Part of a New Family

We just got back from a conference for families of spinal muscular atrophy. We were not looking forward to the long drive to Minneapolis and going to something we wished we weren't a part of.  Another father we met there said its the club that no one wants to be in. But we are and after being with these other amazing families our hearts were really changed and lifted. I think before I was afraid of Luke not only dying, but living also. Would he be happy living with such a severe disability? Would other kids tease him and stuff like that. I found out these SMA kids are confident and happy and full of life. Watching them drive around in their power wheelchairs just having a blast made me so excited for Luke's life. They are social and bright and love life despite being so different. We heard from lots of adults with SMA that have done so much with their lives and are glad they are the way they are. We connected with families that know exactly how we are feeling and we are so encouraged. We even met parents who had lost a child to SMA that still come to the conferences and raise money for research and encourage other families going through the same thing. We really aren't alone. We can do this. We went there with heavy hearts and feel lighter now. Hopeful. I'm so grateful to God for bringing us there. He knew we needed the support and connections we now have.  Now we just need to get Luke some wheels!

Luke swimming with Max, also type 2 sma

Luke loves the water. Its one of the best therapies for his muscles.

Livi loves playing with her Daddy. She's such a sweet sister to Luke and the best at making him laugh.