I find myself eager to write the blog tonight, really needing to dump some emotions somewhere. It has been a busy week, full of good things and hard things.
It is sometimes difficult to explain the pendulum of being a special needs mother to others in a concise way. As I thought about our week I visually pictured a toggle switch so I whipped up a visual to help me explain.
When the switch gets flipped to the Medical Mom Mode I become caretaker. It is not that I withhold love and cuddles in this mode, but my focus is more utility making sure needs are met and life is preserved. This mode takes an incredible amount of effort and focus. Medication doses, seizure activity, positioning, oxygen levels…it is a mode that I can’t afford to do half heartedly. Oftentimes the fun gets overshadowed by the necessary, so it becomes a dark place for both Malachi and I to rest in. And a boring mode for Levi. But I also can’t afford to let emotions cloud my thinking, so those get shut off to allow me to focus.
Then there is Typical Mom Mode. I am always keenly aware when I am in this mode, and it is a gift each and every time the switch gets to rest here. In this mode we get to pretend that medical issues don’t exist and just enjoy being a family. I would venture to say that each day has moments of this mode, but spending more than an hour or two in this mode is rare. Medical routines and feeding schedules require the switch to get toggled back over. And truthfully it is in this mode that the exhaustion of medical mom catches up with me, depleting my energy to do much with the boys. Adrenaline crash is such a real thing in our world.
This week I spent a lot of time in Medical Mom Mode. Malachi’s brain is severely damaged and one of the areas that sustained injury is the part that controls temperature regulation. This week has been filled with mysterious high fevers that appear out of nowhere and disappear after an hour or two. Normally I ride out these fevers and they eventually stop, but he is scheduled to go to the operating room on Wednesday for his bronchoscopy so I am a bit more nervous about waiting it out.
On Tuesday evening we got home from soccer practices and I fed Malachi. Within 10 minutes he zoomed from 98.6 degrees to nearly 102. His oxygen saturations dropped from 94 to 84 and his heart rate was around 170. He started visibly shaking, clearly in pain and the only thing I could think of that may have contributed to this sudden change was the fact that Malachi had not had a bowel movement in several days. I started to wonder if we were dealing with impacted stools so I packed a hospital bag and took him down to the Emergency Room at 1am. By the time we got there he was completely back to normal…no temperature, no oxygen issues, normal heart rate. I almost felt foolish being there but we went ahead and verified with x-rays that he was moderately backed up.
They sent us home with a clean out protocol, so the second half of our week kept us home and close to medical supplies and diapers. I will spare you the details from that process haha. Saturday night his random fever came and went and tonight it came back. Something is definitely irritating his system but it doesn’t seem to be a visible illness.
In situations like these it seems the switch gets jammed into medical mom mode and superglued there. Even in my sleep I am listening for seizures (worsen with fevers) and waking up to administer medications and check temperatures. When Malachi is uncomfortable I try to do anything in my power to keep him comfortable, and oftentimes that means holding him for hours and hours at night. I lose track of days and nights and psychologically that starts to mess with me. It has been a mentally and physically exhausting week.
But let’s talk about some fun things for a bit.
Our soccer ministry came to an end yesterday and it was such a fun final day. We set up some backdrops for parents to snap some photos and I snagged a few of the boys during our trial run. I had to bribe them to smile with some chocolate from the concession stand but the results were worth it.
The last six weeks has been such a refreshing thing for me as I had the opportunity to connect with so many amazing kids. We were able to talk to them about Jesus twice a week and teach them soccer. Watching them improve their skills and soak in truths about God energized me so much. I am going to be sensitive to not post group photos without parents permission, but I know this sweet girls momma won’t mind me sharing this one. Such precious souls!
Monday the boys had their annual appointments with the pediatrician. Because we are followed by so many specialists we don’t often have to go to the pediatrician, so most of these annual appointments are me filling her in on what each specialist is happy with and concerned with. She was pleasantly surprised with Levi’s progress in one year and Malachi’s ability to communicate.
Levi had to get a few shots and was not happy. When we got in the car I heard him mumbling to himself in the backseat and I asked him to repeat what he said. In a sulky voice he said ”Me ’bout punched that doctor.” Y’all, I have no idea where that came from. We don’t talk like that, but in his mind he was ready to start swinging.
Levi is so observant and has picked up on so much medical terminology. He often catches me off guard with his random knowledge, like the correct names for the tools the doctor uses. This week he saw me drawing up Malachi’s medicine and said ”Getting Malachi’s keppra?” Malachi takes 6-8 different medications and he can correctly identify 4 of them by name when I hold up the bottle. Ummm what?!? That isn’t something I have taught him so I was shocked when I tested him. Smart boy.
Malachi got a fancy new headrest cover for his wheelchair to complete the Spider-Man theme. He is very proud of it! We found an Etsy shop run by a high school girl and were thrilled to find one that was perfect for Malachi. If you are a special needs mom and want to check her out here is the link: https://www.etsy.com/shop/RockMyRide?ref=simple-shop-header-name&listing_id=1182145080
You can also spot our new family game in the background. Malachi absolutely loves this dart board and gets really into our friendly competition.
Now on to some reflection time. I haven’t had a chance to really script this beforehand so you all get the fresh cut version.
This week Levi said ”Mommy, look at this.” When I looked down he was crawling on the ground like a baby.
And I felt hot tears come to my eyes. I have been a mother for 9 years and it was the first time I witnessed a child of mind crawl like a baby.
Now Levi is four years old and walking, jumping, climbing, and scaring me on a daily basis with his adventure seeking. But here he was crawling, and so proud of himself for his ability to coordinate his body to do that action.
He jumped up, waiting for affirmation and I laughed through my tears and told him how proud I was of him. And then the feelings flooded in. Actually, they are flooding in right now as I type this.
The first wave of emotion is such joy. I flashed back, thinking about that little baby Levi hooked up to oxygen, his feeding tube, and a pulse oximeter 24/7 for the first few years. I remember watching him play on the floor and trying to make a plan for when he would start to crawl. But after months and months of waiting that developmental skill never came.
The second wave of emotion is such mourning over our loss of normal. A sadness that after 9 long years I am celebrating something that most parents get to celebrate a few months into the parenting gig. Our journey has been so, so hard. It has been riddled with disappointment and unmet milestones. And filled with specialists that are very skilled at using those unmet milestones to label, medicate, and reality check us. I actually detest milestones and the grief I allowed them to bring into my life.
The third wave of emotion is shame for even allowing emotion #2 to enter my psyche.
And the fourth wave of emotion is overwhelming thankfulness. I am so thankful for a miracle in Levi’s life. I am thankful that God granted us these seemingly insignificant glimpses of normal.
The truth is that I could choose either of these four emotions and settle into them. I could decide which reaction to stick with, and let it influence the moment. And I could find dozens of you that would justify whichever one of these I chose.
As Christians we are called to be different than the world. We are called to “Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12
We aren’t called to settle in the dark places our mind will inevitable be drawn to. Even when they are justified.
This week I was sitting on the couch with Levi and I noticed him studying our photo wall. He pointed at the large, stenciled words scattered in between the pictures and asked ”Mommy, what do those words say?”
It was the first time he has noticed the words so I read each one carefully to him…
“Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent…Think on these things.” (Taken from Philippians 4:8)
He intently listened to each word, trying to understand what they meant. I explained that we are called to focus on the good things that God does in our life instead of the bad. I asked him if he could think of a good thing God has done for us and he said ”Malachi amazing!”
Yes he is, buddy. Yes he is. Cue the ugly cry.
We kept the list going and talked about the good, and watching him reflect was such a reminder to me that wherever that toggle switch lands, whether I am in medical momma mode or typical momma mode, I am called to focus on the good, recognizing the gifts God places in those moments for me.
I don’t know what labels you could place on your toggle switch, but I want to challenge you to look for the good even when it gets flipped to the challenging position.
Please say a prayer for Malachi this week as we attempt a procedure on Wednesday. Pray that it is a fruitful endeavor and we get some answers onto whether or not he is aspirating.