One Year Later: Christianson Syndrome Update

It’s been an entire year since my little boy was diagnosed with a rare genetic disorder called Christianson Syndrome and so much has changed in our lives, but yet so much has remained the same. Thatcher is still a happy little boy, most of the time, but he is also now a 6’2″ thirteen year old who has raging teenage hormones and a love for his dog and his family. The past year has been quite an emotional roller coaster for my husband, son, and me, and Thatcher’s service dog, Saul just goes with the flow of it all, still adjusting himself to Thatcher’s needs, whatever they may be.

Thatcher still enjoys cuddles with his dad, even if they are almost the same height now.

A year ago, we received this devastating news and with it came the reality of a shortened life expectancy, a growth on Thatcher’s brain that we still don’t know about, an understanding of Thatcher’s healthcare needs as well as our own, and the frustration of a global pandemic all while my husband and I dealt with our emotional needs and I underwent a complete hysterectomy with an oophorectomy due to pain that I’d had in my left ovary since November of 2019. So much can happen in a year and yet a year seems so short, except now, in 2020 when we are facing the largest global pandemic since the 1918 Spanish Flu Pandemic. But now we have Zoom and Facebook and technology. And for as many downfalls as we can consider of technology, it is all made up for by the fact that I did not have to quit going to my own appointments simply because of a global pandemic.

Thatcher and Saul love riding in Dad’s car for a drive during the great pandemic of 2020.

There has been so much that I have learned this year about myself and about Thatcher that it is overwhelming to even write about what an adventure it has been. I have learned as a carrier of this rare gene mutation, that I too am affected by it on a biological level. I have also learned that there may be more to what I can accomplish that I had never before considered. Donnie, my husband and Thatcher’s father has also learned so much about himself and his family in the past year and we are surviving the best we can during what the world has condemned as a dark time in our world’s history.

Saul is living his best life getting to stay home just a bit more, though he missed going out for a while when things first shut down in March.

And we have met so many wonderful new people without ever leaving our home. The gift that this global pandemic has afforded us was the ability to actually meet with and talk to other parents whose children are like Thatcher via Zoom chats that happen once per week. We are living in a time of immense uncertainty, but we are surviving, day by day and Thatcher is continuing to live his best life as a homeschool student who learns by doing and interacting with his cousins and family. We still go out to the store and still go to therapies, even though that had been put on hold for a time period, but the landscape has changed somewhat.

Thatcher’s 6 year old cousin, Leora. They share a birthday, so she was hugging his Spider Man balloon.

Thatcher now rocks his big blue transport chair when we go out to the grocery and all of his family and friends are more understanding of his needs now that they better understand them. Thatcher wears his mask like a champ, most days and we continue to go to therapies, just as we had done last year, but with some slight adjustments. We avoid the park due to sanitary concerns (the equipment is difficult to clean and multiple people use it per day), but we go for drives and walks and we see friends and family when we are able, though it is not as often as it had been.

Thatcher’s new chair. It’s not easy to take apart and put back together, but he loves it and is so much more comfortable in it.

And finally, we face the challenges of each and every day with support from places we may have never even considered previously, so while 2020 has been deemed the worst year ever, and I don’t doubt that a bit, it has also been a blessing to my family in a time of personal crisis and so we move forward, closing out the year with a new way to spend time with family for the holidays and a new way to venture out into the world while maintaining our composure with a difficult diagnosis and an uncertain future.

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