This week’s schedule was packed. Weeks like these are hard on all of us, but particularly Malachi as his routines and feeding schedules get a little wacky. Yet he loves the adventure of it all and is always a good sport.
We live in a very rural area so our nearest “big city” is about 25 minutes away. Right now we have 6 standing therapies/appointments each week, and several random specialist appointments strewn in throughout the month. In between appointments each day I am trying to work in Malachi’s feeds (and mine haha), diaper changes, and other necessary errands. I typically end up packing a cooler in the mornings with enough food to get us through the day and then use the cooler for any grocery items or medications I have time to snatch up along the way.
We have a few regular places we use for various things….for Malachi’s bottles we sit on the porch at Cracker Barrel on a nice day, or the Target cafe when it rains. For bathroom stops we have learned that Kohls, Home Depot, and Target family bathrooms are wonderful for wheelchair accessibility. In emergency situations where I don’t have time to get Malachi unloaded and into his chair, Sonic’s nasty bathrooms work well as I can park in front of the door and lock him in for 30 seconds.
As you can imagine, life with Malachi’s necessary routines can get a bit hectic! But as any parent does, you simply learn to cope and just deal with it. We are so incredibly grateful that Malachi is in such good health right now and has stopped vomiting daily! In fact, he has not vomited since January…a far way from the 6-8 times a day! We are thrilled.
We are continuing to see more and more of Malachi’s personality unfold, and let me just tell you that he has such a beautiful soul. He loves so freely and gives the best hugs and kisses. He is still very mischievous and has started the “let me throw this on the ground because I know you will pick it up” game. As we go through the aisles of the clothing stores he will hold out his arms so he can feel the clothes as they fly by. He still consistently giggles EVERY time he hears something that remotely sounds like passing gas. There are so many times I look at him and see a typical four year old child!
But the most exciting change with Malachi is to see how much he listens and understands. On Wednesday we attended the funeral of a dear church friend. Jake was a pallbearer and needed to be there early so it was just Malachi and I. I felt a little uncomfortable with the idea of taking him to a funeral for fear he may yell or make a scene during the service so on the drive over I talked with him about where we were going. I talked about how some people might be sad and crying because they lost their daddy/husband. He listened with intent eyes and seemed very curious.
I wanted to be as discreet as possible so instead of using his wheelchair I strapped Malachi into his carrier and wore him into the church. When we made it to the front of the visitation line I leaned in to hug our newly widowed church friend and Malachi unexpectedly kissed her on the cheek. It caught me off guard, because unless you are holding Malachi or you are prompted he won’t attempt kisses like that. I don’t know if he could sense her sadness, but seeing his little gesture of comfort was so heartwarming to me.
Malachi had a few minor quirks this week that we are keeping an eye on. Thursday night his body temperature dropped a bit lower than we would have liked. We worked hard to get it back to normal with extra clothing and blankets but in true Malachi fashion it then rose too high. So we worked to bring it back down and we have not been able to get it regulated quite yet. We kept him in three layers today and it stayed around 97.5 at its highest point so we will continue to watch him closely. The brain is responsible for temperature regulation so it is something he really struggles with.
We made progress on our construction process this week! Here are a few photos…
And I just want to take a minute and share this beautiful sunset with you. I can’t wait to see this every night!
Every now and then I get in a slump with my blogs and feel like I just don’t have enough information to make it worthwhile. I have been leaning towards one of those slumps lately, and God encouraged me through several different people this week. I received three separate emails and got to see some die hard Malachi fans this morning during church as they drove through on their way to Florida!
One of the emails this week was the reminder that I needed that we need to continue to expect Malachi to be healed completely. To be honest, complete and total healing hasn’t been on the top of my prayer list for him lately. I have been praying for the small things…head control, the ability to speak, the strength to hold his head up. I needed to be reminded that God can do great and mighty things to Malachi’s body and mind.
It is so easy to get discouraged in this walk. I spend the majority of my day trying to anticipate and care for Malachi, so every day I am face to face with his many needs…most of which aren’t getting any better and in fact are getting worse. It is so hard to watch your child suffer but have to be strong and help him figure out a way through it. Miracles sometimes seem so impossible when you are faced with reality day after day.
But God can do more than we could ever ask or imagine. I have to be reminded of that from time to time..
I have had a lot of emotions this week. This morning I got sick to my stomach as Facebook reminded me that four years ago Malachi was taken to Vanderbilt by ambulance from the NICU in Chattanooga. I couldn’t ride with him and had to watch them take my fragile baby boy three hours away. That was the day that his femur got broken as well and I can’t get that phone call out of my mind.
Today was also the date that Malachi went in for a routine eye test in 2014 and had a massive 25 minute seizure. I get sick to my stomach just thinking about that day, and the visual image I have of that doctor nervously walking towards me in the waiting room is one that I can never forget.
There are so many scenes, smells, sounds, and memories that are etched into my mind. It is amazing how quickly these emotions can get triggered by something small.
And finally, I bawled my eyes out watching this short video clip about moms with sick children. While I can’t relate to each of the mothers in this video there are so many scenes that resonated with me.
It is hard to explain, but writing these blogs each week allows me to package all of the chaos from the last seven days into a file folder and tuck it away. It allows me to start each week brand new and focus on the accomplishments the next seven days may bring. It allows me to cope.
And it has also given me a support system like no other. It brings tears to my eyes when I think about how many of you take time to mention Malachi by name in your prayers. It takes a village, and I am so thankful that you have chosen to be a part of ours.
Jake, Leah, and Malachi