The Day We Got Our Daughter's MRI Results, Our Lives Forever Changed
After Reagan had her metabolic crisis (due to her genetic disorder, Glutaric Acidemia Type 1), she had an MRI. While we were waiting for the results, I just knew something was wrong.
When Reagan woke up briefly, probably 18 hours after her seizures, she smiled but was so limp that she had a hard time holding her head up. Our close friends were in the room, and I was so nervous she would have another seizure. I couldn’t bear to have them watch that happen.
“Rob, something is wrong,” I said to my husband. “She can’t hold her head up.”
“No, Anne-Marie, it’s because she’s on all sorts of medications that are keeping her sedated,” he responded. “Plus she has all the wires on top of her head for the EEG; it’s probably heavy.”
It’s not so heavy that she can’t hold her head up, I thought to myself.
That evening, our genetics doctor texted us that she was coming to visit. She had the MRI results.
“Rob, why would our genetics doctor be coming to give us the MRI results and not the neurologist?” I asked. “It can’t be good news.”
I think deep down Rob knew this, but neither of us really wanted to believe it. What the doctor told us would forever change our lives. It would change the way we prioritized everything.
“Does Reagan have brain damage?” I asked her.
Rob and I melted into the floor and into each others arms, and our tears flowed. I felt like I couldn’t breathe; my biggest fear in life was happening.
“Is it bad? Is it a lot of brain damage?”
Yes, it seems to be quite a bit.
Our friends were coming to the hospital, and we met them in the hallway and sat weeping. It didn’t matter who saw us or who walked by. No one cared. Time stood still, and we wanted to go back to before. Have you ever been given such devastating news in your life? I’ll never forget our friends’ faces. I’ll never forget the questions we asked the doctors or the answers we got. The two weeks in the hospital are forever seared into my mind. I can replay every moment as if it were yesterday.
We later learned that Reagan’s entire basal ganglia was damaged. The main job of the basal ganglia is motor control and the fluidity of movement. So if you want to pick up a pencil, that’s the portion of your brain that allows you to do that. The doctor told us Reagan will never walk. She will likely never talk, maybe never smile. They also told us she had a movement disorder called Chorea which made her have uncontrollable, flailing movements. The diagnoses kept unfolding, and they were always “so rare” that there wasn’t much research and information out there about what medications could help…especially for a 13-month-old.
“Can she learn?” we asked.
She should be able to learn. The other small sections of her brain that are damaged might affect how she learns, but she should still be able to learn.
The neurologist went on to mention that they couldn’t perform brain surgery to remove portions of her brain because the damage was too extensive. I’m sorry… what? Removing a part of the brain is an actual thing?
I will never, ever forget what the neurologist told my husband and I.
Your job is just to make her comfortable. That’s your job as parents now.
The words have echoed for the almost nine months it’s been since Reagan’s metabolic crisis.
As I think back to those really, really dark days, and knowing what I know now, I would want to tell myself a few things — such as, doctors don’t know everything. They don’t. Yes, they’re more schooled in the field of medicine and they have experience and have reviewed case studies, but they don’t know everything.
No one will understand what you’re going through. I believe the only person who will 100 percent understand is your partner. You will need to rely on each other more than you ever have in life. You will get upset and have disagreements, but never turn your backs to each other, always embrace. You two are the only ones who can relate to one another.
People will say stupid things, because again, no one understands what you’re going through. That doesn’t mean they don’t care; it just means they can’t quite comprehend your pain, your extremely tough road, and no matter how they try, they’re not walking it; you are. Kindly let people know if something is not helpful and let them know how they can be there for you.
It’s OK to not have it all together; no one has it all together (Do you hear me? No one has it all together). Talk to a counselor, say the things you’re thinking that you feel you can’t say out loud. Say them in a safe environment. Process those raw emotions; your daughter needs you to deal with your pain and loss properly to help her overcome her new challenges. She needs you, all of you.
People will also surprise you. Your friends will raise money for you, go to bat for you, call your insurance company out on social media when they’re going back on their word. Your family will have a cheerleading section bigger than you can imagine because they love you. They love Reagan.
You will replay the 13 months leading up to Reagan’s crisis and ask yourself over and over if there was something you did wrong, something you could have changed. There is nothing you did that was wrong. You had three spreadsheets for tracking her meals to count every bit of of food put into her mouth for crying out loud! This was going to happen. I believe God had a plan bigger than this, and as humans, we can’t control every facet of life. You. Did. Nothing. Wrong.
You believe God has asked you to walk this ridiculously tough road for the benefit of you, your daughter, other people — you may never know the extent of it. But your daughter will touch lives in ways you could have never imagined. It doesn’t make it easy, but it lets you know there’s purpose, even through pain.
Don’t give up. When you come home from the hospital, it will take you 30 minutes every time you need to administer another medication. A few months in, though, and you will do it in under five minutes. You will figure out the G-tube. And your daughter, who used to eat and drink with no problem, will eat and drink again. It will take time, it will take patience, but you will be washing bottles and bowls and spoons again soon.
You’re going to be insanely jealous of all of your friends with kids who are “normal” or “healthy” and typical. But you can’t punish them for the road you’ve been asked to travel. Your friends still want to be there for you, and because of Reagan, your friends are teaching their children how to have compassion, how to love and how to pray for healing. Reagan is teaching other children things that are invaluable.
Reagan will crawl, she will stand, she will cruise and she will make strides. She will make the strides that the doctors said she would never make… and she will do them in months.
You will have moments where you want to give up. But don’t. You will wonder if all the therapies are actually working. You will go to 204 therapies from May through December. And I can tell you that they are working. All of your exhaustion, sleepless nights, screaming into your pillow that “this is not fair!” will make a difference in Reagan’s life.
At the end of the day, it will be worth it. It’s only been nine months since Reagan had her metabolic crisis, and she’s touched countless lives, gained many milestones back and still provides joy. She laughs all the time with an infectious laugh, one that redeems all the trials. Reagan is a bright light; You know that Reagan is proof that God still performs miracle.
Miracles are hard. They’re not always overnight.
Reagan is worth all the hard work, all the tears, all the unknowns. Everything you are about to embark on as a result of these new diagnoses will be worth it. You can do it, with God’s help you will do it.
And, life has seasons. Hard seasons don’t last forever; they don’t. There will be brighter days, sun will shine. You will smile again, you will have margin in your life again, you will have fun, even though your entire life looks 100 percent different than you ever imagined, you will love it.
This post originally appeared on Rob & Anne-Marie.
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