“Christmastime” -Lacy

I love this time of year! I love snuggling with my kids beside the soft glow of the Christmas tree and pretty decorations as they fall asleep. This is a magical time of year to see their faces light up as we drive through town or when they see there is a present under the tree with their name on it. The Christmas season is a great time to reflect on everything that has happened throughout the year. We have had some great times as a family. We try to talk about the meaning of Christmas with our kids. We talk about Jesus and the magic of the season. Our daughter Lexie is 6. She understands what Christmas is about but is also very excited for presents. She wants every toy that has ever been made, so she is pretty easy to shop for and has settled on asking Santa for a Barbie and slime. I think he can handle that. Jacob, on the other hand, is not so easy.

Jacob has Creatine Transporter Deficiency (CTD), which causes an Intellectual Delay and Speech Apraxia. This makes it hard for him to communicate his wants and needs. He has the basics down to request food and water and he can ask for certain shows like Mickey, Bubble Guppies, or Frosty. He has a few other phrases as well, but he can’t communicate like a typically developing 8-year-old. It gets hard to try to find a perfect gift for him. It gets even harder when family asks us what to get him. I know they get frustrated but sometimes there is no good answer.

We are not sure if he understands what Christmas is all about, but in small ways, I see that he can share that spirit with others. This past weekend the County Ambulance District held a Breakfast with Santa event for special needs kids. Jacob was so excited to see the decorations and toys. When it was our turn to see Santa, Lexie was very shy. Santa stood up to give her his chair and make her more comfortable. Jacob took this opportunity to jump into Santa’s arms and smiled the biggest grin I have ever seen. You could see the joy in both of their faces.

Jacob may not understand everything, but at that moment I knew he understood the magic of the season. To top the whole event off, Jacob won a bike they were giving away. He was so excited when I was able to pick it up the next day. He has never really been able to ride a bike, but when he saw it, he jumped right on and rode around the shop. He even shared the bike with his sister, which rarely happens. I had happy tears watching them. It makes me realize that sometimes, we just need to look around to see and feel the magic of the season.

As I reflect on this past year, I am grateful for many things. I am grateful for my family and friends who have supported us. I am so glad we found the Association for Creatine Deficiencies (ACD) at the beginning of the year. We are so blessed to be on this journey with Jacob. It may not be the path we would have chosen, but Jacob reminds us every day to look for the small miracles as they come. I look forward to all the things we will continue to learn in the year ahead.

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