The day before Thanksgiving will always be marked with sadness now.
Today we learned that Logan has Spinal Muscular Atrophy Type 1. Devastated doesn’t begin to describe this feeling. I keep feeling like this is a nightmare that I will wake up from. But it isn’t.
This beautiful perfect baby boy that we fought to find a way to afford, that I fought to breastfeed, is now fighting for his life and its an uphill battle. The odds are not in our favor.
Brett and I (Tia) carry a recessive gene (1 in 40 do). Because of this, we have a 1 in 4 chance any future babies will have SMA.
This is most likely be his only Thanksgiving and only Christmas without going to heroic lengths. However, even doing that does not guarantee our time would be any longer with him.
We are planning on going to St. Louis Children’s Hospital to see a Neuromuscular specialist. They won’t tell us a different diagnoses but they may know of more cutting edge research/experiments/clinical trials we can try.
Words cannot describe our heartbreak. We have only told a few people. Lucas’ birthday is coming up first weekend in Dec. We are waiting to tell everyone until after his birthday. We do not want this to overshadow his party.
We are waiting to break the news to Lucas until we go to STL and figure out what we are doing and also speak to our counselor to see how to do so.
Brett and I have a deal. If he doesn’t check out I won’t either. We have to stay strong. This honestly feels like a dream. A nightmare that I will wake up from. I go from sobbing to being perfect fine, logical even. Its been exhausting.
This disorder is rare. My husband and I joke that we were Hitler and Hitler’s wife in a past life. That is why shitty stuff keeps happening to us. Just when we think things are going right we get smacked down again.
A Christmas miracle would be wonderful right about now.