My beautiful Allison was born on October 19, 1999. She was my third child at the time, and there were no issues with her full-term delivery. At around 16-months, we noticed that she was not reaching many of the usual mobility milestones. This is when more than ten years of testing began in an attempt to diagnose Ally’s muscle condition. We live in Northern Virginia and are privileged to be close to many of the best hospitals and doctors the world has to offer.
We tapped into every channel that we could in the hopes of finding out what was causing Ally’s delays. Many doctors suggested that she had some type of rare mitochondrial disorder which absolutely terrified us. Despite the years of testing and research, there were no answers for Ally. When she was 11-years-old, an MRI clearly demonstrated that she had a hypoplastic cerebellum.
Essentially, Ally’s cerebellum had not grown to full size. Thankfully, it did not appear to be shrinking. Ally was incredibly relieved to have a name for her condition and a better understanding of what was causing her motor skill issues. It was over the course of the next few years that our pediatrician helped us get accustomed to the label “mild cerebral palsy.” This was the best over-all descriptor for Ally’s condition.
As a parent of a child with mild CP, I have been filled with countless emotions. My oldest daughter Riley is a Type One diabetic, so I am intimately familiar with medical challenges on a daily basis. But Ally’s situation was much different from that of her sibling.
With Riley, we had a diagnosis from the beginning, and there are tremendous support groups available, such as the Juvenile Diabetes Research Foundation, to help families through this journey. Riley was able to go to camp with other Type One diabetics, she participated in a Children’s Congress in Washington, DC to emphasize the need for more research and funding, and she has reached out to children in other countries to help them manage their lives with diabetes.
Ally, on the other hand, had to wait for 10 years to even have a name given to her muscle issues. Our family called them “balance problems” for much of Ally’s life, because we didn’t have a better way to articulate it.
I have never been able to find anyone “just like Ally” and that was hard for us all. Undoubtedly, it was the hardest for Ally.
As the years went by, her friends peddled off on bicycles, joined soccer teams, or put on their ballet shoes. It frustrated and disappointed her regularly that she could not participate, but it did not stop her from trying. I recall watching the kids on our street engage in a huge game of hide and seek one afternoon when she was around eight. Ally knew that she could hide but that she was not fast enough to run away from any of them. I looked out and saw her sitting in the middle of my neighbor’s yard with a huge smile on her face. They had made her the “nurse/medical station” for the game, and it was the safe spot where all of the kids could run to. She had found a marvelous way to include herself in their game.
I suppose that one of the hardest parts for me as a parent of a child with mild CP has been forcing myself to step back and allow Ally to do more things with complete independence. The tasks may sound small; almost inconsequential to most, but they are part of daily living that many take for granted. For example, I no longer blow dry her hair for her. She has learned to do it herself and in her own way. She pours her own drinks from the large containers in the fridge, and I have to let it spill sometimes. She is nervous about using the stove, but I am slowly learning that she needs to discover her own way of accomplishing these skills to gain the independence that she’ll need to have when she heads off to college in three short years. It has not been easy for me to stop doing so many of the things I’ve readily done for her before, but I know it is critical for her future success.
When you love a child and you watch them face challenges, it can be very hard to stand by and let it happen. Seeing hurt and disappointment or watching a failed attempt is painful. On the other hand, it is incredibly rewarding to watch an individual stand up, face a challenge, and overcome it. I have seen Ally do this countless time. As a new high school student this year, she has been required to be extremely proactive in letting people know that she needs certain accommodations. Although I am still very active in the background and always there to support her, I know that she has found her own voice.
Despite these obstacles, she has grown into a beautiful and incredibly bright 15-year-old. She is passionate about many issues, plays the piano, and is a wonderful babysitter to her youngest sister. I know that she worries about tripping/falling on a regular basis, but she continues to hold her head up high and push on. Mild CP does not define her; it’s simply mixed in with the other traits that make up quite a remarkable young lady. Finding her own independence, in a way that works for her and is timed at her own pace, is a long path ahead. I applaud her perseverance and know that it will serve her well as she matures. I couldn’t be more proud of my daughter!
I hope you enjoyed the first article on the site from a parents perspective, and I hope this is only the first of many. As usually please like and share this post if you enjoyed it! And be sure to check out Betsy´s book as well!