Peter Pan Peanut Butter

I am having a bit of a writer’s block as I sit here, ready to type away. Our weeks have morphed into very predictable and mundane ones with not a lot of new and exciting information to share! We still spend our days hopping through appointments (6 this week). Malachi has had a great week, so I will share with you some of our tiny successes over the past few days.

Malachi has several different therapies, and one of those is “feeding” therapy. We work on trying to introduce new textures and foods with the goal being to get Malachi to eat table foods one day. In the last month Malachi has started to understand the concept of daddy and mommy sitting down and eating- and he wants some of whatever we have. Well, at least his mind is telling him he wants some. In reality, his system panics when we put anything that isn’t pureed in his mouth. Sometimes doing so will spark a seizure while other times it induces vomiting, so we aren’t always eager to share.

Previously when we have introduced new tastes it has not gone well, but with his increased interest we have been trying to step out of our comfort zone. So this week at feeding therapy I decided to pull out the “big guns” and give him some peanut butter. As you can imagine, it was a workout for his little mouth. We put a dab in and watched in anticipation to see what would happen. He moved that tongue like a champ and when it was gone he opened his mouth wide for more! I couldn’t believe it!

After several small spoon fulls I put the lid back on and switched gears to working on his bottle feeds with the therapist. I asked Malachi “Do you want some ba-ba (bottle)?” and Malachi moved his little lips into a frown! Thinking it was a fluke, I asked him again and his little lips again turned downward. So I asked him “Would you rather have more bite bites?” and his mouth grew wide with a grin as he opened his mouth wide for some more peanut butter. Of course I immediately rewarded his communication with peanut butter, but still was wondering if I was reading into things. I repeated my questions and when I got the same responses from Malachi time and time again I realized two things: 1) He most definitely was communicating his likes and dislikes (for the first time EVER) and 2) that boy loves his Peter Pan peanut butter.

After his success with the complicated gooey stuff we have started throwing caution to the wind and introducing a variety of tastes. He is absolutely loving trying new things and we are one step closer to spoon feeds! He tends to go for the sweet stuff- cupcake icing, cream cheese, yogurt. We even tried a sucker for the first time, and I took a video to share with you:

Maybe it is due to all the sugar we have been feeding him, but Malachi has been one wild man this week. In fact, he was so fired up with excitement this week that when I picked him up onto my shoulder he whipped around and bit my ear lobe! I wish you could have seen the look on his face when he realized what he did…it was a mix of pride and horror as his eyes read “I have never done THAT before!” I was very stern with him and made sure he knew not to do it again, but that made him giggle so I don’t know that my lecture was successful.

When Malachi gets very excited he is incredibly difficult to hold onto. He can engage his “high tone” and actually hold himself up independently but only for a few seconds before he collapses into a heap. The larger he gets the more difficult he is to hold onto, but it truly is fun to see him so happy. Here is a video of his reaction to one of his favorite cartoon theme songs:

This week our church took pictures for the new directory and I had so much fun dressing Malachi up in his church clothes! I snapped a picture for you, but the one the photographer took was much more successful. It only took about 25 minutes to snap a good one haha. Jake and I were both sweating through our clothes by the time we were through.


Malachi has not been sleeping well lately so I have been extra tired and doing extra silly things. For example, when I go to the grocery I push Malachi in his wheelchair while pulling a cart behind me with my other hand. It sounds complicated, but you really get used to the process and learn to navigate corners. It is extremely rare for me to go into a store without Malachi and the “cart caboose” process, so I was overjoyed when Jake sat in the car with Malachi and let me run in alone one evening! As I pushed the cart down an aisle, I moved to the left to avoid oncoming cart traffic and caught myself telling the woman “excuse us”…only to realize there was no “us”. Just me. A single lady with a grocery cart. I laughed to myself as I wonder what was swirling around her mind.

If this were the only occurrence of this that would be one thing…but unfortunately this tends to happen every time I am somewhere without Malachi. It is such a habit for me to talk him through the process of whatever task we are doing. In fact, during our trip to Ohio I was shopping solo and pushed my cart over a door frame to leave. Without thinking, I leaned down toward the cart and said “bump bump” to warn it of our upcoming speed bumps. When I realized that I had just conversed with an empty grocery cart and NOT my son I grew hot with embarrassment. And then I laughed until I cried. They are probably still talking about that crazy lady who talks to carts, warning them of bumps in the path and then laughs until she cries.

Sleep deprivation over extended times can do some crazy things to your psyche haha.

God has been so good to our family. I have watched as time and time again pieces of a puzzle start to meld into their places and I get glimpses of the big picture. It is IMPOSSIBLE for me to deny that God is working in our lives. It is simply not possible. When I look at the blessings we have been given- both monetarily and in things that money can’t buy- I am overwhelmed with gratitude.

As we continue to wander through this “building” we call life, it is so fun to see which doors God will open next for our family. It is that hope of something greater that keeps me going. This week I am finding it easy to live the life of contentment that we are called to live.

It is always so shocking and encouraging to me to hear that people still actively pray for Malachi. I think about Moses during battle when he realized that when he raised his arms, the Israelites succeeded, but when he lowered his arms they began to lose the battle. At one point, weary with exhaustion, his arms began to lower. It was then that his brother and another trusted friend came and held up Moses’ arms for him, when he could no longer bear the pain.

There have been so many times over the last 3.5 years that my arms have grown so heavy with burdens that we have had to hold up to God. And in those weak moments, your prayers helped lift my arms back heavenward. You have stepped in when I couldn’t bear the burden alone, and I am so blessed to know that you are ready and willing to come to our aide. Thank you for continuing to not only PRAY but also BELIEVE in miracles for Malachi’s life.

We love you dearly.

Jake, Leah, and Malachi


The Bed Hog

We have seen such a magnificent change in Malachi this week with his awareness. It is like a cloud has been lifted from his little brain and his processing speed and reaction time have been great. We can see a change in his eyes as well and he has been so eager to look at things and people. I am not quite sure what the change is, but we are loving it!

We have been taking advantage of the moment by pushing him as much as possible with his toys and his talking. While he has many favorite toys at the moment, one of his favorites is a shape sorter. He can’t pick up the shapes but if I place them into his hand he will hold on to them tightly and lift them into the air. If I guide him to the correct slot and start it in, he can independently let go of the shape which is a huge improvement. He is also interacting with some other toys better than ever, and seems to love his new independence.

Malachi requires help with virtually every action and facet of his life. Even playing requires extensive support as you have to hold the toys in a place that he can reach easily. He has a few toys that connect to a switch, and when he is in the mood he can play with that independently while I do the dishes. He is also very motivated by verbal reinforcement and loves to make us happy, so even if he is playing with a toy independently you have to verbally praise him each time he activates it! But it is so refreshing to see the three year old boy inside him playing with toys and knocking things on the ground to hear them go “boom”.

We added a new swing in Malachi’s therapy room this week and it has been a big hit! He clings to the ropes for dear life and gets super silly on the swing. I snapped a few pictures for you to see his enthusiasm.


Therapies were much more successful this week, and he was so excited to be back on his horse. This week was also our first Kindermusik class for the new semester! We took a break for summer so Malachi was thrilled to be back with his buddies. The teacher he has is always willing to accommodate Malachi and even sanitizes and separates his instruments before class begins.We are very blessed by people willing to go the extra mile.

Speaking of extra special people- we have been overwhelmed with generosity over the past few weeks. Sometimes it is the small things, like some sisters from our youth group that brought me a vanilla coke on one of my rough days with Malachi’s sickness…and yes, I cried over a vanilla coke in the mailbox. Or surprise casseroles from church friends on nights when Jake and I coached soccer until 8pm without supper. And there are big blessings, like one of our very sweet blog followers that graciously is now sending us diapers for Malachi. It is so incredibly humbling and inspires us to pay it forward as much as possible.

Malachi’s sleeping schedule is still very chaotic, waking up for hours each night. I tried to explain last week about him sleeping in the bed with Jake and I and how Malachi does not respect personal space haha. I managed to sneak out of bed and snap a picture for you. This boy is like a magnet that is drawn as close as possible to me, regardless of where he starts in the bed. The sliver to the right of him is my “comfy” spot haha! And that little, sweet crooked foot…


So all in all, things are going pretty well for us. Malachi is growing and gaining weight after his rough patch with sickness, and is even tolerating trying new foods. This week he thoroughly enjoyed some mac and cheese sauce, cheesy potato soup, and a few other random tastes. Progress is happening.

This coming week is packed full of therapies, appointments, soccer games, church meetings, and other responsibilities, but we are thrilled that Malachi is stable enough to take on this chaos. Never did we imagine that we would be able to “live life” and care for our boy.

This morning in Sunday School we studied the story of Job. I have always clung to this story as a great example of handling tragedy, and you can’t help but feel that his trials were overboard. Yet in all of it, he did not sin.

I think as Christians we often cling to the idea that life should be easy for us. After all, we love God and try our best to obey His commands. Don’t we deserve an easy life? But the Bible is full of reminders that the Christian life is actually a complicated. The Bible talks about the vinekeeper (God) pruning the vine (Christians) so that they will bear more fruit. Trials are meant to build our faith and strengthen our relationship with God.

It was around this time last year that I found out I was pregnant, and I remember being so excited- even thinking about the ways in which I could share the news with you! It was such a joyful time. Throughout Malachi’s rough start I never had feelings of anger towards God. Instead it was pure thankfulness that He was saving and protecting my son.

But after miscarrying last year, my anger flared. I just couldn’t understand why God would give a blessing and immediately take it away. It made me furious at Him. I looked at all we had been through and thought to myself that we “deserved” a healthy pregnancy. But the truth is, as painful as the experience was, this has been a perfect example of being pruned by God. Oh my how the pruning pained my heart, but in the end I am able to see fruits because of it.

I am sure that there will be more trials in our life with Malachi. Some of them may be minor bumps while others may take us way off course. My prayer is that God will give us strength and clarity of mind to withstand any storm that may come our way. And as a child of God, I am so incredibly thankful to have an Anchor in the storm. I pray that you are able to have that peace during the trials of your life.

God bless,

Jake, Leah, and Malachi


Fruit Bearing

This week we have been slowly reintroducing ourselves to the real world. Malachi is running at 95% and the only thing slowing him down is some leftover drainage, mostly in the mornings. As a precaution we kept him away from the horse barn as I was worried the dust may mess with his throat, but we are planning to start back in the morning. He gets so excited when I mention his horses.

Tuesday we decided to try an outing and went to the grocery store. It is always an adventure as I push Malachi in his wheelchair and pull a cart behind us. This trip I noticed one of the managers keeping his eye on us so I wasn’t surprised when he walked over to say hello. He explained that they had recently ordered a special needs cart for children like Malachi. It is called “Caroline’s Cart” and has a large child seat built into the front with a 5 point harness. We tried him in it and he is still a little small but it really touched my heart that they were doing their best to make grocery trips a bit easier on families like mine!

Wednesday Malachi was acting well enough to try his therapy sessions so I gave him a good scrub down in the bath and got him loaded up- off we went. We made it about 6 minutes down the road before Malachi got  choked on a bit of his mucus and threw up allll over the car. Luckily I had a pack of wipes and a back up outfit hiding in the van so after a quick gas station stop we were back on the road to therapy. He had some trouble with seizures during his session, and was very exhausted from the physical activity as well so we took it easy. After therapy Malachi passed out and momma met my sister in law at Cracker Barrel. Oh how refreshing it was to get out of the house! We had a long and wonderful lunch with adult conversation while Malachi just snoozed away. It was the first time in a long time that I felt normal and it was exactly what I needed.

We transitioned Malachi back into his room this week and words can’t describe how nice it was to be back in my bed! Malachi is still waking up three times a night for a few hours each time, but as long as he is feeling better I can manage. He inevitably ends up in the bed with Jake and I, and literally sleeps with his face pressed against mine. If I can get Jake to snap a picture one of these days it would be sure to make you laugh…each arm and leg is sprawled so that it is somehow touching my body. He is a momma’s boy for sure!

He was extra excited this morning to be back in church. He loves every aspect of Sunday mornings from the familiar voices to the singing. He truly clings to every word of the sermon, listening for Pastor Robbie to say a word he knows. I snapped some pictures of him this morning in his church clothes. The first picture is his model look haha. As you can see, his seriousness did not last long.


So before I start my devotional thought time let me share with you a sweet video…

After my transparency last week I have been doing some serious thinking. I thought about 1 Corinthians 13 and the true definition of love. I also looked at the fruit of the spirit as defined in Galatians: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self control.

As I prepared a Bible study for our youth group I started thinking about the whole concept of a Christian bearing fruit. As I read through scripture I came across Luke 6:45 that says “The good man out of the treasures of his heart brings forth what is good; and the evil man out of the evil treasure brings forth what is evil; for his mouth speaks from that which fills the heart.”

As I read this verse I felt conviction, because even though I don’t consider myself as “evil” I do believe there is truth in that final sentence. What fills your heart comes out through your words. So if my words are not uplifting and of God then I am having a heart issue that requires repair.

I have been reminded that my walk with God right now is not where it should be.

When you a walking in true fellowship with God the fruit of the spirit flows out of you. Those qualities aren’t something you have to strive to do, but rather they are your second nature- the nature of Christ.

Likewise 1 Corinthians 13 tells us the nature of God. God is patient, God is kind…

As Christians we should desire to be a reflection of Christ. To hold all of those qualities. And when we lack in them it is a huge warning sign that our fellowship with God may need some serious evaluation. Which is absolutely true in my case.

You see, when you are a Christian it is not just simply a title you can check on a piece of paper. It is an ongoing title that has to be maintained. It is an active and always growing relationship with our Creator. Too many times we tend to think that once we experience salvation we are set. But sin is a constant threat and staying close to Christ is imperative.

I encourage you to do some soul searching- from one sinner to another. I am very imperfect, and many of those fruits of the spirit are struggles for me right now. It’s a good thing I love a God who craves a relationship with me…so much so that He freely offers me grace.

God bless,

Jake, Leah, and Malachi


Confessions of a Tired Mom

Malachi’s sickness quickly spiraled out of control causing a domino effect in his little body. After my minor pity party journal last week I decided to discard my negative attitude and put on my warrior momma pants and confront whatever sickness was at our door. I managed to put up a pretty good fight, but lost my punch about three days in.

Initially, Malachi simply had an eye infection…we were thrilled to have a normal, uncomplicated ailment to deal with. Eye drops every four hours for 7 days. What a breeze!

The next day Malachi’s temperature started to rise and he began coughing. We watched him closely and started fever reducing meds to make sure his temperature would respond to them, which it did. The beginning of the week was manageable as his fever would lower during the day (with meds) then spike at night to 103. Wednesday we finally got the fever to break and we were so excited to be through the worst of it. But strangely that night he went from 97 degree temp (yep- we dropped too low) back up to 103.4. I took him to the pediatrician suspecting something big, and sure enough he tested positive for strep. At this point Malachi’s nose was also starting to run and he was sneezing uncontrollably indicating he also had a viral infection (the common cold).

Strep is a new one for us, so I felt my heart drop a bit with the words “the test was positive”. Malachi had started coughing incessantly, which the doctor assured me would get better quickly with antibiotics. I had been feeling a sore throat coming on so naturally I assumed I also had strep. On the way home I ran by a CVS Minute Clinic to do a quick strep test which shockingly came back negative.

Malachi started the antibiotics on Thursday morning and almost immediately his system started reacting to the harsh meds. He has had horrific diarrhea that has burned his booty to the point that it is bleeding. We have been on high alert for dehydration due to the water loss and his lack of appetite.

While Malachi’s fever is officially gone, we are still dealing with a nasty cough, intestinal distress, and scarlet fever rash from the strep.

When Malachi is sick, you have to completely morph your mindset to “survivor mode” and understand full and well that it will be a miserable few days. Apart from natural worry about your child, I find myself having to meet demands that are unique to special needs children. Here are a few examples of the madness that ensues:

-Malachi’s body goes limp when he is sick, which requires me holding his body and head up for him. During this process you can expect to get vomited on…frequently. This time around he managed to aim it at my face and caught me open mouthed. Talk about panic mode!! I was spitting all over the floor like a caveman and trying not to drop a vomit covered Malachi in the process. It was a comical sight (looking back…definitely not in the moment).

-After a bath this week I picked up his limp body from the tub and got him up to a towel on my chest to carry him to the living room. This alone is quite the task. I wrapped him up and started the walk only to realize he was emptying his bladder all down me. I just stood still until he finished leaving a giant puddle of urine on the floor and when I started to head back to the bathroom he vomited all over the front of me and rubbed his face in it. I got him back in the tub, washed both him and I off then carried him back out to the living room only to step in poop that had apparently fallen out of him during the vomiting incident. So in just a few seconds we went from clean and calm to crazy + mopping the floors + showers for all + loads of laundry.

-Malachi will cough in his sleep…sometimes non-stop. During these fits, he coughs using his entire body and because of his leg abnormalities he can actually kick himself in the face. Each night he is coughing I have to find a way to lay one of my arms across his legs and during each spell apply pressure to keep them down. He also must sleep at an incline so he can’t choke on his mucus/vomit. Sleep is rare as his spells happen every few minutes. Because of the physical demands during his sleep we always spend sick nights out by the couch.

-He also wants me to hold his hand while he sleeps. This one combined with the one above lead to one very uncomfortable momma. I can’t even count how many times my arms have gone numb this week.

Malachi has been absolutely miserable, each day somehow being worse than the next with new symptoms. Each day we find ourselves having the Emergency Room debate, trying to decide if it is worthy of a visit.


But I need to take a minute and have some times of confession. I don’t write this to elicit sympathy or get advice, but simply to be honestly open and raw with you all. Yes, I am opening myself up for LOTS of judgment but I wonder how many of you are going through similar issues with sins that you are too embarrassed to talk about.

Being a special needs mom can be so, so difficult. More so than I ever imagined. Through this journey I have seen this ugly monster of rage rise up inside of me and rear it’s ugly head in moments of helplessness. This week was no exception.

You all know how much I love Malachi. I have never regretted asking them to spare his life, and I don’t wish for a single second that his story would have ended differently. He is truly a gift from God.

I am not the type of person who cries when stress comes, rather I just get really angry. I was able to process my emotions wonderfully until the third day as I watched Malachi worsen. I would take an hour and a half, meticulously feeding him being sure he was drinking all of the medications I had hidden inside. Within seconds of finishing the bottle he would start coughing and vomit the entire feed on me. Exasperation and anger would overcome me and I would find myself screaming at my sick little boy with so much rage. He would in turn start crying, which would remind me how terribly sick and sad he already was and I would immediately feel guilt for my lack of patience. We would sit and snuggle as I apologized to him and gave him kisses…only to have the same rage happen an hour later.

I would rock Malachi to sleep for two hours, and step by step walk him over to his sleeping chair. I would carefully set him down and move my hands away, and suddenly he would have a seizure and start vomiting…or a coughing fit would begin and he would start crying in pain. And the rage would bubble up again.

It is completely exhausting to be a caretaker of another person for 24 hours a day…add in sickness and the job becomes almost mentally impossible. Malachi has been sleeping a pieced together 3-4 hours a day and spends the remaining 20 hours coughing, running fevers, filling diapers, and vomiting all over me. He will not allow us to put him down for even two minutes to use the restroom. Doing so will cause him to go into a coughing fit or vomit immediately.

I have not been able to slack on my work ethic, as I have to be able to administer 15 different doses of medications throughout the day, documenting fluid intake and body temperatures. I have to read his body cues to know when he is in pain, and try to determine the source of it.

It has been exhausting. And for some reason, I automatically look for others to blame. Most of the blame this week has simply been on poor Malachi. I have screamed so loudly at him that I am sure the neighbors an acre away are concerned. I have thrown things (not Malachi though…no worries). I have cursed out my husband. I have set Malachi in a chair and walked away, cursing under my breath at my sick 3 year old, knowing that me putting him in “time out” would cause him to vomit again. I have literally seen my body shake with rage and felt that I was going to pass out. I have been a person that I hate.

Finally on Friday, the meltdown officially peaked. Malachi was sleeping on my chest and it is too risky for me to sleep when that happens. He is so heavy and his body is so floppy that if I relax he can easily slide off of me and onto the floor. So I held my sick little boy tightly and posted a basic update on Facebook about his health. Immediately the comments started flooding in saying things about what an amazing mother I am and how blessed he is to have me. I felt so much shame and guilt overcome me as I looked back to my horrible temper this week and I cried and cried and cried. Poor Malachi was covered in tears within minutes and I just felt so lousy. What hurt even more was the feeling that I was deceiving all of these people who had made assumptions about what an excellent mother I was, when in reality I had been such a selfish monster.

I love him so much, and the rage I allowed to escape me this week just sickened me. My anger is not necessarily towards my son but rather is focused on this special needs world. I am simply a bystander in a complicated world that I have very little control of.

And secretly I find myself mourning a normal mommy life. I want to be selfish…to go to the soccer tournament I had been so excited about attending. I wanted to go take long naps and be able to tune out my child’s coughing. I wanted to go to a planned Friday night dinner with friends.

I have been thinking a lot about 1 Corinthians 13 (emphasis added by me):

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.Love never fails.

OUCH!! My DECISION to allow my anger to flare (and yes, it is something I allowed to happen) was showing my family the opposite of love. And while there were moments I needed to go scream in a pillow, I should have done those in private and not allowed my anger to affect others. I should have given those moments to God instead of providing opportunities for the devil to take hold of me.

So I guess this is confession time: I struggle immensely with the sin of anger. This is a new sin for me, as I never had issues with it before Malachi’s birth. It is definitely an area of my life that the devil finds glory in, and is therefore something I need to break the chain of.

Fast forward to today…Malachi and I were sharing the couch after a long night of coughing. Couches are small, so we were literally sleeping nose to nose and when he opened his eyes I was the first thing he saw. I said “Good morning Malachi” and that sweet little boy smiled the biggest toothless grin at me. It was the first time he had smiled in over a week, and it pulled at my heart. In his eyes I saw unconditional love in it’s purest form. He was looking into eyes that had recently been filled with rage towards him, but today was a new day and that was all he cared to focus on.

There are so many lessons to learn from that little guy. But this week’s biggie is allowing each day to be a fresh start. Each morning is an opportunity to make right your sins from yesterday. To wake up and decide to break the chains binding you and resolute in your heart to be a better person than you were yesterday.

I would like to ask you all for prayer, not only for a very sick Malachi but also for my struggles with anger. It stems from not being willing to give situations to God, which has always been hard for me due to my pride.

Pray that this week is a better week in the Carroll cabin. Pray that LOVE in it’s purest form is felt this week in our family.

And thank you for allowing me to be vulnerable. May we never be so prideful that we can’t admit our sinfulness.

God bless,


Hunting For the Good

Sigh. That is the only word I can think of right now. In the last 6 hours life got complicated as Malachi started running a temperature and going into sick Malachi mode. This morning he started coughing but everything was checking out okay…no fever, runny nose or symptoms. So we watched and waited and it officially hit this afternoon.

When Malachi is sick his seizures increase and he throws up frequently. This gets tricky as we try to get fever reducing meds in him as well as his regular medications. In the last few hours he has thrown up his medications 3 times, so we aren’t so sure how much actually made it into his system but don’t feel comfortable re-dosing for fear of an overdose.

But let me swing the pendulum from negative to positive and remind myself that Malachi hasn’t been sick since his tonsils and adenoids were removed in March! Praise the Lord.

This week was filled with adventure, which is very likely the reason he is struggling with sickness now. Malachi had all of his regular therapies and appointments, but we also took a field trip to the Creative Discovery Museum in Chattanooga. It is a museum designed specifically to be interactive for children. We armed ourselves with hand sanitizer and braved the germ-filled environment. Malachi really enjoyed the musical exhibits, and I was able to get some cute pictures to share with you!


Malachi also had some big adventure near the end of our week as some of my family members came in town for a visit. We spent our time entertaining the kids (five under the age of 7) and playing cards when the kids went to bed. Malachi was such a trooper and tolerated our late night adventures better than expected…he even took naps allowing both Jake and I to play cards at the same time! But hands down his favorite part of the weekend was being silly with his cousins. Here are some photos and a video of the silliness:


I do have some pretty awesome moments from our week to share! First of all, Malachi slept one random night for 7.5 straight hours…I can’t remember the last time he even came close to this, and it was so refreshing!

Secondly, Malachi was absolutely hilarious this morning during church (yes, we took him…we didn’t see any symptoms so we thought he was safe. So sorry church family). He was listening and clinging to every word the preacher said. Every time he would recognize a word (God, Jesus, love, happy) he would start giggling. He sat with such a look of anticipation on his face. He really liked when he said “God” and would whisper the name to himself each time he heard it. Jake and I have been trying to teach Malachi a prayer that starts out with “God” and he has definitely added that one to his vocabulary.

And finally, we got a letter in the mail this week letting us know his stander has been approved! WOOHOO! This was such a surprise to us and came at just the right time. Earlier this week I talked with insurance about Malachi’s diapers- a process I have been working on for several weeks now. I have spent hours (not overestimating- it has been at least 4 total) on the phone with insurance and medical supply companies trying to get him what he needs. They gave me a list of hoops to jump through, requiring me to get in contact with his neurosurgeon and ask for special letters to be typed, prescriptions, and copies of his medical records. After I completed each hoop they would casually give me another criteria that had to be met and at this point I was too invested to stop now! They called me on Wednesday to tell me that they weren’t sure why no one had told me, but Malachi doesn’t even qualify for diapers until he is 4 years old. The original woman I spoke with had told me 3 years old. So sadly I had spent those hours jumping through hoops for no reason.

I find myself in a world that requires you to put on boxing gloves and fight…even when the opponent is much stronger and much larger than you. So although I lost the match with the diapers, I am finding solace in my victory with his stander!

Jake heads back to work in the morning and Malachi and I will slowly start finding our routine again. It has been so wonderful having him home for the summer.

We could really use your prayers for Malachi to get over his sickness quickly and without complications. We would love to zoom through it without even a doctor visit! I find myself emotionally fragile right now as I don’t know how to help Malachi. There is something so helpless about watching your sick son, not knowing how to relieve the pain.

I have been in a self-pitying phase this weekend as I find myself in situations unique to us. Malachi ended up in bed with us this morning and will only sleep with his face pressed up against mine. As I laid next to him I could feel his eyelids flutter against my cheek and I found myself evaluating whether it was a seizure or simply a dream. It made me wonder about an uncomplicated life where I could simply enjoy the fun curiosities of parenthood…laying with my son and watching him dream. Instead we have to think about where I put his rescue medications and time the eye flutters, praying and hoping it will be a short one.

So this week calls for a re-focus. It calls for a conscious effort on my part to look for the blessings in our life and focus on the good that God has given us. Like providing paper towels to clean up all this vomit (yup- just threw up again) haha! But truthfully, sometimes in life you just have to decide to put your blinders to the chaos and create your own scavenger hunt for the good in life.

I wish I had the time to write a devotional for this entry, but unfortunately mom duty calls! Thank you for checking in on Mr. Malachi, and we would appreciate your prayers this week.

God bless,

Jake, Leah, and Malachi