I used to be a goal setter. I thrived with goals, setting challenges that were beyond my reach and taking great delight in achieving them. I would write the goals in journals, put them on sticky notes around my room, and stay up until 5am to knock one out.
I was always up for the challenges life threw at me…maintaining a high GPA in the midst of a tough college course…working three jobs while taking 21 hours a semester…succeeding at something no one thought would be possible fueled me.
As life progressed I realized that the things that I saw as challenges were things that could be achieved with a lot of hard work and a whole lot of determination.
Unfortunately that doesn’t transfer over to the special needs world. It takes hard work and determination, but it still isn’t quite enough. It will never truly be enough.
I have had to realize that some goals will never be achieved. I am unable to heal my children. And I have lost complete control of our day to day. And that is a very hard thing for me to accept.
I am at a phase in life where setting goals seems to do more damage than good. There are the obvious complex goals that are beyond my reach, but then there are the simple ones that require routines that we can’t afford to manufacture. We are still very much living in a survival mode mindset, unsure of what each day will bring with the boys. And those sticky notes no longer challenge me, but rather they taunt me.
We live day to day, hour by hour, and try to do all that we can to obey the calling God has in our lives. And the lack of control is something I daily struggle with, but I am learning to lean on God in those control freak moments.
We have learned to simply walk and look for the doors along the way that are opened by God for us to venture through. It has made me really process how God feels about us setting goals. I don’t have any feedback on that one, but maybe it will give you something to mentally munch on this week. I don’t believe that they are inherently bad, but I wonder if they do more harm or good to our faith walk.
We have watched Proverbs 16:9 come to life for us: “The mind of a person plans his way, but the Lord directs his steps.”
Why the long intro?
As I sat here and reflected on our week I found myself feeling so mediocre as a mother. We haven’t had any earth shattering moments. We haven’t had days filled with adventures and fun. We haven’t met milestone that I am excited to share with you.
But we have spent so much time together as a family. We have served in the name of Christ, giving energy we didn’t have because God called us to. We have made our boys laugh until they can’t breathe.
And even though we didn’t meet goals I feel like we accomplished some pretty immeasurable things.
And we also celebrated another wedding anniversary! Jake and I have been married for 13 wonderful years. We dated for 5 years before getting married so life with Jake is all I know. It has been so special to watch us grow as individuals and also grow as a couple in Christ.
These two little lovebirds back in 2003. This was the first photo I ever got of Jake.
Jake and I were able to sneak away kid free for dinner and a movie on our anniversary! These moments are rare and we definitely cherished our time together.
And on a silly note, we aren’t normally trendy people but I saw this one online and thought I would give it a try. It is an app that allows you to change yourself into a cartoon. They turned out pretty cute.
I do have some prayer needs this week.
-Levi’s surgery is less than two weeks away. I always get a little anxious leading up to surgery, worried they will find a reason to start the trach talk again. We went on lots of walks this week and his stridor was definitely significant after a few minutes of physical activity. Levi is also very anxious and remembers the Covid test from last year (which he will have to have again). So all kinds of prayers needed over that situation.
-I have been going through some spiritual refinement this week as God has been highlighting some areas that I need His help on. While refinement is ultimately a good thing it does require moments of discomfort and this week I have been extra sensitive to those. Please pray for guidance from God and obedience from Leah.
-Please pray for our endurance. I am physically, emotionally, and mentally exhausted. It is one of those exhaustions that taking naps or sleeping in can’t fix- this renewal has to come from God. Please join us in praying for that renewal.
I know this was an unconventional blog, but I needed a place to drop some thoughts! Thank you for taking the time to check in on our family, and tonight I will be praying Numbers 6:24-26 over you.
We spent the first official week of summer running some much needed errands, taking some much needed long naps, and soaking in the family time. Each day we played a family game together and watching the competitive spirit that seems to be innate in my boys is fascinating to me. They come by it honestly as Jake and I are both incredibly competitive, but interestingly enough Malachi seems to be pretty savage when it comes to games.
Levi is a phone thief and takes dozens of photos a day before I can snag it back. He took this one and it had a certain artistic flair to it.
Malachi and I headed to the hospital this week for a routine visit with his neurosurgeon. Malachi has had the same wheelchair for nearly 6 years and is about to outgrow it, but getting a new one is quite the tedious task. From start to finish it takes about 4 months to receive so we decided we needed to start the process now. In order to even get an appointment with the wheelchair company we have to have appointment notes saying that a medical professional suggests a new chair. His neurosurgeon clinic has an amazing setup for helping jump through the insurance hoops for equipment so we decided to go ahead and try through that specialist.
Malachi will need to do an MRI to check his shunt function in the next year, but for now everyone on his team feels confident that his shunt in functioning as it should. On that note, we are truly blessed in that area. Many shunts malfunction or fail within the first 3 years but Malachi has had his for 8 years now without any issues. Praise the Lord for the small blessings we are able to spot within this complicated life. Just in case we have new readers, Malachi had grade 4 brain bleeds at birth that blocked the ventricles from being able to release spinal fluid. The fluid goes in but cannot find its way out on its own. They placed a shunt (a machine under his scalp in the back of his head with a small tube that enters the ventricles) to move the spinal fluid from the ventricles and down into his body cavity. It is programmed with a magnet so they don’t have to go into the scalp again each time it needs to be adjusted. It is actually pretty impressive technology.
As I drove to the appointment I flashed back to a conversation in the NICU with this same neurosurgeon before we placed the shunt. For Malachi the shunt was necessary, but we discussed the pros and cons of one so I could feel like my decision was an educated one. I remember leaving that conversation feeling disappointed because he told me Malachi wouldn’t be able to play contact sports with a shunt. As odd as it sounds, this was one of my first losses of normal. I mourned over this, not having any idea of the severity of what our journey with disability would hold. As I flashed back to that I prayed to God and thanked Him for unveiling his plan for Malachi just a little at a time. It allowed my faith the build muscles before the true workouts began.
The boys spent some time with cousins and friends this week and even got to partake in a big water balloon fight. Little Levi definitely didn’t understand the process and kept tossing them onto the ground to watch them explode. Malachi threw sniper shots from the deck at his unsuspecting cousins, giggling each time he made contact with one of them.
Levi made some big steps this week at church and starting attending children’s church without mom and dad! Jake and I are splitting the youth group for Wednesday nights now (he is teaching the high schoolers and I am taking the middle school class) and being able to focus on the lessons without a three year old in the room is so refreshing.
Levi is talking so much more and listening to him is proving to be one of my favorite parts of the day. There is something so special about being able to have a conversation with your child. Malachi can definitely converse in his own way with his signs, but the creativity in Levi’s stories blesses my heart.
If you look hard enough at that picture you will note some interesting things. Yes, there are three puppies in that photo. We did some dog sitting this week for one of the puppies sisters. When you daily live in chaos, adding one more element to the mix doesn’t impact too much! Levi is also in that photo. The boys love to wrestle with Jake, and getting Malachi in a spot where he can safely participate is a fun challenge.
This week I talked with some of my coworkers at the church about the difference between activity and productivity. In a ministry setting I have an easier time distinguishing between the two. But in a motherhood setting that line gets a bit blurred. My days are JAM PACKED with activity, but at the end of each day I can’t spot a lot of productivity from the day. This is extremely hard for me. I am a mover and a doer. But in the role that I am in as caregiver and mother I am not able to be as productive as I would like. Some days simply keeping my kids alive and breathing is all I can accomplish. Other days, three loads of laundry is all I can knock out.
I have started to see that I have spent far too long placing my self worth in my productivity. Motherhood asks us to make so many sacrifices, and sacrificing my productivity is one of them.
Motherhood is a lot about activity. Sometimes it is about being present and helping littles ones be productive….helping them grow physically, grow mentally, and turn into beautiful souls.
And I am learning that the seasons of motherhood change more quickly than the earthly ones do.
But I have also realized something else this week. It is in this season of activity without much productivity that I am able to dwell more on God. I often get so wrapped up in my busyness that I am unable to mentally focus on my walk with the Lord.
In Psalm 46 we find a verse that is very simple yet profound: “He says ‘Be still, and know that I am God;’ “
I have always read this verse in the context of the verses around it, meaning that we need to trust that God will fight our battles for us (read Exodus 14 this week for a GREAT devotional thought along that line and ask God to speak to you through it). But when I apply it to my life right now I see God reminding me that it is in the still moments that I allow my eyes to search for Him.
When I put my self worth into productivity I deplete myself, leaving scraps of energy for time with the Lord. Sometimes we need those quiet, reflective moments to help us remember that our self worth in Christ is just as meaningful in the quietness of life.
It is in these moments that I remember that God doesn’t NEED me. I need Him. And while my productivity can most definitely impact the Kingdom of God in a mighty way, God can produce an even greater crop from a mustard seed that I don’t spend hours cultivating.
This week I am trusting that God is honored in my moments of activity, as my heart desires that even these moments bring great glory to His name.
And I am so, so thankful for His grace.
Please continue to pray over Malachi’s ability to rest. He is staying up until 3am each night and back at it around 8 each morning and his body and brain need more rest. Also please cover Levi in prayer as his Cincinnati surgery is less than 3 weeks away.
Jake is officially off for the summer, and I don’t know that you will find a happier wife in the whole state of Tennessee. Having an extra set of hands to help with the boy’s needs is such a gift. It also allows me the freedom to take each boy individually to their appointments and focus. Our summer is packed full with medical appointments but sharing that burden with Jake makes it manageable.
So what is on the summer horizon for the Carrolls?
We have a surgery for Levi in Cincinnati in about 4 weeks. Right now the plan is for he and I to go solo like last year. Traveling with both boys is getting increasingly more difficult the larger each of them get and Covid precautions are still hindering visitation policies when one of the boys has to be in the hospital.
Our annual church youth camp is coming in early July, which is always a fun adventure. This year we have 48 teens signed up to go, praise the Lord!
Malachi’s big Vanderbilt trip to meet with the orthopedic and spine surgeons will happen at the end of July. This has been stretched out to a multi-day trip to meet with all of the specialists.
We have some family adventures tucked into the gaps, and all of our regular appointments and therapies sprinkled in the mix.
We got a head start on the adventures this week as we drove to Georgia to meet up one of my siblings and his family for the weekend. The boys loved the cousin time and got to meet their newest cousin for the first time. We try to be extra cautious about posting photos of others on the blog (for privacy purposes) but these were too sweet to not share.
As I have mentioned, Malachi is tuned in to EVERYTHING happening around him and so making sure to include him in as much as possible is still one of our top priorities. But to be transparent, it is shockingly exhausting and physically taxing to try to successfully be the body of an 8 year old. I catch myself thinking about the days in the future that I won’t be able to physically help him feel included and I wonder how that is going to change our outing decisions as a family.
But for this trip Malachi zoomed down the slides, chased cousins like monsters, crouched in corners playing hide and seek, and went as high as safely possible on the swing set.
We had enough room in the house to divide into two bedrooms, making nighttime more manageable. Being out of our routine and environment is so, so difficult!
But sometimes Pros and Cons Lists shouldn’t always drive decisions.
There may be some times in life when the cons of something will far outweigh the pros. And even though logically it doesn’t make sense to go for it, sometimes you simply have to commit to the illogical route.
Yes, there are consequences and discomfort, but fear of those should never be the reason that we don’t take time to intentionally love others.
If I am being completely transparent I will also note that I don’t have much energy or stamina for these “cons” heavy trips and excursions. Malachi did not sleep well, and we had at least 6 close calls in two nights with pillows that were too fluffy. I ended up swapping them for rolled up bath towels so he wouldn’t be able to suffocate himself. Waking up to him gasping for air is forever one of the most terrifying things.
We will spend the next week recovering from our two nights away, but I am grateful for the memories and the opportunity to see my brother!
Here are some photos from horse therapy this week. Levi got to practice painting the horse and giving him a bath after.
On Wednesday I finished a study with the youth about Jesus’ Sermon on the Mount found in Matthew 5-7. If you haven’t taken time to read that in awhile I want to encourage you to start to read it again this week, even if it is just a few verses each night. There is so much power in the words knowing that they came from the mouth of Christ and the heart of God.
Matthew 7:13-14 “Enter through the narrow gate. For wide is the gate and broad is the road that leads to destruction, and many enter through it. But small is the gate and narrow is the road that leads to life, and only few find it.”
This verse has challenged my heart this week about the intentional nature of my walk with God. We are all given the opportunity to choose the road we will walk on in our faith. We will never “accidentally” find ourselves on a narrow road that requires a Guide for us to shadow step by step.
Sometimes I catch myself going on auto-pilot in my relationship with God. Instead of focusing on keeping my steps in line with His I find that I am aimlessly following the muscle memory of my shuffling feet on that narrow road.
One of the devil’s tactics is pushing our faith to become a chore rather than an intentional journey, which is not God honoring. Before we even realize it we migrate over to the wide road and confuse our movement for steps in our faith walk.
This week I have been evaluating and praying about what my reset needs to look like. The word “intentional” keeps being placed on my heart so I know that is something that God desires to bring to my attention.
Is your walk with God an intentional one? Are you content on the narrow road that faith in God requires?
So many thoughts swirling in this brain of mine, but I need to develop them a bit more before I share them with you! Thank you for taking time to check in on our family. We continue to ask for your prayers- there are specific needs of course but a good summary prayer need is wisdom and strength for each new day.
This week was a beautiful one and we spent the majority of our time outside soaking up the fresh air and doing some spring cleaning.
Malachi has had an exceptional week and his seizures have been very controlled. We are continuing to tweak his medication to find that perfect balance. He is still not sleeping well, but as long as those nasty seizures are at bay we are happy. He has been filled with giggles this week.
Jake teaches math at the local high school and does a project each year called the “Redneck Regatta”. The students build boats out of cardboard using the buoyancy formula and have to successfully float it 300 yards to get a passing grade. Each year I like to take the kids to the river to watch the final products attempt to float. Covid prevented us from doing it last year, so this was the first year Levi was mobile. Thankfully he had a healthy fear of the river and stayed right by my side! Chasing him down while holding Malachi is getting complicated.
Malachi looks forward to this day each year. He loves to hear the students squeal when their boats start to sink. Look at all those summertime freckles making their appearance!
The boys are still doing hippotherapy sessions each week (physical therapy on horseback) and we get to meet new special friends there often. I love watching Levi interact with other children with disabilities. His sweet little mind doesn’t see differences and it is something I treasure.
I snapped this picture as one of the other students was getting on a horse for the first time ever. Levi was ecstatic for him, cheering him on from the sideline. He truly has a special heart.
I have been taking both dogs to the barn with us each week to try to continue with their training out in public. They are doing amazing and mind their manners for the hour that we are there.
Confessions of a Special Needs Mom: Burnout is a very real thing.
If you have been a long-time blog reader I am sure you have been able to pick up on the fact that I am a professional overthinker. I can rabbit trail just about any small tidbit or topic and take it a million directions in the deep recesses of my mind. Caring for Malachi often means I have to be awake 20 hours a day and I am often on the verge of exhaustion. I lean heavily on overthinking in these moments to give my mind something to munch on to help me stay awake.
A few weeks ago I noticed the starter pieces of a nest on one of the columns on the front porch. Over the next few days the nest continued to grow larger and stronger and pretty soon it was full of eggs with a very anxious momma bird sitting on top of them. Her instincts kicked in and day after day she sat on that nest.
Those eggs hatched and I smiled when I first saw those bare necked babies popping up inside of it. I had a momentarily lapse of excitement as I flashed back to previous years and some of the babies falling out of a similar nest and passing away. But each week these newest additions grew stronger and fluffier, and more importantly they stayed in that nest. Watching them became a hobby. I would crack the window open so I could hear them chirping with excitement when momma came with a fresh worm.
And then one day I woke up and they were gone. They had finally grown strong enough to leave the nest and start their new lives on their own. And as they each moved on to the next phase of life, so did that momma bird.
Every day I walk past that nest and every day my overthinking kicks into high gear. And for the first time ever in my life….I was jealous of that momma bird.
It sounds so foolish to say that.
Each day I pass that empty nest and I think of how it represented a snapshot in that momma bird’s life. It has become a memory for her…all the worm hunting, the nest sitting, anxiously watching for predators.
The empty nest represents a milestone that has been achieved by not only the baby birds but also their momma.
What a challenging an exhausting period of life new mother’s go through, whether animal or human. But, oh how exhausting is the life of limited milestones.
But I also fully understand that an empty nest represents a horrifying alternative in our life with Malachi. I find myself feeling guilty for even desiring the moments of encouragement I see other mothers enjoying as they walk the path of typical motherhood.
I guess you could say I am having a Psalm 73:26 “flesh and heart fail” moment.
”My flesh and heart may fail, but God is the strength of my heart and my portion forever.”
My flesh and my heart fail often. They wage attack against the plans God has for me, especially when they don’t match my dreams and selfish desires.
But we were never meant to be sustained by milestones. Or fulfilled dreams. Or reached goals. Those things aren’t bad, but when they will only sustain us for a short time.
God is our portion- He alone is the source of our happiness and our blessings. He alone is enough.
We are created to be sustained by God and God alone.
When I find that I am reaching burnout phase I have to come to realize that it is because I have looked for markers of success rather than looking to Christ to fuel me.
Can any of you relate to this? Why are we continually surprised to see our heart and flesh fail over and over and over again?
This week I am praying for a strengthening from the Lord to help me find the beauty of the nest God has placed me in charge of. I pray that He continues to protect my babies and continues to embrace me when I need that renewing that can only come from Him.
Please be in prayer for Malachi’s sleep habits. His little body needs rest but his brain says no.
When Malachi was younger our days were filled with a ridiculous amount of appointments. We usually had to be at the hospital by 8am and went strong until dinner time. Our record is 27 appointments in one week! The amount of planning and preparation that each day required was indescribable.
Adding Levi into the mix amplified and multiplied those days of chaos but then COVID entered the picture. We finally got the breather that we needed from all the go-go-go and thoroughly enjoyed our time at the house. Our virtual appointments are slowly transitioning back into in-person ones and I am realizing that I am mentally out of shape as far as appointment days are concerned.
This week we tackled some biggies, the most noteworthy being a trip to the dentist. This was Levi’s first time there as a patient and the anxiety has been running strong for three weeks. He has been waking up in a cold sweat yelling “no dentist” and crying inconsolably. He mentioned the dentist and cried over it no less than 6 times each day. We have watched every Sesame Street, Daniel Tiger, Dora, etc show about visits to the dentist and spent time watching YouTube videos of other children at their first appointments but nothing could squash the anxiety. When the day finally came and he realized where we were going the meltdown began.
In his world he has had to do a lot of hard things. He is one smart boy and understands that any place with a waiting room and people in scrubs will likely result in his discomfort. It breaks my heart that he has had to experience so much physical pain in his life. I bargained with him in the car and told him if he could go the entire appointment without crying I would go through a drive through and get him anything he wanted. He perked up at this prospect and thought for a few seconds until making his decision: “a kids ice water”. There is something about cups that are kid sized that bring him so much joy. I’d say I got the better end of the deal on that one!
The staff there did such an excellent job easing into the appointment and we were able to make some baby steps towards an actual cleaning. Malachi was next on the table and wanted to impress his brother, allowing them to do a 15 minute cleaning! This is huge for him and his gag reflex.
We went from that appointment over to the vet’s office to get the pups checked out. The lady walked in and looked from the wheelchair to Levi then to the puppies and said “You’re CRAZY!”
And she isn’t lying. I recognize the chaos and most of the time I can’t help but laugh. Side note- they were mesmerized at how well the dogs were behaving. Getting these pups has truly been a God orchestrated gift.
Whenever we ask the dogs to sit and stay Levi does it too. We don’t tell him to but we also don’t discourage it…
Little Levi is such a blessing, but oh how quickly he can deplete my energy. His mind works at an insanely fast rate and keeping up with him is continuing to challenge me in so many ways.
I took a video of him this week on the playground as I wanted to capture his work of breathing to show the surgeons in Cincinnati next month. You can definitely hear his stridor when he is focusing on a physical task. The day after this video he started signs of a cold or severe allergies and struggled throughout the nights with his ease of breathing and his ability to handle his feeds. When he has any postnasal drip it tends to gag him and make him vomit.
Malachi also started the same congestion, progressively growing worse as the week went by. We went into medical mode, checking oxygen saturations and keeping both boys medicated and hydrated. Malachi cannot handle any postnasal drip at all and it sets off his seizures. Friday morning he had at least 20 seizures before lunchtime and Saturday he had dozens more. These days are so hard on his body and his emotions. I can feel my heart breaking each time he starts another one, and I have to mentally detach myself as mom and go into nurse mode to try to fix it. But even then, seizures never get any easier to witness.
We try to lift his spirits by making up games like “sock ball”. He is extremely competitive, just like his mom and dad, and loves trying to beat Levi at things. We also watched a lot of movies. I know I have mentioned this before, but because of his vision loss we narrate a new movie to him one time through. While we were watching The Fox and the Hound this week he was very much engaged in the narration so I would narrate a scene, then rewind it so he could hear it again. I filmed a chunk because it shows you so much of Malachi’s sweet 8 year old personality.
Confessions of a Special Needs Mom: Watching continual, daily suffering has challenged my faith more than experiencing it myself.
I am a fixer. I like to look at a problem and find the ways I can change it for the better.
But I haven’t been able to fix my children. I haven’t been able to come up with a solution for me to take the burden of suffering from their shoulders and onto mine. And for some reason, as foolish as it may sound, I feel a bit like a failure as a mom because of my inability to “fix” things for them.
I read something this week that spoke to my heart and I felt the need to share it with you all.
“I would have pulled Joseph out. Out of that pit. Out of that prison. Out of that pain. And I would have cheated nations out of the one God would use to deliver them from famine.
I would have pulled David out. Out of Saul’s spear-throwing presence. Out of the caves he hid in. Out of the pain of rejection. And I would have cheated Israel out of a God-hearted king.
I would have pulled Esther out. Out of being snatched from her only family. Out of being placed in a position she never asked for. Out of the path of a vicious, power-hungry foe. And I would have cheated a people out of the woman God would use to save their very lives.
And I would have pulled Jesus off. Off of the cross. Off of the road that led to suffering and pain. Off of the path that would mean nakedness and beatings, nails and thorns. And I would have cheated the entire world out of a Savior. Out of salvation. Out of an eternity filled with no more suffering and no more pain.
And oh friend. I want to pull you out. I want to change your path. I want to stop your pain. But right now I know I would be wrong…. I would be cheating you and cheating the world out of so much good. Because God knows the good this pain will produce. He knows the beauty that this will grow. He’s watching over you and keeping you even in the midst of this. And He’s promising that you can trust Him. Even when it feels like more than you can bear.”
ATTRIBUTED TO KIMBERLY HENDERSON OF PROV. 31 MINISTRIES ON VARIOUS WEBSITES.
Our minds have equated suffering with punishment and consequence. It becomes something that we believe we bring upon ourselves. So when we see it happening to precious, innocent children it just seems to go against the vision of the loving God we create in our minds.
But I don’t believe that is how God intended suffering to be. In the Bible suffering is a catalyst for growth, not death.
The moments where we see suffering God sees the next step in His greater plan.
The Bible tells us in Romans 8:18 “For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.”
I have to believe that the pain my boys have experienced is producing so much good in the kingdom of God.
If we spend less time focusing on the suffering and more time focusing on the crops that we will grow from it, I believe that even watching suffering has the potential to transform our faith and trust in God.
It doesn’t mean we have to like the suffering. But it is an encouragement to embrace the hard things, knowing that they are preparing us (and the ones we love) for future glory.
My eyes keep shutting for several seconds each time I blink and I am afraid I am accidentally going to type something crazy. I am going to take that as my sign to head towards bed!
Thank you for checking in on our family. It is through this very blog that I can sense a purpose in their pain. Thank you for taking the time to walk a mile with my family each week.
We are in a hazy phase of life where I am not ever sure what day it is or what time it is. It is a combination of raising medically complex children but also raising one very active and robust toddler. I thank God often for the “typical” even though in the moment the chaos isn’t always sparking thankful thoughts in me.
Levi is a toddler tornado and loves to capitalize on moments when my focus is elsewhere. He waits until I have to make a phone call to jump in his Power Wheels and head for the tree line. This week he has been grounded from his car, which is a sentence I didn’t think I would ever have to say about my three year old.
The dogs have become his newest focus in life, and bossing them around brings him such delight. I laugh and laugh at the photos I take of them, seeing the “rescue me mom” look in their eyes.
And while Levi produces some big sighs from me throughout the day he also elicits some heart warming moments that I will never forget. Today I sat him up from a diaper change and he unprompted said “Happy Mother’s Day”. It was the sweetest little voice, so I of course made him do it again for the camera so I could hear it again 20 years from now.
As I heard those words roll of his lips I had to keep myself from crying, knowing that when we made the decision for his big vocal cord surgery we were exchanging his voice for his trach free breathing. We grieved over neither of our children being able to speak audible, coherent words and God surprised us all with the most beautiful voice I could imagine. What a true gift those sounds are to a weary momma heart.
We pray for miracles, and that little voice reminds me of the goodness of God.
Malachi has also had a great week, getting to spend a lot of time with his buddies. He even got to drive the neighbors tractor for a bit!
On Thursday night his big seizures sparked again, affirming to us that the new med is building up in his system and proving to be too big a dose. We will continue to tweak and adjust until we find the perfect balance. When he goes into those sessions of large seizures he isn’t able to get more than 3-4 hours of sleep, and lack of sleep is a huge trigger for even more seizures. We get caught in a vicious cycle that takes days to recover from.
One of the pups got a little too excited this week and jumped up to kiss Malachi’s face, nicking his face in the process. Malachi didn’t make a peep about it, excited to get kisses from his buddies.
We have been working with the dogs on going out in public and maintaining their training. We take them one at a time, and Malachi is so much happier with the company it provides him. It is so sweet to watch him put his hand out to reach for them.
This week I had the privilege of speaking at a women’s event at a church in Chattanooga. The theme was “Precious In his Sight” and I was so touched when I showed up and all of the decor was themed around Malachi and Levi. They had printed out over a hundred photos of the boys and used them as the centerpieces, bulletin board, and decor around the church. Everywhere I looked I saw their sweet faces and it was such a blessing to me.
It was so rejuvenating to me to be able to spend time in prayer about what specifically God wanted me to share with this group of women. I crave those moments with God where I can ask Him to guide me and He very clearly does so. It reminds me of the importance of my relationship with God being an intimate one that requires constant communication and connection.
God very specifically led me to talking with this group about how we allow our brokenness to cause us question our usefulness in the kingdom of God.
Psalm 127:3-5 “Behold, children are a gift of the Lord, the fruit of the womb is a reward. Like arrows in the hand of a warrior, so are the children of one’s youth. Blessed is the man whose quiver is full of them; They will not be ashamed when they speak with their enemies in the gate.”
A few years ago I really struggled with this verse; many of you may remember me blogging specifically about this very thing. My arrows look so different than the ones I pictured in my mind. Each surgery, hospitalization, diagnosis has changed them from the “perfect” arrows that this verse conjures up and replaced them with arrows filled with imperfections.
You might also be an imperfect arrow. You may have something in your past, a regret, a broken relationship, a diagnosis that has convinced you that you are too unreliable imperfect to pierce this world for God. But it is those very imperfections that strip us of our pride and allow us to be beautiful, humble instruments for the Lord.
God isn’t looking for the perfect. He is looking for the obedient and the willing.
We foolishly believe that it takes arrows to complete the work of God. But in reality the Bible shows us time and time again that He takes great delight in using the most inconspicuous tools for His greatest victories.
David used a rock to slay a giant.
Joshua’s army used ram’s horns and shouting to take down a kingdom.
Gideon and his 300 men used torches and clay pots to terrify and overcome an army.
How foolish we are to believe that God requires perfect arrows to complete His greatest tasks. And how embarrassing it is that we often use the excuses of being unqualified to not pursue the paths He is calling us to.
I am so honored that God has chosen us to carry such beautifully unique arrows in our quiver. And the piercing that they have already done is such a testament to the power of God.
May we always remain malleable in the hands of the hands of the Potter so that we can become any instrument He calls us to be. And may we desire the same of our children, even when it means they don’t fit the vision we have for their lives.
It is Chick-Fil-A story week! This is the week each year that Malachi’s post from 2017 starts to make its rounds on social media again and we get a stream of visitors to the blog. And each year it reminds me of the gift that Malachi is to our world, even though he cannot say a coherent word.
If you have no idea what I am referring to, here is a link to the video:
And yes, I still cry every time I watch it and hear those sweet encounters. We try to meet up with this family at least once a year and Malachi looks forward to seeing his friends each and every time.
Our encounters with people in public are still very diverse with a lot of children asking questions. Levi has become a buffer in these moments, becoming his brothers voice and making sure people acknowledge Malachi. For example, if someone asks Levi how old he is he will respond “Me three, Malachi eight.”
The biggest change is Malachi’s reaction to those conversations with strangers. Back in 2017 he was just four years old and craved any and interaction. But now that he is a wise and mature 8 year old he has a lot of big boy emotions. He hears and understands the words people speak as well as the undertones used (he especially picks up on disgust or disdain) and he frequently gets his feelings hurt. He has also started rolling his eyes when people talk to him like he is a baby which makes me giggle since mom gets a lot of those eye rolls too.
He is very aware when he isn’t being included in something fun and it has been causing some crocodile tears lately. We find ourselves having to be very selective about the environments we take him into, making sure we aren’t creating those opportunities for exclusion. If we are going to be in a place where he can’t do the same things as his peers we spend the few days leading up to the event preparing him for what he might hear and why he might not get to do things.
This has been one of the hardest things to navigate as Malachi’s mom. I just wish that all of you could get to know Malachi and understand how smart and sensitive he is…he really would change your perspective of children with disabilities if you could take the time to get to know a warrior child like him.
That is a huge reason why I continue the blog each week. While you may not ever get to meet Malachi I want to let you get a glimpse of his world and our prayer is that the nuggets of awareness you can gather from here will help change the future interactions you may have with another child with disabilities.
That being said, let’s talk about this week in the Carroll house. Malachi’s seizures have been so calm this week, back down to his regular 6ish a day. They have all been mild to medium and easy to manage.
The theme of the week has been our new puppies. I am running the risk of becoming “that dog lady” who posts more photos of the dogs than her own children. But I also want to give you a snapshot of how the addition of the two have enriched the lives of the boys so much already.
Malachi’s lap has become the best seat in the house for the puppies when they want to rest. The climb right up on his lap and snuggle, and Malachi has been moving his hands to pet them. Seeing the smile on his face has been so special. We will be taking each individual dog out on various adventures, trying to maintain their training in distraction filled environments and this week we successfully did a trip to the horse barn for therapies and a few soccer games.
Levi has enjoyed bossing the dogs around and turning them into the perfect playmates for him. The dogs have been trained to be submissive so they do whatever he tells them to do. The empowerment this has given Levi is comical and dangerous at the same time.
Here is a sweet video for you:
The two pups are brothers but definitely have distinct differences. Tuck has a more slender build with a longer face and shorter ears. His collar is teal. Shiloh is built to be big like his daddy, and has very big ears and lots of saggy wrinkles on his forehead. He has a pink collar now but will have a burgundy one by the end of the week.
We definitely have no regrets adding this chaos into our lives. It keeps Levi entertained and occupied and Malachi is so engaged listening to them run around the house and loves their frequent visits to cuddle or kiss his face. And the added bonus is that both of our neighbors have had bear visits this week but we have not! I think the dogs are keeping the bears from wandering to the front porch, which is the favorite bear hangout in the neighborhood.
I am always challenged each year on this specific week to write something God inspired since we get so many new readers through the Facebook post. It is a task I do not take lightly, as I recognize the opportunity to introduce you to my God.
Confession of a Special Needs Mom: For every moment that makes me smile each day, there is a moment that takes me to a dark place.
This life is such a unique blend of pure joy and heartache. And it swings from one end of the pendulum shockingly fast.
I have been trying to organize closets this week and opened Malachi’s clothes from when he was Levi’s current size. Inside that box was a stack of onesies that can fit a 4 year old. I remember packing that box and saying to myself “I won’t ever need these again!”
But as I opened the box and spotted the stack I had this sinking realization in the pit of my stomach that they would fit Levi perfectly as he is about to outgrow his other special onesies (they keep him from messing with his g-tube). Each time I have laid hands on these onesies in the last week I catch my heart leaning toward mourning. Every time I spot Levi running around in one I can’t help but desire a different life for my sons.
Why weren’t they able to have a chance at typical? Why weren’t we able to have a child that didn’t struggle with cerebral palsy, g-tubes, brain damage, surgeries?
I don’t know that I will ever get to a point where I don’t have these questions swirling in my mind. I don’t think that a wound can ever heal when it is continually ripped back open each day.
And it is incredibly easy to get stuck in this mindset and head down that dark road of bitterness. Those paths to bitterness likely exist in your life too, but with different triggers. It could be an unanswered prayer, a regret, a broken relationship, an unfulfilled dream. When you dwell on those things it is very hard to change your focus to anything else.
But that is where my God comes in. I can get pretty far down my bitterness path without even realizing it, and my arrogance and self-sufficient mindset can keep my on that path longer than I know I should be.
We often fail to recognize that the bitterness road that we choose can become our prison.
So how do we escape it?
We have to borrow the eyes of God.
Our worldly eyes have been trained to look at things as “good” and “bad” in such a black and white way. But God’s eyes perceive so much more than our human ones do. They see the future and they see the muscles we need to grow for what lies ahead. They see our need for perseverance.
I can look back on my life and see the many moments before having Malachi that God was preparing me for something. Those hard trials that I despised in the moment are something I am so grateful for now, as I recognize the bigger picture required stronger muscles.
I know I default to this verse often, but it bears repeating again.
James 1:2-4 “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”
If you want a good devotion this week I encourage you to read that whole chapter (James 1) and see what else God wants you to see in it.
“Consider it”- that is a verb. It is something you have to choose to do. It is not a natural inclination to find joy in your trials. But when you are a child of God you recognize that He is strengthening you through even the hardest moments and preparing you for a task He has chosen specifically for you.
There are days that things like the box of onesies will grieve me. And I am not convinced that those inclinations will ever truly disappear. But when I ask to borrow the eyes of God and He gives me a glimpse at the hand He has had over my life I realize that having the box of onesies is a blessing. It reminds me that God, through Malachi, has prepared me to be a great mom to Levi. God built my muscles and allowed me to be a strong advocate for BOTH of my boys. He allowed me recognize to recognize that “quality of life” is a term that has been polluted by the world.
If you are like me and find yourself often on the bitterness road I challenge you this week to find a way to consider it all joy. Try to view your situation through the eyes of God and get a glimpse of His greater plan for your life.
And if you don’t know God at all, try talking to Him…it might surprise you how eager He is to answer you. Dig into the Bible as it is literally the word of God. If you seek Him you will find Him. And if you have any questions or I can help you in any way please feel free to reach out to me at firstname.lastname@example.org
I am an ordinary woman put in charge of raising some extraordinary children. And while our walks may not look similar I would love to connect with you with my God.
Early this week we started a new medication regiment with Malachi to see what we could do to help his tummy. His ultrasound came back clear so we were hoping we could get his discomfort (that leads to seizures) under control by doubling his delayed release medication. The first few days were shockingly better with very few seizures. I was so confident we had found a working solution.
But Friday rolled around and the discomfort returned with a vengeance. Malachi started having massive seizures where even his face convulsed which is new for him. We battled seizure after seizure and his tummy was rock solid. I was able to try a new emergency medication for severe tummy aches like these and thankfully it did calm the cramps for short spells, but the underlying issue is still lingering.
When Malachi goes through these spells he is hands on 24/7. It isn’t safe to let him out of your sight and he is the most comfortable being held. And he definitely can’t be laid flat as it seems to trigger the seizures so we camp out in the living room and try to manage the best we can.
This week we will be tweaking his medication a bit more hoping to find the perfect combination. After two full days of severe seizures Malachi is wiped out. On days like these his brain doesn’t allow him to fall asleep even though his body clearly needs it. Today he has only had a handful of rough seizures so I am hoping we are back on track. He has actually had two biggies while I have been typing this blog.
That also means mama is running on fumes so if I type some odd things tonight just overlook them!
This week the boys brought home their first puppy, Shiloh!
I hope you all are ready for picture overload.
Malachi had already dealt with some intense seizures throughout the day on Friday, but he was on pins and needles as we went through our final training session. When we started wheeling him towards the car to load up Shiloh he started giggling and couldn’t stop. His excitement was so contagious and his happiness won out over the seizures for those few hours.
Shiloh has been absolutely amazing. He is so gentle and kind with the boys. Last night he walked over to Malachi, climbed up in his chair and cuddled in a ball on Malachi’s lap. Malachi was enjoying every minute of the hour long snuggle.
And Levi has been amazing with Shiloh. Oddly enough, his behavior seems to have improved as he is seeing us train and correct Shiloh.
Next week we will go back to pick up Tuck, so this week we are focusing on training them to fit our lives. We had family night Bible study at the house this evening and our guests couldn’t believe how well behaved Shiloh was! It really is impressive and like nothing I have ever seen.
I had to laugh as I thought back to an internal conversation I had with myself several months ago. I remember the exact spot I was standing when I thought to myself: “I think it is time to get dogs again.” And then I proceeded to talk myself out of it, saying “If I can find a puppy that is fully trained than I would do it in a heartbeat. But a puppy like that doesn’t exist.” Our life is very unpredictable and I knew that adding puppy training to the list of daily duties would be very difficult.
It was a few weeks later that I first spotted the post about these puppies. And then it was a few more weeks of me dragging my feet, coming up with every reason I could think of to not pursue. But we know see how that worked out, and I truly can tell you that I have no regrets (so far) after seeing Malachi with Shiloh. It is just what he needed.
The boys soccer team that we coach is wrapping up their season in the next two weeks so we have been packing in the games these last few weeks. The kids both really like going and hearing daddy and mommy shout so loudly. Levi mimics everything dad says and Malachi clings to every swirling emotion we toss out there.
Levi has been a lot to handle this week. He is in a stage of life where you can’t turn your back on him for even a second. And yes, that is half of a giant Easter egg on his head.
I don’t know if you can sense the theme in these…this boy loves food! Daddy wanted some tacos at 10pm after a game but Levi got ahold of them before dad did. We have cut his feeding therapy down to one session a month and would love to be able to eliminate it altogether but there are still some sensory issues we are working through.
This week I have been mesmerized by Levi’s empathy. Empathy is not my strong point. I find myself being embarrassed to admit that but I will say that it is something I am making a concerted effort to improve. It just doesn’t come naturally like it does for Jake.
Jake is oozing with empathy and a tender heart and Levi has most definitely inherited his daddy’s heart…which is a wonderful thing.
This week we were watching a video compilation of babies getting hearing aids for the first time. I explained the video to him before we watched it together, explaining that some of the babies had never heard their mom and dad’s voices before. We watched it together and I looked over to see a giant smile on Levi’s face and tears streaming down his cheeks. He caught me looking and said “Me crying!” And I asked him “Are you sad Levi?” To which he replied “No, me happy!”
The very next day I was speaking some words of affirmation to Malachi and I caught Levi listening in. I told Malachi “You are so loved by everyone who meets you, and especially God. He made you so special and so amazing with such a kind heart…”
I glanced over to Levi and saw his bottom lip quivering as he smiled and listened to the words. I asked him “Are you okay Levi?” And the floodgates opened. He began sobbing and gave Malachi a big hug. I asked him why he was crying and his reply melted my heart: “Malachi so amazing.”
Seriously y’all. He has such a tender spirit and God has blessed our family with such a pure hearted empath.
Confessions of a special needs mom/wife: this life God has called me to requires a lot of sacrifice…and I am not always a willing participant.
If I am being honest, this is one of the biggest argument topics between Jake and I. In my head I have created this idol of wanting “equal sacrifice” as I desire so strongly to have someone else to share some of the bigger burdens with. Someone to share the zombie moments with, the exhausted beyond words moments, the weary and emotional moments. But Jake has to function in a career so asking that of him just isn’t feasible.
While we share many of the same daily challenges with parenting, the parts that require major sacrifices of time and rest often fall on me as mom. I am in a good mood right now, so I will openly acknowledge that this is how is has to be. But catch me in a bad mood or a “6am and still wide awake” mood and I will be very bitter about this equal sacrifice thing.
God is not a God of equal sacrifice. He doesn’t play the comparison game that we like to play with one another. I am convinced that the game of comparisons has been created by the devil himself as he knows that if we keep looking to the left and right it will keep us from focusing on God.
In Matthew 25 Jesus tells the parable of the talents.
“Again, it will be like a man going on a journey, who called his servants and entrusted his wealth to them. To one he gave five bags of gold, to another two bags, and to another one bag, each according to his ability.”
The parable continues on and tells us what each man did with his bags of gold.
5 bags man went and put his money to work, earning five more bags.
2 bags man did the same and earned two more.
1 bag man dug a hole and hid his master’s money in the ground.
If you are like me I am sure you are totally judging 1 bag man in this story. But how many times do we pull the same stunt in our own lives with the things God gives us? How many times do we take opportunities for spiritual growth that He hands us and bury them instead of finding ways to turn them around and honor Him?
The master in the parable returns to settle accounts this his servants. The first two men show that they have doubled the master’s money and his reply is this:
“Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come share in your master’s happiness.”
The 1 bag man explained his actions and the master’s response to him was:
”Take the bag of gold from him and give it to the one who has ten bags. For whoever has will be given more, and they will have an abundance. Whoever does not have, even what they will have will be taken from them.”
God did not play the comparison game with these three men, but rather he evaluated each of them based on what they had been given.
I know it seems a bit like a stretch but I like to view this story thinking about the bags of money being our burdens. We are not all designed to carry the same burdens. While Jake and I share the same beautifully unique journey with our children, God has designed us each to carry unique parts on that journey.
Yes, there are parts that I convince myself are “heavier” than Jake’s. But if I am thinking clearly I can find pieces that are heavier for him to carry as well. And in the end I need to focus on the pieces God has placed into my arms instead of comparing that stack to anyone else’s.
What opportunities for spiritual growth has God given to you? Have you buried those out of fear? Or have you decided to find ways to grow strong enough roots through them to bloom and multiply?
“Each according to his own ability.”
Those words are so special to me. They remind me that God knows me…even better than I know myself. He sees my ability and He hands me things that He knows I can carry.
When you start to see your full arms as a honor from God it changes how you react to them.
Psalm 51:16-17 “You do not delight in sacrifice, or I would bring it; you do not take pleasure in burnt offerings. My sacrifice, O God, is a broken spirit; a broken and contrite heart you, God, will not despise.”
I foolishly think that God wants me to carry my burdens well. But the more I dwell on this the more I think that sometimes it is in our broken spirit moments, moments that strip away our pride and self sufficiency, those are the moments that please the Lord.
It is not my time sacrifice, my sleep sacrifice, my constant sacrifice that please the Lord. It is my spirit acknowledging that I can’t do this life at all apart from Him that He delights in.
So this week I am embracing the contrite heart. I am accepting that equal sacrifice doesn’t exist, nor should it. Each of us have been chosen by God for different tasks, and this week I am choosing to find honor in my heavy load.
This week we played the game. It sounds like cynical wording but seems to be the only real way to sum up a side of the special needs world that I didn’t know about before having children.
The hours of phone calls and phone tag with nurses, doctors, and pharmacists. The boys are now requiring three separate pharmacies for medications and coordinating all of the refills and recent prescription changes has been more challenging than I had hoped.
With typical children you go to the doctor when they are sick or need an annual physical. But when you have medically complex children you rotate seeing specialists every 3, 6, 9, or 12 months and that is if everything is going well. They are extremely routine appointments where you just touch base and make sure that everyone is on the same page and doing well. When you have TWO medically complex kids it leads to a lot of these ordinary, relatively unnecessary (were it not for protocol) appointments. Now, I completely and totally understand why they require them but they can get very cumbersome.
So we float from specialist to specialist and have the same conversations over again, like it is on some odd repeat button. Let me acknowledge that I am SO incredibly thankful that our conversations are boring, as that hasn’t always been the case. I pray that life continues to stay this boring and mundane!
In addition to seeing several specialists this week for each boy we also went for a fitting for Malachi’s wheelchair and an ultrasound on kidneys, spleen, liver, etc take make sure there isn’t anything specific causing him pain at night. I haven’t heard anything from the doctor which I like to believe is a good sign.
Levi still struggles tremendously with medical PTSD and requires major mental preparation before each appointment day. Even then, the anxiety grabs ahold of him and he was very stressed about Malachi’s ultrasound. I snapped this sweet photo and it made my heart swell. Levi was holding Malachi’s hand, but more to reassure himself than anything. And Malachi was his sweet self, enjoying the special attention.
As I watched their interaction at the appointment I couldn’t help but flash back to our pregnancy announcement from 2017.
Levi has become the most amazing sidekick to Malachi, and seeing how Malachi can help calm Levi’s fears reminds me of how much their relationship is mutually beneficial. In fact, I truly feel with all of my being that anyone that has a friendship with Malachi walks away seeing mutual value in the relationship. Malachi isn’t just a “taker” but is in fact quite a “giver” of such special gifts. He continues to bless others in intangible ways and give us a glimpse of the joy the Bible talks so often about.
Speaking of sidekicks, this weekend we will bring home one of our puppies. We are transitioning them to our home one at a time to help them get settled and trained in our environment. This week during our training session Malachi got to “walk” the dogs, training them where to stand when being tied to his chair.
The timing couldn’t be more fitting as our bears are officially back! One of the benefits to staying up so late at night is catching them in the act of messing with our things. This short and very chubby bear stopped by for a visit- I went on the back deck and yelled at him, but he was clearly not intimidated as he slowly walked toward the tree line.
We spent the majority of our free time outside this week working on a fundraising project for our youth group. The boys loved the playground time and the fresh air.
I received my second Covid vaccine this week, and the process stressed Levi out tremendously. He is leery of anyone in medical gear approaching our car thanks to some previous Covid tests. I plopped him in the front seat with me while we waiting in the line, and it distracted him enough to keep him from full panic mode. I did have some side effects from the second shot if anyone is curious. I had a slight rash at the injection site, some pretty frequent heart palpitations for 3 days, and a few random times of my hands going numb. The day after the injection I was pretty useless, exhausted completely and trying to simply keep the kids alive. But that exhaustion and achy feeling went away after 24 hours.
We are still dealing with some major sensory issues with Levi, and while he is making huge oral motor improvements he still struggles with eating and sensitivity. Since he didn’t get the chance to eat by mouth until later in life he is very easily triggered when things go into his mouth. It has made brushing his teeth quite a challenge so I have been working with his feeding therapist to be able to get him to a point where we can brush his teeth without major fighting and gagging. He is still distrustful of someone else holding the toothbrush but absolutely loves sucking the toothpaste off when he gets a turn.
Confession of a Special Needs Mother: I live with a daily fear that Malachi’s death will be my fault. And the idea of living with that guilt makes me queasy.
Much like a newborn, Malachi lacks the ability to get himself out of dangerous situations. In a single day I save his life at least a half dozen times. With his lack of body control he gets himself into positions where he is unable to breathe. In the bed he turns his head so far and arches in a way that his mouth is stuck up against the mattress requiring me to re-position him. In the car seat he has recently started turning his head to the far right and getting stuck with his mouth against the side of the headrest in the seat. When he has a seizure he tenses so hard one direction that anything next to him becomes a threat to his safe breathing.
Saving him in these moments has become so second nature, as it should be. It is one of those things that I don’t realize I even do anymore, like an instinct, and they no longer rattle me like they used to. But it is because of this that Malachi rarely leaves my side and eyesight. There have been so many close calls when I hear a faint muffled breathing and find him yet again smothering himself unintentionally. At night I sleep within inches of his face so when his head moves it hits mine and I wake up and can reposition him.
But I always worry about “that one time”. That one time I won’t hear the muffled breathing, or that one time that I am in such a deep sleep that Malachi’s movement goes undetected. That one time that I left him with someone that didn’t know to watch him so closely. And the fear of having the acknowledge that his death is something I could have prevented eats at me.
While I acknowledge that fear of imaginary death situations seems so irrational and odd it still consumes my thoughts often.
But this is where I find my faith needing to kick into high gear. If I believe that God is the creator and taker of life, I have to continue to believe fully in His providence and His timeline. Regardless of the circumstances surrounding Malachi’s death, I choose to believe that God will not take Him from this earth before his divinely appointed time.
And while I know this and it brings me comfort, I still circle back to the same exact irrational thinking.
When I reflectively look at my fear in this, I take it a bit further and recognize how hard it is for me to offer grace to others and truthfully to myself. God has modeled what a beautiful and free gift grace is, but for some reason I continue to use it sparingly.
It almost seems as though I have accidentally and unintentionally started to take ownership of grace when in fact it should be a reflection of the Father’s grace that we are offering.
In 2 Corinthians 12 there is a chunk of scripture that has sprouted roots in my heart over the years. If you get time I encourage you to read 2 Corinthians 12:7-10 and ask God to show you what He wants you to grasp from it.
But there is one verse in there that my mind has been focused on: “But He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses so that Christ’s power may rest on me.” (Verse 9)
His grace is sufficient for us.
Our grace will never be enough. It is too polluted with ulterior motives and attempts to control. It is His pure and beautiful grace that sustains and covers us in our darkest moments.
Here I am worried about a lack of grace from others and a lack of grace from myself in the darkest strands of my imagination of moments with Malachi. But God is clear that His grace is the only one we need to be concerned about. And if those dark moments ever become a reality, I am to rest in the fact that His grace is sufficient.
His grace is always sufficient.
While I am sure that not many of you can relate with the idea of having to rescue your child from death on a daily basis, there are other areas of your life that you have learned to fear. There are the dark crevices we don’t discuss with others that plant a garden of fear in our hearts and minds that we continue to till and try to harvest from. But the crops of those fields lead to death.
My prayer this week is that we are all able to rest in the knowledge that His grace is sufficient. Grace is built on the premise of us making mistakes and oversights. We were never meant to live sinless, flawless lives. We were meant to have moments of weakness that throw us into the hands of God.
Our week was wonderfully uneventful and I am so pleased to share that Malachi has not had any major night seizure episodes at all this week! The small/medium seizures are still happening but none of the massive ones. He is still staying up until around 3am but he has locked into a wake up time of 8:58 for the last four nights. It has been awhile since he locked into a wake up time like this, so I am really hoping this one sticks around for awhile. I can function relatively well on 6 hours of sleep and after the rough weeks we have been having it truly is a blessing.
The boys got much needed haircuts this week; here is a little before and after snapshot of Malachi.
In the photo above he is wearing one of his new church shirts. This week we had to go into a store to find new shoes for Levi and I noticed Malachi seething a bit with some jealousy. I could tell he didn’t like that we were getting something for Levi and not him so we headed to the big boy section to find him some new shirts for church. He was so excited this morning to get to wear one, and was very particular about it being the orange one. I love how opinionated he can be.
We went for another round of puppy training this week and brought out the chair for the dogs to start to become acclimated to. The goal is to be able to tie them to Malachi’s chair and have him “walk” them. She is also starting to work with them on the command “hold” so when Malachi is having a seizure they move their bodies against his to try to re-center him. When he seizes he pulls his head very far to the left and can get himself in dangerous positions. We are still on target to bring home one dog in three weeks and the second one the week after that. Jake says he is more excited than the kids, but it is safe to say we are all pretty hyped up about them joining our crew.
If you don’t know me personally, I am a pretty basic gal. I don’t have a lot of jewelry and accessories, hairstyles, or things of that nature. The same goes for my home decorating style- pretty plain Jane and basic. Although I was once a fan of knicknacks I find them now to be toddler temptations and dust collectors. I tend to go more for sentiment and spiritual reminders.
We moved into our new home in 2017 and I was at the tail end of a very high risk pregnancy. Levi came just 6 weeks later and off to Cincinnati we went and all of my boxes with home decor stayed sealed in the basement until recently. As I looked through the boxes of trinkets I just didn’t feel like any of them fit the new home quite right.
About two weeks ago I was staring at a small table in our living room and it just “needed” something. I visited my boxes in the basement and found two things worthy of coming out of storage and making a comeback into our lives. The first was a Willow Tree figurine I spotted when Malachi was small. It is a mother holding her son, and she was holding him the same way I held Malachi to get him to sleep when he was little. The figuring struck me enough that I decided to purchase it.
The second is a framed painting of Jesus done by an 8 year old art prodigy named Akiane Kramarik. She had vision of Jesus Christ and painted a portrait that is absolutely breathtaking. While I can’t say with confidence that is what Jesus looks like I love the photo (Google Akiane Prince of Peace to see it in all of it’s glory).
I snuck these two pieces up from the basement and positioned them on the table, and it was maybe 30 seconds before Levi had his hands on both. Raccoon fingers McGee doesn’t waste much time investigating new things, so we had to lay down some ground rules about not taking them off of the table. As most three year olds do, Levi has developed brief rounds of amnesia and forgets the rules often and we find Jesus in the playroom, the shower, and under the couch.
One day this week I noticed both pieces missing and sent him on a search to find them and put them back. Later that afternoon I was having a patience-testing moment with the boys and anger had welled up inside of me. I glanced over at the piercing eyes of Jesus in the painting and noticed that Levi had arranged them in a way that struck me.
It led me to a new “Confessions of a Special Needs Mom”:
I rely on distractions to keep me from focusing on the chaos.
It isn’t accidental, but rather it is a very intentional and calculated way to keep me from lingering on the hard parts of our world. And the truth is, this isn’t a new tactic for me. It is something I have spent most of my life doing to avoid some hard things life has tossed my way.
I can start a project as quickly as I can light a match, and I am not a quitter. I will see that project through no matter how many hours it takes and how much mental anguish it may cause. I am a professional distraction maker, if that’s a real thing.
Are any of you able to relate with this? The ability to mentally take yourself away from the drama, the pain, the reality. It is a tactic that gives me the false sense I am in control of something, even if it is simply control over my thoughts and fruitless endeavors.
I am about to do something I try to be very cautious in doing. I am about to take a verse out of context (go ahead and gasp here). But I believe that the word of God is living and active, and the Holy Spirit can take even words taken out of context to remind us of our weaknesses in Christ.
In the book of Haggai there is talk of rebuilding the temple. The people kept making excuses for not starting the project, but God spoke through the prophets and told them that the time had come to start. He was tired of their excuses and distractions.
Haggai 1:5-6&9b “Now this is what the Lord Almighty says: ‘Give careful thought to your ways. You have planted much, but harvested little. You eat, but never have enough. You drink, but never have your fill. You put on clothes, but are not warm. You earn wages, only to put them in a purse with holes in it…Why? Declares the Lord Almighty. Because of my house, which remains a ruin, while each of you is busy with your own house’.”
When I read this verse I can’t help but shamefully see myself in the words. Oh how many times I distract myself with planting but do not harvest- there are so many empty returns in my busyness. How many times I busy myself with things I deem as necessary (metaphorically eating and drinking) but they just don’t fill me. Just like the wages in the verse, there are rewards on my busyness but they flow through the holes in my bag leaving me back face to face with the original issues that spiraled me into distraction.
Sometimes I allow the distractions of my “own house” keep me from visiting the throne room of God. Sitting at the feet of Jesus is the only place we can go to truly be filled. But sitting and looking into the eyes of Christ is something I secondarily turn to after my busyness hasn’t sustained me. That is something I strongly desire to change in my spiritual walk.
As I stared at the mother figurine so aptly placed at the feet of Christ’s picture I got the Holy Spirit goosebumps. Sometimes resting at the feet of Christ and pouring out our hearts to Him is a true act of worship.
Leave it to raccoon fingers McGee and a bunch of knickknacks to remind me of my how desperately I need to REST in Christ. How I need to set aside my projects, my chores, and my distractions and find time to connect with my Father.
Join me this week in thanking God for Malachi’s seizure stability and for the rest He has given me the last few nights. He is such a good God. Please continue to pray for miracles for my boys, that God will heal them head to toe and use them to display His power.