I am so very pleased to report that Malachi is back to his normal, silly self! He has been so excited to be back in his element here at home and doing things that are familiar to him. We are starting to get him back into a routine, even regarding sleep, and although it still has moments of chaos, life is calming back down. His seizures are occurring less this week, but he is still having more “sparks” than normal so we will be contacting his neurologist to see about adjusting some medications.

Every year the end of summer seems to sneak up on us. Jake has exactly one week left before he returns to school so we are trying to find the balance of cramming in family fun as well as giving Jake the rest he deserves!

This week was a hot one here in Tennessee and as you know, Malachi is not a fan of the heat. We tried a hippotherapy session on Monday but the heat was also affecting the horses and they were not cooperating one bit! The therapist quickly recognized that we weren’t going to have a very productive session and changed gears, pulling out another horse and riding with Malachi. By the time we got settled Malachi was so warm from the temps that he became a limp noodle.

Malachi’s physical therapy and occupational therapy sessions ended in a similar manner with a wiped out little boy! When we arrived his therapist told us they had sanitized the ball pit and had kept all other patients out until Malachi could take a turn. I was thrilled to see how he would react to the stimuli, and after a few minutes of soaking the concept in, he was hooked! He has to work so hard to handle multiple stimuli and by the time we finished in the ball pit and on the swing, he was ready for the session to be over.

To combat the heat we spent lots of time in the water this week, playing in the local creek one afternoon and spending some time in my sister-in-laws pool. That boy still loves to swim!

Jake and I were talking about last week’s visit to Ohio and noting how differently Malachi was perceived by strangers. Up north, people would completely ignore Malachi, averting their eyes from him and almost acting as if he wasn’t there. Not in an offensive way, but it was definitely different than our environment. This week Malachi and I went to lunch at Cracker Barrel where a random stranger went and bought him a stuffed toy and brought it over for him to play. At another restaurant this week, multiple strangers came up to Malachi and started conversations with him…not us, him. Malachi loves the interaction, and we secretly love the support those moments offer us. It is nice to see a world that embraces our little boy instead of avoiding him.

It is continually touching to us how strangers offer support to Jake and I in the most simple ways. If I had to guess I would say we have had complete strangers buy our meals at least 20 times just this year. Process that. That is ridiculously amazing!! And each time it happens, both Jake and I get teary eyed at the unspoken support we feel in our journey. And the greatest part is, each time it happens it is at a time when I need a boost. Times when I am emotionally fragile as I deal with the physical and emotional toll of caring for Malachi. God is using people in our world to remind us of his love. It is powerful.

Malachi’s little brain is definitely going through changes and we are so happy to see progress. He is attempting to use his vision more and when I ask him “find me with your eyes” he truly makes an attempt to lock eyes with mine. We are also impressed by his response time to simple commands. If I say “sit big” he will pop his chest out and sit tall for a few seconds. If I say “show me sad Malachi” he will stick out his bottom lip and give you his sad face. It used to take him so much thought and effort to reach his hand up to a toy when asked, but now he will do so within 10 seconds of me asking him to. Malachi was playing with one of his toy cars while I worked on the computer this week and I thought I would film a short clip for you. You can see how hard he tries to do what I ask of him.

His personality continues to shine through and we are so awestruck by his ability to be mischievous. His new game this week was waiting until I pick him up out of the bathtub (something VERY difficult to do with his limp body) and on the way up to my shoulder he will grab the shower curtain and not let go. Both of my hands are occupied trying to hold up a 40 pound slick child and he knows I can’t do anything about it. I try to wiggle him loose which causes the curtain to make noises, which is apparently hilarious! Little stinker.

We are also seeing glimpses of his amazing memory. This morning during church the song director chose to sing “10,000 Reasons (Bless the Lord)” which is his all-time favorite song. I didn’t tell Malachi that it was coming, but within 3 notes he knew the song and started literally squealing with joy. Most of the church knows that it is his favorite song and will even refer to it as “Malachi’s song”, so hearing his joy made the congregation erupt with laughter.

Daily I find myself looking at Malachi and realizing how incredibly lucky we are. He has such a big personality and a gentle spirit. We met a local family this week that wanted to take a look at our handicap van to see if it would work for their 25 year old son with cerebral palsy. This young man has been severely affected by CP and is unable to interact at all with his world…no facial expressions, no recognition, and his body has been overtaken by the effects of CP. My heart hurt in comradery for this family as I tried to imagine daily life caring for a son that couldn’t grab the shower curtain or mischievously color on the table.

I think back to Malachi’s early and rough beginnings and the predictions that were made about his life. And while he is not unscathed, we have definitely witnessed a miracle healing in his life. His full healing has yet to come, but until that day we will simply thank God for the blessings he has already provided for our family. We will thank him for the shower curtain moments and for the sleepless nights like tonight when I am interacting and playing with a wide awake 3 year old who wants to listen to his favorite Bubble Guppies episode. We will thank Him for the blessings both great and small.

Much love,

Jake, Leah, and Malachi

As I sit in the cabin listening to the rain on our metal roof I can’t help but breath a sigh of relief and smile…it is always good to be home! In fact, we just pulled into the driveway about 20 minutes ago from our big Ohio adventure.

Malachi seems to be “adventured out” and did not handle the trip north as well as we had hoped. After weeks of calm and predictable Malachi, he suddenly morphed into chaotic and scary Malachi. He struggled this week with some pretty intense seizures and had one that resulting in him not breathing for a few seconds, something that hasn’t happened in several months. He developed a knack for waiting until we were in a very public place like a restaurant before seizing intensely and projectile vomiting. He was up and down at all hours of the night, sometimes waiting until 8am to fall asleep for a spell.

As messy and stressful as Malachi’s week was, most of it was absolutely wonderful as we got to visit with family. We were able to connect with relatives that we only get to see once or twice a year and Malachi was his snuggly self when his great grandmothers held him close. He is just about too big for them to hold onto easily so I am very glad we made the trip this summer!

Malachi has been surprising us lately with his ability to listen and understand our words. I am 100% confident that he understood this morning when we told him we were going home, and he sat in the back seat with the cutest look of anticipation on his face as we made the 7 hour journey. We stopped at a random Mexican restaurant for lunch on the way home and he was the wildest I have ever seen him, wiggling and dancing to the mariachi band playing on the radio. As we got closer to the house he started squealing with joy, without us even saying a word about being close. He is one smart little boy!

One of our favorite Malachi moments from the week happened one morning shortly after he woke up. Jake brought him into the living room at my father’s house (who is not a dog owner) and Malachi looked around excitedly and said “Dogs”! He is so used to being greeted by his puppies every morning! He was thrilled when we went to his grandma’s house and found a dog.

Jake and I are pretty worn out as we still have not fully recovered from our busy week last week! The rest of our summer will be devoted to therapies, doctors visits, and staying close to home. Oh, and lots of visits to the pool for Malachi. A much as we love adventure we are learning how drastically different things can be with a special needs child. Even short visits with family had to be calculated carefully, being conscious of medication schedules, feeds, and making sure Malachi could tolerate the excitement. Life has gotten very complicated. Again this week I found myself on the verge of crying multiple times, simply overwhelmed with taking care of my own child. Life is just so very complicated.

Today at lunch we passed a family when walking in to the restaurant. Almost immediately my “special needs radar” went off, not because of a child I saw but rather the way the parents were looking at Malachi. Both sets of parents studied the other, and there was a silent acknowledgement between us…an unmistakable bond. Their son came through the doors, stimming loudly and we smiled at him and walked in. No words were exchanged but it was absolutely refreshing to see someone else in our world that understood our struggles a bit. Someone else that was choosing to simply live life, despite the stares and awkward moments that we encounter daily with Malachi. It can be a lonely world, but those few seconds in the parking lot brought me some peace.

I read a quote this week in my devotional book that made an impression on me.

“The burden of suffering seems to be a tombstone hung around our necks. Yet in reality it is simply the weight necessary to hold the diver down while he is searching for pearls.” -Julius Richter

Reading this made me think about the pearls that we have discovered in our journey with Malachi. We have learned the concept of true unconditional love. We have seen firsthand the mysterious ways of God and felt the precious feeling of release when we hand our burdens over to him.

The Bible says in Matthew 11 “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

What a wonderful relief it is to know I have access to the shoulders of God to lean on for comfort.

Please pray with us that Malachi’s seizures stop and that his little body can get some much needed rest. Pray that he can transition easily back into his routines at home.

Thank you for checking in on our family! We love you.

Jake, Leah, and Malachi

Let the chaos begin! Every summer Jake and I inevitably over-plan a few weeks in a row and things get wild. Our chaos is about to explode and I am secretly looking forward to it, knowing full well schedule changes may include some unscheduled mayhem.

This week Jake and I will be packing up and taking 20 of our youth group members to summer camp in South Carolina! Malachi will be joining us, of course, so I have been making lists and notes that are pasted all over the house making sure I won’t forget anything. Packing for Malachi can get complicated as we have to think through medications, syringes, “worst case scenario” supplies, and enough special food to get us through. A lot of that can’t be packed until the morning of departure, as it is still necessary in our daily routine until then.

We eased into the chaos a bit this week with a few adventures. Malachi impressed us all with his ability to ride on the horse all by himself at therapy! We were walking on either side of him, offering support as needed and he loved the independence. We took over 200 pictures, and had about 5 good ones (oh, the special needs life), so I thought I would post a few of those for you!

Tuesday we headed to Chattanooga for a visit with Malachi’s DME Provider (Durable Medical Equipment). This is the company that has helped get Malachi’s wheelchair, activity chair, and bath chair. The larger Malachi gets, the harder it is for Jake and I to get him into good positions that will help his body develop like it should. We have been talking about trying to get him a stander which will allow him to bear weight on his legs and knees, stretch out his core while properly aligned, and work on his head control. We found one that we thought would work well for Malachi and our DME was able to find a demo for us to try him in. This is not the exact stander that we are going to try to process through insurance, but it is similar.

As you can probably tell from the picture, Malachi wasn’t a big fan. After just 5 minutes in it he started crying in pain. His little body isn’t used to being in an upright position and his joints aren’t used to having to work in that manner. But it is really important for him to continue to spend time in a stander to help his body learn its intended functions. Baby steps! Overall we were happy with the device and how easy it was to use.

Speaking of insurance, we have been battling it out via phone all week. Looong story short, Malachi is in a size 7 diaper. They do not sell these in stores, but Pampers does sell them online so we order them each month. When Malachi turned 3 he was eligible to start getting diapers covered through his insurance, but we felt guilty pursuing that route as many other parents we know with kids Malachi’s age are still part time in diapers. If typical families are still providing these for their children, we felt we should as well. Now that his buddies are potty trained we decided it was time to make the phone calls.

I talked with insurance and told them he was in a size 7. While insurance does cover his diapers, they are very limited and particular about the type and brand. We are not brand snobs by any means, but the samples we were sent just aren’t cutting it. Let me attach a picture to help explain.

Diaper #1 on the far left is a size 6 that the insurance company sent. Malachi and his big booty don’t quite fit into this one. Diaper #2 in the middle are the current size 7 Pampers we order for Malachi.Diaper #3 on the far right is the “next size up” from Diaper #1. In addition to them being HUGE, they are plastic trash bag type material on the outside and crinkle with every move. We gave them a try, but even with folding, cutting, and wrapping we just can’t even get it close to working.

We called them back to see if their were other options and were told there were not. The only loophole we have found is asking one of his doctors to write a letter explaining that Pampers size 7s are the only ones that will fit Malachi appropriately right now and therefore “medically necessary”, and cross our fingers that insurance agrees. There is a pretty slim chance this will work, but I have pursued that route. The frustrating part is that this process has taken hours on the phone to even coordinate and the odds of it working are against us.

And truthfully when he outgrows his current size the idea of the trash bag diaper makes me so sad. I know it seems silly because it is just a diaper, but having to transition from “baby” items to “special need child” items is hard for me to process emotionally. The warrior mom in me wants to protect Malachi’s dignity as much as possible, and if he must wear diapers the rest of his life, the least I can do is make sure they aren’t noticeably loud and ridiculously uncomfortable.

Wednesday was appointment day as we raced around from 9:30-4:00. During that time Malachi had a physical therapy session, an occupational therapy session, a visit to the chiropractor, and a follow up dentist appointment to check his new crowns. He was such a trooper! Here is a video clip from his therapy session that should make you smile:

Malachi also got some pool time in this week. We had a nice overcast day which allowed him to swim without a hat and his flaring anger towards the sun!

We also went on a big adventure yesterday to Wilderness at the Smokies in Sevierville with Jake’s family. If you aren’t familiar with this place, it is a giant indoor/outdoor waterpark about 2.5 hours from us. They wouldn’t allow Malachi’s neck ring so we were a little limited on where we could take him but we did find an indoor preschool area for him to enjoy for a bit. Our intention was to stay the night, but in true Malachi fashion he woke up at 3:00 (that was his wake up time this week) and when he realized daddy was in the room with him, there was a 0% chance of him going back to sleep. After discussing our options we decided it was best to pack up and head out, spending Malachi’s 2 hour awake chunk in the car rather than sitting in a room.

Our plan backfired a little as Malachi was SO EXCITED to see his dogs. After all, it had been a whole 12 hours since he had seen them last haha. That boy sure does love his dogs, and boy do they love him! I captured a sweet video tonight to show you how tolerant they are with him.

So as we embark on our chaos, we would like to ask you for your prayers! Traveling with Malachi is a challenge in itself, and during youth camp he is solely my responsibility as Jake is busy keeping up with the kids. It was physically challenging for me last year, and he is so much bigger. Pray for physical  strength for me to be able to fully care for him and at the same time help encourage spiritual growth in our campers.

Please also pray for Malachi’s health to remain as he is about to be exposed to a week of germs. We have been very blessed that he has avoided sickness this summer, and our prayer is that his immune system continues to work so well!

Thank you for listening to my worries, woes, and complaints each week! You guys are a collective support group for this momma and I am so grateful to have an outlet of loving people. Thank you for caring about my son.

God bless,

Jake, Leah, and Malachi