My last sappy post of the trip, and then it’s back to the world of main man Connor, my wonderful husband who missed us dearly, weekly therapy, some more waiting…but mainly a feeling of relief.
As his hand grabs mine to hold, I’m thankful he has the strength to do that. I’m thankful that he’s recovering quickly from the flu. Thankful that while the flu knocked him off his feet (literally), he was able to take a few steps today and that he can get right back into PT after this major regression.
I’m thankful that we’ve had this amazing opportunity to learn more about him and the potential answers in the future. While the shock of not having an actual diagnosis took us by surprise, we can relax in the fact that we have done all that we can do at this point. My biggest struggle as a mother is not having a prognosis. While we know that we can treat the symptoms, we have no idea what the future holds. Will all of his symptoms disappear? Will be lose the ability to walk or talk? Will he fight even harder to be the head of his class? Will he have cognitive disadvantages in addition to his physical? Despite those unknowns, it’s also so wonderful that this team of doctors is going to continue to fight for a diagnosis in the coming months. They took additional blood and biopsies from all 3 of us, and want desperately to know if anything can be linked to him, or if he truly is a one of a kind unicorn with his own syndrome.
He will have a 3-6 month wait for those results, a repeat swallow study, and a repeat MRI once he turns 2…any physical changes in his brain (if there are any) should be seen at that point. It’s a never never ending game of “what’s next”.
Regardless of the outcome, we have learned patience and understanding. We have made some amazing friends in the online communities full of families in similar situations. We have learned to persevere and fight for our child. We have learned that battles like this can make or break a couple, and it has surely made us stronger. We have learned that each day is a gift, and that the future is never known. So hug your babies tight, be thankful for the little accomplishments, and never take a single day for granted.
“It’s the sweet simple things in life which are the real ones afterall” – Laura Ingalls Wilder