It’s been just over a week since the first time we heard that our girl has a congenital heart defect. And let me be honest, it has been the longest week of my life. (I could probably say the same for Chris.) Every day now tends to tick by pretty slowly. It’s probably a combination of the fact that the medicine that they have me on keeps me from sleeping well, and the weight of every day counting at this point.
Today is our first follow up appointment since last week. We have a team of three new doctor’s groups now, so the weeks leading up to her birth are going to be busy. Today we meet with the neonatal cardiologist, to do a check up on her heart and make sure she hasn’t built up any fluid around her organs due to lack of adequate blood pumping. We will also be touring Eggleston Children’s Hospital today – seeing the facility and meeting the surgeons that will be with our girl as soon as she’s born. (I feel like I have 243579238 questions to ask them, but I can’t think of a single one.)
I’m not sure how I will handle today. My hope is that it is an extra ounce of encouragement and reassurance for me, knowing she’s in the best care possible. There’s another part of me that’s afraid this will be my reality check and/or meltdown moment – the realization that the dreams that I have for our Edith may not be reality.
The timing in all of this has been laid out for us before we knew what was coming. Where I work, we have been going through a study of the book of James. Yesterday we talked through the end of James 4, and how making our plans without trusting the Lord to lay them before us is arrogant. It made me think about how I’ve had my birth plan laid out since before we found out I was pregnant with Edith; how I’ve had dreams of taking her home and what those first few weeks with a two year old and a newborn would look like; how Chris and I have talked about what she may look like or if her personality will be anything like her big sisters.
Eloise was an emergency c-section and NICU baby. I dreamed that we wouldn’t have to endure any of that with Edith. That I would go into labor “like normal”, we would rush to the hospital, she would come on her own, healthy. I dreamed about introducing Eloise to her baby sister at the hospital. I dreamed about leaving the hospital with our new baby girl, headed home to experience life as a family of four, with a two year old and a new baby (and all the craziness that entails).
That won’t happen. As soon as she’s developed enough, we will set a date and time, I’ll be wheeled into the operating room and she’ll enter the world much like her sister did. I won’t likely get to hold her after she’s born, as she’ll be immediately swept away to be hooked up to monitors and tubes. She’ll then be moved to another hospital where she’ll have surgery, and I’ll be recovering separately from my own surgery. There’s no telling how long her hospital stay will be. We will, again, leave the hospital without our new girl.
We have dreams for our children. We want good for them. I want my girls to grow up to love the Lord, love each other, and have beautiful families of their own one day. And it’s not that those are bad things…they’re great things. But those are MY dreams. I’m realizing through this process that my dreams don’t and won’t necessarily look like the dreams that my girls will have for themselves. Or more importantly, what the Lord has planned for their lives – things greater than I can even understand, especially right now.
I would be lying if I said I didn’t have moments of fear, worry, or even anger creep in. I am learning how to rest in the truths that I know. It’s tough in the midst of life’s uncertainties. My mom always said to me growing up “don’t forget in the darkness what has been revealed to you in the light”. (She’s such a wise woman. Everyone needs a mom like mine.) That replays in my mind now. Here’s what I know to be true:
- I am GREATLY loved and cared for, by both my Abba Father and friends and family.
- Our Lord loves our Edith WAY more than I do.
- He CAN heal her heart completely.
- If her heart isn’t healed completely, it’s not because He doesn’t love me or her.
- Nothing is wasted. He works ALL things for my good.
- God is good. He was good before we found out about any of this. He is good today. He will be good tomorrow.
The body of Christ has been more real to us in this last week, than maybe I have ever noticed before. The kind words, the affirmation of prayers, and simple acts of kindness haven’t gone unnoticed. They’ve refreshed our spirits in JUST the right moments. We thank you.
How you can continue to pray for us:
- That Edith’s heart would be COMPLETELY healed.
- That we would be confident in the plan that the Lord has for our family.
- That any fear in our hearts and minds would be wiped away.
- That the medicine that I’m on would stop making me feel like crud.