So much has happened since our last entry! Levi turned the big 6. He celebrated with his school friends and some dirt pie and later that evening we took him out for a birthday adventure. Oddly enough, I vividly remember my 6th birthday so that drove me to make it a special memory for him.

We started at Five Below to spend his birthday money, then enjoyed a special hibachi style dinner that they cooked in front of him. Malachi really enjoyed this part too, especially the fire and the noise.

Levi ate to his heart’s content, stating “Mom, I am utterly full.” I am not quite sure where he learns all these phrases but they make me smile. After dinner we went back to the house where we all got to play with his new presents.

Later that week Jake and Levi made an extended weekend trip to Ohio to pick up some things that required a trailer and a hitch. We considered taking two cars so Malachi (and his wheelchair) could also make the trip, but decided it was best for he and I to remain home. It was going to be a 3 day trip and the quick turnaround would have been hard on him.

Malachi was indifferent about the idea of the trip until they actually pulled out of the driveway; then he was visibly angry that he didn’t get to go. He is very aware when he isn’t included in something, and it is something we are very careful about. And I felt some serious mom guilt, as I often do with Malachi.

I hyped up our long weekend together and promised him some adventures! We did an afternoon trip to Pigeon Forge to watch the Pirate show and ended the date with a trip on the (surprisingly handicap accessible and slightly terrifying) Ferris wheel and a cherry icee.

Our few days together was special and much needed bonding for just the two of us.

In the meantime….

Jake got to Ohio and the stomach flu hit him about 24 hours later. He was too weak to make the trip back for several days. Then when he finally did start the drive Levi began throwing up in the back seat, initiating his round of the flu.

I felt an eerie sense of dread that day as I waited for them to get home, knowing we were going to go into quarantine and would likely all have it within a few days of them being back. And we were horrifically right.

We spent the first half of Thanksgiving week dealing with some pretty major sickness. The tummy issues lead to increased seizures for Malachi, one every 15 minutes for nearly 8 hours one night. We camped out in living room so I could manage his equipment and supplies. It felt eerily similar to our worst Covid round a few years ago.

When Friday rolled around we were all feeling well enough to venture out to the Christmas tree farm and pick out a tree. We don’t have many traditions but this is one of them we try really hard to do each year. Both of the boys LOVE this one.

As you can see, Malachi was (and is) still very worn out and easily overstimulated from being sick. It usually takes him around 2 weeks to recover his stamina after he is sick. His seizures are still pretty aggressive right now too.

In the low light and calm setting of home Malachi officially approves of the tree.

These boys…these sweet boys. The older they get the more their bond touches my heart.

I shared with you last entry that Levi talks every day about how he is going to build a handicap house when he is older and Malachi is going to move in with him.

Now he has been dreaming about the type of car he wants to get when he turns 16, asking “Mom, can we get a ramp in the back of that kind for Malachi?” He has also decided that they will get a pet rat in their house, since he knows that that will never happen under my roof due to my disdain of all rodents. Malachi just grins and giggles when they talk about these things and my heart swells with pride seeing Levi be so naturally inclusive.

In all honestly, I shed tears every single week over their sweet moments.

Even though we were sick, the blessing of being home together as a family was felt so strongly. I can recall at least three Thanksgiving hospitalizations that we have had so having the opportunity to heal at home was something I found myself truly grateful for.

Ohhhh so many directions to take the devotional thought this evening. I have been praying about which one to write about. The Word has been very specific, living, and active for me lately in powerful ways, praise the Lord!! I guess I should rephrase that, as God’s Word is always these things, but our hearts sometimes don’t allow it to saturate us as thoroughly.

The purpose of me writing this blog is to give you a glimpse into our medically complex, special needs world so I guess I will take you down that path tonight.

Malachi loves a good story. We have tried reading books to him, and while he loves listening and is often engaged he gets bored pretty quickly. He loves it when I change up the voices for the different characters and read it in a very animated voice, which is easy to do for a small chapter book but difficult to maintain for the age appropriate ones he wants to read right now.

So we have been finding movies adapted from famous books for he and I to watch together. I narrate every detail of the movie, pausing often to describe scenes and explain what is going on. And he is hooked!

We finished “The Indian in the Cupboard” this week and I started our next one, “The Secret Garden”. I remember loving the book as a child but I didn’t remember all of the details.

In the movie, a young girl named Mary becomes an orphan and moves into her depressed uncle’s large house. She hears screaming often and finally discovers there is a boy who has been confined to his bed/wheelchair for the last ten years. His mother fell off a swing in a garden when she was pregnant with the boy, causing her death and the baby to be born prematurely.

They reference this a few times, talking about how the dad didn’t even like visiting the boy because it made him too sad to see him like this (presumably on his death bed). They also talk about how they thought the boy would die after he was born and he was likely to die sometime soon due to his poor health.

Mary starts sneaking the boy out of the house and into the secret garden where he learns to walk. The more he learns to use his legs the happier the boy is. And at the end there is an emotional scene where his dad enters the garden to find his son walking and healthy, and because of these changes there is now joy in the family.

Had I been fully aware of this specific content and theme I would have skipped this movie. But my ignorance and lack of thorough research put us 45 minutes into a movie before my first hesitation hit. I turned the movie off and Malachi immediately signed “more”. By then Malachi was FULLY invested in this movie. His imagination was running wild trying to figure out who was screaming in the house at night, and I sympathized greatly with him. Begrudgingly I continued the movie pausing often for some really honest conversations with him.

The deeper the movie ventured into these themes the deeper our conversations went. And I found myself having a really thick conversation about the providence of God with my non-verbal son. And Malachi listened intently to every word with wonder and such attentiveness.

We talked about the joy the father had when he saw his son walking, and we talked about how Malachi’s own dad would have that same reaction when he gets to see Malachi walk in heaven for the first time.

And while seeing Malachi walk is an exciting thing in heaven, even greater than that will be worshipping our Creator. And the more we talked the more we naturally progressed into me presenting the gospel again to Malachi.

It is easy to focus on all the things we will “get” in heaven. New bodies, a place prepared for us, crowns, etc.

But the words of Charles Spurgeon say it best, “The very glory of heaven is that we shall see him, that same Christ who once died upon Calvary’s cross, that we shall fall down, and worship at his feet, nay more, that he shall kiss us with the kisses of his mouth, and welcome us to dwell with him forever.”

After we finished the movie Malachi and I laid in bed and talked about the word “hope”. Sometimes I forget the power of that word. I treat it as a wish towards something. But the hope that the Bible talks about is a product of hardships and does not disappoint.

Romans 5:3-5 “And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance, and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.

Whew. All that from The Secret Garden.

I am not sure what you may be able to pull out of tonight’s ramblings that encourage you in your own walk with the Lord, but I trust that He will show you something you need to hear.

Please continue to be in prayer for our insurance struggles. We have met with the state waiver people for round one of interviews while we are awaiting our court date for the insurance termination. It has not been an easy battle and it is wearing me down.

And please continue to pray health over my family.

Much love,

Leah

Let’s start this blog with a pretty cool God story.

As you already know we are struggling with insurance battles right now- and those battles still continue. We are waiting on our court hearing and an additional meeting with someone within the state waiver program this week. But in the meantime we have been able to get a grant to help with specialized equipment that insurance does not cover.

In most of the home photos I post of Malachi he is in a blanket covered chair called a “Chill Out Chair”. We purchased this in 2019 and it has been through the ringer. The zippers have broken and the cover is being held on by some snaps I added. A few years ago I priced out a replacement cover from the company and it was $800 so we decided to just rig it up and make it work.

Insurance sees items like these as “comfort items” and therefore “not medically necessary” and does not pay for them, but Malachi’s head is reaching the top of this one and it is getting a little unsteady the longer his body grows. After lots of contemplation we decided to use this year’s grant money to get him the next size up.

I quoted out the new chair online and with all the items he would need the cost was over $4,000. The grant we have for him covers $2,000 but that is still a lot of out of pocket!

I called the company and asked them if they happened to have any demo models, or chairs that have been used at conventions for users to try. The company rep said “actually, I have one demo model we have been talking about selling! It is a size medium.” Which is the size we need for Malachi. I asked her to tell me more about the chair and she went on to list the things it would come with…and unbeknownst to her it was all the EXACT things we had set up on our quote, and even a few more bonus things!

Even the color and fabric of the demo model is the exact one I chose online for the quote.

I was trying to not get my hopes up too high as it sounded too good to be true. I asked her about the cost and her response made me laugh out loud. She said “How about $1,950?”

And all I could think in that moment is Ephesians 3:20 “Now to Him who is able to do immeasurably more than all we ask or imagine according to His power that is at work within us, to Him be glory….”

What a beautiful Ephesians 3:20 moment. To see God not only provide the basics but immeasurably more. So Malachi will get his new comfy chair in about a month and each time we put him in it I will be reminded of God’s faithfulness in even the little things.

Malachi is growing physically and cognitively. The last two weeks we have seen so many smiles and opinions out of him. It has brought me so much encouragement to see him so joyful.

Malachi’s new favorite show is Fear Factor and when he hears the theme song he starts giggling. We start every episode letting each family member choose one boy and one girl they think will win. Malachi won’t vote until everyone else finishes their picks, and he will often sign to choose the ones that no one else chooses. He wants to be different than everyone else.

As we watch the episode I narrate each challenge and his excitement and adrenaline is absolutely amazing. I can’t handle watching the parts where they make contestants eat gross things so we fast forward those, but he is a sucker for all the snake/spider/scorpion challenges. I filmed a little video to share with you so you can see how much he enjoys the drama of it all.

His response time with his signs and his vocalizations has improved so much in the last two months. Last week he signed that I was annoying when I was reciting the lines to the Princess Bride. Stinker.

We spent some time last weekend at the new inclusive park in a nearby town. The boys got to try the zip line, wheelchair accessible merry go round, swings, and a few other fun wheelchair friendly features.

We have been spending a refreshing amount of time together as a family at home, keeping our social calendar pretty empty. It has been a good reset for our family.

Levi’s glasses came in this week and he managed to lose them within 48 hours. But we found them again and all is well.

Levi’s fine motor skills are improving thanks to some pretty amazing teachers. He loves school so much and we are thrilled with the opportunity to find a place that can give him the focused attention that he needs.

Levi turns 6 on Tuesday! And oh what an adventure it has been!

Levi has a love for others that is beautiful to watch. And his love for Malachi brings tears to my eyes often. Lately he has been telling me about his big plan to build a little house for Malachi and him to move into and get our friend to put a ramp on it so he can push Malachi in all by himself. He says they are going to stay up late and watch movies and that I can come and visit.

Then after a few minutes of processing his grand plan he always says “Actually, can we just live here with you guys?” But that boy can dream up a pretty good plan! And Malachi loves listening in on all the schemes.

Levi’s brain amazes me and he can remember details from things that happened years ago. He makes people feel so special with the things he has retained from their past conversations. He is an empath and feels BIG emotions…and I love his big heart.

Life with Levi has been a journey. I met Levi on a camera screen before I got to see him face to face; I had to be put under general anesthesia for his birth. And when I saw this photo my heart fluttered with pride and joy. My eyes saw past all the tubes and wires and saw that healthy, pink skin and peace washed over me.

The first five months we chased miracles, medical interventions, and the best doctors for his unique diagnosis. We walked in fragility, navigating new battles each day.

But that special little boy kept smiling.

Before Levi was born I chose a verse for him.

Numbers 6:24-26 “The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace.”

I prayed that Levi would reflect the light of the Lord in his life. And when I look at little Levi’s testimony I can’t help but see the reflection of God’s goodness and love in all the pieces of his story.

This week I am thankful for the many testimonies God has given our family. He has made it easy to share our faith with others and to tell of His greatness.

When we did Levi’s big airway reconstruction at 4 months old we were told that he would never be able to speak. And we mourned greatly over that loss. But God.

And that has been a theme in Levi’s 6 years. But God.

And now that beautiful voice can loudly sing “This is my story, this is my song, praising my Savior all the day long.”

Much love,

Leah