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

 

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):

⁴ Love is patient, love is kind. It does not envy, it does not boast, it is not proud. ⁵ It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. ⁶ Love does not delight in evil but rejoices with the truth. ⁷ It always protects, always trusts, always hopes, always perseveres.⁸ 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,

Leah