After Reagan had her metabolic crisis (due to her genetic disorder, Glutaric Acidemia Type 1 or GA-1 for short), she had an MRI…and while we were waiting for the results, I just knew something was so very 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 when she woke up and I was so nervous that she would have another seizure. I already had two of my closest friends witness her seizures in the hospital room right after being admitted…I couldn’t bare to have six more watch it too. I just prayed, “please don’t let her have a seizure, Lord!”
“Rob, something is wrong,” I said. “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, plus she has all the wires on top of her head for the EEG, it’s probably heavy.”
It’s not that heavy that she can’t hold her head up, I thought to myself.
That evening our genetics Dr. texted that she was coming to visit and she had the MRI results.
“Rob, why would our genetics Dr. be coming to give us the MRI results and not the neurologist? It can’t be good news.”
I think deep down Rob knew this, but neither of us really wanted to believe it. What she told us next would forever change our lives. It would change the way we prioritized everything.
“Does Reagan have brain damage?” I asked.
Rob and I melted into the floor and into each others arms and our tears just 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 of the hospital and just 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, the questions we asked Dr.’s…the answers we got. The two weeks in the hospital due to Reagan’s metabolic crisis are forever seared into my mind. I can replay every moment as if it were yesterday.
What we would hear from the attending neurologist the following day was 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 and allows you to use gross and fine motor skills to do a specific task. The Dr. 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 during our hospital stay 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 we couldn’t do brain surgery to remove portions of her brain b/c the damage was too extensive. I’m sorry…what? Removing a part of the brain is an actual thing?
Because of Reagan’s genetic, metabolic disorder, when children do have a crisis, triggered by a sickness (she was sick the week before with RSV and in the hospital for eight days), the amino acids build up in the brain and attack this particular portion of the brain, the basal ganglia. And while Reagan was diagnosed at newborn screening and we did absolutely everything possible to prevent this, we just can’t prevent everything. Her body will react how it will react…even if we knew brain damage was happening, there was nothing we could do to stop it. The basal ganglia hit was the most devastating…and any subsequent and otherwise minor brain damage, was due to the three seizures Reagan had.
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 that it’s been since Reagan had her 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, Dr.’s don’t know everything. They DON’T! Yes, they are more schooled in the field of medicine and they have experience and have reviewed case studies, but they don’t know everything. They didn’t create my daughter, God did…God knows EVERYTHING about Reagan, so rely on him. Pray harder than you ever have in your life to the Physician who knows what happened in her brain, why it happened, and how Reagan can overcome it.
No one will understand what you are going through. The ONLY person who will 100% understand is your husband. 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 are 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 are 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 are 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 in order 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 co. out on social media when they are 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. God had a plan bigger than GA-1 and as humans, we can’t control every facet of life. You. Did. Nothing. Wrong.
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 it’s time to administer medication, just to figure out what medication to administer. 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 have 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 Dr.’s said she would NEVER do…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; Reagan is proof that God still performs miracle.
Miracles are hard. They are 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, God will redeem what the locusts have eaten, and he will continue to do so. You will smile again, you will have margin in your life again, you will have fun, even though your entire life looks 100% different than you ever imagined, you will love it.
To view Reagan’s year in 2014, click the video below.
January 22nd, 2015 at 8:10 pm
I love you perspective – doctors didn’t create your daughter, God did. That is so true! According to Ephesians 2:10, He has good things prepared for her, which He prepared for her to walk in and walk out. These things were established and prepared before the foundations of the world.
Pastor, Missions Church Orlando
April 10th, 2015 at 4:55 pm
thank you. 9 months ago our daughter fell ill with what they still think was ADEM. After losing the ability to walk and talk she did 45 days in therapy and came home, just to have a slow relapse leaving her unable to use either sides of her body. It has been hard but you wrote exactly EXACTLY how we feel with Emersyn. She is overcoming but on days with headaches we just don’t know if she is relapsing again or not. God knows and I need to remind myself that daily. Thank you again!