Holding On Is Hard

One of the hardest things about having kids with rare diseases is holding on to your faith and trust in God when the world keeps reaffirming that your kids really are sick. We pray for healing and hope that God will answer our prayers.... that hope keeps us going. Holding on to that hope is difficult int he face of constant infections and all that SDS and Mito brings into our lives.

I am certainly thankful for the daily miracles and the fact that things aren't worse. We've met so many kids on our journey who have it worse than our boys or who have died.. I often wonder why God hasn't chosen to heal our friends, either.  Knowing that He can heal all of these children, but has not chosen to do so is hard to accept sometimes. *sighs*  I do believe that God's will is perfect and that He has a plan, but sometimes, I admit, I want Him to choose my plan instead. You know the plan where I'm just a homeschooling soccer mom who bakes cookies and drives her kids to sporting events.

J will be starting IGG again. I KNOW he needs it. All of his doctors agree.  We did infusions for 9 1/2 years and trialed off for the past year. It's been a rough year. Infection after infection. I'm sick of the hospital, doctors and antibiotics.  High doses of heavy duty antibiotics.  It sounds crazy to say, "My son is on a daily antibiotic and two more to fight an active infection," doesn't it?  We had all been hoping that God had healed him and he no longer needed IGG.

Sitting in the doctor's office today was surreal.  I'd been begging God all week to somehow make it stop.  Earlier this week, it was hard to hear that five doctors agree as the doctor said, "He's going back on and we are never trialing off again!"  I held out hope that somehow everyone was misrepresenting what the immunologist REALLY meant.... so I thought there was a possibility we'd get there and he would disagree with the other four doctors and the disaster would be averted..  IGG is a blood product.  It is fairly safe, but with blood products there is always a risk of infection. The risk is there, no matter how small it might be.

I'm not a saint. In fact,  I've been telling God all week that He has confused me with Mother Teresa or some other saint. I've asked him why J and not S.  S takes things in stride while J has such a hard time.  Yes, we always offer it up and try to count our blessings. Today, I'm still in shock that my child really has a disease and needs IGG.  I guess my hopes for healing have been dashed by the fact that we're restarting infusions. We'll begin again to morrow and continue to pray for healing, if it is His will.  Every once in a while, we just need to have our moment of saddness.  Living with chronic illness is difficult. Having God with us makes it easier to bear this trial.  We'll gt through this with His grace.