Having children with medical and developmental difficulties is an interesting life to live. You are always living in a state of chaos. You can't just expect normal things to happen. It's just the way it goes and I'm not sure any other family like ours would say otherwise. We don't just go to bed. We hook up feedings and ventilators, give reports to nurses and wake up wondering if are children are still breathing. I was asked this week if we ever get used to it -- the answer is yes and the answer is no.
One of the most difficult parts of this journey is thinking of the future. For some familes the future may hold an expected loss or death of their child and sometimes it simply holds a bucket of unknown. We have lived the "preparing for death" life and now we are holding our very own bucket of unknown. Living in the unknown can be very scary, but it also can provide an opportunity to write our own story.
This week I took Angela to the lab to have blood drawn to check on her levels of her new seizure medicine. I was looking over the paperwork and was reading over her list of diagnosis. My stomach turned when I read these words: severe mental retardation. My first instinct was to get out my cell, dial the hospital and give the neurologist a few choice words and then demand to have this inaccurate diagnosis removed from her list. Anyone who knows Angela will know that although her body is severely affected by both her birth injury and her genetic disorder, this girl is sharp as a tack.
When living a life of unknown it hurts when someone else tries to write in our book.
I wrestled with these feelings for quite some time, after all we ended up sitting in that lab for over three hours. It just kept eating away at me. Then I remembered a few weeks back -- I was at work and sitting in a staff brainstorming meeting. We were brainstorming possible topics in a upcoming sermon series. One of the topics mentioned was Does God Make Mistakes? -- talking about special needs and illness. We went on to brainstorm who we could get to come present this topic. We felt that the best person would be an adult who has overcome a disability or illness. My soul started to beat with excitement -- I had this flash forward to twenty years and watched as my not so little Angela walked up on that stage and told her story -- a powerful story of healing and pushing through.
It left me breathless.
Yesterday as we sat at the lab my heart went from angry to inspired. Yes -- I totally could call up the neurologist and ask to have this diagnosis removed. I never want Angela to grow up and get ahold of this list and be defined by what she reads. But then I paused.
Actually -- This diagnosis needs to stay.
One day she will read this list on a stage in front of thousands and will proudly declare...