Let me start this entry with an adorable photo from two September’s ago…
We were able to pack so much into this past week! Soccer games, therapies, a yard sale, a wedding shower,3 services at church, house cleaning, and so much more. Here is a cute photo from Malachi’s music class on Tuesday…his buddy was helping push his chair around. The quality is very poor but cute nonetheless!
One of the highlights from the week was having the opportunity to share Malachi’s story at a United Way fundraising event! It was incredibly difficult to talk about Malachi’s rough start without mentioning God (this was a secular event), so it was strictly facts. As I wrote out my speech I had to dig through his old journals and make sure to get my weights and dates right. Here are a few stats that blew my mind again haha.
- Malachi was just 1 pound 12 ounces when he was born. Unbelievable.
- Malachi was 2 pounds 10 ounces when he underwent his first brain surgery (and had already had two other surgeries that were not related to his brain).
- Malachi was just over 5 pounds when he had his second brain surgery.
This fundraising event was focusing on some of the donors the United Way sends funds to, which just so happens to include the Boehm Birth Defects Center (Malachi’s neurosurgeon group). I was able to share about all the ways they have reached out to our family during our hospital stays, bringing us meal vouchers and gas cards so Jake could still go back and forth to work. There are so many amazing organizations out there willing to help local families like ours. When you have jumped in the car and raced to the ER with a very sick kid and end up in the ICU for days, meal vouchers are such a kind gesture.
Reminiscing about the night Malachi was born always makes my stomach turn. In fact, we had to drive by the hospital last week to go to a soccer game. I have to mentally block out the hospital and Ronald McDonald House as I drive by it, and this trip was no exception. I turned the corner and breathed a sigh of relief only to have an ambulance pull out in front of me. Seeing the back of that ambulance immediately took me back to Malachi’s NICU days, having to watch as he loaded and left in an ambulance without me, headed to Nashville for eye appointments. Seeing the back of that truck made my blood run cold (a real thing for the record). I keep thinking that time will take away these negative thoughts but in reality they almost seem to be getting worse.
Speaking of organizations that help families like ours, after HOURS of paperwork and applications I did hear back from another local organization telling me we were chosen to receive a grant for equipment. I was able to order a twin bed (with special rails and a trundle option for sick nights so I can be close), a base for his shower chair so I don’t have to bend over as much, and some switch toys for Malachi.
Here is a stock photo of Malachi’s twin bed:
Switches are ridiculously expensive, so I was absolutely thrilled to be able to get some for him. If you have no clue what I am talking about, let me give you a brief explanation! Children like Malachi lack the fine motor skills to independently play with toys. Switch operated toys have a plug in for a special button that Malachi can swing and hit, which will then activate the toy. Toys that work on switches are usually over $200 each, and the switch itself is another significant cost, but they are universal so once you have one you are set. We have been working with Malachi to operate a two-button recordable switch, where I can record a phrase into each one to help him communicate. With this grant we were able to get a four-button recordable switch (over $300)!! The gear started coming in the mail this week and every time a package came it felt like Christmas morning!
I recorded a short video to help you see how we are able to use these switches to communicate and give Malachi some independence. He was so proud of himself:
Jake and I are still plugging away at the house, trying to get it ready to be listed. With our busy schedule, the process is painfully slow but we are making progress! We were able to have a big yard sale this weekend and clear out some clutter. We also think we have officially found “the” houseplan for Malachi, taking all of our criteria into consideration. I figured it might be fun to share it with you and help you follow our train of thought. Disclaimer: we are still actively looking at plans, so this may not be the final one. You know how fickle women can be.
Of course, it will be completely transformed into a Malachi home, meaning the “Dining” room will become a therapy space for Malachi, and the “Study” would be Malachi’s bedroom…it has to be close proximity to the master so we can run in quickly for seizures at night. We will also be looking at making major changes in door and hallway widths, as well as making the bathrooms a little larger to accommodate his chair. The garage will most likely be cut down, and will have to include a ramp. And we will be making as many cuts as possible to keep it affordable, allowing us to spend our money for the “musts” for his comfort. But the idea is WIDE open and close together. We are loving how there are so many access points to the main areas so Malachi can be wheeled in one place and wheeled out another.
So, now on to other topics. This week has been an exceptionally dramatic one in so many ways. Early this week I was involved in a situation with an angry soccer parent. As the conversation grew heated, I found that every ounce in my body wanted to engage in the yelling. Every ounce of me wanted to take all the bottled up rage I have stockpiled from sleepless nights with Malachi and aim it at this human target, unleashing my fury in the same manner that was being done to me. But in the deepest part of my soul was a voice telling me “Be like Christ.” As difficult as it was, I simply took a deep breath and listened. And I can’t even put into words how hard it was to do that. It went against my nature.
As I got in the car, I started thinking about all the things I had really wanted to say. I wanted to fight back. I wanted to defend myself. But I couldn’t stop thinking about Christ. I thought about that moment in the garden when he was arrested, and how he remained a peacemaker, even healing an arresting soldier’s ear.
That altercation was an eye opening reminder to me about how difficult it is to be a Christian. Sometimes the things we are asked to do go COMPLETELY against our nature. I witnessed a battle between worldy Leah and the daughter-of-the-King Leah. And it was pretty intense. And I came very close to losing the battle and engaging.
In the aftermath, I find myself having lots of moments throughout my day riddled with bitterness. All week long I have struggled with the frustration that not only do we deal with Malachi stress, sleepless nights, and so many other unusual battles, but this week I had to sit back and watch an attempt to assassinate my character. I truly feel under attack by the devil this week as he is trying to shake my spirit. I have watched those seeds of bitterness start to take root and invade my thoughts. This is something I have had to pray heavily about.
A few days later I had one of my players come up to me and tell me that her family had witnessed the incident, and when they got into the car her dad told her “You know, I am very proud of Leah. That dad was in her face, yelling at her and waving his finger and she didn’t react like most people would. She just acknowledged his frustration but didn’t react. That must have been hard to do.”
When she told me this, I thanked the Lord for the self control he gave me in that moment…a self control that was clearly not something I had in me apart from Christ. And I was reminded that sometimes we are called to do things, not so much for our own benefit, but for the benefit of others. We are the light of the world, we are the salt of the earth. While we cannot ever achieve the level of Christ, we are called to strive to walk as he did, including becoming a peacemaker. That altercation may have simply occurred for someone else’s benefit…and please, oh please, do not perceive this as me patting myself on the back. On the contrary, I am embarrassed by some of the thoughts I have had this week toward others involved. That is something the Lord and I are working through.
In an unrelated note, Jake and I were driving this week and talking about the things we were going to sell in our yard sale. As we went down the list, we couldn’t help but recognize the many ways in which God has provided for EACH AND EVERY need in our lives. Psalms tells us: “The Lord is my shepherd, I shall not want…” and I can attest to that scripture. We laughed as we reminisced about the blessings that He has prepared for us over the years- most of them even before the need was evident! Story after story, item after item, we have seen God’s hand in our life. God has been so good to our family.
One of the new verses that I have chosen to live by comes from Matthew 6:34 “So don’t be anxious about tomorrow, God will take care of your tomorrow too. Live one day at a time.”
There is power in those words. Read them again!
So we will try our best to do just that- live one day at a time, relying on God to make our tomorrow exactly as He sees fit.
Off to bed! Thank you for sticking with me through this lengthy entry.
God bless you,
Jake, Leah, and Malachi