I am sitting here trying to get a grip on things… trying to find some measure of comfort in the small things in life, or at the very least trying to muster some courage, some strength but for the moment I feel empty, numb and afraid.
Today we had an unexpected ECHO appointment for Josh, after noticing some things that are signs of heart failure we thought it best to have the doctor know what was going on, she asked us to come in right away. Today we found out that he will most likely need that leaky tricuspid replaced. In fact, we are facing open heart within the next few months. Is this real? Or, am I still sleeping and this is a nightmare? When is enough enough?
Psalm 40 asks the question ‘How long must I sing this song’? and as I sat in the doctors office today I found myself asking the same question. How long? How long does Josh need to suffer? How long until this nightmare ends? How long until we can rest? How long until we can watch Josh without that silent fear that lurks in the background? How long before we can watch him sleep without questioning heart failure? How long must this go on? What is the purpose? Why? Why Josh? Why any child?
I am wanting to buy a few plane tickets, for four, and fly away, to hide. To take Josh somewhere safe, to a place where he can know only joy, only laughter, and not know another moment of pain, where he can feel full of life, not tired. My fear is that when we get there, his heart will follow, his pain will continue, our fears will catch up to us.
I am not ready, I am just not ready…