Making Sense of our Medically-Complex Adventure

Every once in a while I get to see the why’s behind our story. Last week, Uriah had a difficult 4 days following an intense and lengthy bronchoscopy. What was supposed to be same-day surgery became a 3 day PICU admission, a manual bagging, low SATS, three trach plugs, steroids for inflammation, and exhaustive hours spent watching my amazing active boy sleep restlessly and his SATS dance higher than I like.

He’s still recovering from his intense procedure but he is recovering and that is a blessing.

But, as a parent watching her child struggle, there are moments when I wonder why. Why us? Why does Uriah have to struggle? Why the difficulties? Why, why, why?

Tonight, as I cried my little cry, I looked at the stars and saw my favorite constellation … Orion. Long ago, when I was a teen and life felt so big, God so mysterious, and my purpose meaningless I made a pact that whenever I saw Orion I would choose to remember that the same God Who created those stars and has kept them in their place for centuries is the same God Who made and loves me.

And some 10 + years later those same stars greeted me on a night when I wondered why. Why does my son have to work so hard for everything? Why does a simple procedure have to become a threatening, code blue situation? How in the world do normal families function … what is it like to not have to worry about ventilator heaters, trach plugs, suctioning, oxygen SATS, tube feeds, and milestones? Why, why, why?

But then I remembered Uriah’s strength. I remembered his smiles, the silly toothy grins he gives us. My mind wandered over his latest milestone accomplishments — tummy crawling, scooting, saying Momma and Dadda, pursing his lips to whistle, a Swallow Study that showed no primary aspiration, sitting with almost no assistance. These are amazing things for a little boy like Uriah; he is literally a crawling, talking, smiling, scooting, happy miracle and every day, every accomplishment, makes those hard times worthwhile.

Then, there are the random emails I get from young mothers going through PPROM, miscarriages, and extreme fear in their pregnancies. These are the emails thanking me for reminding their authors that God is good, caring, and there in their troubles. These are the emails that make sense of my misdiagnosed miscarriage and all the other horrible aspects of my pregnancy.

And after a few moments reflecting on all this I am reminded, once again, that all life makes sense if I am thankful. And I have SO much to be glad for! For an amazing son who loves me, loves his Daddy, and loves life. For a husband who loves his family with everything in him. For milestones that doctors said would never come. For a home to keep and make memories in.

Though I still wish I could snap my fingers and help Uriah be completely healthy and free from support I am so thankful for where we are at. To be honest, I probably wouldn’t change a thing  because this life we are living is worth every hardship. I know those sentences conflict with each other but it is true … our life would never be this special, this unique, and this bonding if I could change it.

How do you make sense of the hard things in your life? Are there any special ways God reveals Himself in the mess?



One thought on “Making Sense of our Medically-Complex Adventure

  1. Frannie, the only way I know how to cope is just to keep on going. Maybe that is a generational thing, having grown up with grandparents and a mum who had all been through the War years.
    I don’t know how you do what you do, it is such agony knowing that it is your child who is hurting, when all you want to do is to take the hurt yourself.
    Thank God for the knowledge that He is in charge.

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