When Sophie Kate was born and finally came home from the hospital we fell into what seemed like an endless cycle of appointments both with doctors and therapists. We couldn't string together 3 days without an appointment of some kind. We are on a much more manageable schedule now with her doctors, most of which we see every 6 months. Well, it's that time of year again...so this month and next we will be spending a lot of time downtown at Children's Hospital.
I really am grateful that we have a Children's Hospital so close to us and that we have been connected with many wonderful physicians, but it is not a place of healing for me. We spent so much time there in her first 3 years of life and still came home with our hearts hurting. When you care for a child with cerebral palsy there is a sense, in the medical community, of "this is just how she's gonna be." We have had therapists who have given up on her, we have doctors who only want to treat with more and more meds. No one wants to take the reins "medically speaking" and lead the charge here, each doctor just wants to take care of their specialty. There is no feel of people working together or communicating with each other in any way...so it all falls on me and I'm tired.
So my girl and I will go back to this place that hurts my heart so deeply, we will sit in the waiting rooms with some of the only folks on the planet that know how we feel and I will try with everything in me to keep it all together. We will discuss seizures and progress, or in their minds lack of progress, more medicines, X-rays, gtubes and the health of her lungs. I'll long for someone to come in with some fresh ideas or someone to even come in and speak to her first instead of me. They will look at her chart before they look at her and they will have already made their minds up about her before they even walk through the door. We'll then go home relieved that we don't have to go back for another 6 months.
We'll return to our place of healing, our home, our church, our community. The place where folks know her and know she is so much more than a diagnosis and a medical chart. I heard someone, who has been and still is going through great difficulty, say that God has restored them even though outwardly it may not appear that way. It has stuck with me and I will remember those words as I sit with my girl in multiple waiting rooms. We have been restored and redeemed by the Almighty and He determines our worth and in our worthless state He has deemed us worthy...worthy enough to send His Son to die for us.
Ephesians 1:7-8 "In Him we have redemption through His blood, the forgiveness of sins, in accordance with the riches of God's grace that He lavished on us."
Father God I know You have called us to do more than just survive this...You have called us to thrive and it is by Your hand that we do so. May we ever and always point to you both in plenty and in difficulty.