Miracles

My grandma has a saying, "We don't believe in miracles, we expect them".

Our dear friend, J, had brain surgery yesterday. So far, he has not had another seizure. I consider this a miracle. I am so happy for him and his parents. At 14 months old, he is a warrior. I hope that he stays seizure free. I want him to enjoy food again and learn how to walk. I can't wait to watch him grow up. Brian and I are so proud of his warrior Mama, who will do anything for him, taking him wherever he needs to go to get the best of the best. I must be honest though and admit when I got the e-mail from her saying he was a perfect candidate, I was jealous for a moment. Jealous of brain surgery...who would have thought?

I remember when, what seemed so long ago, I went to the U to see if I was a candidate for surgery. There was so much hope. Such high expectations. In the end, after a week of evaluation, I was not eligible. I was in my early 20's and had the firm belief that, "This is it! This time, they will find something to help me". It was years later that I had my heart surgery, which ended up helping me. Timelines are different, miracles still happen, just in ways we don't expect.

Another child with Dravet Syndrome lost his fight today. Mark is the 12th child this year. He was 5 years old. We don't know who will be next. It could be Cole. All of us who have children with Dravet, are holding them a little closer today, hoping for the miracle to keep them.

I think back over this year, and see that even through the wallowing in the mire, there have been little miracles. We saw the introduction and the exit of the helmet. We finally got a diagnosis, for both of us. We figured out photosensitivity, and we got those precious FL-41 lenses. We raised enough money to get Cole a seizure alert dog. That in and of itself should be our miracle for the year! I do expect miracles. I think that I have just adjusted my attitude and expectations from what I believed was a 'miracle' when I was younger. Instead of the 'marvelous event manifesting a supernatural act of a divine agent' definition, I am more for the 'any amazing or wonderful occurrence' definition.

We know that there will probably be no magical healing for Cole. However, when I think about just a mere 10 months ago when my baby could not even talk, to now...that is magical. He talks my ear off sometimes! I dressed him up as a chicken last year for Halloween because all he could say was, "Bok Bawk!" I consider it a miracle that he says, "I love you, Mama". I have many friends who's deepest desire is to hear this phrase from their child.

It is a miracle that our little friend L has been holding on, fighting like a warrior for over 2 weeks! Some didn't even think she would make it through birth. It is a miracle that our friend B has been playing with toys this week, and using his hands meaningfully. We need to find the teeny tiny miracles in our lives everyday, as well as appreciating the big ones like brain surgery and surviving against all odds. Any wonderful occurrence can be celebrated. Even if it is Cole throwing my phone into the bath tub. At least he has the motor skills to bend over, pick it up and chuck it!!! It took me a while though to get the good out of that one.

I hope that I can crawl out of the dark for a bit each day and see the little things. Cole had a major seizure yesterday, but we celebrated that he had gone for 9 days without rescue medication and had practically no post-ictal period. Sometimes it is hard to find the good in the midst of the bad. You have to dig deep and look in the cracks, but it's there.