When we got the “official” diagnosis for Emmie, I joined a group of some pretty amazing moms. Moms who have walked through fire themselves. Moms who have carried their children through fires and up mountains and through valleys. I didn’t know when I asked to join what a life line of support these women (mostly moms, some grandmoms and some even dads) would mean to me and to our family. I introduced myself living in the fog of the diagnosis and many, many hearts and virtual hands reached out, lifted up and loved on me. Little ol’ me. A complete stranger until that one paragraph and that one sentence: My daughter was diagnosed with neurofibromatosis type 1.
These moms have lifted us up, prayed for, sent messages, and suggestions as we have walked these two years with NF.
In June, we pooled our skymiles together and I headed to Texas to actually meet several of these warrior moms.
This is our Georgia crew with the amazing Dr. Wolf in the middle of us. Every other year, the NF Forum (for families who are dealing with NF) meets up with the NF Convention (the professionals who are dealing with NF). This was the year. Dr. Wolf ate supper with us and then spent the next several hours listening, agreeing, discussing all of the ins and outs of our kiddos NF issues. Renie was the very first NF mom to message me and has continually poured her heart in to our family and lifted up countless prayers for Super Ems. It was such a blessing to finally see her face to face!
This is part of my tribe. Part of my people. There are a lot of horrible things about Facebook, but this group of moms right here is above and beyond what is good!
Children’s Tumor Foundation is working hard to fund research to give us a world without so much fighting. Please consider signing up to walk or join our team!