Where do I begin? How does a mom write this kind of post? We’ve been able to fill most of our friends and family in at this point, but I guess I’ll start with the story of what got us here:
A few weeks ago, Adelyn had a brief “twitching”episode — maybe five seconds — when waking from a nap. About a week later, another. A week later, one more. We knew it was odd and immediately started Googling information on the topic — it seemed to fit the description of something similar to the hiccups; harmless. I brought it up at her 4 month well-check, just to be sure. The pediatrician agreed it was likely nothing to get worked up about, but wanted us to follow up with a neurologist to rule out anything more serious. We had an appointment scheduled for Tuesday. On Sunday, she had another “episode” in the morning. This one lasted much longer (one to one and a half minutes) and was more intense. Something wasn’t right. I realized how glad I was we had made the neurology appointment, and was even able to get a video, so I felt good the video would be able to help with a diagnosis. That night, we put Adelyn to bed. I happened to glance down at the monitor after she had fallen asleep and see it was happening again — this time there was no question it was a seizure. We threw some clothes in a bag in case we got admitted overnight and headed to the hospital.
We spent four nights and five miserable days there. Our poor baby was hooked up to a 48-hour EEG to monitor her brain activity. The “pack” holding the wires was so heavy she couldn’t hold her head up without support. We met nurses, and techs, and pediatricians, and neurologists, and an ophthalmologist and the list could probably go on. Initially, the EEG results were coming back OK. On Wednesday, she had an MRI. She had to be put under for it so they could make sure she would stay still. That evening, the pediatrician came by and said he had some bad news. The MRI was abnormal. He started talking about white matter and myelin, and getting services to help her, and I had no idea what it meant, but we realized, this isn’t good.
The next day they told us the geneticist would be in soon to talk with us — I was confused and my heart was beating in my chest, but I kept my cool. OK, the geneticist, sure, we’ll talk with her. We’re good. We’re cool. They have to cover their bases right? I’m not sure what bases those are — a geneticist? But it’s fine. She’s fine. She’s totally fine.
White matter. Leukodystrophy. Tell us your family history. Running tests. Blood work will be sent off. Laboratory. Any questions?
Um, no. We’re good.
And then they left and we were ready to turn to Google. What was that word she used? Luca? Luko? Ah — I found it! Leukodystrophy — white matter, yes that’s it!
Leukodystrophy is a group of rare genetic disorders that affect the white matter of the brain. It is progressive, and the patient will worsen over time. Physical and intellectual abilities will deteriorate. The rate at which this happens depends on the specific disorder within the broad category of leukodystrophy. This disease is fatal. When symptoms present themselves in infancy, that is typically because it is a more severe form. For children diagnosed before they are a year old, average life expectancy is 2-8 years.
Thank God Adelyn is asleep right now. I’m crying, sobbing. Mike is crying. We’re holding each other. I’m just so glad she’s asleep, because she shouldn’t see her parents like this. This isn’t us. Not our baby. It’s surreal. And so real.
When you hear someone else’s story like this, you always say, “I just can’t even imagine how you must feel.” But really, you sort of can, can’t you? I know I used to, before it was me. Such a deep, unfathomable pain it takes your breath away. What you’re imagining, it’s pretty close to what it is. Here’s the only part you’re missing, or the part I was missing anyway when I used to think I couldn’t imagine what it would feel like: I had no idea how much the joy would hurt. The sadness, the pain of hearing your child has a terminal condition, that part I knew would hurt. But when Adelyn giggles and makes me laugh at her silly coos, it shatters my heart into a million tiny pieces that I’m constantly having to glue back together so I can keep giving her my whole heart, no matter how many times it keeps breaking. Because she deserves to have all of me for as long as I can give myself to her — she’ll never know my heart breaks for her, she’ll never know how many times I’ve glued myself back together. She’ll only know I’m here, and I love her, and I will make myself whole for her. We will keep giggling and laughing and playing.
I kept asking Mike when we first got the news, “How are we going to do this?” But we really both already knew the answer. You just do it. There’s no how. We may not always like the hand we’re dealt, but we can do it.
There is something that has given me much comfort over the last week. I believe — and have always believed — that God hand picks babies for their mommies. Even people who don’t have a good relationship with their parents, I really believe God had a purpose in putting them together, that they needed each other in some way they may not even ever understand.
“Before I formed you in the womb I knew you, before you were born I set you apart.” Jeremiah 1:5.
And so, all I can think over and over again, is that God had this beautiful, delicate soul. He loved her so very, very much, and He needed someone to take extra special care of her. He knew it would be hard, and so He searched and searched, and out of all the billions of people in the world, He chose Mike and me to be Adelyn’s mommy and daddy. I believe she belongs to Him more than she even belongs to me, and I am so honored He chose us. I used to thank God for her every night in my prayers, “Thank you for a happy, healthy baby.” Now, my prayer is, “Thank you for Adelyn. Please help her to be healthy and strong. Thank You for sharing her with us, for choosing us. I promise we will take good care of her, we won’t let You down. I know we can do it, with Your help.”
And it’s not just us He chose. God chose a support network so strong for Adelyn that I have been blown away. The calls, texts, Facebook messages, visits, flowers, fruit, meals, delivered groceries and pantry items, cookies, meal delivery kit services, matching mommy and me leggings, gift cards, blankets, toys, rosaries, coffee, donuts, cleaning service… I’m sure there’s more I’m missing here too. I’m crying writing this, because it has been so much. You are pouring your love all over us and it is so good and so healing. When I had to tell my dad the news of her diagnosis, he started crying, and through his tears he just kept saying, “OK, baby doll, OK. We’re going to do this together. We’re a family and we’re doing it together.”
All of you — every kind thought and prayer sent our way — I just keep hearing, “We’ll get through this together.”
Psalm 56:8 says, “You keep track of all my sorrows. You have collected all my tears in Your bottle. You have recorded each one in Your book.” I know so many of you have shed tears for us, with us. Your tears are just as real and raw as our own. And God is collecting them all. Every tear drop is a silent prayer falling down your cheek, and we can’t thank you enough. Our tribe is big and beautiful, and our baby girl is surrounded by so much love. We’ll get through this together. And I hope you never have to go through anything quite like this, but when life throws you a hardship, I hope you know we’ll be with you and we’ll get through that together, too.
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At 4 months old, following seizures and an MRI, we were told Adelyn would never progress and given 2-8 years, but she is a fighter!
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