Felix’s Miracles (Or: To God Be the Glory)

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.

happy felix blog

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.

unnatural healing

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

gene therapy - transplant

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.)

* * *

sleeping felixIf 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.

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  1. Hallelujah! He’s done a good thing. I was so sick about what you were going through. Thank you Jesus for answering in this way. I’m glad you continue to be a half assed follower. ;)

  2. This is so beautiful. What a witness to the strange and powerful ways God works – all those miracles. I keep praying for your family!
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  3. Our family continues to pray for Felix (and the rest of your family) every day. Praise be to God!

  4. Christine says:

    Truly amazing!! God is definitely being glorified!

  5. I have been following you from the beginning and I so look forward to your updates! I am so happy to see how well he is doing. To God be the glory! Awesome!!

  6. Giving credit where credit is due… wow, when you write it like this it just shows His miraculous power in your lives! Thank you for sharing. I love following your story of God’s goodness. We all need these kind of reminders from time to time.

  7. Such sweet mercy in Felix’s little life. Yay!
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  8. I am so happy to read this post! I have been with you from the beginning of Felix’s story and have been praying for you. I know you have suffered greatly. None of us can fully understand what you have endured. What we can see is that God has equipped you with what you needed to get through it.

    From my view on the outside, I believe God gave Felix an immediate purpose in life – to teach doctors and the medical community more about SCID and how to treat it.

    All along, I have believed that Felix was born to the perfect set of parents. You and Ben had access to the medical care that Felix would need. You have a network of family, friends and blog readers who would pray for you. You knew to ask for prayer. Most likely, someone in that network is a righteous person whose prayers have great power. You had access to friends and family that could help care for Lydia. Those same people helped acquire the financial support you would need during your extended time without income.

    I am certain, too, that many children in the future will benefit by what was learned from Felix’s journey. Through Felix, God has blessed other families. From the outside, it looks like God had a perfect plan.

    May God continue to bless you and your family.

  9. Coriander says:

    What a blessing it is to see that a sister in Christ has been being brought through hard times by His love. Thanks to God for His grace and mercy though we deserve none of it! The good health of your child brings me gladness, who knows what else may be accomplished by your trudging along through these times!

  10. Nicole A. says:

    What a lovely and amazing post. It was heartbreaking to read the posts as Felix’s illness unfolded and what was to come. But to reflect now vs a year ago, so much to be thankful for. I thought about you and your family a lot….just reading about what you were going through. I can’t imagine actually living it. and now, what progress he has made! I pray that things are only uphill from here!

  11. Thanks for sharing :) I’ve had my own ups and downs with faith and half-assery. After going through my dad’s health issues last year,I have a new respect for God…. same as you said, He didn’t have to save him (because he’s God), but He did & I’m grateful. Don’t have all the answers, but can’t help but acknowledge that he’s God. Praising Him with you for the life of your son :)

  12. Praise be to God, now and forever! Felix is such a gift! I got chills when I read that, if he would have been conceived and born earlier, the outcome could have been very, very different. God does have a reason to make us wait, that we can’t always understand! Thanks for sharing.
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  13. Thanks be to God for Grace and Healing (and yeah, I think most folks have felt that god might be a little less shy about keeping in touch…alas). Blessings.

  14. Thank you for your sincerity. I have been praying that your family could be strengthened during this challenging time. You have been through quite a journey, and I think your feelings are very understandable. I have been watching my son go through a short illness (minor and not likely life threatening in the scheme of things). It has become a trial of faith for him that his prayers for healing were not granted. I wanted God to manifest himself to my son in the way I thought would build his faith the most, and it didn’t happen that way. So, I have been left to a lot of thoughts. I thought of Mary, who kept many things and pondered them in her heart. No doubt she was processing and wondering at the things happening to her son. I thought of Hannah this morning, and her consecrating her son to God, by my understanding, in a literal and physical way of turning over his care to another at a young age. (I wouldn’t really want to do that at all, even if I had promised!) I try and be ready to accept God’s will for my family (which is easier when times are smooth) but really, it is hard to consider the reality that my will and God’s will can often not be the same. Will my faith be sufficient when the trials get harder? If I were in your shoes, facing life-threatening challenges, would my faith be sufficient? I pray that it will, and that these experiences serve to strengthen my trust in God. I do believe He loves us all perfectly, even when our trials lead us to doubt that. Bless you and your family, and thanks be to God! He can and has worked miracles for your family.

  15. So raw, so beautiful – thank you God for healing Felix, and continue to provide full and total healing!

  16. Thank you for sharing. Praise God from whom all blessings flow.
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  17. Thank you for sharing! I have been with you since the beginning of Felix’s journey and am one of those who have been praying for you, a fellow sister in Christ, whom I’ve never met. Thank you for your honesty. You are an inspiration to all of us who “don’t really get it” but follow anyway.

  18. somehow i missed this one!
    that part about if you had conceived him when you originally started trying….wow. i never thought about it like that. it makes you reconsider what a “good thing” from God really is.

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