Coming Up With A Treatment Plan
Recently this topic was suggested to me and to be honest, I have sat with my feelings on this for quite some time. If you are reading this as a parent navigating this new diagnosis, I assume you are in the thick of a lot of difficult feelings.
As my husband says- you're basically drinking through a firehose. You most likely never could have imagined you'd be here.
The overwhelming thoughts and feelings of a diagnosis
Searching the corners of the internet at 3 am looking for answers. I get it, I was there.
My daughter Stella was diagnosed with SMA at a month old. I had found out I was a carrier for SMA, but the need for further testing didn't seem imperative.
We didn't know our state didn't screen for SMA at birth. Hell, We even had a doctor straight up tell us our daughter didn't have SMA (before there were concerns).
Navigating the feelings you are having is valid, overwhelming, and hard. But you are not alone.
There is more hope with SMA today
SMA looks different today. This is something I learned early on. Adults are living with SMA and thriving.
They are authors, business owners, parents, living amazing fulfilling lives and changing the world. But when you google spinal muscular atrophy, that's not what you see.
Learning about palliative care
You see the hard, awful facts. We first googled SMA in the hospital before Stella was officially diagnosed and that is enough to send any parent into a tailspin of fear. We were smack in the middle of learning what palliative care was when I should have been at home, snuggling with my newborn.
I didn't know what palliative care was, but it was a godsend. Having someone to discuss extremely difficult, life-saving options for your baby is unimaginable. But also, necessary.
Our medical team was expansive almost overnight. I was hearing words I didn't understand, acronyms that made no sense to me. Everything was happening so quickly and so slowly at the same time.
Asking for help to navigate the diagnosis
Ask all the questions. Write them down. Starting a notebook and binder for Stella's care was something that helped me get organized.
Asking for help was a big step for me to take as a parent when it came to understanding SMA and the treatment options that were available.
A social worker through our hospital was extremely helpful in getting outside resources for us when it came to state care. Utilizing these resources have eased our lives and helped us feel confident when making decisions.
Is self advocacy a part of your daily life?