It doesn't end

    It's been **FIVE** years since I posted in this space. That sassy, spirited girl has grown into a creative, intelligent whirlwind of a young lady who is brave and stubborn. We are in Ohio now, off the farm and we have a diagnosis: specific immunogammaglobulin deficiency with no resistance to bacteria with polysaccharide coating which all boils down to she can't fight off germs that go for her lungs and sinuses.

     So now she receives IgG that has been taken from donated blood and concentrated to boost her immune system. Every week she gets two needles taped into her belly and the IgG infuses for 2 hours. She gets tired and achy and nauseous but it is so much better.

     Now we are focussed on healing and on dealing with the secondary issues. The heavy steroid use has left its mark on Lila and so now we focus on healthy behaviors and lifestyle as well as smaller issues that were overlooked before because her breathing was so fragile.

      I look at everything we went through and I don't know how we made it. I question my decisions. I look back and wonder if I did the best I could. I don't know. I worry about what all these experiences will do to her as an adult. And then I feel guilty for wondering because I met so many kids who aren't going to get to be adults on this journey.

      My heart aches when I think of all the ways I messed up as a friend, as a mother, and as the mother of a child with all these issues.

     But I'm going to keep writing. The request was made from some folks who know us and I think it's good for me. So keep me company here from time to time, ok?