I am not alone.

As I type this I am sitting in a chair, watching my daughter get rocked by a loving volunteer at the Canuck Place. We're here for our initial 3 day stay. This stay is for the nurses and doctors to get to know Layla's "normal". Her likes and dislikes, her funny quirks, how she sleeps, eats, rocks etc. So that in the future we will be able to drop Layla off for multiple days of respite. Such a crazy concept for me. After being her 24 hour caregiver it's hard for me to allow others to do all the things I normally do. When she gets worked up I just want to take her and make it better. But I have to allow them to do it because in the future I won't be around to help. Part of me wants to not do this. Receiving help is hard! Asking for help is even harder. It seems like they know that around here and so they just take the initiative. 

Today I met a two and a half year old boy that has type 1 SMA. Boy it was so hard to see him. His health is not well but man does he ever seem sweet. His eyes were barely open but I know he was looking to say hi, by waving his tiny little thumb. I felt my heart break for them. I had to escape to the washroom to have a good cry. It's so heartbreaking to know he doesn't have much time left. His parents were so so sweet. They approached me about Layla, assuming she too had SMA. They said she looked so similar to what their boy did at her age. I explained how they thought she did but have now ruled it out and we're back in the unknown. But it hit me hard when they said that.. What if she is heading down the same path as him?? What if she turns for the worst. I hate all these stupid unknowns we have!! Give me some answers. In meeting other parents and children here I very quickly realized that I am not alone. I am not the only person caring for a medically dependant child. In fact there are lots of people who have it a lot worse. It's not good to compare, I know that, but sometimes it helps a bit. It's nice to compare to kids similar to Layla rather than a "typical" 14 month old. 

I know we were supposed to sleep well having two nights without Layla but have not. I woke up multiple times throughout the nights. Worried about my baby. Wondering why I can't hear her breathing. But we're on the road to getting some rest in the coming months. It will get easier. In some aspects. 

Auntie making her laugh. She's so lucky to have loving family around.