Reflections & Ramblings: Volume Thirty-Two
This post is about Micah, my eight year old son with Kabuki Syndrome. In it I write about a scary event that happened yesterday, but it takes me a while to get there. The post is long and winding, so you’ll need to strap in if you want to make it through to the end. I’ve split it into two parts:
It is not uncommon for kids with Kabuki Syndrome to be born with heart defects. Many times, newborn babies with Kabuki Syndrome require open heart surgery to address concerns within the heart of the child. Some require surgeries throughout their childhood. Micah has a mildly dilated aorta. This isn’t extremely concerning, but it is still concerning enough that we need to have his heart checked out every couple years. Last fall, Micah was due for another checkup on his heart. And so this past September Sarah and I drove Micah to Omaha’s Children’s Hospital to have an echocardiogram done. Even before arriving to the hospital Micah was anxious about what was about to happen. He asked us the same questions over and over, scared about what was about to happen.
When we pulled into the parking lot, he grew even more agitated. He recognized this hospital being the area where he came to get his adenoids taken out, his tongue clipped, and tubes put into his ears. He was put under general anesthesia for that trifecta of a surgery, and it seemed to leave a traumatic memory for him.
Due to covid restrictions we couldn’t sit in the waiting room of the hospital. They gave us a vibrating buzzer, like one of those you get from a busy restaurant, and told us they’d buzz us in our car to let us know it was time to be seen. We had to wait for quite a while. As time stretched on, Micah’s impatience mixed with anxiety turned into panic. And when Micah gets into this sort of mood, it is near impossible to break him out of it. His pupils dilate. No answer satisfies his repetitive questioning. And he throws tantrums, flailing around and yelling at the top of his lungs.
“Why would the doctors need any pictures of my heart? My heart is fine! Nothing is wrong with my heart! The doctors are stupid!”
It goes on like that, and doesn’t really stop until some sort of unseen switch gets flipped in his brain and he becomes completely compliant again. When that happens he’s able to laugh and accept instructions and decisions again. Sometimes how quickly the turnaround happens from absolute noncompliant panic to tender compliance is unnerving. We still haven’t figured out any consistent triggers that flip the switch in his brain.
Eventually our buzzer started vibrating letting us know it was time to go into the hospital. By this point Micah was in a full blown tantrum. He had thrown off his shoes, he had taken off his coat. He was thrashing about in the back of the car. He refused to put on his mask.
All of this behavior was fairly predictable. It’s the reason both Sarah and I were present for this appointment. Micah is more physical these days with Sarah, and he’s grown quite strong. She can’t manage him on his own when he becomes this way. Sometimes I have to physically hold him back from hitting Sarah or trying to bite her when he is this upset. To get him out of the car, it was a two person job.
We brought him with us into the hospital. I carried him while he screamed, kicked, and flailed about. If I was easily embarrassed, this would have been embarrassing. People in the lobby all stared at us. Secretaries and techs and janitors all stopped what they were doing to see what the commotion was. I tried my best just to hold onto Micah as he screamed and yelled horrible things out into the echoing lobby.
When I set him down for a moment, he darted away from me as fast as he could. I had to chase him down and pick him back up to keep him from running away again. They called us back to the echocardiogram room after waiting a few minutes and I could tell the nurse was not prepared for what she was witnessing. She initially thought we just needed to help calm him down, but Micah was in that locked in state of panic, and he was out of his mind upset. Red-faced with anger, he took off his shoes and chucked them at the nurse. When she tried to take his temperature, he was able to break free from my grasp and kick it out of her hands and across the room.
He never calmed down, even while we explained that he wasn’t going to be having surgery, that they were just going to take some pictures of his heart. But he wouldn’t have it. And eventually enough time passed by that they decided that it wasn’t going to work out, and that we’d need to reschedule. I remember feeling so defeated.
His geneticist did eventually come and talk with us, and by that point Micah had calmed down a bit. He was still upset, but I think he was as calm as he was just because of how much energy he had spent throwing this long panicked tantrum. He still wasn’t willing to participate by answering any questions or following any instructions. And by this point, I wasn’t too much in the mood either. I was emotionally exhausted by the whole thing. And I had been kicked and slapped and bit by Micah countless times by this point.
I was deflated and discouraged. I felt that this trip to the hospital did more harm than good. The nurses or techs that were attempting to get Micah convinced that an echocardiogram wasn’t going to be a big deal just didn’t seem to have patience for Micah’s behaviors or much sympathy for Sarah or me in the midst of it. I’m sensitive in moments like those, moments where narratives of being a bad parent seem to flood the brain.
But the geneticist was much calmer and understanding. She was affirming of Sarah and me, and told us that we were good parents, and that she can see how much we care and love him. She validated how hard all of this was. I remember being so thankful for her kind words. An another appointment was rescheduled for us in November. We had trepidation about another appointment just a couple months later if nothing would be different. A couple months later when it was nearing the time of his appointment we knew that it would simply be a repeat of our last visit if we didn’t change anything about the plan. We figured that if it were going to work, Micah would need to be sedated or take some sort of anti-anxiety medication to be able to make it through it. The hospital postponed the appointment until January in order for them to figure out how to do that.
On Tuesday of this past week we got a call from the hospital saying that we were scheduled to come in on Thursday for his echocardiogram. We were going to go through a different part of the hospital for it, and work with a group of nurses and techs that were ready to help address Micah’s behaviors and anxiety. We were going to have him take an oral sedative to hopefully keep him calm and still enough for him to receive the echocardiogram. If need be, we’d step it up to a nasal spray or more. Sarah and I went into this day more mentally and emotionally prepared for what we might have to endure. Since Micah’s September disaster, we had experienced other similar meltdowns at various doctor appointments. I was discouraged because it felt like every appointment we had for Micah was a traumatic experience.
Thursday morning Sarah told Micah that he would need to stay home from school because he was going to go to a doctor appointment. We thought that maybe telling him first thing would be more helpful in the long run. He responded calmly to Sarah and simply said, “Ok.” He remained fairly lighthearted all morning, not seemingly concerned about the appointment at all.
After Ezra got on the school bus, and I had dropped off Lydia to her high school and the Boys Town girls to theirs, we got in the car to head to the hospital. Micah was generally cheery. He noticed when I pulled onto the highway that we were headed away from the clinic we go to for his routine checkups. He already was onto the fact that we were headed to the hospital.
I told him right away that his normal doctor wanted him to get those pictures taken of his heart, and so we were headed to the hospital to have those taken. And he asked why a few times, and then just kind of went along with it after Sarah redirected him to thinking about what donut he would want to get after the procedure. He took the bait.
We parked in a different area of the hospital than we did before, and this seems to disarm some of Micah’s defensiveness. It wasn’t the same exact place he had been before, nor the area he had gone before his surgery. He was inquisitive, but still rational and reasonable.
He was willingly participating each step of the way. We were screened at the entrance for Covid-19, and then allowed to check in. I let him borrow my camera for a moment to take photos and walk around with Sarah in the lobby while I sat in the waiting area.
Here are some of the photos he took:
Soon they called us back. Every adult that interacted with Micah was pleasant. They used sing-song voices and were very gentle with their approach. They asked Sarah and me questions about what would best help Micah. Micah was curious about all that was happening, a bit on edge and nervous, but he was doing very well, much better than Sarah or I anticipated.
The anesthesiology team asked us questions about what we thought would be the best plan to help Micah stay calm. We decided that sticking with the basic liquid sedative would be the best route, especially since Micah was so calm already. As we made preparations for the procedure, the nurse brought Micah three warm blankets to wrap up in and a movie list to choose from. (He chose Babe, which is his favorite movie.)
As time went by and Micah continued to remain calm, we started wondering if he would even need the sedative at all. Our questions were answered when the nurse said she was going to bring him some medicine and he began to get upset.
“I don’t need any medicine to stay calm! I’ll stay calm myself.”
And even though I had a twinge of skepticism about it, I thought me might actually be right. And so we changed up the plan to go ahead and try the echocardiogram as soon as possible, and without any sedatives. A few minutes later, as Micah was walking around exploring the room and investigating the various knobs and pedals and wires on the hospital bed, the tech came in with her nifty computer and asked Micah if he’d let her take some pictures of his heart. Micah said yes, and followed her instructions to take off his shirt and sit still as she placed the “magic wand” with “lotion” onto his chest and belly.
And he did incredibly well. He was quiet and calm through the entire procedure. He was somewhat interested in seeing the photos she was taking, but he also was focused on trying to sit still while watching Babe. Sarah and I were so happy he was doing so well this time around, while also a bit stunned.
After he was done everyone praised how well he did, attempting to both reinforce such great behavior as well as reestablish a positive memory with coming to the hospital. He was given drinks and a popsicle, and even a blueberry muffin – his favorite!
It’s possible all the staff thought we were crazy parents over prepared for a kid that didn’t seem to have any real issues with anxiety or getting this procedure done, but Sarah and I didn’t care. We were just so relieved that it went so smoothly, and we were so thankful for how calming and helpful each one of the staff had been with Micah. It ended up being a very good experience. I texted a friend who told me he was praying for Micah and his procedure today and told him that I need him to pray for us more often because it went remarkably well.
Because Micah hadn’t received any sedatives while at the hospital, he was able to go right back to school. So Sarah and I drove him directly back to his elementary school. When we arrived at the school Micah seemed hesitant about wanting to get out of the car.
“We’re here, buddy! It’s time to go back to school.” I said
“I don’t really want to go back to school. I want to go home.”
“Oh, it’s ok buddy. Why don’t you tell Mrs. Mitchell that you had pictures of your heart taken and you did sooooo good!”
“Oh, ok. Yeah.”
“And we are here before lunch, so you’ll go to lunch soon.”
He got out of the car with me, but then when I opened up the other side door to get his backpack he jumped back into the car. I had to reassure him that things would be fine at school and that Mrs. Mitchell would be so glad to see him. He got out of the car and I walked him up to the front door and buzzed him in. The secretary met us at the door and welcomed Micah back to school.
A couple days prior to this, Sarah and I had a meeting with a number of his teachers and therapists from the school to discuss testing results that he recently had. His scores had dropped in many of the areas since the last time he took it before Kindergarten. After discussing many of the results with the various adults, I explained that we have seen his anxiety soar in the last year and a half when it comes to school. Literacy has been a struggle for him, and he is extremely aware of his deficiencies when compared to his peers. School has become harder and harder for him and his anxiety about it has started to concern Sarah and me. He doesn’t get excited about going to school like he used to, and it is our opinion because he is not keeping up with his peers. They listened to us, and gave some of their own observations about Micah at school as well. Tried to think about how he could have more peer interactions that could help with his socialization as well.
Overall, though, I don’t really think people understand the level of anxiety that Micah carries around with him. He is on medication for it, something that we’ve really had to fight for. He’s in behavioral therapy with Sarah and me, where we are trying to help him accept decisions and help give Sarah and me tools to know how to help give Micah the attention he needs to thrive. It’s very difficult and emotionally taxing work.
Earlier in the week my mom and I made plans for her to come over to our house during the day, without kids, without noise, without extra responsibilities or meetings or appointments – just a time to relax and have lunch and talk and maybe play games. But just to be with each other as we still grapple with the loss of my brother. To be in the presence of each other is comforting and gets us out of the dark pits of despair and grief.
My aunt and my mom stopped by as planned for lunch. We talked about life and about our favorite books that we had read the previous year. We talked about how well Micah did at his appointment. As we were finishing up our lunch our home phone rang. It was our day off, so as Sarah got out of her chair I reminded her, “It’s our day off. You could just let it ring.”
“No it’s ok,” she said, “I’ll just go ahead and answer it.”
When she answered the phone I anticipated it being a call from the school or someone wanting to schedule an appointment or something. But Sarah’s tone was pretty immediately concerning.
I don’t remember the exact phrases Sarah was repeating on the phone, but I thought it was a phone call about one of our girls having behaviors at school or something, which is not something too out of the ordinary that I would rush up to try and figure out what was going on.
But when she said something like, “He’s with you right now?!” I realized it was not something about the Boys Town girls or about Lydia. It was about one of our boys.
She hung up and said that the phone call was from the Boys Town police. They told her that Micah was found walking around on the ice of the half-frozen lake on campus. A family-teacher named Matt had been driving by and called the police when he saw Micah. They rushed over and got Micah to safety. The police had him now and was in their custody, and he was safe.
It was too much for my brain to comprehend in one moment. I had so many thoughts at once.
How did he leave school?
How did he walk all the way to Boys Town?
Why did he think it would be ok to walk on the ice of the lake?
How did the school not call us about this?
Did he cross the busy road all by himself?
It’s 46 degrees outside and that lake doesn’t have much ice on it, so how did he not fall through the ice?
Who was this Matt person who called the police? Thank God for him!
Oh my God, my son could have easily died today!
I gave Sarah the car keys. She went to go grab her boots and coat, and I heard her say stern voice, “Hey Siri, call Montclair Elementary School!”
“Hi, this is Sarah Seaman, do you know where Micah is?”
“Yes, he is currently in class,” the secretary replied.
“No he isn’t! He is in police custody at Boys Town.”
“Oh my, let me put you on hold for a moment…”
Sarah rushed out the door while my mom, my aunt and I just kind of sat in wonder thinking mostly, “Oh my goodness! How did this happen? He could have drowned!”
To experience such terrifying emotions while working through the emotions of grief from my brother’s recent death didn’t seem real, especially sitting with both my aunt and mom. I didn’t and still don’t really have the vocabulary for it. It felt movie-esque. It felt, I don’t know, just a lot of questions and relief mixed with fear, I suppose. The acknowledgment that that phone call from police could have been completely life-shattering.
Sarah brought Micah home, and when I opened the door for them Micah walked in with a sort of grin on his face. I told him sternly, “I’m glad you’re safe but this is no time for smiles or laughter.” And the smile quickly disappeared from his face and he walked directly to his room to go hide under the covers of his bed.
Sarah and I quickly agreed we didn’t want to shame him or tell him we were mad at him, but we wanted him to understand just how dangerous what he did was. I went to his room and crouched down onto his bed and pulled back the covers. His eyes had red rings around them, and they were filled with tears.
“Micah. I am so glad you are safe, and I love you so much. But do you understand what you did today was extremely dangerous? It was so dangerous, and I want you to promise me you’ll never do that again.”
Micah, ashamed to look at me, told me he understood, and that he was sorry, and that he would never do it again, that he was scared.
I told him I was scared, too.
The story goes that his teacher had unexpectedly lost her mother-in-law that night and so his class had a substitute teacher. The sub was having the kids read in class and Micah felt embarrassed that he couldn’t read it and that it was too hard for him. Sarah asked him if he mentioned that to the teacher, and he said that others had already told her it was too hard, but she said to go ahead to try and read it anyway. So before it got time for him to read, he asked the teacher to go to the bathroom, and she said yes. And as he headed out the door he grabbed his coat and backpack when she wasn’t watching and walked out the back door instead of going to the bathroom. Then he decided he was going to walk home.
When he got most of the way back (about one and a half miles by this point), he realized that if he got home he would probably be in trouble with me and Sarah for walking out of school. So he decided to just hang out at the lake for a while to avoid getting in trouble. Apparently this is when he decided to investigate the frozen lake. I’m unsure how long he was out on the lake before he was seen. But somehow in that amount of time he did not fall through the ice to what would have been his almost certain death. I don’t really know what to say other than that.
We had been told the person that called the police was a family-teacher named Matt. Sarah called every Matt on campus and every one of them said they had not called the police. We were stumped. Who could have called the police? We had exhausted every Matt on campus. For a brief moment, in an attempt to answer questions, we allowed our minds to run to mystical answers. Maybe, just maybe, this “Matt” was my brother Matt, looking after Micah somehow. Just the thought of that caused Sarah and me to cry.
Like most things, the answer was more simplistic. It was not a Matt that noticed Micah, it was Max. And yes, he had noticed Micah as he was driving by, quickly made a U-turn while immediately calling 911. As he turned around he noticed a police car headed toward him and waved the officer down, explaining that he saw a kid on the ice. The police immediately responded. I’m so thankful that the police were right there at that moment, and I’m so thankful for Max taking the initiative to turn around. I don’t know Max well, but I know that had police not been right there at that very moment he would have been more than willing to jump in after Micah if it had come down to it.
To say that Sarah and I are thankful for Max and his responsiveness is perhaps the greatest understatement of our lives.
The school is currently investigating what happened. It looks like Micah was missing from school for an hour and a half without anyone noticing. Sarah has had conversations with the principal as well as the superintendent of the school system. Micah is home from school right now as we assess what will be best for him moving forward. Thankfully it seems they are taking our concerns about Micah seriously, and now have a clear picture of why we say we have been worried about his growing anxieties about school.
I wanted to write last night after all this, but I just couldn’t find the words, I couldn’t rehash everything clearly. I was experiencing a kind of emotional hangover from the surge of adrenaline that I experienced from the whole situation.
I have more to write, but I’m going to save that for later. I’ve written enough for today, I think. If you’ve made it this far, thanks for following along. Life is full for me these days, but I hope to write more very soon.