My relationship with God is . . . decent. It’s not spectacular. I don’t think it’s ever been.
Obviously that’s almost 100% my own fault. (At the same time, I’ve always thought it wouldn’t kill God to be a tiny bit more communicative with folks who have already devoted their lives to God. I mean, would it be so hard to speak audibly every so often to someone who’s been a Christian her whole entire life?)
Anyway, all this is to say, I don’t always really know what I’m talking about when I talk about God. There are others who know God a lot better than I do. I’m no super-disciple or anything.
But I am a believer and continue to be a half-assed follower, for reasons I don’t fully understand myself.
And all I know is that when I was begging God to save my son’s life, I promised God that if God followed through, I would give God ALL the credit and ALL the glory. “The world will hear what you’ve done and will worship you for it,” I vowed. “YOU will be glorified, and your love and power will be seen.”
So I want to keep my end of that promise.
I want to shout it out: Felix’s incredible healing — though it happened through doctors and science and medicine — was all God’s doing. I believe it with all of my being.
God stepped into my family’s life and worked an amazing miracle. And God deserves all the glory.
It’s not fair, of course. We don’t deserve it. So many families who are way godlier than us haven’t received this kind of blessing and it doesn’t make any sense. I don’t understand it. But God decided, for some reason, to extend his grace to us and allow us to watch our son experience miraculous healing.
And I want to spread the good news.
God saved our son.
I believe prayer played a part. I don’t understand prayer any better than I understand God, but I do believe prayer has power.
So, so many of you prayed for Felix. Even when I couldn’t. People all around the world rallied around Felix in prayer. Friends, family, strangers, and a group of nuns in Missouri. Christians, Buddhists, and even an atheist friend. Felix’s doctors laid hands on him and prayed for him with tears streaming down their faces. You begged God to heal him. And God responded.
So many people participated in Felix’s healing. Dr. Kohn and his team in Los Angeles. Our incredible doctors in London who have become lifelong friends. Our doctor’s secretary and the pharmacists who made enormous sacrifices for Felix. The loving nurses and nurse practitioners, the kind janitorial staff, the dietitian — all played valuable roles. The medical community as a whole, and the amazing health care system in Canada . . . this couldn’t have happened without them.
But it all comes back to God.
I believe that all good things come from God. ALL good things.
And we have experienced a good thing. Just look at him.
I wanted to review some of the miracles we experienced with Felix in the last year.
Felix’s disease was caught by newborn screening.
Newborn screening for SCID only started in Ontario the year before Felix was born. It still doesn’t happen in all provinces in Canada or all states in the US.
In fact, if Felix would have been conceived when we first started trying for a baby in 2012, he would have been born too early to be caught. (So . . . yay for sub-fertility?)
There’s no way of knowing what would have happened if it hadn’t been for his early diagnosis. Who knows how sick he would have gotten before getting a diagnosis. I personally don’t think he would have survived — he already barely made it, even with such early intervention.
It’s amazing that Felix was born in the right place at the right time to get early treatment.
Felix Didn’t Die from CMV
When our doctors discovered Felix had caught cytomegalo virus (CMV), they sat us down with a nurse practitioner who specialized in end-of-life care. We didn’t know if he was going to make it and they wanted us to be ready. CMV is one of the biggest killers of SCID children. For a few days we watched in agony, waiting for signs that his body was shutting down. We have been on tenterhooks ever since.
But it never happened. He never showed any strong signs of infection. He got started on anti-viral medications, as well as enzyme injections to help build up an immune system. and after a few weeks his viral load began to go down. After a few months it became almost undetectable in his blood stream.
Felix became vulnerable to the virus again when he underwent chemotherapy. Some doctors feared the CMV would rear up and kill him.
But again, it never happened. In fact, his counts never increased beyond barely-detectable levels. He has now reached the point where he is almost completely safe from CMV disease.
Felix Was Accepted in the Gene Therapy Trial
Felix was number 14 out of 15 children accepted in the gene therapy trial in L.A.
When we were first learning about gene therapy, the trial was only open to 10 children and was already full, but there was the possibility of the number being extended to include five more. There was already a waiting list. (But he made it in!)
In order to be accepted, Felix had to undergo rigorous examination to make sure he was healthy enough to quality. God ensured that Felix was well enough to receive the treatment, and that the CMV didn’t interfere with his acceptance.
Again, there’s no way of knowing what treatment Felix may have eventually received if gene therapy hadn’t been an option, but I completely believe gene therapy was the very best option for him.
(Side note: when Felix was first diagnosed, we were told that his best chance for survival would be through a bone marrow transplant, and that a matched sibling donor was the absolute best option. I was convinced Lydia would be the donor who would save his life. I was so grateful Felix had a sibling to make that possible. When we got the news that Lydia wasn’t a match, I locked myself in a bathroom and screamed at God. How could he let this happen?? But God had other plans.)
* * *
If I’m completely honest, I still have trouble trusting that God will continue to follow through. I’m constantly terrified that something awful and unexpected is going to creep up and we’re going to lose him anyway. (Or more likely, that he will still suffer long-term health or development problems.)
But I don’t want to lose sight of the miracles we’ve already seen. God has brought us this far and I am learning to trust that God will see us through to the end.
Thanks for walking through this with me.