Every Parent’s Worst Nightmare

This may be one of the hardest posts I will ever put on the blog. It still breaks my heart to think through this. This is a post about my oldest daughter. I had mentioned something really quickly about a post I would be writing later because I still hadn’t gotten my head wrapped around what happened. I’m not sure I completely have it down yet, but I think I’m getting closer to being able to put my thoughts into words. So, here goes.

My daughter, Laiyla, had gotten what we thought was a cold. No big deal, right? That’s what we thought. It lasted for a couple weeks. She had the runny nose, exhaustion, deep cough, etc. that one would normally get with a bad cold. We didn’t really thing anything of it. She didn’t either. She was napping during the day, but otherwise was acting normal.

Fast forward to the beginning of the last week of September. We began moving out of my in-law’s house and into a little rental house. Laiyla was helping me move some boxes from place to place inside the house. I noticed that she was moving boxes somewhat oddly. I asked her what she was doing and why she was moving the boxes like that. She just simply said that her arm wasn’t working like it should. This was on Tuesday. I didn’t really think anything of it because she had gone back to Jiu-Jitsu class a couple days before. We had taken her out for the couple weeks that her cold was really bad so the other kids wouldn’t get sick. She had improved enough to go back to Jiu-Jitsu.

The next day, my husband also noticed her acting strangely. He asked her what was going on. She said that her arm was “giving her some trouble.” He didn’t think anything of it at the time either. Here is where the worst part comes in. When I got home that night, he asked me about it. I told him that she had said something the day before when I asked her what was going on, but that I thought maybe she had messed it up at Jiu-Jitsu. He called Laiyla into the room, and we started asking her about it. She said it didn’t hurt anywhere, but she couldn’t move it. She could bend her elbow and use her wrist, hand, and fingers, but her shoulder would not move. Phillip and I didn’t believe her. Did you read that? Phillip and I didn’t believe her. Yes, you read that correctly. We had no reason to not believe her, but we didn’t. The way her arm was moving, it looked like she was faking it. She had absolutely no pain either. How does your arm not work if you don’t have any pain in it?! We couldn’t understand how that worked at all. It didn’t make any sense. We eventually told her that if she’s faking it, she was going to be in big trouble. She understood. We told her we were going to make an appointment to see her doctor. Phillip called and had one scheduled for the following week.

Thursday came and she seemed about the same. We went through the day and made it to Jiu-Jitsu. By this time, Laiyla had to sit out because her arm was not strong enough to handle class. We have some medical professionals at our dojo, so we asked one of them to look at her. This particular one was a nurse anesthetist. He looked at her arm, got a puzzled look on his face and said he would ask the orthopedic surgeons he was working with the next day. He suggested taking her in and having it looked at. We explained that she was going in the next week.

Phillip took all the kids home with him after their class was done in order for me to train in peace that night. I had a tournament coming up and needed to be able to concentrate. It is so completely evident that God orchestrated what happened next.

Phillip noticed that Laiyla’s arm had gotten worse since they got home. He called his mom to come sit with the other kids so he could take her into the emergency room. On his way to the emergency room, Phillip saw our doctor walking on the side of the road. He lives close by our house so this may not have been out of the ordinary, but we have never once seen him walking here. Not once. And we travel this road multiple times a day and at all hours of the day and night. God knew we needed to see him right now. Not wait in the ER for hours on end and probably come home with absolutely no direction or idea of what was wrong with our little girl.

Once he saw our doctor, he pulled over and started talking to him. Our doctor had Laiyla get out of the truck and sat her down on the curb to look at her. He started testing her reflexes, strength, etc. Once he was done checking her over, he looked at Phil and said that we needed to be in his office at 8:45 the next morning. He was going to be sending us to Children’s Hospital in Minneapolis.

I got partially through the first class of the night, and was pulled off the mat for a phone call. Phillip was on the other end of the line. He started to explain that Laiyla’s arm had gotten worse since they had been home, and that he started to take her to the ER, but saw the doctor on the side of the road instead (that part raised a lot of questions for me, but I didn’t have time to ask them all at the time). He told me that we needed to be at the clinic in the morning so we can get our orders to go to the cities. I was terrified. Phillip told me that our doctor had said we need to go have an MRI done on Laiyla’s head, neck, and spinal cord. Our doctor was concerned. He was pretty sure he knew what it was, but wanted to rule out stroke, other brain bleeds, and brain tumors. As soon as I heard that, I was a complete mess inside. After I got off the phone, I went back to class to finish the training session. It didn’t last much longer.

As soon as class was over and I stepped off the mat, I lost it. I broke down in tears. My teammates weren’t sure what to do or say. They asked what was wrong. I started to explain what was going on and that we were heading to the cities in the morning. They looked just as panicked as I felt. After I explained everything, one of my teammates looked at me and asked why I was still there. I kind of smiled and said I wasn’t sure. I have never changed out of my uniform so fast in my entire life.

We spent that evening in relative quiet around the house. We tried to act like nothing was wrong to keep Laiyla at ease, but she knew something was happening. She was handling things much better than her parents were!

We made it to the clinic the next morning. One of our other good friends is also a doctor at the clinic we visit. He came in first and talked to us. He told us that he and our doctor had just finished praying for Laiyla in the office. That alone makes my heart smile. Our doctors love God. And they love us enough to spend time praying for our little girl before her appointment. We serve an amazing God!

Shortly after, our doctor came in with a piece of paper in his hand. He started looking over Laiyla. He was checking her grip strength and reflexes, among other things. Once he had completed his examination, he handed me the piece of paper. I was not at all prepared for what was on there.

The paper contained the diagnosis that he was 99% sure that Laiyla had. Acute Flaccid Myelitis. I had never heard of such a thing before in my life. And that is with good reason. People have a less than one in a million chance of contracting it. Seriously. My daughter contracted a disease that has a less than one in a million chance of infection. I already knew my daughter was one in a million, but now she’s one in a million twice over. It is so hard to explain the feelings and emotions that were coursing through my brain and body at that moment. I sincerely hope that no other parent ever has to feel like that.

Once our doctor had answered all the questions we had come to mind, he told us that he has already ordered all the blood tests and the MRI down at the Children’s Hospital. He had everything all set up. All we needed to do was get to the cities. He asked if we had a vehicle to get down there. I said yes, but my husband was less convinced. He reminded me of the tire that needed to be changed. Our doctor said not to worry about it, but to head over to his house. His wife was home and we could take her vehicle. Yes, our doctor just lent us his vehicle to go to the hospital. He even took it a step further. He pulled cash out of his own pocket and handed it to my husband. He told us he didn’t want us to have to think of anything that weekend, other than our daughter. I told you we serve an amazing God!! He was providing our needs before we even knew what they were.

After we saw our doctor, we headed home to quickly pack up some clothes for us and the kids. We dropped the other kids and the dog off at my in-law’s house on our way out of town. The drive to the cities was torment and torture. I couldn’t think straight. I’m surprised we made it down there, actually. I was driving, but I don’t remember any of the drive. I remember telling myself not to cry so Laiyla wouldn’t see the tears. But I would look over occasionally and see tears streaming down my husband’s face. And I would lose it all over again.

I kept thinking about what that paper had said about the disease my perfectly healthy little girl was now consumed by. According to the information paper, this disease would cause her to lose all muscle function. She would no longer be able to function. She wouldn’t be able to move and would eventually be put on a respirator and we could possibly lose her. That was, by far, the longest trip to the cities we have ever had.

Once we got to the Children’s Hospital, we walked into the Emergency Department and went to the check-in desk. The lady said Laiyla was already entered in the system, so all we needed to do was go through triage and they would put us in a room. It went so smoothly. That definitely helped this Mama’s heart. It’s amazing to me how the simplicity of something going smoothly can help to calm a person.

I am so thankful for the amazing nurses and doctors we met while we were in the hospital. They were so patient, kind, and helpful. The doctors were willing to sit and answer any questions they could. They were very frank in the fact that they didn’t know much about this disease. It is so rare that there hasn’t been much study, if any, put into this disease. They have no idea what causes it, other than they are pretty sure that the host needs to have some sort of respiratory illness in order to be infected. There is no vaccination for it. There is no cure or treatment.

I think those are the worst words to ever reach a parent’s ears. Your child has a disease, and there is no treatment. As soon as I heard those words, my heart shattered into a million pieces. I have never been so devastated in my entire life. And I’ve dealt with a lot of heartbreak in my short time on this earth. It’s one thing when something happens to a family member. You hurt inside, and you hurt for them. But it is a completely different world when it’s your child. That child is so much a part of you, that it feels like you are being punched in the gut while someone is stabbing you in the heart a million times. You just want to puke while you bawl your eyes out. I don’t believe there are words in the English language sufficient enough to explain the agony and fear that rages through a parent’s body when they are given a terrible prognosis about their child.

We spent that night in the hospital with Laiyla. She was such a trooper through the whole thing. She never fussed about having to do any of the testing and blood drawing and who-knows-what-else they needed to check. The only time she had any tears at all was early the next morning. She said the IV was hurting really badly. We got the nurse in there and he put a heat pad on it while he contacted the doctor to see if the IV could be removed. Thankfully, the doctor said that it could come out. Laiyla was overjoyed! It was so good to see her smile when that tube came out of her arm!

The doctor and the neurologist came to see Laiyla later that morning. The neurologist said he had been working on a few of these AFM cases in the last few days. Let me remind you, this disease is so rare, that there is usually one of these cases per year. He had six in the last week. He called it a “mini epidemic.” He talked to Laiyla about what was going on and what she could do to keep herself as loose as possible. He told us that she may regain use of her arm, but he didn’t know for sure. There is no data to go off to give a prognosis on regaining that arm. When he saw her, Laiyla could not move her right shoulder at all. She could move from her elbow down, but her shoulder would not move on its own. She could move the arm from the shoulder with her opposite hand, but it would not move on its own.

He also told us that the MRI showed what is causing the paralysis. He said there are two spots of swelling/inflammation on her spinal cord in the neck and one spot lower on her back. He said the two spots on her neck are what is causing the issue with her arm/shoulder. He said the spot lower on her back could cause her leg to stop working also. He wasn’t sure if it would happen, but he wanted us to know that it was there and that the possibility would be there. We finished up the conversation and were told to make an appointment for two weeks from that date. She was diagnosed on September 28, 2018. We were discharged from Children’s Hospital on the 29th, and we were told to keep a close eye on her and to make sure to take her in if she was having any trouble breathing.

We went home that afternoon and kept a very close watch on her. I was almost wanting her to sleep in our bed so that I could hear or feel her if she started having trouble breathing. This disease has a way of coming on super quickly. I’m talking within minutes a child can go from being perfectly normal to being unable to walk, talk, or swallow. That thought alone scared the life right out of me.

The next two weeks were fairly uneventful. But we were noticing some things about Laiyla and her arm. She was using it regularly. She still couldn’t do much with her arm, but she was using it! We started a log with what she was doing on a daily basis. What she was eating and drinking and what activities she was able to do. She was so excited to see every tiny little bit of progress. After a few days, we started measuring how far she could reach and different things like that. She was starting to move her arm from the shoulder a tiny bit!!!! We were seeing progress in the right direction!! I nearly cried in front of her the first time she surprised me with what she could do. I was overjoyed! In the first two weeks, she went from not moving the shoulder at all to being able to move it a few inches in each direction. That was huge! You want to know the best part?? She started playing violin again! That was the thing she was most concerned about. She was scared to death that she wouldn’t be able to play the violin ever again. But, God knew! He took care of it!

We went to cities again this past Friday to see the neurologist. He brought us back to the exam room and started testing Laiyla’s strength, reflexes, and range of motion. He was so surprised to see that she hadn’t gotten worse. He was even happier when he noticed that she had improved! He said he hasn’t seen anyone with AFM start to improve that quickly! That made my year! I think it made Laiyla’s too. She was smiling from ear to ear! We finished the appointment and made our way to the hotel for the rest of the weekend fun.

You guys, I’m not going to lie, I have never gone from the lowest of lows to the highest of highs in such a short amount of time. Two weeks ago, I thought I was losing my little girl. I honestly thought I would be burying my baby within the next few months. I couldn’t handle that thought. I went from that to hearing the neurologist say she was doing amazingly well within two weeks. It was all I could handle. I cried myself to sleep that night. Not because of sadness this time, but because of overwhelming relief, thankfulness, and joy. My baby girl was stable and, Lord willing, could pull out of this and recover eventually.

This whole process has taught me two major lessons. First off, I am such an unthankful, ungrateful person! I always thank God for keeping my family safe and healthy. But I now know that those words were just something that I added to a prayer each day. I don’t even know if I was thinking about them as I said them. It took this to get me to pay attention and actually pray. All the prayers to a big, loving, faithful God are what pulled my little human through this. She isn’t out of the woods yet, but she is definitely better off than she was before. God needed to wake me up. My only hope and prayer is that I don’t become complacent again.

The second thing I learned is also about prayer. I learned that I don’t keep other families in my prayers enough. I have a friend whose son has a rare form of cancer and is going through chemo right now. I always thought that I was praying hard for them. I have learned the hard way that I was not doing anything near what I should have been doing for them. Now that I’ve been in their position (countless hours in the Children’s Hospital, now knowing what tomorrow holds), I know that they need a ton more prayer than what I was sending up for them. I sent my friend a message as I was waiting for Laiyla to come back out of the MRI. I apologized for my lack of prayer for them. I told her how sorry I was that I had been slacking off, and that, with God’s help, I was going to be much more faithful and purposeful in my prayers for her son and the entire family. They have been through so much. I now understand completely how much those prayers are needed and how much they really do help get a family through a terrible situation like this. God has graciously allowed me to learn this lesson. And I hope I never forget it.

Thank you so much for reading this entire post. I hope that with each little mention of Acute Flaccid Myelitis, that someone else becomes aware of this terrible disease. I know there isn’t any way to prevent or treat it, but just knowing what signs to look for could help save a precious life. I know I will never look at a “common cold” the same way again. I will probably be a nervous wreck every time someone starts to get the sniffles. But God is in control and will always be in control. He can take care of the whole situation. AFM is no match for God. And I am so thankful for that!

Laiyla sleeping in the hospitalLaiyla hospital picture

 

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