We'll Get Through This Together

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 5 seconds - when waking from a nap. About a week later, another. A week later, and 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 though, 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 (1-1.5 minutes) and was more intense. Something wasn't right. I realized how glad I was that we had made the neurology appointment, and was even able to get a video, so I felt good that 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 that 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 4 nights and 5 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 okay. On Wednesday, we had her MRI. She had to be put under for it so that 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 started to realize... 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. Okay, 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. Bloodwork 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 that 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 that 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 so 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 that 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 know that she belongs to Him more than she even belongs to me, and I am so honored that 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 that He chose. God chose a support network so strong for Adelyn that I have been blown away by YOU. 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, "Okay, baby doll, okay. 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 that we'll be with you and we'll get through that together too.

In the ER

Moved to a room and admitted as in-patient

IV all hooked up

Our happy girl even with all the poking

Hooked up to her 48 hour EEG to monitor brain activity

Hugs from Grandma 

Smiling with Pepaw - the wire "pack" is so heavy it's hard to hold her head up! 

Poor sleepy baby after anesthesia for the MRI 

And best of all - so happy to be back HOME

I know so many of you love us and are praying for us and want to know how she's doing. I will try to post periodically with updates. As of right now: 

1. We are awaiting further blood test results being run by a geneticist in hopes of getting a specific diagnosis for the type of Leukodystrophy Adelyn has (please pray for results, as about 50% of leukodystrophies are never able to be diagnosed, and a lot rides on that information). We should get this information in a week or two.

2. Adelyn will begin physical and occupational therapy to help her meet milestones and in hopes of slowing future deterioration of physical/motor development.

3. She has a follow up neurology appointment in a few weeks (once blood work from the geneticist comes in) to discuss next steps.