Advent #2: Peace I give
Advent Series: Peace from the manger to the garden
Is Being Forever Changed by Your Kid the Worst Thing Ever?
Having a special needs kid will change your life, and from what I hear, there’s simply no going back. The @NewYorkPost and @New York Times recently did a write up about a family with Trisomy 18, and a mom who is choosing joy, contentment and love over everything else. The way the write-up was written…
Bye Bye Bitter, Hello Joy
Hey special needs fams, I have been trying to live in the here and now with Joy, with grace despite exhaustion… to trade Bitter for Joy,… Ok Medicaid cuts pending, doom gloom, recent hospital stays for ridiculousness with this dang J tube, comparing our lives to “normal families,” … and bitterness can snake its way…
Update on our Summer Sweet Travels: we made it home and Recounting Miracles.
The real miracle wasn’t the miracle of the perfectly healed baby, it was the peace I had as I was rolled into the OR to deliver the baby that was told would die.
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10 minutes before she was born: Do you want CPR?
We had this talk about five times before, but the day your kid is born, man that’s a hard day to be asked… “Do you want CPR?” “Do you want to intubate?” “There’s a good chance she won’t survive birth.”
It’s supposed to be joyful. They are supposed to be tears because you are so happy you just can’t hold them back. Instead, they were tears of – I am scared to death. I can’t do this. God, please hold me. God, give me miracles and when those miracles are over… give me more.
There is no circumstance, no trouble, no testing that can ever touch me until first of all, it has gone past Christ, past God, right through to me. If it has come that far, it has great purpose.
The Making of a Man of God,
Alan Redpath (a book on how God made David into a man of God)
Our daughter was diagnosed with Trisomy 18/Edwards Syndrome at 16 weeks. At first I thought… Trisomy.. oh it’s like Down Syndrome… it will be hard… so hard, but I got this. We got this. There’s hope, there’s support, there’s a rocky road I can travel. Then, I briefly researched and found… it wasn’t Down Syndrome. It was considered a “Life-Limiting Diagnosis” one that would mean our baby would likely not survive pregnancy, birth, or her first week.
I believe in miracles! I believe in THE GOD of the Bible. The God who made the Universe, the God whose people failed him over and over and over (and over and over and over), and yet still, chose to expunge their records so that they could be with Him. I believe in the God who created the sky and the seas and holds all of this together. I believe this God loves me to the point of His son’s own death as payment for my clean record.
I also believe in science. I work in medicine and I see its dang amazingness and its inadequacies on the daily! I see it as a gift from God for us to learn more about Him, to serve one another, and to care for His Creation. I provide primary care using the most evidence-based medicine I can.
So you see – these worlds collided and collided hard when my own child was diagnosed with a diagnosis that would mean she wouldn’t live and IF she did, it would be a very, very, hard road.
A Medical Mama’s Tips, Tricks and Tales 
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