"Mom! Let's get started, go get Drew!" These were the words I heard from my daughter the Sunday after Thanksgiving last year. That weekend is the start of our family's holiday traditions. I don't know who is more excited: our kids, or us parents. We gather in our family room surrounded by boxes with holiday music playing. Those boxes contain ornaments and special items that each of our four young adult children hold close and can't wait to take out. Each year, it's as if it were the first time they were uncovering the keepsakes inside. My son, who is diagnosed with multiple disabilities, is at ease in his happy place surrounded by his favorite people and listening to holiday music. I am content seeing how happy and present each of my kids are during this family moment. It wasn't always this way.
Andrew was born 25 years ago and entered the world with difficulty. His life has not been easy. He cannot walk or talk, and he cannot see very well. Seizures interrupt his days. He faces these challenges with a fighting strength. I am in awe of him, and surprisingly he has taught me more than anyone else ever has. Over the years, he has transported me into a mindset of viewing the world differently. My perspective on so many things has changed just because of him.
One thing that has changed is how I navigate the winter holiday season with Andrew. As an infant and even as a toddler, celebrating the holidays was pretty much typical. Gift giving and holiday celebrations weren't a challenge during those early years. Andrew's abilities weren't as delayed then. Comforting a crying baby during large family gatherings was just what many new parents experienced. Time with family, gift giving, and establishing our own family traditions was how those early years flowed.
Our own family grew, and Andrew's needs and the way we celebrated holidays changed – significantly. As Andrew grew older, his development stalled. It was heartbreaking to compare him with kids his same age. We struggled with how to make holidays special for him. Older aged toys, the latest video games, music, and sports gear were not of interest to our young son. Andrew was still interested in infant cause-and-effect toys and nursery rhyme music. We sought advice from other parents of kids with medical needs and searched online for any ideas on how to make his holiday special. After ten or so years of gifting the same types of items over and over, and struggling to find him these gifts, made Andrew's difficulties even more of a realization. Andrew would never be like the other kids his age. This was devastating and it became difficult to find joy and happiness any time, especially during the holidays. Holiday celebrations with our extended family became too much for Andrew as well. Even accessing other homes became impossible as Andrew grew. As all of this was happening, we had three other children who looked forward to all that the holiday season brings. We were trying to meet the needs of all four of our kids.
Over the years, as with everything with Andrew, we learned to adjust our lives to accommodate him and to really focus on his needs in addition to keeping some normalcy for our other children. This meant changing the focus and the direction that I had dreamed of even before we started a family. The 5am wakeup on Christmas morning for our extremely excited kids didn't mean that we had to wake up Andrew at 5am, too. We learned over time to relish in this magical time with Andrew's siblings. When Andrew did wake up, we could all dote on him at his own pace. He could enjoy Christmas morning fully awake, without an unexpected seizure. That was perfectly fine.
It was okay that Andrew's gifts were the same type of toys, or music, or his favorite foods - even today. These are gifts we know he enjoys. It's okay that his interests aren't the latest fad. His interests are his, and they are what motivate him. What I really love now about gift giving is that each of my kids, even at a younger age, go out of their way to purchase or make gifts for each other. They started that tradition. It's a whole thing!
We hang a ton of bright, colorful lights in our home during the holidays. Andrew can't see very well, and we will catch him being mesmerized by our glowing Christmas tree. We took note of this. His interest in the lights have led to us leaving Christmas lights up even longer after the holiday season comes to an end, and we even added them to his bedroom.
We have our own family traditions that each and every one of us finds special in our own ways, and that is all incredible! If I can offer just a tidbit of advice while navigating this difficult life: try not to stress when your life is not the life you thought you would be living. Find the joy in the moments you are living now. The joy is there, and that is what the holidays are all about.
About the Author
Rachel A. is mom to four children. Her first son was born full term, but with difficulty leading to a life that wasn't what she had prepared for. Rachel has found strength and support from other caregivers of children living with special needs. She hopes to share a little of what she's learned over these 25 years with other families. Rachel lives in Maryland with her husband and four children, dog, cat, and various foster kittens. She loves traveling, especially out west and to Sanibel Island, FL. She also enjoys spending time with her husband and kids, cooking, thrifting, listening to music, and spending time outdoors.
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