My beautiful daughter

It was the coldest night of the year in Wisconsin on Saturday.  We had talked about going to the dance at her high school. This would be the second one  she has attended.  She clearly showed me on her iPad with the yes / no icon that she wanted to go!  Sometimes she pushes either button just to give me a response but this one was deliberate and as she looked into my eyes as she pushed it I felt her presence!  Her and I have bonded in a way that is hard to describe.  Since she hasn't really talked since 2006 I have learned her gestures, emotions and feelings in her expressions.  I wake up in the middle of the night if she is going to have a seizure-and I feel her frustration and a problem clearly before it happens.
This was one of the interactions that a felt like this.  If Meghan could talk like you and I, she would say something like this. "Mom thanks so much for thinking that I wanted to go to the  dance!" It's hard to have every picture available and every thought on paper to get her point across.  But, I felt I got it right this time.  This was more defined but the same theme as when I first took her to her first dance when she was in 6th grade.  I bring her in, take pictures and follow her around.  This time being high school it's allowing her to have more independence.  She still relies on me a lot and requires someone to watch out for her safety. Now we are trying to teach her how to be social.  She has lost those skills.  This beautiful friend of hers that we have had some interactions with from our church, came to the dance at the same time.  She was also the one that asked her to dance with their group.  For most, this really isn't a big deal but for Meghan and this group of friends it was very big.  She enjoys being around her peers and getting these short times of normal peer interaction, social experiences and fun is nothing short of pure joy for me!  I see her light up as she sees her friends and I see her friends trying to interact with her.  It's progress, it's life and it's beautiful to watch.
My eyes are open to new experiences to give to Meghan.  For most kids like Meghan, that have severe Epilepsy, we really don't know how long she will live.  This is the truth and something I keep close to my  heart and make the right decisions knowing that!  I honestly didn't think she would make it to high school and now here we are.  So when I see her growing, medically so much more stable and enjoying  her life as a highschooler at Arrowhead, I look for new opportunities that she will enjoy!  The dance being one of them.  I think as I find more experiences that she finds joy in she becomes more confident that she can do more and I think it opens more doors everyday for her future.
I know why God had me become an Occupational Therapist.  It was to learn that it was so important to give those skills to people to become more independent.  This is the same for Meghan.  I find it that there are some people that can do this naturally but most its very difficult.  It's difficult for them to let her fail.  Its hard to watch her struggle with zipping up her jacket.  It's painstaking heartbreaking to watch her forget how to do the simplest task.  But if we give up what will she do? Will she be better off if we do it for her and how will she function? That is why I continue to challenge her and give her opportunities that many would not do.  Some parents will resolve to have her stay home from the dance because it would be too hard, too emotional, too tiring and really didn't think there was a purpose.  I, on the other hand feel this is giving  her the confidence, success and the feeling of community at her high school.
I am very proud of meghan, and how she is improving in all aspects of her life.  It thrills me that she has so many interests and is willing to try new activities.  My beautiful Meghan will turn 16 this year.  Even though she will never drive a car and will need help the rest of her life, she has brought so much more to my life.  That is how I make sense of all of this.
For now, we enjoy these successes-actually they are miracles in our journey!  Find your miracles in your life and revel in them.