We have completed our two weeks of doctor and therapy appointments. It was a difficult two weeks both emotionally and physically. I am so thankful for the friends that went with us to each one. As I have said before it has become very difficult for me to get out with Sophie Kate by myself, their help made the last two weeks much more bearable. As usual, these appointments have lead to other appointments and as much as I would like to say that we're done...we're not.
Sophie Kate and I have a sleep study this week at Children's Hospital in which we will be doing pretty much everything but sleeping. We had appointments that lasted hours upon hours in which we discontinued medicines that aren't working, increased medicines that weren't doing their job as well as they had been and even add a couple of new ones. Sophie Kate will be having new equipment coming into a house that is already bulging with medical stuff. We had x-rays done and were fitted for splints and AFOs. Her pulmonologist is applying for more in home nursing hours for us which led to even more paperwork than normal. We talked to therapists, orthotists, nurses, social workers and doctors. We answered questions about our girl and our life from her birth until now that brought me to tears.
We were led very briefly into a quality of life discussion with our pulmonologist which he concluded with but we're not there...yet. Chad and I know we're "not there" but it's the "yet" that gets me. It's the "yet" that I cry over, it's the "yet" that keeps me up at night, it's the "yet" that causes my throat and chest to tighten up and makes it hard to breathe, it's the "yet" that I have been anticipating every day for 6 years.
When I look at her chart and read the doctors notes I can't help but feel each and every one of their words. It's painful to see the stuff I see written in black and white. It's not as if I go out of my way to read those things either, it just happens every now and then because of all the paperwork we have to read over, add to and sign off on. I read words like hypoxic ischemic encephalopathy and I feel sick. I see the words severe developmental delay and it makes me cry. I read their assessment of her and can't believe that this is really our reality. I know that their assessments and opinions do not define my daughter. I know that they don't see her beautiful smile and don't really know her sweet personality but there are times when we have to have these difficult conversations about our medically fragile child and it hurts.
In contrast to the difficult days we are experiencing right now, our Easter weekend was beautiful. We are rejoicing in good days and smiles and togetherness. Our Savior is active and alive and we have hope. We live under the wing of His protection. The Bible paints a beautiful picture of Jesus standing at the right hand of the Father at the stoning of Stephen. "But Stephen, full of the Holy Spirit looked up to heaven and saw the glory of God and Jesus standing at the right hand of God. 'Look' he said, 'I see heaven open and the Son of Man standing at the right hand of God'" Act 7:55-56. It is unthinkable to me that my Savior stands at the right hand of God the Father interceding on my behalf when life hits so hard that you think it will kill you. Tears stream down my face at the thought of Jesus on His feet for our family.
Jesus has conquered sin, death and the grave. He gives us life and hope and surrounds us with His all consuming love. We feel the pain of this life but know our treasure is in heaven.