three steps forward, and two steps back....

I don't know why it is...I found myself overwhelmed with sadness as I sat at a frivolous doctors appointment with McKenna yesterday..I drove 46 miles to bring Kenna to an optometrist that was chosen by the SSI office to examine her eyes. An optometrist? I couldn't help but think of the 100 optometry offices I passed as I drove to this arbitrary one so far away. McKenna has always seen a specialty pediatric opthalmologist at the University of Minnesota. I worked hard to make sure that she saw the most qualified team of doctors as she was growing up..making sure that they were not only specialists in their field, but they knew how to deal with kids with special developmental needs. And then she turns 18, and just any doctor is now good enough. Even one who felt that if he kept repeating the directions to her, that she would eventually respond with the right answer. It wasn't going to happen...and no, doc, saying it louder won't help either. She is developmentally disabled, not hard of hearing.

It made me so sad..I don't know why..

In a way, I felt defeated...and exhausted. I couldn't stop the tears from rolling down my face as I filled out the medical history forms in the waiting room. As if could summarize a lifetime of medical care on a two sided form..that no one was going to read thoroughly or understand fully anyway. Instead, they would see a disabled adult, not my child. From before she had taken her first breath,  I tried to so hard to get her the best of care. But, now, I just settle for what her medical assistance will pay for? Do we just go to the doctor with the next available appointment? Her health needs are just as specialized at before--only her chronological age has changed..nothing else. Eighteen years of assembling the medical dream team, and now the big game is over, it seems. I suppose I am feeling the way athletes do after the crowds go home and the stands are empty. Life goes on for everyone else.  But, the game isn't over for us as McKenna's parents..it is just beginning in many ways...and we will learn to navigate the system again like we did 18 years ago.