This week we crammed in as much fall break fun as we possibly could and managed to squeeze in some naps and chores in between. It was the reset that I personally needed to get mentally back on track for taking care of these boys full time. Sometimes I just need the relief pitcher for an inning or two!
On Monday the boys went to horse therapy, and it is always so interesting to me how much better they do when Jake is there to watch. Malachi puffs his chest out and rides like a professional. And Levi cried like he always does when he starts the session but dried it up within thirty seconds when he heard his daddy clapping for him.
On Monday night Jake and I had a very special surprise date night thanks to our great friends. We went inside a legit restaurant for the first time since early March and sat down for a nice kid-free meal. It felt so refreshing to simply get out of the car and walk immediately into the place without unloading wheelchairs and kids. Such a blessing.
On Tuesday morning I went solo to a car appointment and got to read a book for almost an hour and a half without interruption. It felt so normal and pre-children to be able to escape in my mind and focus on someone else’s words and life. I am a memoir gal, and have been working my way through all of the books of Corrie Ten Boom; this particular one she wrote about her father and all of the many spiritual lessons he instilled in his children. It was so challenging to me and caused me to evaluate how well I am instilling hard gospel concepts in each of my boys.
We spent some time at a local park down the road from our house, letting little Levi ride his bike. Malachi got to ride on the swing with dad, and this wasn’t an “ordinary” one like the one at our house…this one squeaked and groaned with each swing much to Malachi’s delight.
We still ran some soccer open fields this week for our girl’s team as we prepare for the district tournament. Jake ran the practices and I brought the boys out for a change of scenery.
Our haircutting friend came by the house that evening and gave each of the boys a much needed haircut. Levi was uncooperative but thankfully his hair is messy enough no one would know!
On Wednesday Jake and I planned a great day of fun for the boys, making the 1.5 hour drive to a large zoo in Knoxville. We made it about an hour from home and I turned wide eyed to Jake as I realized that neither of us had put Malachi’s food in the car that morning. Oops! Thankfully I keep some spare medical supplies in the van for worst case scenarios. We were able to dig out a syringe and an extension and hijacked some food from Levi’s feeding backpack to tide him over until we got home that afternoon.
We stopped for a nice sidewalk lunch on the way and took our sweet old time enjoying the beautiful day. When we got to the ticket counter at the zoo at 1:30 they informed us that the zoo closed at 2:00 that day. Oh goodness. But at that point we were committed as we had talked the day up to the boys and made the drive. So we bought tickets and booked it to the back corner of the zoo so we could take our time walking back to the exit.
Poor little Malachi was genuinely excited about the zoo, as this one had lions, tigers, and rhinos. But due to COVID precautions they had roped off several feet leading up to the glass. I couldn’t push his chair close enough to see any of the animals and seeing him try so hard to see them with his low, struggling vision broke my heart a little bit. He can’t really see them normally, but he can see movement if they come close to the glass by him. He was clearly disappointed so we did our best to describe them.
Then came the redeeming trip on the zoo train. That was the three minutes we needed to make the trip feel worth it!
And of course we let the boys pick out a toy from the gift shop. I am always so amused with how picky Malachi is when it comes to picking out a toy. He uses his signs faster than ever before and said “no” to at least a dozen stuffed animals before we found a jaguar puppet that he could put on his hand. He grinned and signed YES YES YES and we knew we had “the one”.
We headed back home and later that evening I took the kids to a friends house down the road. Malachi got to hold a rabbit and a kitty named Simba, which made him beam with joy and giggles.
Levi’s definitely in the toddler phase and emotional mood swings are frequent and severe. He has been crossing his arms when he gets angry with us, and I have to try really hard not to smile as it just looks so darn cute.
On Friday the boys and I made a trip to visit with my brother and his family in Atlanta. We get to talk on the phone with them often, but being able to run around with the cousins in person was a real treat.
I was also able to catch up this week on the special needs mom to-do list…the list that I let stack up because I just simply don’t want to deal with the phone calls. But with Jake home and no excuse not to, I tackled the list one item at a time.
-I filed a third medical appeal with insurance to cover Levi’s recent Cincinnati surgery.
-I worked with the old diaper company with no luck, so I transitioned us over to a new diaper company that will provide the brand/size we like. Call me a diaper snob I guess…but Malachi complained a lot about the other ones so I just don’t feel right making him wear them.
-I filed grant paperwork to get some financial aid to cover items insurance won’t cover.
-I picked out curriculum for Malachi’s homeschool program and started the pre-approval process for the purchases I would like to make with his state educational funding. Through the Individualized Education Account I have $7,300 to spend on his educational needs this year. That is mind blowing!
-We are also started actively looking for a tutor to come work with Malachi a few times each week so he can feel like he has a “teacher” and some time focused solely on him and for him.
With each tackled task I felt that water level that was resting near my chin drop a bit lower. I felt like I could take a deep breath and enjoy simply being present with the boys without the distraction of the to-do list.
Tomorrow we trend back towards our normal with Jake back at work. We kick tomorrow off strong with a routine trip to the hospital to see Malachi’s epileptologist. Malachi’s seizures are still a daily thing, but have morphed with the help of his CBD to short ones.
This week, however, they started amping up in frequency and intensity- interestingly timed with when we ran out of probiotics. Those fews days were very difficult with Malachi having some major seizures in the middle of the night. I sleep right next to him so I will wake up when he goes into one- he turns so hard that he starts smothering himself in his own pillow. I wake up to him trying to breath through the pillow and choking during the process. We try to race out of the room before he starts coughing or vomiting so he won’t wake up little Levi.
Malachi has intractable epilepsy, so it is always changing. We are currently at 4 different types right now, each with a different trigger. It is predicted that he will develop more seizure types as he grows and there is nothing we can do medically to eliminate the seizure activity. If I had to make a list of the worst things about being a medical mama I am pretty confident epilepsy would rank up in the top three.
Epilepsy is ever evolving, it is triggered by the most random things, and it takes my son away from me for a short period of time. Watching him try to recover after the seizure is over is heartbreaking, as you can see firsthand how draining those few moments can be on his little 7 year old body.
But the reason it ranks near the top of the list is because of the helplessness I feel in those seizure moments. A few years ago I remember telling someone that the only thing I can do is enter the seizure with him and try to give him some stability to focus on. I often try to stay as still and calm as I can so he doesn’t feel my fear. But I also have to be hypervigilant, counting his breaths to make sure they are consistent and keeping him from injuring himself.
But epilepsy has taught me what it truly means to place something in the hands of God.
Isaiah 41:10 ‘Do not fear, for I am with you;
Do not anxiously look about you, for I am your God.
I will strengthen you, surely I will help you,
Surely I will uphold you with My righteous right hand.’
During those seizures I have to be Malachi’s anchor in the storm. I have to make sure he gets through that moment safely and feels secure during those fearful times.
And so often I feel so alone in this job. The epilepsy mom is a unique role- one that you don’t truly understand until it intertwines into your every day.
But as I read this verse above it reminded me that in the same way Malachi looks to me to be his anchor in the storm, God is that same anchor for me in this leg of my storm.
The words “Do not anxiously look about you” ring so true in my ears.
I know I often talk about things that are unique to special needs parenting, but the blessing of our story is that the struggles are universal enough to be applied to so many other situations and lives.
What in your life is causing you to look anxiously around you? What things in your life create a paralyzing fear, as you recognize there is nothing you can do to eliminate that beast that you are staring into.
But even more powerful that the command to not look anxiously around are the simple words that follow it: “I am your God.” So perfectly simple. In the same way I reassure my son in his seizures that I’ve got him safely in my arms, God gives us that same comfort in our struggles.
I don’t know what your “epilepsy” may be. But my hope is that this week we can recognize the calm arms of God wrapped around us in those moments of helplessness. As often as we try to convince ourselves that our struggles and trials are unique, they all have the amazing potential to send us closer into the embrace of God.
Please pray healthy over our family as we continue to try to live and thrive in a COVID world. Pray that the refreshing that I was able to experience last week will carry me for a long time.