Wednesday, July 7

When our daughter was first diagnosed with Neurofibromatosis (also known as NF) we went to a symposium to hear about other people's experience with the disorder. It was at a local library and it seemed like a really good way to gain more understanding. Although we knew it was a good event to attend, we were honestly dreading it. Upon our arrival we noticed the sign on the door....Children's Tumor Foundation. I instantly had a giant lump in my throat. I honestly didn't want to go in. I just kept thinking how in the world are we now connected with a group called the Children's Tumor Foundation. I feel like I have heard stories of people dealing with tumors or disabilities but it has never hit close to home. Now we were the parents of a child with NF and in a few minutes I would have to introduce myself and say that my sweet daughter has this condition. I felt like saying it out loud to a group of people would make it that much more real in our lives...and it did. We walked away from that meeting with a mix of emotions. Of course I had tears. Tears for what is unknown in her future. Tears that we now pray every night against the growth of tumors. Tears for any possible pain she might endure. But I also left encouraged. I had found a group of people who had walked the road I am now on. I saw people with NF who were doing wonderfully. I found out about research that will hopefully find a cure. I found support.

At this point Claire shows no real complications of NF. She is a normal, healthy, and might I add darling little girl. For this we are so, so, so thankful and we pray that this is the case her entire life. My husband and I could have let our fear or grief stop us from meeting others in the Children's Tumor Foundation. I am so glad that it didn't. My encouragement for you is to find support when you encounter hard things. Seek people out who have walked down the road you are on. I have found that although sharing your heart with someone can hurt, the encouragement is well worth it.

1 comment:

Anonymous said...

So powerful,thanks