When I got pregnant naturally with my biological son Colt, my husband and I expected and prayed for things to be normal.
God had other plans, though. He had plans to wow us.
But first came suffering.
It only took us a few months to get pregnant and I had the perfect pregnancy. No throwing up, just a lot of orange juice-chugging. My water broke like it does in the movies—imagine filling five gallon-sized Ziplocks with water, holding them up in the air, and Zoro coming in and slashing them with one swoop. (Good thing I was on the tile). We rushed to the hospital, stopping at Sonic first for my husband to get his signature Route 44 unsweet tea, of course.
Nearly 24 hours later, our son arrived—but there was no time for rejoicing. Something was terribly wrong. Within two hours, he and my husband were traveling by ambulance to the nearest children’s hospital. It was too big for our hospital’s NICU to handle. He needed a specialist.
That night I laid in my hospital bed with empty arms, crying and pumping for my baby whose future looked terribly bleak: He was born without skin on his feet—it looked as though they’d been put in boiling water—he had blisters in his mouth and on his hands. But it wasn’t as simple as it seemed. My husband cried as he called me from my son’s bedside, handing over the phone to the doctor: It’s called epidermolysis bullosa, he said. It’s very rare. There is no cure. Some have deemed it “the worst disease you’ve never heard of.”
I don’t remember what all the doctor said that night. All I heard was that my son would live a horrifically painful life: He would most likely have to be wrapped like a mummy to protect his extremely fragile skin from shearing off/blistering. The skin of those with EB acts almost like wet toilet paper, or like a butterfly’s wing—the slightest friction can cause severe damage. This is not just the skin on the outside, but the skin on the inside as well. Their throats many times close up because of constant blistering/scarring, leaving them to eat by G-tube, their hands and feet can web and mit up, many are in wheelchairs, many more on daily morphine … Stunted growth, open wounds, which lead to high risk for infection, skin cancer, and early death. I could go on and on.
I beat myself up about the Diet Cokes I drank while I was pregnant. Later we found out it was genetic. My husband and I both carry EB. It was gut-wrenching.
It was the work of Satan (John 10:10).
But God used it to wow us.
Now, a little more than two years later, I can rejoice when Colt trips and falls on the concrete. Not because I’m an evil mom, but because God has answered our ugly cries and given my son’s skin supernatural strength, though EB is indeed in his DNA.
Today, Colt and I went to the playground, and as I lifted him up under his arms to put him in the swing, I rejoiced. A little more than two years ago we would have never lifted him under his arms for fear of tearing his skin. When his shirt came up as he was sliding down the slide on his stomach, I rejoiced, thinking, ‘his skin didn’t tear!’ He wears shoes, normal shoes, without blister or consequence. I rejoice. He eats a tortilla chip and it doesn’t shred his esophagus. I rejoice. We’ve been to the beach several times now and I rejoice as I watch him play in the sand, barefooted. This is something I thought I’d never see. (Job 12:22)
I would never have wished this terrible thing upon my son and our family, but I can say this—God used it to wow us. Our cups overflow with Thanksgiving over things we wouldn’t have even noticed before. He turned our mourning into dancing. (Psalm 30:11).
Now, here we are, trying to get pregnant with and bring home a baby that wasn’t made with our genetic make-up or even with our knowledge (these embryos were made via IVF by a couple struggling with infertility the same month my husband and I met—the couple ended up with so many, they graciously chose to donate), but yet, was totally made for us and meant for us from the beginning of time (Jeremiah 1:5, Psalm 139:13-16). Despite the heartbreak I’ve felt in this process (the decision to not have any more biological children since discovering we both carry EB, and then two biochemical pregnancies and one failed implant with donor embryos), I can’t help but believe that God’s going to use suffering to wow us once again. (Jeremiah 32:17, 2 Timothy 2:13, Psalm 107:28-30). For those of you who are hurting today, I pray the same for you.
“Your grace abounds in deepest waters;
Your sovereign hand will be my guide …
Where feet may fail and fear surrounds me;
You’ve never failed and You won’t start now …”
(Lyrics from ‘Oceans‘ by Hillsong United)
And Mary said, ‘My soul magnifies the Lord, and my spirit rejoices in God my Savior … for he who is mighty has done great things for me, and holy is his name. And his mercy is for those who fear him from generation to generation. He has shown strength with his arm …”
Luke 1:46-47, 49-50
Looking for children’s books about embryo donation/adoption? I’ve written two and they are available for purchase on Amazon!