Lately I have been really struggling with the whole concept of having faith. It is hard for me to keep hope and be optimistic when I feel surrounded by not only Sonzee, but other little children trying to battle incurable disorders and diseases. I realize it is during these types of times that I should feel the magnetic pull to G-d to place my fears, frustrations, and questions on him...but for some reason, I just cannot. I am unsure if it is because I secretly believe I have some sort of control of how anything in my life is supposed to go and "having faith" admits that I am relying on something other than myself, or am I afraid that having faith puts me in a vulnerable position to be extremely disappointed with the outcome?
The biggest challenge with my ability to keep faith is that I feel like for the past two years I have been relying on my faith to get me through and I continuously feel "let down". Maybe that is not necessarily fair considering how many times in the past two years Sonzee has scarcely made it out of various situations; but truthfully, it just feels like it prolongs the war and has not really gotten us completely out of the trenches. I do not even believe being told we are "in the all clear" is at all possible with a diagnosis like CDKL5, but it just continuously feels like we are being lifted up to crash back down. Am I feeling this solely because my faith is wavering?
When we have been faced with situations I try to look, focus, and believe in what the best-case scenario might turn out to be...and the majority (if not every time) that is never how our reality turns out. It becomes an arduous task to continuously set myself up for the potential disappointment, which to be honest in our case is typically not potential but actually, more likely. If there is a "rare" complication/side effect, you can bet money that it has Sonzee's name on it; complications that are even rare to other children who have CDKL5 mutations. 27 months of watching my baby girl suffer has drained a lot of my faith and I am desperately trying to not lose it all, but every day it is becoming increasingly difficult.