Saturday, November 15, 2014

My Facebook family

Let me tell you about this great group of people I was introduced to earlier this year.

I was added to a Facebook group after one of their members saw a blog post of mine. All of the members of this group have/had a child with x linked hydrocephalus (L1CAM). I thought we were the only ones and it turns out there are over 150 families in this group! They are from all over the world and I was fascinated. I got about 3 hours of sleep that night because I was so excited and just kept looking back at all of the posts and documents that told how old the kids were or where they were from. I finally felt good about what our son has. I finally had somewhere I could go to find support. I finally found someone that knew EXACTLY what we was going through.

Our group has become like family to me. I check it every day. I can vent about life, and praise about something our son has done that day. Either way, they cry or celebrate with me. I wish I had found them 2 years ago, but am so glad that I have them now. I only know them through the computer screen, but I love each and every one of them. I am SO EXCITED to meet some of them next summer when we are all getting together. I can only pray that everyone out there in "RARE syndrome" land can find a group like this.

We lost one of our own last week and I am pretty sure that we have all cried. This group of people were so amazing! We lifted up the family in prayer, we changed our Facebook profile pics in honor of him, and we offered words of encouragement, and wished we could have done more.

This loss has affected me so deeply. I can't help but think of our son and how long we have with him. I treasure each day we get to hold him in our arms. I love him so much I think my heart may burst and I can barely stand the thought of losing him. I am convinced that I will have to bury him someday. That is just the nature of this disorder. But today I will hold him. I will love him. And we will keep moving forward, with the support of this wonderful group.   

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