It was this time last year when doctors finally started listening to me. We got confirmation, after what felt like forever, that something “wasn’t normal (I hate this word)” with Blake’s development. Facebook has been reminding me of appointments, cryptic worry and all the unknowns during that time. It brings up more questions like, “Why didn’t I push harder? If I did, we could’ve known sooner.”
I write letters to the girls for all kinds of things; their birth stories, important times in their lives, birthdays, etc. Almost to the day, last year I wrote Blakey this letter:
To my Blakey,
I’ve been waiting to write this letter to you for a while. There has been a lot going on but there is more to it than that. I didn’t want to write the wrong thing. See, I knew something wasn’t quite right for a while. It wasn’t until your 4 month checkup that my suspicions were actually confirmed. They told your Daddy and me that you have low tone. Your muscles don’t act like the average person so moving your body is very difficult. I was so scared for you. Sometimes worst case scenario comes up and that is something I just cannot handle or accept. One thing we’ve been told over and over, you’ll get tired easily but once you start to work your muscles in physical therapy, you will get stronger. We went to Seattle Children’s and they saw no signs of whatever is causing this to be neurological. That was a huge relief for your Dad and me. What we know now is you will get stronger, that is what we’re focused on.
My point for writing to you is I want you to know that from the very beginning your Dad and I have fought for you. We are doing absolutely everything we can to make sure you have what you need. We are researching, making appointments, talking to people and advocating for you in all the ways we know how. We want you to have everything that you want and we know you will. You are the sweetest little baby. I can’t tell you how many times a day your sister looks and you and says “ahhh cuuute” (she just did it as I’m typing and you’re napping on my chest). You always smile. You love to make noises, coo, babble. You have the most beautiful blue eyes (everyone says so!). You and your sister are our whole world. We will never stop making sure you get the right care, see the right people and get to experience absolutely everything you desire. We love you so much baby girl. Things didn’t start off how we expected but I have a feeling you’re about to show everyone just how strong you really are.
They were wrong. Deep in my gut I knew “nothing neurological” was the wrong answer but I wanted that answer. I wanted that answer more than anything I’ve wanted in my whole life. Worst case scenario happened. It happened in an unbelievably horrific way.
I sit here at 2am, a year later, without my baby to hold. Life is fucked up sometimes.
Blake never got stronger physically. SMA robbed her of so many things she deserved to have. But she was so strong. In her short little life, she showed Jeff and I what true strength is. We carry that with us every day as we try to make it without her here.
She was and continues to be such a precious gift.