By: Jessica Plassman
Questions. In the beginning, when Ida was first diagnosed with DYRK1A (and a separate but equally astounding FEVR diagnosis that caused low vision), all I had were questions. What will life be like for her? Will she have the same or different symptoms from others? What will life be like for me? For my husband? For our neurotypical kids? What happens when we die and aren’t able to care for her? The list goes on and on. The early days felt so overwhelming and insurmountable.
Ida was diagnosed at 6 weeks old. She is now 2.5. Since those early days, I continue to move through the stages of grief. Slowly those questions have turned from a crushing fear and general sadness regarding the futures of everyone in my family to the happiness and joy that abounds in the everyday. Sure, if I allow myself to think too far beyond this day or week, the gravity of the unknown and sadness creeps in. But, having a child with special needs has brought about a new path forward.
Outside of the unique challenges -- the laundry list of therapies, specialists, and medical interventions -- there is a child that is equal parts stubborn and enigmatic. Watching her learn and grow at her own pace is wonderfully rewarding. Her relationship with her older brother (4.5 years old) continues to blossom. Her expressive communication, and our understanding of her needs and desires, improves daily. She gets a thrill out of throwing her food and frustrating mommy and daddy. She’s absolutely adorable and gets away with too much as a result. She’s the happiest person I know.
What really makes my heart sore is watching both my children, enveloped in their childhood imaginations, living life to its fullest. Yesterday, it was pouring rain and the kids wanted to stay outside. So, we all ran around without inhibition and got soaked in the process. I laughed so hard and felt so much joy. I’m lucky to experience a million beautiful moments like this every single day.
For a long time, I felt thrust into a life of chaos. I was angry, sad, and selfish. Now, I relish the fact that raising Ida is a daily reminder of my own path to happiness.
For me, remaining in the moment and experiencing life at their level is the best gift I can give them and, simultaneously, give myself. Of course, presence is always a practice. But, if I can get this one thing right, this one thing I can control, I will have lived life to its fullest.