Recently, with the encouragement of my friend Barb, I began volunteering at Minneapolis Children's Hospital. Having spent so much time there and with so many different children, I though I may be able to add insight into policies and procedures that would make Children's an even better place to receive care of children. I have also been able to speak to groups about our experiences. In preparing for a presentation last week, I found a picture of McKenna right after she was born. The nurses were hesitant to have us take a picture of the encephalocele on the back of her head. They kept covering up with a towel. This is the only photo we have of it and I am thankful that we have one. An encephalocele is an opening in the back of the skull. The lining of the brain that pushes out of that opening and the sack then fills with brain fluid. A varying degree of brain tissue can also be lost in the sack this later removed. McKenna's encephalocele was very large--almost the size of her head. She did have brain tissue that protuded into the sack...thus causing McKenna moderate cognitive disability. When I was pregnant and received the diagnosis, a doctor told us that she would have no quality of life., as she was suggesting termination of the pregnancy.
And now she is 18 years old. It is hard to believe that we have come this far with her. We did not know at the time of that first photo if she would even live beyond that day. But we knew one thing, we would fight for her and love her however God had given her to us and for however long God had allowed her to be here on earth.
She is a senior in high school. She works at Salvation Army. She gets sad most everyday that she won't be able to drive or marry Zac Efron. She doesn't read much or write much....but she loves much. She doesn't forget to tell everyone, everyday that she loves them. She has an incredible sense of humor and she tells it like it is...if your old or chunky or balding...she is going to try to hold in her thoughts...but it won't be long before she is going to say something like..."I shouldn't say this because my Mom will get mad at me, but your hair looks funny." And then she will be sure to tell you "sorry" over and over again. And despite her challenges, she has proven that the quality of a life is not measured by the world's standards of being a "contributing member of society." Quality of life has nothing to do with how smart we are, how gifted we are, or how much money we can ultimately make...in fact, it has nothing to do with us.
Quality in life should only be measured the standards that God sets. If God is using you, you have quality of life. If that means you can barely move a muscle and you need to be taken care of by others like our sweet Isaac--but God is using you to touch the hearts of others..to open their souls to what it really means to "be still and know that I am God.." you have immeasurable quality of life. Isaac sings in Church...the older and more classic the hymn, the louder he sings and when the song is over...he keeps singing! I debate every week over whether I should take him out because he could be distracting to others. But, I believe that God has given him this voice (one that is specially saved for singing hymns to God) and that God will use the gift he did not waste on Issac and touch the hearts of others. I know God has used McKenna and Isaac to change the way I view myself and God and I am certain that I am not the only one who has been transformed. Now that is quality of life....
