Writing the Lilly Through The Valley posts have made me really step back to look back at my earlier beliefs and dreams. During a recent phone call with my mom, I saw the person I used to be, and the person I have become through the nine years of our journey. The balance between medical versus therapy life is hard and often I didn’t know what to do.
In Lilly’s life, during the ages of 0 to 3 years, I had the idea that meeting a goal meant we would celebrate and move on to the next goal; but my reality was far from that.
Often she would meet a goal, and we would party! Then, suddenly she would lose the progress she had made. We worked worked hard for several months to teach Lilly to roll over, and the day she did, it was amazing! She did it a few times and then just stopped. During that period she had a virus, which triggered a regression.
Once she got her strength back after the virus, I started working on her goals again. It was ingrained in me by my previous profession that kids need consistency, so we kept on.
When Lilly was a baby, some people encouraged me to stop doing therapy with her and to just focus on the medical aspect of her life; but I felt that everything could be rehab for Lilly, and if we didn’t work on things, she would never make progress.
How do you know what to focus on in the midst of a storm? Well, it’s a process that you learn as your child develops. Over the years, I have documented hundreds things in day to day life to figure out how to help Lilly; I got to the point where I just knew what she needed. In July 2017, she had a stay at PICU, and the rule book changed. Now there are three key aspects I focus on.
Medicinal side effects. I often overlook this, but over the years, Lilly has been on a lot of life saving medications and these all come with side effects. Some of the side effects have been hair loss and cognitive delays. This can affect how we do things.
Fatigue levels. When Lilly is tired, it is harder for her to do things. Lilly is only able to do more challenging activities within about a two hour. Afterwards, she often needs a low key activity or a nap.
Routine Therapy and Goals. I divide therapy activities into two areas; therapy that is built into our routine (to help maintain development), and therapy that is geared toward achieving her goals. When medical life is overwhelming, I will often pull back on goal setting therapies and just focus on maintaining routine therapy.
For us, medical related issues and therapy are all apart of life. We aren’t fighting anything, but instead we are focusing on giving our children the best lives possible. We manage medical life so that Lilly can live, but we do therapy so Lilly can enjoy life to the fullest.