Learn to be Thankful for What you Already Have, While you Pursue all that You Want
– Jim Rohn
A month ago, I sat in the waiting room as Maxwell finished up his horse therapy session. Gone are the days where his episodes of jerky, uncontrollable movements could be confused with a developing baby. Gone are the days when the movement disorder was easily disguised as a sudden chill. I used to cringe as the small talk in the grocery store check-out line would lead to a stranger asking Maxwell “How old are you?” I knew Maxwell could not answer and wasn’t sure if I should answer for him or say he couldn’t speak. After an awkward moment, the person would glance away and often the conversation would come to an abrupt stop. I have fewer of those conversations now as Maxwell’s disability become more visible.
Perspective is a funny thing.
Sometimes we lose it. Sometimes we gain it. Often we go back and forth.
As a rare disease mother, it can feel like you’re balancing on a tight rope, with two directions to fall. One in which you would be swallowed up in grief, stress, and sadness, and the other where you purposefully seek out joy. I wish I could say that I was a 100% joy-seeker, but that’s far from the truth. Sometimes the winds just push too hard in the other direction.
COVID19 struck the world with a universal dose of reality. Life has drastically changed for everyone. Quarantine has been especially hard on medically complex children. Our days are very structured around Maxwell’s needs. Maxwell has 12 therapy sessions a week and our house is a revolving door of dedicated professionals. These professionals have become family to us. I work on SLC6A1 in the early morning, during nap and as late as I can stay up every single day. All of our structure and therapy ceased for social distancing. I try my best to step in as an occupational therapist, speech therapist, physical therapist, teacher, doctor, etc. I can’t say I’m very successful. The failure isn’t a lack of effort on my part but a lack of professional background.
The person that is suffering most is Maxwell. He has not received any formal therapy in weeks now. His developmental progress is stalled. He needs constant practice to master even the most basic of skills.
COVID19 has impacted the speed at which science is moving for children suffering from SLC6A1. I have maneuvered the organization as much as possible but scientists are restricted as to the number of people in a lab. Academic labs have had to euthanize laboratory animals bred as models for diseases as they have had to reduce populations due to extended closure without staff in place to care for lab animals. Important conferences have been cancelled as everyone is rightly focused on their family’s safety.
Fundraising will not be possible for some time as the nation recovers from the pandemic. We have decided to move our golf tournament from June to August. All of our wonderful friends are still holding birthday fundraisers on Facebook, sharing on our message on social media (especially LinkedIn!) and have plans to collect money for dress down days once offices and schools are back open. I doubt we will meet our fundraising goals for the year which will slow us down further. This is of course frustrating as well, not only for us, but millions of Americans trying to recover.
We are trying to work around this extreme nightmare hoping it ends quickly so we can find a new normal. In the meantime, I am finding in life that striving for mediocrity is sometimes the best we as mothers, caretakers and humans can possibly do.