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.
There are weeks that seem to zoom by, acting as one giant day instead of accumulation of seven. This has most definitely been one of those weeks.
Something has been slightly off with Malachi and we have been dealing with some pretty terrible tummy aches at night only. These set off his seizures and I spend most of the evening trying to bring him some relief trying every trick in the book until he passes out, usually between 4-6am. When he has these episodes his heart rate goes up and his breathing changes into a very shallow breathing. He will projectile vomit and this drama causes his body temperature to increase for just a few short minutes. It is like his system is going haywire. During the daytimes he has been his happy, chipper self although he definitely is much more sleepy than normal.
I spoke with his Gastroenterologist this week and we have scheduled an ultrasound to see if there are any obvious spots of concern, like hidden kidney stones or something of that nature. We couldn’t get on the schedule until April 16 so I am hoping whatever the source of pain is for him that we can figure it out between now and then.
When we go through rounds of unknowns like these it takes a toll on all of us. We already don’t get a whole lot of sleep in our house, but running on 2-3 hours a day takes it toll mentally on me. It also is starting to really affect my body physically which is a new challenge to deal with. Without a few hours break each day from holding and maneuvering Malachi my body is yelling at me that it is being overworked. My wrists, back, and neck are so painfully sore from supporting his body, like I have overworked those muscles. The physical nature of caring for Malachi is something I didn’t realize would be so significant at this stage…it worries me about what is to come.
But I also feel so guilty talking about my aches and pains when clearly he is the one truly going through the misery!
We did have some fun this week with friends and family! And Malachi’s mean old front tooth finally popped through this weekend, praise the Lord!
We both have siblings that have also moved to Tennessee and enjoy getting together with them during the holidays. My brother and his family came over to play on Friday and the kids got to do another egg hunt.
We tied balloons to Malachi’s eggs so he could grab them more easily and he loved the adventure.
Levi is a terrible egg hunter, but fun to watch.
The boys each had an appointment this week with GI and we did weight ad height checks. Both of the kids still have a “failure to thrive” diagnosis which seems laughable at this point. Malachi is weighing in at 36 pounds and 3 ft 3in. Levi is 34 pounds and 3ft 1in. They are almost exactly the same weight and height which makes me laugh a bit. But they are both healthy boys and the doctor seemed pleased with their progress.
We spent some time training with our puppies again this week. We will be bringing the first one home on May 1 and the second one home on May 8 and are all very excited! Levi has been fascinated with the training process and likes that he can boss the dogs around.
The boys received a very special gift this week from some of our sweet friends. Levi has been riding it all weekend and Malachi sits up so tall when we help him sit on it! Look at how tall he is getting!!
Today is Easter Sunday and we were so happy to be able to worship together at church. Easter has been a significant holiday in my memories over the last 8 years as we haven’t always been able to attend services together due to hospitalizations. You learn not to take things for granted when there are years you have to do without!
I tried to piece together Easter outfits for us late last night, something I usually look forward to doing but with the lack of sleep I just allowed it move to the bottom of the priority list. I rummaged through a box of hand me downs and we made it work. We don’t do “dress shoes” in our house as there isn’t room for braces and inserts in most of them…and Jesus cares way more about the inside of our hearts than what we wear so we let those ideals go.
Levi grew restless during the service so I took him outside and he got to run around with one of his best friends. They were so sweet together so we snapped some photos.
We are still trying to avoid crowded places, something we did pre-Covid pandemic as well, so after lunch we drove up the river to a local barbecue place for some brisket. It is usually too busy for our comfort level so we get an order to go, but today it was quiet enough for us to take the boys in for a special Easter lunch.
The owners were so incredibly sweet and brought out cookies for Levi and a special hat for Malachi, which he is super excited about. We are at new stage with Malachi where he wants to do things separate from Levi. We are working to find ways to give him that independence he craves, and allow him to do big boy things that Levi can’t do yet but obviously that is a hard task.
I have been putting him on my lap and letting him “drive” up and down our very quiet road and he is eating up the bragging rights it provides with Levi.
We have also been trying to be more thoughtful about giving him opportunities to decide what he does in his day. If he has my control freak genes I am sure it has to be so frustrating to have every action, activity, and body position decided by someone else. This week we started letting him choose whether he stays home with grandma and Levi for soccer games or comes to sit on the sidelines with mom. He has been voting to go with me each time, and that special time away from little brother has been so good for him.
He has also been going to a neighbor’s house for tutoring each week and gets to spend some time away from mom and brother! It has been so good for him to feel that freedom that school used to provide for him pre-Covid. This week they made cookies, and as you can see from his sly smile he was thoroughly enjoying himself.
Confessions of a special needs mom: every single week I cycle through the 7 seven stages of grief. Sometimes I can cycle through them all in a 24 hour period. Special needs parenting is absolutely emotionally exhausting.
Stage 1- Shock and Denial
While this one comes and goes every few weeks, this one hit me hard one particular night this week. It was around 2am and Malachi had projectile vomited out of his nose and mouth. The discomfort of that put him into a seizure, and during the seizure he lost control of both his bladder and his bowels. Within 30 seconds I was literally covered from head to toe in bodily fluids of all kinds, as was the floor around us. He was upset and so I went into momma mode and held him close against me until he calmed down enough for me to set him down. I stripped him down to a diaper and (TMI here) stripped down all of my fluid covered clothing and went to get a warm washcloth to give him a sponge bath until I could get him in the shower the next day.
While I was getting the washcloth Levi started tossing the couch pillows into the puddle of vomit on the floor. I really don’t know why this struck him as a fun thing to do, but his three year old mind decided to go this route at 2am. I was angry at this point, more at circumstances than children and started yelling at Levi from across the room to stop. The yelling woke up a snoring Jake and he ran out of the bedroom and into our chaos. He asked “What’s going on in here?!?” And I just stopped in my tracks and looked around and back at him and started tearing up.
I said to him “This isn’t the motherhood I signed up for, Jake.”
Even though I live the special needs life each and every day, there are still times that shock me. I call these “reality check” moments, as they remind me of the long term nature of our trials.
Stage 2- Pain and Guilt
This one comes into play often- every.single.day. I can’t put into words the heartbreaking nature of watching your children suffer and being unable to stop the suffering. It has been years since we have gone 24 hours without a seizure. Each time I watch his body become overwhelmed by his brain I can’t help but feel pain in my heart for Malachi. And I struggle so much with the guilt of knowing I chose this life for him. Let me explain that a bit…
We had the opportunity to allow Malachi to pass when he was three days old. Jake and I made the decision to allow God to make that call and asked them to save him to the best of their ability. We have NEVER regretted making that choice and still firmly believe that Malachi’s timeline has been pre-determined by God. No decision from Jake and I will take Malachi from this earth before God’s chosen time.
But there is a guilt in knowing that the doctors presented this vision of our child having a life of suffering, and we CHOSE that life for him. So when I see the suffering I can’t help but flashback to that conference room with the doctors when we looked them in the eye and said “He’s here for a reason, we want you to save him”.
I am 100% confident that the guilt is placed in my heart by the devil. My God is not a God of guilt. Guilt is a chain that can so easily tie us down in a dark place so this is an attack I try to be very sensitively aware of.
Malachi is God’s child, not mine. And if I truly believe that then I have to believe that his suffering still contains purposes beyond what I can see.
Stage 3- Anger and Bargaining
This one hits a few nights a week, and my anger is aimed mostly at Jake. In my heart I find jealousy for him being able to live a somewhat structured life, and the ability to have distractions (like work) throughout his day. The seeds of bitterness can grow pretty quickly and manifest in some major anger towards him in the middle of the hard nights with Malachi.
I am venturing to say that resentment has more fertile soil to grow in the hearts of special needs moms.
Stage 4- Depression, Reflection, and Loneliness
Oh boy. This one truly hits me every week and is connected with the resentment I mentioned a second ago.
The special needs life is isolating. There are a million reasons that keep us from being able to connect on a deep level with other moms, and sometimes those moments around typical mothers do more damage than good when our hearts are not in the right place.
I have to prepare my heart before I am around “normal”. I have to pep talk myself to make sure I do not get tempted to play the comparison game because that game continues in my head long after the play dates end (the reflection part of this stage).
Stage 5- The Upward Turn
Oh how I love this stage, as it rejuvenates me! We have had lots of upward turn days in the last year and they are a gift from God. They refocus me on the good, and they bring rest for my soul.
It is in this stage that I forget we are a special needs family. I accept and relish our normal, and I am able to see how extra blessed we are in so many ways!
Stage 6- Reconstruction and Working Through
This stage hits after the upward turn for me and I find myself tackling projects that I have been putting off. I prioritize all the things I have been purposefully putting off to spare my weary heart, like planning medical trips and surgeries. We get fitted for new equipment and find ways to make life more doable. We restructure routines. And it naturally leads into the next stage…
Stage 7- Acceptance and Hope
Usually this is the stage I aim for on Sunday’s nights before I start writing the blog haha.
These moments come and go like water breaks during an intense soccer game. I look forward to the refreshing they bring, but I am also very aware that the feelings will be temporary. So I try to savor this stage and use it to build strength and resilience for what is to come.
That’s the unique thing about special needs parenting…the stages of grief do not go in any particular order. I can be in stage 7 one minute and back within stage 2 within the hour.
With typical grief there can be a healing and a closure that takes place. With special needs parenting the scar that begins to form is so easily ripped off with each new hiccup.
So why write all of this out for you?
When I started out on this journey I didn’t know all of this. I watched us cycle through these stages in our first NICU stay, and was so thrilled when we reached the acceptance and hope stage. We celebrated the victory of leaving the NICU and going home as a family of three. Then BOOM his seizures hit and we started the cycle all over again with a new diagnosis.
For years and years I exhausted my heart with the cycles, but also the disappointment when each round began again from the start. With each new diagnosis I started back on the grief treadmill and since I had run the race before I knew what was about to come around the next turn.
Part of my healing as been acceptance of the unknown. And while I don’t enjoy the roller coaster ride through these stages each week I recognize how much these stages have thrown me into the arms of God again and again and again.
Psalm 71: 21-26 “When my heart was grieved and my spirit embittered, I was senseless and ignorant; I was a brute beast before you. Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”
I see so much of myself in this verse. Grieved. Embittered. Senseless. Ignorant.
And then comes that word that I love: “YET”
Our God is a “yet” God. He is a God that sees our weaknesses, our cycles, our arrogant independence and YET he continues to hold us in His hand, love us, guide us, counsel us. And in the end, despite all of our failures, He desires to spend eternity with us in His presence.
He is truly our strength and our portion.
The boys and I talked this evening about Easter and why it is so special. Levi is starting to understand so much and I feel this strong urge to start discipling him and sharing the joy of Jesus with him. We have talked about the easy parts of Jesus’ ministry but tonight I spoke with the boys about the harder parts I usually gloss over.
Our home is full of suffering moments, so I don’t know why I have always felt the need to not mention the suffering moments of Jesus when they are so relevant in our life.
Tonight we talked about Jesus on the cross and the emotions of the people witnessing the crucifixion that truly loved Jesus. We talked about Jesus walking out of that tomb and how everything happened according to God’s plan. We talked a lot about heaven and how Jesus is waiting for each of us there. And we talked about the good things waiting for those that love God with all their heart, soul, mind and strength.
We talked about how Malachi would run and jump into the arms of Jesus. How wonderful is it that Malachi’s first steps will be on a street of gold?! I explained that we don’t know which one of us will get to go to heaven first, but how lucky that person will be and how much we will look forward to heaven even more knowing we get to see that person again. By the end of our talk both boys were smiling and giggling thinking about heaven.
What an innocent, beautiful, and biblical view for my boys to grasp. Oh how I pray the world never pollutes the truth of God’s word in their hearts.
I don’t know if any of you find yourself on the grief treadmill right now, but I hope that as I jog on mine for the thousandth time you can find encouragement in the smile of contentment on my face. When life doesn’t give you closure, you have to choose to create contentment. And that is what I daily strive for, even in the hardest days and grief stages.
Just remember the “yet”. Don’t let the devil convince you there isn’t a “yet”.
This week I have been thinking long and hard about the blog and how it has changed over the last 8 years. When I go back and read the entries from Malachi’s birth I see such transparency and openness. But when I read current ones I can see and hear my hesitations in what I write. That change happened without me intentionally doing it, and it has got me really thinking about the purpose of the blog.
My number one purpose in the blog has always been to point people toward Jesus. I am not confident that each entry has done that, but that is always on the forefront of my brain when I sit down to write each week.
Another purpose is showing you the joy that special needs families have. When you choose contentment, even the hardest moments can breed joy.
Another purpose is awareness. I want to help educate the world on how to treat children with special needs. I also want to share as many medical terms and diagnoses as possible on the chance that other parents are just starting their medical journeys and need some support!
Another purpose I started focusing on several years into our journey with Malachi is always being honest, even about the hard things. This is the one that I seem to be having the most trouble with. When I post hard moments and hard emotions I have found that people treat me differently. I get eyes of pity and lots of “How are you doing today? I know it has been a hard week.” And while those comments come from a kind place they do more damage than good for my heart. I spend more energy than I should keeping my emotions in check and avoiding breakdowns throughout the hard days, and the looks of pity inch me closer to the floodgates and pity parties.
It has simply become easier to smile and nod. When people ask “How are the boys?” It is much easier to say “They’re doing great” then to spend time telling them about the 4 minute seizure Malachi just had or the g-tube scare with Levi. And I have come to recognize that most people want the response to be “They’re doing great” as it makes them less uncomfortable than the alternative.
And finally, I have been more reserved writing lately for fear of judgment. Covid and its social complexities seems to have empowered many people to want to educate others, myself included. One of the most hurtful things is when people question my parenting decisions or choices with the boys, so it has been easier to keep the details of our life quiet to avoid judgment. After a few personal messages from readers I clamped down on our privacy a bit.
But in doing so I have strayed far from what this blog was meant to be.
All of that to say, I am going to work hard to write without reservation, still allowing myself to be guided by God. There may be weeks that I post the ugly side of our special needs world, and I am asking that you allow me to do so and respect this special bubble that I put those thoughts in.
Oh boy, what a long intro that turned out to be!
Jake was off this week for his spring break and we had the most pleasant week together. The boys were so happy to have him home, and I needed the respite more than I realized. We are able to get into a groove with caretaking when he is home and each get the chance to catch up on much needed sleep. Even the small things, like Jake taking a medication session with the boys is a special treat. The monotony of our schedule can mentally get to me some times. And with the time change added in, getting the boys into a feasible routine for meds has been difficult.
We spent pretty much every day outside in the sunshine. This time of year is our prime time for Malachi to be outside since the temperatures are still tolerable. When summer temps hit he shuts down outside.
We do have a special announcement we have been keeping under wraps for a few weeks, although we have hinted at it several times. In May we will be bringing home two black Labrador puppies, Tuck and Shiloh. In true God fashion we were given a very special opportunity to get these two special dogs for Malachi and Levi. They are 11 weeks old now, and are being fully trained before they join our home.
We visit them often and get educated on how to command and we have been absolutely astounded by how well trained they already are with basic things like potty training, gentle, and simple commands. They will not be “mobility assistance trained” but we intend to continue to pursue that route once they get a bit older. The trainer is working with them now on basic things but will also be implementing some special skills in there. Our end goal would be that they could re-position Malachi’s head specifically when he has a seizure and cuts off his air supply with his head turn. This has been happening a lot more recently so we are always on alert and keep him in our sight 24/7.
Malachi chose the names for the dogs using his yes/no signs and worked it down from a list of 9 to Tuck and Shiloh. He was VERY firm on the name Shiloh and oddly enough that is the one that seems to have attached himself to Malachi; he is the one closest to the camera. He is a big, lazy puppy that loves to snuggle…perfect for Malachi. Tuck is a bit more adventurous but very well mannered and intelligent.
Here is a video that will let you see their patience training:
We are all very excited about the puppies and they are a daily topic of conversation. Jake and I each had black labs growing up and have been waiting for the right time to add dogs back into our mix.
We had a super special treat this week and got an invitation to an egg hunt with some amazing people. Throughout our medical journeys we have connected with hundreds of nurses, therapists, doctors, and various medical providers. With both of the boys having complexities we have become “frequent flyers” at our local children’s hospital and tend to be remembered (I think that is a good thing haha?) We have favorite anesthesiologists, x-ray techs, emergency rooms doctors, respiratory therapists, and nurses. We even used to have a favorite parking attendant and would bring her candy on the days we knew she was working.
During those long ICU stays the only company I had was medical staff, and I was able to form bonds with many of them. It was these special people that cared about keeping my son alive as much as I did, and I have always admired their hearts and dedication to such a challenging career full of ups and downs. They are also the only ones that truly understood the battles we were facing. Many of them have stayed connected after we were discharged and have become special friends to me.
One of those friends invited us over for an egg hunt this week with several NICU nurses and respiratory therapists. I giggled a bit at the irony of being such a regular that we get to party with them on their days off too haha, but in all honesty the day meant so much to Jake and I. These people saw/see us at our absolute worst and the love they have for my boys is something too unique to put into words.
One of my blog rules is that I try hard to respect the privacy of the people we spend time with, but I don’t think he would mind…
This is our favorite respiratory therapist, Ryan. He is almost always in the Emergency Room when we have had late night emergencies and Malachi knows his voice well. He always speaks to Malachi in a way that acknowledges his understanding, and that always goes a long way with Malachi (and mom too). I zoomed in on this photo because it touched my heart so much. You can see Malachi sneaking a glance at Ryan, who is not often in Malachi’s tiny range of vision and the smile on his face says it all.
Levi was way more interested in the babies than the egg hunt.
But Malachi was pumped about the giant chocolate bunny!
I get a lot of social anxiety when we take the boys somewhere. There are so many variables I can’t control and let’s be honest…my kids are quirky. Levi still can’t eat most things but loves to pop food into his mouth, chew it up, then spit it out. Sometimes he is polite and puts it in a napkin, sometimes he isn’t as discreet. He still chokes often on food and when that happens he projectile vomits. I keep a towel in the back of Malachi’s wheelchair when we are going to be inside a building but if we are outside I always am mentally choosing a spot to aim him like a super soaker should the need arise.
Malachi is very unpredictable in unknown environments. Sometimes the extra stimuli sparks his seizures, which we don’t like to draw attention to. But when he has seizures he looses his bowel control and will also pee extremely hard which the diaper can’t always keep up with. Changing him in public is also getting very difficult. Malachi is also cognitively very aware these days, and knows when he isn’t being included. He gets his feelings hurt often and starts crying…like BIG time, crocodile tears. It breaks out hearts when it happens. We have been trying to prepare him for things a bit more, explaining to him that there will be kids doing certain things that he won’t get to do and we can come up with some pretty lame excuses as to why he can’t do them. Like how he is the oldest kid there and ”they are only letting the little kids play over there“. Or we tell him how boring something is, and distract him with something fun we will get to do when we get home. But I worry about the day that those stories will no longer work.
Public outings require a lot of preparation physically and mentally for our crew. But they are also so important in so many ways! So we just have to find ways to make it work. Our egg hunt outing went great with zero seizures and vomits. Levi kept kissing the tops of the other kid’s heads but other than that we weren’t too weird.
I have been reading another blog that has been doing a series of posts called: Confessions of a Special Needs Mom
When I read them it feels like my heart is high-fiving the author. The struggles she talks about are so relatable to me.
I want to start having some of those conversations in these entries but do so with a disclaimer. These are intended to educate and bring awareness to a world that you may not fully understand. I am not writing these for sympathy or self-glorification.
Confession of a Special Needs Mom: I have lost my identity against my will.
I didn’t realize that this could ever actually happen. I always thought it was so crazy that someone could “lose” an idea of who they are.
When I was thrust into the special needs world at Malachi’s birth I still clung to pieces of my pre-mother identity. I had hobbies and goals. I enjoyed doing trivial and meaningless things, like watching Jeopardy and reading an occasional book. I thoroughly enjoyed working out, coaching soccer, and hiking up mountains. Going out with friends sounded like something fun to do, and shopping was an activity that took several hours mostly spent wandering around stores and looking at things for the sake of it.
When Levi was born I spent those first few months in ICU land and those tiny fragments I had clung to disappeared. I came home from Cincinnati and the things that I once loved now seem so time consuming, pointless, and so far down on the list of priorities that I have mentally let them go. While some may say that is sounds like depression, I truly don’t think that is what I am dealing with on this one. It is simply the inability to give of myself to anything or anyone other than my children.
A few weeks ago someone sent me a link to an Enneagram test and for fun I clicked through it one night.
Here are some of the questions:
“I think a lot about what will happen in the future”
”I am a natural caretaker”
“Average people often find me a bit weird”
“I often feel like an outsider”
“I am always up for a new adventure”
“I enjoy caring for others and their needs”
As I clicked through the questions I caught myself pausing, trying to decide if I needed to answer with my natural inclination or my reality. The answers that I would choose differ greatly now that I am a special needs mom.
There are not many things that come naturally to special needs mothers. Watching seizures, changing g-tubes, seeing daily suffering…these are not things that come naturally to me. But they are things I have to accept and learn to become “natural” at.
When you become a special needs mom you are required to trade pieces of your identity for pieces you would never voluntarily pick from a list. There are days that I resent that. The lack of choice and control I have over my own life is hard for me some days. I resent that when I do get a free hour all I want to do is sleep, trying to catch up from countless nights of insufficient rest. I resent that I can’t work out and look like I want to, can’t coach soccer like I used to, can’t wander around TJ Max aimlessly looking at cute clothes I might wear on my next girl’s night out. That is a life I an longer living.
But then I remember that I am not put on this earth to be the person I want to be. I am here to be the person God is calling me to be.
Ephesians 2:10 “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”
A huge part of walking with Christ is surrendering to His will for our lives, trusting that He knows us a whole lot more than we know ourselves. Read that verse again.
I am not completely convinced that clinging to my “identity” is God approved. It sounds a whole lot more like the world to my ears. The world convinces us that we deserve ______ and we earned ________. But that’s not how a life with God in charge looks.
Life with God is acknowledging that we have been chosen by God, our Creator, for very specific tasks for our time on earth.
Oh, how ashamed I am to see how my mind has selfishly turned these God given tasks into chores.
When our identity is rooted in Christ it cannot ever be lost, as it is not ours to lose.
I feel like typing all that out was therapeutic for me haha. Maybe tonight’s leading from God was for my heart and not yours. Or maybe He knew we all needed a reminder that we can’t pretend to be a silver spoon when the Creator designed us to be a salt shaker.
May we all be challenged this week to allow God to shape our identity instead of our own ideals.
P.S. I had to laugh last week at the amount of typos and errors in the entry I posted, especially adding a j to my name. We have been having technical issues and I am typing them on Malachi’s iPad, clearly something I have not mastered. I thought about blaming Levi, but that just didn’t feel right.
This weekend we got a little courageous and took a day trip to Pigeon Forge. We are still being cautious with the boys in public places, so we researched two shows that we felt were safe enough for our crew. Yes, we have all had Covid but we want to still be wise about limiting their exposure to other sickness with their immune systems being as protected as they have been this past year.
Our first stop was at the Pirate Voyage Theater. They require masks while anywhere on the premises other than your table, and there are no medical exemptions. Both of the boys have airway issues so we never frequent places that will require long term mask usage, but we started working a little each day on building their tolerance up for the two minutes it would take to get to our table.
Loooong rabbit trail here…
Being in isolation for the last year has also freed me from “skin toughening” moments that we encounter on a daily basis when we are out and about. While 80% of the people we encounter are kind and accepting, there is a small percentage of people that are not. When Malachi was younger and his differences started to become noticeable we were naive to this reality. When it happens now we are able to attribute it to ignorance and don’t feel the need to “educate” certain individuals like we used to. We read each moment and decide if it is worthy of my emotions and energy.
So when Covid hit we found ourselves in a safe Carroll bubble of love. As we planned this quick family trip I started with a phone call to the Pirate Voyage show. I asked about handicap seating and the young girl on the other line explained that they were sold out of every handicap seat for the entire weekend. The show has limited seating due to their Covid precautions, so I wasn’t shocked. I told her “that’s okay we will just carry him in and he can sit on my lap.” I told her we would need two adult seats and two children seats in the regular seating section. Even though the boys don’t eat and can’t sit in their own seats (one due to toddler-ness and one due to disability) we have always had to still buy them full price tickets….something we totally accept.
She said “hang on, let me talk to my manager”, and in my mind I had decided she was going to talk to him about having any wiggle room with the handicap section. Yes, presumptuous but I was hopeful! She came back on the line and said “I’m sorry ma’am but I cannot sell you tickets. My manager says that you having your handicap son on your lap will be a fire hazard.” It was said in such a matter of fact way and it genuinely caught me off guard. I felt my face flush with embarrassment, which I can’t really explain, and I felt my voice starting to do that shaky thing when emotion hits.
I thought that maybe she didn’t fully understand exactly what we were planning to do- leave the wheelchair in the car, carry Malachi in on our shoulders (he is 36 pounds so not crazy heavy for Jake), and sit him on our laps which we would have done anyway to help narrate the show. I re-explained and she said “I understand all of that but I cannot sell you tickets. He will be a fire hazard.” I kept repeating this line in my head and the more I said it the more upset I felt myself becoming. I asked her if they don’t allow scared four year olds to sit on their parents laps and she said “that is different”.
The longer we spoke the more belligerent she grew, and I found myself giving emotion to something that clearly wasn’t going to change. I asked to speak to the manager directly and she gave me a different number to call. By this time I was pretty upset, but while I was on hold with the lady initially (after I had verified they had open seats) I whispered to Malachi who was eavesdropping on my conversation and let him on the big surprise. He was giggling and super excited. As I got off the line I considered letting it drop but his sweet joy caused me to dial the phone again.
Thankfully a different woman answered, and this time around I simply told her we needed 2 adult seats and 2 children’s seats. No details until she asked, and no emotion. I also didn’t mention my previous phone call with the other woman. She was super sweet and said they had plenty of open seating and asked if we had a preference. I told her “ideally the handicap section but I have been told you are all sold out of those seats?” She asked about Malachi and I explained that he was in a wheelchair and had very limited vision but we would be content wherever they could safely place us. She said “hang on a minute, let me talk to my manager” and I cringed from dejavu, bracing for another rejection.
She came back on the line and said she spoke with her manager and they had reorganized things to give us the center section in the front row of the handicap section. It was literally the best seat they had to offer. I literally started crying, which I was embarrassed about (seriously, who cries about tickets for a pirate show haha). It wasn’t really even about the prime seating, it was about the willingness of someone else to walk a moment in my shoes and try to make life a bit easier. My son went from being a “fire hazard” to being a very special 8 year old boy who would get to be right up front for the action.
As I got off the phone and wiped my eyes I shook my head at the drama and had to laugh a bit. Then I told Malachi the news that not only would he get to go to the pirate show, but he would be close enough to touch them!
I often hesitate to post things like this as I never want to give off the impression that we have a sense of entitlement, or an unrealistic expectation of the world to be perfectly accommodating. But like all mothers, I do have an expectation that kindness be extended to my children, regardless of their abilities. To hear Malachi referred to multiple times as a fire hazard simply because of his special needs hurt my heart and I was so incredibly grateful that those words were reaching my ears and not his.
But I do post this with the hopes that it will remind you to saturate special needs families with kindness when you are out in public. We are often bracing for the bad moments, as they are not unfamiliar or rare. When the uplifting moments happen it brings me to tears and breathes life back into me. We remember both moments, and need desperately for the good interactions to outnumber the bad ones.
We arrived and sat in the parking lot until all of the crowd had gone in and sat down. Then we masked up and walked straight to our table and got settled with about 30 seconds to spare. I figured we would be close, but we were literally RIGHT in the front, and Levi was cautiously looking around and soaking things in when BOOM the show began. Pirates were firing guns at each other and sword fighting and I am pretty sure a cannon went off. Malachi started laughing hysterically and Levi lost his ever loving mind. Jake and I couldn’t help but laugh at how quickly (and loud) things kicked off. We finally got Levi calmed down, but literally every time we got him to stop crying something else would scare him and it would start all over again. He watched the show with a horrified look on his face, but couldn’t look away for fear of being surprised again.
Malachi was the happiest I have seen him in a long time. His imagination kicked into gear and for that 1.5 hours he was a pirate with them. He shouted when they shouted, laughed when they laughed, and got super intense in every fighting scene. He is legally blind, so I narrated the show to him quietly in his ear and he was so engaged clinging to every word. But the actors would often be right in front of his line of vision and with the low lighting he was actually seeing them! I know because each time he caught a glimpse he would grin from ear to ear.
At one point there was a big fire explosion and you would have thought it was the greatest thing he had ever witnessed. Levi disagreed. At another point in the show some pirates jumped into the water so close it splashed us, which made Malachi erupt in giggles and Levi shriek in fear.
We would absolutely do that show again for Malachi, as he loved it even more than we ever imagined. We snuck out of the show 10 minutes before it ended to keep them from being mixed in with big crowds. Then we headed over to the second wave of our adventure…the Lumberjack Feud.
I had researched several shows that we haven’t already gone to in Pigeon Forge and this one caught my eye. They do 13 lumberjack competitions, like chopping logs, sawing logs, and other noisy events so I figured Malachi might enjoy the auditory nature of the show.
Levi no longer had an ounce of trust in my show selections…
I would love to give you details about the show, but the second those chainsaws fired up Levi ran like the devil was chasing him and he and I ended up playing in the wood chips behind the theater.
But I was able to enjoy about 15 minutes with Malachi, and it was so special. Just like the pirate show he was hanging on to each new noise and competition. He was cheering with the rest of the crowd and so into the show! I took a video to share with you:
In fact, much to our surprise right when I stopped filming this video above them awarded him with a Lumberjack cookie, a slab of wood that was signed but he lumberjacks, for being one of the “rowdiest fans” haha. He was so proud and still is.
He loved the loud chainsaws and noises, and especially loved the trash talking between the two teams on the stage.
And Levi finally gave me some smiles after playing in the wood chips for an hour…far, far away from the chainsaws.
After the show we loaded up and headed home. We talked in the car about their favorite parts of the day and Malachi signed that he liked the Pirate show the best and he liked the sword fighting and fire. Levi also voted for the Pirate show (not a shocker) and said he liked the puppies the best. The show uses dogs in one portion of it and they jump in the water and swim. Both of the boys thought that was pretty amazing.
I will tell you though- we were all exhausted!
Other quick updates from the week…
Momma got her first Covid shot! I was extra sleepy and my arm was sore but other than that no negative reactions.
Levi has been a dancing machine this week and it never ceases to make me smile. I filmed him for you, and it will be worth the click for sure:
And Malachi’s front teeth are insanely close to popping through the gums. This has led to a very emotionally charged week for him, and lots of crying spells but we are hoping that this is the week.
Jake is on spring break this week and we are looking forward to a very calm week.
If I sat here and dumped out all of the thoughts I have been wrestling with this week we would be here awhile. There are so many things that God has been pressing on my heart lately, and each of them can captivate my brain for hours.
Jake and I were talking on our road trip about a sermon he had listened to. He said that they were interviewing a pastor in a different country whose identity had to be hidden for fear of repercussions on his life. He said that the interviewer asked the man about what he thought about the American church, and his response was “Satan is singing a lullaby the the American churches.”
The more I thought about this the more I see truth in it. When I look at the Christian walk of the people in the Bible and the Christian walk in America today I have a very hard time spotting the similarities.
This thought has created some self reflection in my life, and might be an interesting thing to process this week in your life as well.
In what ways is my life a threat to the devil?
Do I make him nervous?
In what ways has his lullaby dulled my mind and sensitivity to the Spirit?
It is so incredibly easy to water down Christianity to a title and a check mark. But it is a life of action, a life of your faith causing other seeds to be planted and grow. If your Christianity is not influencing anyone other than yourself then you are likely not on the devil’s radar.
When I look at the men and women of faith in the scriptures I see an excitement. And I believe that we all have that level at some point in our faith walk. But we allow the devil to sing lullabies to us until we forget that inexplicable joy Christ bought into our life.
This week I met with a group of about 50 women for a meeting about an upcoming youth event. As the hours ticked by closer to the meeting I found myself growing anxious about the meeting, which sounds so silly. Give me a room full of 300 teenagers and I can have them laughing within minutes, not an ounce of nerves brewing inside me. But give me a room of 10 adult women and I just feel so…inadequate in all facets. I only knew two other people at the event and for some reason I have grown even more socially awkward than pre-Covid. It was being held at my church so I made myself busy in my office until the meeting began, then slipped into my seat.
I had been asked earlier in the day to pray aloud over someone specific during the meeting My inner dialogue was cracking me up as I looked around the room. I caught my mind saying things like “Am I qualified enough to pray aloud?” Or “Should I write down some notes in case I get stumped in my prayer?” And “What if I don’t get asked to pray first and my prayer is super lame compared to everyone else’s?” A lame prayer? For real, Leah (insert eye roll).
Each time a new ridiculous doubt formed in my brain I quickly pushed it away as I recognized that the devil was using one his biggest tactics on me- the feeling of inadequacy. He plants these seeds of doubt in our hearts to keep us from acting in faith.
The meeting started and the Holy Spirit joined right in. I found myself in a room with 50 other women, all praising the same God in the same Spirit, and in the same unbridled way. The Lord used His Spirit to squash my unfounded inadequacies underfoot as we prayed together and worshipped together.
As I felt tears rolling down my face I looked around the room and I thought to myself “THIS is what the early church must have been like.” A group of people brought together with one thing in common- an unmatched love for God. And then I transitioned into the thought “THIS is what heaven must be like.”
But in Heaven I will get to hear the clear voice of my son worshipping the Creator alongside me.
The point of all this is to remind you that Christianity isn’t meant to be done alone. If your faith only impacts you then you are missing the point of the transforming power of the Gospel (which literally means “good news”). While the devil may not revel in the idea that YOU don’t belong to him, there is no threat in you.
I don’t know what you need to do to silence the lullaby in your ears. It may take signing up to serve somewhere in your church. It may mean you actually start going to church somewhere or a Bible study. It may be a challenge to start making intentional faith filled social media posts. It might mean seeking out that one friend that god has been laying on your heart and inviting them to talk about God with you this week. May our faith lead us to action this week.
Silencing the lullaby will look different to each of us, but may we be sensitive this week to recognizing the singing voice of the devil in our lives.
This week I asked Levi “Who is the strongest person you know?”
He thought long and hard about my question and finally replied “Umm Malachi!”
And oh how right he is. Malachi is so resilient and so content, even through some really hard diagnoses and trials. I am continually proud of the boy he has become. And knowing that Levi sees something so big and strong in his brother makes me so happy.
Now that we are doing in home therapies and tutoring with Malachi we have seen the need for Malachi to have a space of his own for these sessions. Levi tends to wander in and out and make the appointments all about him, which isn’t fair to big brother Malachi. For my birthday this year we had a barn door put on the opening of the therapy room and Levi’s rule is he can’t go past it during sessions. He still stands at the corner to peek at brother though and cheer him on.
I often get questions about how we know what Malachi wants or needs. One of the biggest blessings God has given us is found in Malachi’s ability to communicate to us without saying a word. He is very opinionated, but you have to take time to listen. More on that in a minute.
This week we headed to Chattanooga for Levi’s annual pulmonology appointment. He is seen by pulmonology in Cincinnati primarily, but followed by another one here locally in case something goes wrong and we end up in the hospital with him.
The pulmonologist was shocked at how much Levi has changed in a year. He is still wheezing a bit when he plays hard, and he is still stridoring when he is crying which tells us that the vocal cords are still paralyzed. But overall he is doing so great from an airway standpoint.
We will head back to Cincinnati this summer for his annual appointments and surgery there but everything seems to be staying routine for the moment.
We also started scheduling our other summer medical trips this week to Nashville. I usually am able to plan it just right that we can see all of Malachi’s orthopedic and spine surgeons on the same day, but now that isn’t an option so it looks like we will have a mini-getaway in between two appointments. I try to spread out the traveling summer appointments for sanity sake so we will aim to do Nashville in July and Cincinnati in June.
Levi has been really struggling with medical PTSD and the recent covid test he had to have made matters worse. In an effort to keep his crying to a minimum I bribed him with a trip to the zoo afterwards, which helped a bit. The boys were so excited when we pulled in, but once again the jaguars were sleeping on their platform instead of walking down by the glass. This is the second trip in a row they have not come down to Malachi’s line of vision and he was devastated. I tried to distract him by quickly going to another great animal but the tears started to flow and we ended up sitting on a bench and trying to get past the wave of sadness.
As we went through the rest of the zoo Malachi was simply mad. He was annoyed at the jaguars and decided he was going to stay in a bad mood so after a bit we loaded up and headed home. That afternoon Malachi stayed in his mood, yelling and being extra grumpy. This went on for hours, which was a first for him as usually he bounces out of bad moods quickly. When the attitude was still very alive and present by that evening I had a stern talk with him and told him if the zoo had the potential to ruin his day that we weren’t going to go anymore. His face immediately softened as he listened to my words, and when I picked him up to carry him to the car he squeezed me tighter than he had ever hugged me before. And then he was back to his normal bubbly self.
That whole encounter was so special to me, as it was the first time he had attempted an apology. I obviously made a big deal over the scenario, making sure to tell him how proud I was that he was choosing to not let a bad moment ruin his day anymore.
Levi has been into some major mischief this week. He knows when I am medicating Malachi that my hands are full and he can pull off some quick maneuvers.
The boys did get to have some more playground dates with friends this week as the weather was exceptionally beautiful.
We also spent some time this week on some very special play dates with some four legged friends!
Malachi was as tickled as could be!
Let me down quick Covid rundown before I jump into the next paragraph. Around the small town we live in life has not stopped. Sports are running as usual, schools are in session (students are unmasked), and churches are having normal services and gatherings. I know for many of you that is not the case and you may balk at some of the things we do, but be assured our decision to do them is driven by the Holy Spirit.
On Sunday evenings we open our home to the youth group. Before Covid hit our home we were gathering in the driveway or in small groups in the basement (separate outside entrance) so the teens wouldn’t be in contact with our boys or their living areas. Now that the kids have sailed through Covid, by the grace of God, we have gone back to opening the whole house to the group. We cook a large dinner and do a Bible study with them after they eat. As much work as it is, we really enjoy hanging out with them each week and speaking life into their hearts.
But tonight we kicked off a new adventure by opening our home for a family Bible study night. We had 9 families attend and had the chance to fellowship then dig into the Word with our families. Interestingly enough, the thought of having adults in the house instead of just teens made me overthink everything. Teens are easy going as long as you feed them decent tasting food. And Jake holds a men’s Bible study in the basement on Saturday evenings but I know they aren’t seeing dirty baseboards or spotty windows.
But as much as I desired to clean the house top to bottom, my energy level was completely shot. This weekend we also had an overnight youth girls retreat where I ended up staying awake most of the night with 23 girls. I snuck away to put the kids to bed but they boys stayed wired and awake until after 3am. Then there is that evil time change! I have been running on tiny shreds of energy today and cleaning the house found it’s way at the bottom of my list.
As I looked around the house today and managed to eagle eye spot every crumb, every spot on the floor, every tiny dried cheese shred from Levi’s wanderings. I started to re-prioritize my list which would have taken away from my prep time for the lesson. But immediately the Spirit directed me towards the story of Mary and Martha to remind that the devil can even use simple things in our lives to steal focus away from Him.
38 Now as they were traveling along, He entered a village; and a woman named Martha welcomed Him into her home. 39 And she had a sister called Mary, who was also seated at the Lord’s feet, and was listening to His word. 40 But Martha was distracted with [a]all her preparations; and she came up to Him and said, “Lord, do You not care that my sister has left me to do the serving [b]by myself? Then tell her to help me.” 41 But the Lord answered and said to her, “Martha, Martha, you are worried and distracted by many things; 42 but only one thing is necessary; for Mary has chosen the good part, which shall not be taken away from her.”
But only one thing is necessary.
That sentence is so poignant to me.
This weekend at the retreat our speaker focused on “6 True Points About Your Life”. I was so thankful for such a pertinent topic to these young girls; in the same way that I was tempted today to focus on the wrong thing, our teens today are often re-directed to things that don’t truly matter. Yes, we stay “busy” and sometimes even stay busy doing church-y things. But how often are we taking time to sit at the feet of Jesus and make eye contact with Him?
In this world we are constantly pursuing things that are of little importance. Titles, accolades, awards, notoriety. But as Christ reminded Martha, these things are not necessary. But connection with the Father is. It is in that connection that we find something the world can never take away from our hearts.
So this week I am evaluating my “necessary”. Our mind is exceptionally good at labeling things as necessary. Ultimately if something is trumping my time with God then maybe it needs to slide over into the unnecessary column. And recognizing and changing those misplaced priorities in our lives is itself an honoring gift to our God.
I had 100% intended to write about something completely different this evening, but I guess that is meant for another day! This momma is running on empty and is headed to bed. Thank you for taking the time to check in on our family.
I am having some technical difficulties with our internet and it is already after midnight so I apologize in advance if this post seems choppy and short! I am going to try to type it out on my phone.
Let’s kick off this post with a praise report photo:
While it isn’t news that Levi no longer requires oxygen, this moment was huge for me as his momma. It has always brought me peace to know that tucked into the back closet there was a hospital grade oxygen concentrator and lots of spare tanks. I always worried that if the boys contracted Covid or have another major illness that they would require some supplemental oxygen and it might keep us from an ER/hospital trip. We have a portable concentrator we purchased with some grant money a year ago but it isn’t rated to do high liters of oxygen.
But in an effort to step out more in my faith, I called the oxygen company this week and arranged for them to pick up Levi’s equipment. I immediately started regretting the phone call after I hung up as I formulated the “what ifs” in my brain. But watching it get loaded onto the truck and seeing the empty oxygen closet in the bedroom lifted an invisible load off of me. It reminded me that we are witnessing miracles in Levi’s life and airway.
As you can see from the photo, Levi was very stressed by the whole ordeal. Maybe he sensed my hesitation. He didn’t understand why the man was taking them all off the porch and putting them into his truck.
Malachi has had a great week with his seizures. They have calmed back down and shortened back to their normal, but his sleep cycles are still very much messed up. It is rare for him to be asleep by 3am, and more often it is 5am before he completely surrenders.
This week he has been smiling in a new way that I have never seen before. I think it I had to describe it I would say it is a smile of contentment. It has been melting my heart. He has even been smiling in his sleep.
Transparency moment. Initially I was smitten with the new smiles (and still am). But then I started to wonder if this was some special gift from God right before something bad was going to happen. Yes, I am irrational. But the thought of how and when Malachi will leave this earth is something that always lingers in the back of my thoughts. I wake up at least three times each week with a deep ache in my gut thinking that Malachi is too quiet as I slowly turn to see if he is still breathing.
I recognize how unhealthy these thoughts are and I do my best to squash them when they rise up. It is in these moments that I realize that control has more certainly become an idol in my life. And the lack of control causes my heart so much unecessary distress.
But then I remember that Malachi lives a life full of miracles. And it is in the moments that I can’t control that I get beautiful glimpses of God.
Here is a photo of Malachi when he was 1 month old (28 weeks adjusted) and had just reached 2 pounds. God has preserved this mighty warrior for mighty reason.
Levi has been talking more and more and watching his vocabulary grow is so much fun. I get excited each time he says a new word, and even more excited when it is in the correct context. He has been singing praise and worship a lot with me this week and I took a quick video this afternoon to share with you:
He has also been getting into a lot of mischief and mascara.
Now that the boys have all had Covid we have been getting a little braver about taking them out to a few local places including church. They have been so overjoyed to see friends again and it has been a breath of fresh air for our family to worship together again. We still take precautions and distance as much as a three year old will allow.
The boys had some fun playground days this week with some local friends with a very special connection! The husband is a respiratory therapist at the hospital and works in the ER at the children’s hospital. He has helped us through many many emergency trips and Malachi always recognizes his voice. And his wife was one of Malachi’s NICU nurses when he was a baby. What a special friendship we have!
Malachi and their 4 year old son played like best buds and Levi was smitten with their baby. And she was so tolerant of Levi’s many wet kisses on the top of her head.
As I reflected back that evening on the day I couldn’t help but smile as I got a glimpse of the mysterious ways God connects us with others.
I have learned that there is a dark side and a light side to all situations we encounter. My mood often influences which one my eyes gravitate toward, but acknowledging the presence of good even in the darkest corners of life is what has carried me through some really hard moments.
This is an absolutely horrible analogy, but perfectly fitting so I will toss it at you. Yesterday I turned 35 years old, although sometimes I feel as though I am going on 80. I am very uncomfortable with birthdays as I don’t enjoy a lot of attention, but this year I decided to take a “Leah” day. Frankly I am running pretty ragged these days and wanted an excuse to recharge.
I had planned out the day in my mind, leaving room for naps and wonderfully hot showers in between some of our regular daily duties. Medical mamas don’t ever truly get a day off but a few bonus hours of having the opportunity to focus on non-medical things is rare and special. But of course the day didn’t go as planned; and I couldn’t help but laugh at how horribly it ended. We had a surprise big plumbing issue arise and I spent the second half of my “Leah day” mopping up sewage that had bubbled up in our walk in shower. And you are welcome for that lovely visual haha.
It was midnight and I was sanitizing the bathroom floor for the 4th time and feeling anything BUT recharged. I was focusing on the dark side of the moment, most definitely helped my the fumes the Pine Sol was sending into my nostrils.
And to be honest, looking for the light in that moment was hard for me to do. But I slowly but surely was able to start my list of blessings…that we had a friend with the right equipment to help solve the issue and a heart willing to help with a nasty job. That it happened on a weekend instead of a weekday when Jake would be at work and unable to tackle the fix right away. The fact that I was spending this birthday in my own (stinky) home instead of the hospital again.
Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:16-18
The Bible talks about how important it is that we look different than the world, and that includes our inner thoughts. Looking different than the world starts with our changing our hearts. And one of the best ways I have found to work on changing my heart is found in this verse above. Rejoice always, pray continually, and give thanks in all circumstances.
Think about how much your life could change if you start to focus on these three things. And please know that I am speaking to myself here as well. It is a good challenge for me this week!
Thank you for taking the time to check in on our little family.
The Carroll clan is Covid free and so incredibly thankful to be on the other side of it. I ended up going for another Covid test and added on an antibody test to see if there was a chance I had already had it. It came back positive for IgG meaning I had it in the last three months and negative for the IgM meaning I have not had it in the last three weeks. I must have been an asymptomatic carrier at some point, which completely baffles us. But it does explain how I wasn’t getting it this time around!
Malachi’s seizures essentially paused while he had Covid. He had some of his mild ones each day but nothing significant. But this week they ramped back up worse than ever before. We have been up until 5am several nights this week trying to manage seizures. We keep a “rescue” medication on hand that we are to use if his seizures go longer than 5 minutes, but it slows his respiratory rate so we have to call 911 when we give it. In the second half of this week he had 3 seizures that lasted longer than 5 minutes but I still felt like he was safe enough to not administer the meds. He was having some major tummy aches which were causing the seizures so we made some formula changes to see if we could get it back under control. While he is doing better we haven’t found the perfect solution yet.
When we go through hard nights like these, especially several in a row, we throw all schedules out the window and just focus on daily survival mode. Obviously we are all mentally and emotionally exhausted. But now that Malachi is bigger my muscles take a beating as I try to physically hold him in a safe place through his larger seizures. He is insanely strong during seizures and keeping him from hurting himself or smothering himself is quite a challenge. I feel bad even talking about my physical discomfort knowing that Malachi’s has to be much worse! I can’t imagine what his body must feel like the next day.
But overall Malachi has had a wonderful week. He has been so happy, finding joy in everything around him.
We have been doing lots of family game nights and watching his competitive spirit come alive is so fun. Right now Mouse Trap is his favorite game. He always puts me in the mouse trap when he gets the chance, and steals cheese from Levi or dad. I took a video this week so you could see how well he communicates his wishes to us.
Levi’s energy level seems to increase by the minute. It is fascinating and horrifying all at the same time.
With Jake back at work we do a lot of car naps for Levi. It is only when he is strapped in and has nothing else to do that he will surrender and close his eyes for a much needed nap!
The weather here in east Tennessee was beautiful this week so we spent hours and hours outside. We spent so much time outside on Wednesday that we accidentally got sunburned!
Malachi’s freckles made their appearance for the season. It always makes me smile to see those freckles appear.
We invited friends over to play on the playground and swim in the pool and it was the happiest I have seen both of my boys in a very long time. At one point Malachi was laughing so hard that the neighbor came over to tell us she could hear him all the way on her back porch! I videoed him as he was laughing the deepest chuckle we have ever heard from him.
There are days when I feel like just a caregiver. There are days I feel like a nurse. And there are very rare days I just get to feel like a mom. This week I had lots of “just mom” moments and they were so refreshing to my heart.
Watching my boys play with other children… everyone feeling included and “seen” with effortless inclusion…it brought such a big smile to my face.
Seeing joy pour from the hearts and faces of my boys is something I never tire of. I am so thankful that God gifted Malachi with the ability to communicate his emotions so clearly to us. This life would be much more challenging without affirmations from him.
As I mentioned last week, Jake and I tackled lots of projects in the house while we waited impatiently for Covid to leave. We were able to gather enough materials around the house to bring one of my ideas to life that had been on my heart for a long time.
We spend lots of hours in our main living area. Many of those hours are mentally challenging and my emotions can wander all over the place. It is the room that sees the most variety in my emotions and takes the brunt of my anger. To combat the hard moments we have tried to saturate the room in scripture to help me refocus. There has been a space on the main wall that I stare at often, and I knew there was message I needed to place there with something challenging but couldn’t settle on what it might be.
This week we gave legs to the project and knocked it out with some of the pallet wood from the boys playground crate, some stencil paper, and some extra pant. The sign is absolutely giant at 9 feet long and serves its purpose of catching my eyes and distracting me from negativity.
James 1:2-4 “Consider it all joy, my brothers and sisters, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.
The devil grows stronger in pity parties, and the more you feed your disappointment with thoughts the more it has potential to separate you further from Christ. I have found this to be so incredibly true in my own life.
But when I take the time to look past the current struggle and see what it is producing in my life I start to see purpose in the pain. Trials can defeat you or trials can build endurance in your faith. You can choose to view yourself as a victim in your trials, or you can view yourself as an athlete training yourself for something even greater.
Consider it all joy. It is one of the most unnatural things you may ever ask your mind to do, but it can transform your perspective if you allow it. I know that it does exactly that for me on a daily basis. And I hope that one day it becomes more natural that I don’t find myself saying it two dozen times a day!
Thank you for so strongly lifting my family up in prayer over the last few weeks. We are so blessed to have an army of support to lean on. We truly love you all and recognize the part that prayers had in the healing of our boys.
I am happy to report that it seems like we have made it through the worst of our battle with Covid unscathed. I will break it down for each family member to give you an idea of what this week has looked like.
Levi- by far he sailed through it the best, which truly shocked us. We have been told with his airway issues to expect ICU stays with a common cold, so Covid had us very worried. He never ran a fever, and his oxygen saturations were not affected. There were times his saturations were BETTER than his normal, which is bizarre. He dealt with congestion, coughing, and lethargy with his naps lasting up to 3 hours each day. He is on day 11 and aside from sounding a bit nasally he is back to his normal, wild self.
Malachi- he struggled quite a bit mid week with his oxygen saturations but never dipped below 90. The entire week he hung around 92-93. He lost his color for several days and looked very pale and sickly. He never ran a fever, but dealt with a lot of congestion although none of it appeared on the outside…no runny nose, etc. He threw up a lot of mucus and coughed pretty intensely for several days mainly at night. Sleep was rough and one night he didn’t fall asleep until after 5am. His little body struggled for those days, and he was feeling so puny he drooled nonstop. But he has been slowly improving and is on day 9.
Here is a picture from this weekend and you can see how much he has perked back up.
I did end up taking the boys to the pediatrician on Monday morning and had them tested. The pediatrician listened to their lungs to get a baseline should things change and did a covid test. The test came back negative but the pediatrician was confident it was a false negative based on their symptoms and the timeline with Jake also testing positive. They offered for us to bring them back later in the week for another test (they sound around day 5-8 would be most accurate) but we decided it wasn’t necessary. My mother who spent one hour with the boys on Thursday evening tested positive a week later, and she had not been anywhere since she left our house that night. She had not spent time around Jake so we felt confident she had gotten it from the boys.
Levi was pretending to give Malachi meds in his armpit. The hidden side of any sickness in our house in the medications. Without any sickness I administer 12 medications a day between the two boys. With covid we added lots of pain meds which increased the boys meds to 20 and at least 5 more syringes for water flushes. Lots and lots of syringe washing took place this week!
Jake- Covid knocked him down! He said it felt like a very bad flu, but it was like no other sickness he had encountered. Jake never ran a fever but it took over his chest and lungs for the first few days and moved upward from there into his head. He had a nasty cough that sounded very similar to croup. He “bark” coughed at night and had to sleep on his stomach to keep his lungs from burning. He dealt with achiness and headaches all week, and still has a lingering headache that won’t go away. He slept 10-11 hours a night and napped a few hours throughout the day. We started some major vitamins the day after he tested positive which we are assuming helped a bit. He is also on day 9 and through the worst of it. He will be able to return to work on Wednesday, and by the grace of God he had several snow days this week so he will only have to take 4 days off total for all of it.
Mom- I spent the week getting coughed on, sneezed on, and covered in covid cooties. We took zero precautions since the boys were all sick and just assumed we would all get it. Levi and I have even shared drinks this week. But I am still negative y’all! It is baffling to us. I did a PCR test the day Jake tested positive and it was negative. I tested again on Thursday which would have been a full week since Levi’s first symptom and that test also came back negative. I have had zero symptoms, although all week I have been reading into anything new and different in my body. One evening I thought I was getting a sore throat but by the morning I was fine. I also had major fatigue but it was the day I was up with Malachi all night and was running on two hours of sleep. A little bit of rest took that fatigue away.
I feel like God has most definitely put a hedge of protection around me knowing that I would need to care for three sick boys. It definitely defies logic. I have read that type O blood handles the virus better than others but I am not type O. I have some weird blood, and maybe that has something to do with it? When I had Malachi I lost a significant amount of blood (1.5 liters) and required 5 blood transfusions. One of those introduced a kell antigen into my system and my body has created antibodies for it. If I should ever need a blood transfusion again I have to tell them this information because more kell positive blood could make me very sick. I donated blood a few months ago and they sent me a kind letter thanking me for my donation but telling me that they can’t use my blood for anyone other than me so donating again wasn’t encouraged haha. Maybe my weird blood protected me from Covid???
So Jake, Levi, and Malachi will all be done with isolation on Wednesday, but because I never tested positive I am still in quarantine until March 5th. I find myself stuck between being grateful I didn’t get it and being disappointed we will be locked in the house even longer. I don’t mind being home, but the boys miss our errand running and grocery pickups. I have been taking them on lots of drives around town to give them different scenery but they are definitely reaching their max of home life. It has been too cold to enjoy the playground so the cabin fever is setting in.
This is a photo of Levi being told he couldn’t go out to the playground in 20 degree weather. He put his jeans on and everything thinking it would give him more negotiating power if he was already dressed for the outside world. Poor buddy. I feel semi-bad for taking the picture but he was just so darn cute. And showing him pictures of him crying weirdly makes him stop crying and start laughing.
We have been playing lots of games as a family and also making up lots of games, Jake and Leah style. Like how long can we keep the balloon in the air without it touching the ground, with one of us using Malachi’s arms instead of our own. 81 is the record by the way. Lots of silliness, lots of laughter, and lots of movies. If we have to be sick, at least we are home and with each other. We have also been tackling the things we try to avoid, like steam cleaning carpets and draining/cleaning the therapy pool.
We have been so blessed this week by lots of friends dropping off goodies and meals. Lasagna, soups, salmon, fresh eggs, banana bread, pizza, and so many other yummy things. We have definitely not lost weight through this sickness haha.
While there were several moments of worry for me this week I tried desperately to take every thought captive and just focus on the next hour. The days blurred together with this mindset but did keep me from spiraling down the rabbit hole with worry. I believe with all of my heart that God protected our family in a miraculous way. With both of the boys having major lung and airway issues things could have been much much worse.
When it comes to Bible translations I am a NASB or an NIV gal but I really love studying different translations when it comes to specific verses. It intrigues me how the slightest change in words can paint a whole thought in my mind. For tonight’s devotional I want to pull the verse from the King James Version.
1 Corinthians 10:5 Casting down imaginations, and every high thing that exalteth itself against the knowledge of God, and bringing into captivity every thought to the obedience of Christ;
I myself am guilty of tossing around Biblical phrases like “take every thought captive” but not fully understanding the whole verse. And when I looked at the verse in it’s entirety it blew me away as it pinpointed two of my biggest hurdles…my imagination and my pride.
Imaginations can be such beautiful things as they allow you to picture the impossible. Imaginations allow for belief in miracles, and they teach your brain to entertain the unseen. But like anything else in our lives, they can also lead us down sinful paths and lead us to darkness.
I have always had a vivid and big imagination. It is a detailed one that can construct whole books if I allow it. But in my life right now my imagination can direct me towards all the worst case scenarios with each of my children. Unfortunately I have so many mental backdrops where bad things have happened, that replacing the timeframe and ages of each of us in those scenes isn’t difficult to do. As this verse reminds me, there are moments when we are called to cast down our imaginations.
We are also called to cast down “every high things that exalteth itself against the knowledge of God”. This one hits a littler deeper with me than the imagination one, as it touches my pride. I fully believe that God holds my family in the palm of His hand. I also believe that His plan for my children is so much greater than my own. So why do I challenge Him when I *think* that His plan isn’t panning out? Why do I hand situations over to Him only to grab them back in prideful fear, thinking that I can do it better than He can. Fear is the main motivator but either way it is in these panic moments that we miss opportunities to show our undefiled love to the Father. We miss a big chance to honor His lordship in our lives.
Finally, the “take every thought captive” part isn’s just a self control challenge. It has a bi-line we often overlook. The verse tells us to bring those thoughts to the obedience of Christ. I have been rolling those words around in my mind. It reminds me that, as children of God, our actions AND our thoughts must be obedient to Christ and the scriptures. This does not come easy to me. My inner thoughts most definitely do not always fall under the obedience of Christ. But what a good challenge to focus on, and what a necessary weapon to sharpen while my family is in a safe place with their health.
I encourage you this week to look that scripture up in the many different translations and see what piece of it God wants you to cling to and focus on. I love how living and breathing the Word of God can be.
Please continue to pray that we progress toward good health and that there are no lasting effects of this virus. And please pray that God grants my children patience and sanity as we stay home for another few weeks.
The Carroll crew officially has COVID. I feel like I just heard each of you gasp all the way in Tennessee haha. If you have been following our journey for long you will recognize what a big deal this could potentially be for our crew. I will summarize a bit of the journey so far, but everyone is at home right now and managing it well.
Early this week the boys had several specialist appointments at the hospital outpatient center. We were there multiple days for multiple appointments, and keeping Levi contained in the rooms while holding Malachi was quite the struggle. At one point he laid on the floor in a fit and all that was running through my mind was “Well, here come the germs!”
By late Thursday night he had a hint of a runny nose, and by Friday he was snotty and coughing. We suspected it was just a cold based on past sicknesses with him but stayed away from others just in case. We started hourly temperature checks and oxygen level checks for all of us and crossed our fingers. Saturday morning Jake woke up and had a slightly sore throat. We figured he had picked up whatever Levi had since he often sneaks sips of daddy’s drink so we scheduled a test to get Jake tested.
As we drove over Jake said “I will be shocked if it comes back positive, because I really don’t feel bad.” Sure enough, he got a positive result and sure enough we were shocked. I immediately called a local place that was doing PCR COVID testing (the send off ones) to schedule a test for me, and that came back negative. So far, I am still feeling fine and don’t have any signs of sickness.
Levi continued with his coughing and congestion and sounds sick when he talks. He is breathing great, praise the Lord, and his oxygen saturations have been impressive, even for normal Levi, hanging around 97. Malachi started with some diarrhea on Saturday night and began coughing. He is the one I am most concerned about so far as his breathing has been shallow and faster than normal. His oxygen level is usually around 95 and has dropped down to 93 so we are watching him extremely closely. His seizures have not been worsened at all. And neither boy has had a fever.
Jake went from shocked from the positive result to totally agreeing with it as the day progressed. It is in his chest and lungs and he says it is different than any sickness he has dealt with before. When he was trying to sleep last night he said his lungs burned like he had been running. Today he started lots of new supplements and vitamins as recommended by the doctor. His oxygen saturations have also been normal and he is not running a fever.
We are in completely new territory with this sickness so we are praying each day and believing in God’s protection over our family. My mind keeps mentally planning for having to take one or both kids to the hospital at any moment, which is a weird spot to be in. Each meal, each shower, each night in my own bed I find myself wondering if tomorrow will be a different setting or circumstance. I will be taking them to the pediatrician tomorrow to get a game plan in place should things change. We aren’t paralyzed by fear, like I assumed I would be. We are just taking it hour by hour and praying to be showered with God’s peace and good rest for all.
Everyone is in good spirits and during the daytime hours there are lots of giggles and smiles. They crash hard and fast for naps. Night time is proving to be difficult with lots of coughing and subsequent pain.
Now for some pre-COVID updates…
The boys met with their neurologist and the appointment went great. Malachi sees an epileptologist for seizures, a neurosurgeon for his shunt, and a neurologist for the other things his brain does to his body (cerebral palsy mainly). He also goes to Vanderbilt for the orthopedic and spinal surgeons so mainly we use the neurologist to talk about his tone.
When the brain is damaged in certain spots it can cause hypertonic muscles (super tight) or hypotonic muscles (super loose). Malachi has extensive brain damage and therefore has “mixed” cerebral palsy. Some parts of Malachi are tight, like his hips, ankles, and knees. Some parts are loose like his abdomen, neck, arms, etc. There isn’t a way to “fix” either, but there are ways to manage them. For tight muscles one of the common treatments is injecting botox to relax them a bit. Or some surgeons will do tendon lengthening to help relieve some of the tight areas. Malachi doesn’t really need any of those corrections right now, but the neurologist wants to see if starting him on a small dose of a muscle relaxant called Baclofen will help Malachi at all. It could have the opposite effect and make his loose muscles even more loose, and in rare cases it can increase seizures so we are proceeding with lots of wariness and caution.
Once we are back to 100% health I will start Malachi on the oral medication and we will see what happens.
Levi also sees the same neurologist, and for him the conversations go a little bit differently. When Levi walks with his braces in his shoes you would not likely recognize there are any issues. But when the shoes come off you see how much his ankles are affected by his cerebral palsy. He has hypotonic (loose) CP and it seems to be getting worse in his feet, but slightly better in his core.
The neurologist was legitimately shocked by how well Levi is functioning in spite of his CP. He truly couldn’t believe how much his braces change his abilities. He is very pleased with how well he is doing with a little bit of support.
That is the really cool thing about Levi- he hasn’t ever known any different and has taught his body to cooperate with whatever he wants to do. Seeing his resilience makes me so proud of him.
We also met with Malachi’s neurosurgeon this week to check his shunt function. He did a quick test by pushing on the machine and felt confident it was still functioning as it should. He agreed we could wait to do any further imaging for a bit.
As you probably remember, Malachi was an angry little elf at me for not taking him to the zoo on his birthday. Our car had some mechanical issues the night before and we couldn’t go. As promised, I took him after our early morning appointment on Tuesday and we got there shortly after they opened. I had to google the place to make sure they were even open as we were the only car in the lot! We had the zoo to ourselves which was great for my germ conscious mind (oh the irony).
But unfortunately going so early meant that many of the animals weren’t awake. Malachi looks forward to a few things each zoo trip:
The jaguars are hands down his favorite. Right before we got to the enclosure, which was obviously our first stop, they gave the monkeys next to the jaguars Valentine’s day bags with popcorn inside. The monkeys were super excited, thereby distracting Malachi’s jaguar friends and they wouldn’t come down within his vision range. He was devastated, but I promised him we would try again before we left.
Feeding the giraffes. But on that day there weren’t offering that option. Boo.
Riding the zoo train. But that wasn’t running that day either.
Talking to the parrots. But they were in their inside house enclosed fully by glass and not interactive.
Petting the goat’s horns. THAT we were able to do, and one of them even rubbed his horns on Malachi which made his giggle.
The crow. Yes, that sounds weird. But he talks! Only that day he was as cranky as Malachi and didn’t say a word.
As we continued winding through the zoo Malachi was getting more and more disappointed. It was almost comical how things just weren’t working out over and over and over again.
But then we had a saving grace moment that they boys still talk about 12 times a day. The chimps.
As we visited the chimps several came over to the glass to see Malachi and Levi. Then it happened…one of them pooped right in front of the boys, stuck his finger in it, and ate it. I was disgusted, as I am assuming you are now after that mental picture I just painted. But as I narrated the scene to Malachi he was overcome with joy and laughed until he couldn’t laugh any more.
Who knew that chimp poop would be the birthday memory we truly needed. Malachi also thoroughly enjoyed the pressure washer that one of the employees was using. I told him we could pretend it was elephant trunks spraying the other animals and he loved that storyline.
We spent lots of hours on the playground this week and Levi is getting braver by the day. Malachi has been trying all the different swings, trying to find a favorite.
We are entering a week of unknowns. This week is annually a really hard one for me mentally as it marks lots and lots of big surgeries and ICU stays for the boys. Malachi’s stomach perforated in the NICU and he had to have an emergency surgery we were told he might not survive. A year later he contracted the flu and the situation became very dire with a PICU stay. And this was the week for three surgeries for Levi on his complicated journey. I keep flashing back to doctors telling me that when Levi gets a cold he will end up in the ICU, and now here we are with COVID. I can’t predict what the next several weeks hold for my warriors and the lack of control is very hard for me.
I read a quote this week that has been on my heart all week, and with the new updates it seems fitting.
“When you are hanging on by a thread, make sure it’s the hem of His garment.”
There is a beautiful story in Mark 5 that talks about a woman who had been dealing with a bleeding issue for 12 years. The Bible tells us that she had been to several doctors and spent all of her money chasing treatments but only grew worse.
When she heard about Jesus, she came up behind him in the crowd and touched his cloak, because she thought, “If I just touch his clothes, I will be healed.” Immediately her bleeding stopped and she felt in her body that she was freed from her suffering. At once Jesus realized that power had gone out from him. He turned around in the crowd and asked, “Who touched my clothes?”
“You see the people crowding against you,” his disciples answered, “and yet you can ask, ‘Who touched me?’ ”
But Jesus kept looking around to see who had done it. Then the woman, knowing what had happened to her, came and fell at his feet and, trembling with fear, told him the whole truth. He said to her, “Daughter, your faith has healed you. Go in peace and be freed from your suffering.”
When I read this story I can’t help but relate to the desperation of this woman. There are times that we exhaust ourselves chasing after all the earthly solutions we can think of. We research and do all of the rational things we can find. But it still just isn’t enough.
But it takes those fruitless pursuits to build a strong faith in us. It takes those moments of repeated failures to remind us that sometimes the answer lies simply in believing that God’s power is enough.
As we enter a COVID week I am going to do my best to stay close to the hem of Christ. It is easy to let worry and my imagination distract me, but it takes great discipline to continue to remain in Christ during the scary parts of life.
Please pray with us this week that God’s power is seen yet again in the life of my boys. Pray that we get through these next few weeks unscathed and free from hospital stays and major issues. And pray that God’s peace continues to cover all four of us, reminding us that He has numbered our days we won’t be called home before He’s ready.
It is hard to believe that 8 years have gone by, but as I reflect on those years I can’t help but realize how blessed we are. More on that in a bit.
We have a strong willed, opinionated, resilient, and kind hearted warrior. He communicates so much to us in his own way, whether it be his sign language cues or his eyes rolling when he is annoyed with me. You never have to wonder what Malachi is thinking…ask and he will guide you to his answer.
In fact, Malachi stayed very very angry with me for most of his birthday, which I felt terrible about. I had told him that we would make the trip down to the Chattanooga zoo to see his jaguar friend for his birthday. Unfortunately the day before the check engine light came on in the van and instead of going to the zoo I had to take it to the car shop to make sure it was road worthy. I explained to Malachi that we would go to the zoo next week, but the disappointment proved to be too great for him to let it go. He stayed angry most of the day, lightening up a bit when dad came home.
We spent his special day unveiling little surprises throughout the day…punch balloons, silly string, decorations, presents, and even a chocolate milkshake. We had some friends come by and bring a very special and thoughtful present for him when he is in his chair. They also brought their dog, which perked up his spirits.
And we spent lots and lots of time on the PLAYGROUND! Yes, it is fully assembled and it has been such a big blessing already in our lives. We weren’t able to leave the house much this week but having the playground right outside gave them an adventure to look forward to every day.
Special needs motherhood is tricky. So many times I have mentally envisioned something that will be “perfect” for Malachi only to have the idea totally flop. Then I have to deal with disappointment and regret, which makes me a bit shy about pursuing other “great” ideas that my mind comes up with. You can’t predict what will work or not work with Malachi until you try it. I was worried that my excitement over the playground idea might prove to not be as amazing as my mind imagined.
But I have been so pleasantly surprised that this playground is proving to be even more amazing for the kids than I ever imagined it would be. Malachi is in his happy place when he is swinging, and seeing the two of them do something together so easily makes my heart swell.
As I watched them on the swing this week I flashed back to a specific meeting with Levi’s doctors where I was talking to them about the visions and goals I have for my children. They were pushing very hard for me to sign off on a trach for Levi, something that would bring a whole new level of complication to our world. I remember explaining through tears that there weren’t many things that they would be able to do independently together, and I wanted to preserve those things as much as possible. I will never forget the blank and cold eyes of the doctors staring back at me when I shared my dreams of them being able to swim together and play together device free.
I couldn’t help but think about how far they have each come in their medical journeys. We aren’t exactly device-free but they can play together free from machines, wires, and cords. I don’t know how many years this machine freedom will last, but I am so thankful that these early years for them are as normal as we can make them. As they were swinging this week together I walked close to push them and Levi held his hand up and said “No, good”, clearly not wanting me to interrupt their special brother time.
We are so thankful to the work crew that helped make the playground come to life. They have spent countless hours preparing the space and assembling it all, and the gift of time is so impactful to our crew. Jake is capable of doing these things, but time with projects takes away respite time for mom and time with the boys. Malachi’s seizures ramped up again this week and many nights I was getting 3 hours of sleep. Jake being able to take them for an hour after work to let me nap is vital to me being able to be caregiver.
After Malachi’s angry birthday day I promised him we would let his birthday extend into next week. We are getting a burst of warm weather and plan to have some friends over to play on the playground. He will also get to go to the zoo on Monday after horse therapy.
We have a busy week ahead with lots of appointments in 2 days between the two of them, but thankfully many of those are scheduled back to back. Each boy will see the neurologist, the cerebral palsy clinic, horse therapy, and virtual feeding therapy. And then we will head back to the hospital again bright and early Tuesday morning to see Malachi’s neurosurgeon to check on his shunt. This is an annual appointment, and I think he is due for some imaging on the shunt (CT or MRI) but I don’t think they will allow Levi in those areas with COVID so we may have to plan those for another day.
Levi had some homework this week from his feeding therapist to try to eat a McDonalds happy meal. We have never had a child that eats typical food so it was the first time I ordered one as a parent. We tried the chicken nuggets and while he enjoyed the taste and taking a bite out of each he wasn’t able to swallow it. But he was very excited about the box of goodies.
Malachi had another fun surprise last night when the neighbor friends brought a guinea pig over to meet him. Malachi can’t control his body very well, but we watched as he focused so hard on opening his fingers and being as gentle as he could be with the animal. It took so much effort for him, but it was truly amazing to see. He was so happy!
Levi has been a very typical three year old this week, swinging the pendulum of toddler emotions. Now that he has playground time in his day, he also has to deal with playground time ending each day when momma says it is time to go inside.
But he is also quick to move on.
This week I have been thinking so much about perspective. We live in an area tucked in the mountains. At the base of the mountain where our house is we may get a dusting of snow, but a 15 minute drive upwards will take you to several inches of it.
As I stared at that snowy mountaintop this week while I basked in the sunshine at the base I thought about perspective and how much it can change with just a few miles. I could call up a friend that lives just a few miles away that could be completely snowed in.
C.S. Lewis has a quote that I love: “What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”
That mountaintop covered in snow it such a good representation to me about the day Malachi was born. From where I was standing that day I saw tragedy. I was overwhelmed by the circumstances around me and terrified of what I was seeing. I was the “sort of person” that could only see the darkness of the situation and clung to the statistics and facts the doctors were speaking over my son.
But today I am at the base of that mountain and I see what a blessing Malachi has been in our lives. He has changed my faith and challenged my preconceived notions of what a blessing in life truly is. I am the “sort of person” that sees the handiwork of God in even the most destitute situations. Through Malachi I have been given new eyes.
The mountain that we face with Malachi is the same giant mountain. But our journey has taken us to a place where we can look at it from a different perspective and admire it’s beauty instead of focus on it’s daunting presence in our lives. The mountain hasn’t changed, but we sure have.
I have faced an incredible amount of mountains in my life, most of them before Malachi was born. The Bible always talks about our faith having the ability to move mountains and portrays them almost as a negative thing. But God has been showing me over the last 8 years that some mountains are not meant to be moved. Some mountains are part of God’s landscape for our lives and their presence in our lives is meant to be embraced instead of feared, as they remind us of our need for a guide.
I lift up my eyes to the mountains— where does my help come from? My help comes from the Lord, the Maker of heaven and earth.
He will not let your foot slip—he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.
The Lord watches over you—the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night.
The Lord will keep you from all harm— he will watch over your life; the Lord will watch over your coming and going both now and forevermore.
I know many of you reading this are facing mountains in your life that you have grown to hate. But maybe it is possible that you are seeing that mountain from the wrong perspective. Continue to pray over that mountain, declare it to be moved. But also continue to pray that, should God choose to not move your mountain, that He gives you a fresh view of it as He plants your feet in a new spot on it.
Today I am thankful for Malachi’s mountains. I am thankful that through this winding, unpredictable journey that we are on we have come to know God on a deeper level…all thanks to a 1 pound 12 ounce baby born without a heartbeat who has never spoken a coherent word.
Happy 8th birthday to our warrior Malachi. And thank you Lord for choosing to share him with the world another year. What a gift you are to the world.