include:
1.) We stick to our schedule. With the excitement of the holiday it is very easy to get off track. Isabella needs structure and consistency. We have a visual schedule on the wall with all of our appointments and therapies. Bedtime and meals are the same every day. All Christmas activities are scheduled. This includes putting up our Christmas tree, decorating the windows etc. I DVR Christmas movies so Isabella can enjoy them at an hour that is reasonable for her. Spontaneous nights of light seeing, staying up late to watch Christmas movies and such are a thing of the past.
2.) Social stories are essential in preparing Isabella for Christmas. Social stories are written to describe a particular event. They are very detailed in what will happen, how it will happen and when. Isabella doesn’t do well with the unknown or unstructured activities. Those carefree Christmas mornings have given way to a very thought out and planned one.
3.) Less really is more. Isabella gets overwhelmed easily. Our Christmas decorating is limited to a Christmas tree. This year Isabella wanted to put decorations on the windows so we got the window clings. They are easily removed or covered by curtains. On Christmas morning, presents are opened in shifts. Isabella will open one, wrapping paper goes in the trash and the gift goes into my bedroom (to eliminate the sensory overload). Then Isabella can open another gift. When everything is opened then they all get put away. Nothing is left out under the tree. Even on Christmas the rule is still only one toy out at a time.
4.) Santa had to be adjusted. Post ABI, I was conflicted on how to handle Santa. Once Isabella mentioned Santa and she had an idea on who he was I decided to go with it. Isabella freaked out when she heard that Santa comes down a chimney and leaves presents under our Christmas tree. For a child who is filled with anxiety and hallucinations the thought of a “stranger” coming into the house terrified her. Once Isabella was able to verbalize that, Santa quickly became the person who “poofs” the presents into our house.
5.) Parties, holiday gatherings and family visits are on hold. Isabella is struggling with her day to day life. She has no ability to cope or adapt. These are not things that Isabella can handle. I miss my family and friends but I am not willing to sacrifice Isabella in the process. I am not going to set her up to fail and cause her to regress further. Since Isabella’s ABI, family and friends either mail gifts or drop them off when she is in bed asleep. This also allows me to visit with them while she is sleeping.
6.) Christmas shopping is done entirely online. At this time of year, the stores are absolute chaos. For a person with a brain injury who already has sensory overload, stores are a disaster waiting to happen. To eliminate this, we shop online. No babies crying, no perfume to smell, no loud music, no crowds, no long lines, no people talking too loud, no blinking Christmas lights etc.
While Christmas maybe very different from how it once was we make the best of what we do have. The true meaning of Christmas is what is important. The twinkle in her eyes as she talks about Santa, the magic in watching her decorate the Christmas tree and the excitement is what really matters. It is not about whom you are with, how many presents there are, what parties you attended, it is about enjoying the simple moments. Isabella is my Christmas miracle. I am truly blessed to have another Christmas with her.
Guest Blogger, Kristin Olliney, is the mother of 7-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.