I wonder how long it takes until you can talk about your child's illness without crying? I realized this week that there isn't a day that goes by where I don't shed a tear. It's like "break through" pain that escaped my vault. The vault of where I store my heartache for all that's happened this past year and the uncertainty of the future. As hard as I try, I can't stop images of Julian in a coma, completely swollen, looking like a different person laying there from creeping into my mind. Most of the time I'm spaced out from all of the holding back of the emotional dam.
Last week, myself as well as the rest of my kids had to go get tested for this mutated gene and for the function of the cells related to this gene (NK cells). I learned that there is a 50% chance that I passed it on and we already know that I have to have one copy of the gene for Julian to have gotten it. Most of the research articles published about the gene mutation that I have are people whom died of HLH and had one copy of the gene. Julian has two copies which places him at a higher risk. I suppose each day I will take a baby step closer to learning how to live with the "uncertainty" of life.
I have a goal to organize a bone marrow drive and have found out that there needs to be a fundraiser done first. This is to help cover the costs of having people tested and placed on the bone marrow registry. The cost is approximately $100 per person. The fundraising is what I'm having difficulty with. My ideas keep hitting a brick wall and I don't have the strength right now aggressively persue it. I'm still working away at it.
In the meantime I have I am finding great comfort in my beatiful 10 month baby and in seeing Julian thrive as a football quarterback and maintaining straight A's. He is amazing and doing so well. His recovery really is a miracle. God is so powerful!