This morning I am feeling a little tugging to get up and blog. When my friends ask...where is Steven, or when will he be back... or the afternoon of our Easter Egg Hunt when Steven ran off in an emergent bound to the lab because the coolers were warming up and the University called to let him know, this is what he is doing...he is fighting for families! Families of children with Rare Diseases, helping these children has become his mission.
Yesterday, Steven forwarded me an email from a sister of a child with a Rare Disease that is working on a remarkable awareness project for her sister. She is preparing for a 1/2 Marathon Blindfolded! She and Steven communicated that he would like to be there for this family on this special day. I quickly responded back to him that I thought he should definitely be there, that this was amazing act of love that this sister was doing. While I was on hold with an insurance company, I took a moment to click on her blog link that was attached to her email. As I read her post, tears streamed down my face.
A little past 7:00 last night Steven walked in from the lab, and we sat down for a bite to eat. The Pollies had already gotten their bathes, and had eaten. Jamie curdle up on the couch to watching TV and Aubrey was painting her toes...as if it matter that her nails be done on the last day of school...lol!
This gave us a few moments to chat. Quickly I looked at him and said...I cried today! He quickly responded..."Taylor?"...I said, "Yes". He said, I know. These families of these amazing children are fighting so hard, not just for halt on their disease but for awareness. They mean so much to Steven and I.
A few months back on Good Friday, Steven was crushed. One of our GAN families had lost one of their precious children. Five years ago, when Steven began this journey, he aimed everything for this child that hopefully she would be the first that he could do some good with. When this child lost her fight on Good Friday, it crushed him. Every day he is in the lab pushing more and more...fighting and fighting, the long hours for these amazing children. I feel truly blessed to be beside him every step, whether we are crying, cheering for more grants, or just plan exhausted from long weeks, I could not more proud than to be right here with him.
The tugging I was feeling was to pass along this blog post for you to see the compassion that these families have. Please take a moment to take a peek into their life.
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