14 Comments

  1. Ok, I have to read this later after I compose myself…I only got as far as trust the wisdom of the older children!! *sniff* So so so true!! I’ll comment again shortly xx

  2. “It seemed to me that the ideal faith was a “mature” endeavor, led by long hours of prayer and meditation, self-mortification capped by the study and memorization of Church Doctrine and so forth. Nothing childish there.”

    It’s both/and. Childlike simplicity and resignation to the will of God coupled with a mature growth of the intellect and practice of virtue.

    A profound and inspiring post all around.

  3. Sarah Johnson

    I know those walls of CHOP well, Kelly. You just brought me back to that holy place where my son Augustine’s life was saved.

    My heart reaches out to yours & I’ll be praying for you. Please pray for me.

  4. Stephanie

    Kelly – your post here was so humbling and beautiful. I appreciate your written reflections because they give me a deeper insight into what you are experiencing. Thank you for sharing. We’ll keep you guys in our prayers. Stephanie

  5. Ok, I’ve composed myself now. I’ve shared this on FB . The reason I couldn’t get past your first paragraph is because it was only reading that, that I realised the exact same thing in my own older children when Louise was at her worst and when I was expecting her, so many many tears I’d have been spared if I’d had their positivity . I spent the pregnancy mourning my past life never realising that this was the best thing that has ever happened us…worry, tears and all. The thing is, I’m guessing I’ll fall into the same trap next time we’re facing her surgery but may e this post will stay in my mind and I’ll remember to take more cues from the big girls. Thank you thank you thank you!! Praying always for sweet Fulton xx

    • kmantoan

      While talking to my husband about this post he admitted that the only thing that got him through the tough times after our youngest son’s birth and subsequent diagnosis was the positive attitude of our children. As parents you want to be so happy at the birth of a child, but facing with another SMA diagnosis was just more than he and I could handle. All we could imagine was the years of therapy, appointments, the milestones we wouldn’t see him hit, reliving everything that was so hard about Fulton’s lack of progression. But the kids were so happy with their new brother and helped us see all the good in him and not always think “well, he’s doing this now but he won’t be for long.” I only hope we can help them maintain that childlike attitude as they get older. Thanks for all your prayers Jennifer!! I continue to pray for you all as well. Such a wonderful thing, the internet, to bring moms together like this. :)

  6. Thanks for this post — I hopped over from Conversion Diary. We are currently waiting for a daughter (through adoption) who has some specific and some unknown special needs. My 10-year-old son is leading the way for our family: he wrote her a letter saying she has certain things wrong with her body, “but she will heal.” He was so matter-of-fact and chipper about it — and some things won’t actually heal — but she will be in a family who loves her, she will be introduced to Christ, and we will probably *all* be healed in many ways as a result of her joining our family.
    Nancy

    • kmantoan

      I’m actually trying to flesh out a post on how special needs children benefit their families because, despite all the challenges of raising them, kids like Fulton and your soon to be daughter bring profound graces into their families lives. Sounds like you’ve got the right idea though. I’ll pray for your daughter Nancy.

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