Levi is “helping” me type this post so if something seems amiss it is likely the result of his crazy fast raccoon hands.
Which leads me to the next two words: separation anxiety. Part of me feels flattered that Levi wants to be touching me 24/7. Then the stressed out mother side of me can’t quite figure out how to appease his 16 month old demands and keep up with Malachi’s needs.
The ever creeping in mommy guilt tells me that this is a result of his nearly 5 month hospital stay in Cincinnati. No child should ever have to wake up and not have mommy close by to comfort him. I have to purposefully not allow myself to mentally go back to those months- it puts me in a dark place and reminds me that I couldn’t be the mom I wanted to be for both of the boys.
We have set up Levi’s crib just a few feet from my side of the bed so I can watch him closely at night. He is hooked up to all of his monitors but I am still an anxious mess with the wire management and safety issues. Last night I woke up around 3am and he was silently leaning as far as he could, arm through the slats of the crib to try and touch me. At first it freaked me out then I couldn’t stop laughing. Sweet little Levi.
I invested in a portable baby play yard for him, particularly when I am at work. He discovered the copier recently and loves to open and close the drawers when mommy is printing important papers. Thankfully he tolerates it pretty well as long as he can see me at all times!
This week we have started trying to get Levi used to a feed backpack. He is on his feeds for 18 hours a day and chasing after him to make sure the bag doesn’t get caught on things when he crawls is increasingly difficult. If we can get him to start wearing his pump and feed bag then that safety factor is eliminated. It didn’t go so well, but we will keep trying! And ignore the mess in the background of every photo I post. Toddler life.
Malachi had a great week that morphed into a rough weekend. He woke up on Friday night with a fever that stuck around through the weekend. He also has some respiratory junk going on causing his seizures to increase. Even when he is sick, he stays in great spirits so we have been camping out at home all weekend watching cartoons and playing with toys. Lots of Mickey Mouse Clubhouse “Hot Diggity Dog” dancing.
On that note, there are a few cartoons we avoid because they have so many physical commands, like “Everyone get up on your feet and jump!” We never want Malachi to feel the sadness of not being able to do what they ask, as he is very aware of what they are asking him to do.
One of the shows we limit watching is Little Einstein. He LOVES that show but they ask for your help to power their rocket. You have to pat your hands on your lap and increase the speed to get the jet to go. With Malachi’s vivid imagination he takes these tasks very seriously so we always make sure to help him with the actions.
Since he hasn’t been feeling well we thought we would treat him and let him watch several episodes. At one point I forgot to pay attention and help him power the rocket, and he wildly started hitting my leg to remind me. It is in these moments that I see the excitement of a six year old shining through.
He has been extra opinionated about what he wears lately, which is also fun to see. I give him two options for each thing he gets to pick out: his tummy tube dressing, his shirt, and his bib. He uses his NO sign to tell me which one he doesn’t want. He takes such pride in what he picks out to wear and we love giving him the independence of making that choice. As you can see, we are pretty biased towards superheroes right now.
Both of the boys rocked their appointments this week! Malachi’s hippotherapist has been blown away lately by how well Malachi is progressing. She told me with wide eyes this week, “He is just a completely different kid!” This week he got to feed his horse some treats which brought a big smile to his face!
Malachi had an appointment with his epileptologist (neurologist that specializes in epilepsy). This was our first appointment with him since we started Epidiolex (the CBD medication) about 5 months ago. We talked about the pros and the cons that we are seeing, and how mostly it is all positive progress. The CBD medication can mess with the absorption rates of other anti-convulsant medications, particularly the one that Malachi takes at night. We are going to try to wean that one a bit, watching him closely for any increase in seizures.
The weaning process is always tricky. And with his sickness hitting at the same time as our med change I am not sure what to blame.
Whenever we have appointment days in Chattanooga I try to find something fun for the kids to be excited about. We have an annual pass to the small zoo downtown and the weather was beautiful so I told Malachi we would stop by to see his jaguar friend.
Here is a photo with the new anteater.
Levi rode in his big boy stroller for the first time at the zoo and the perspective changed things a bit for him. He was terrified of every animals he saw, screaming when they came close to him. The shrieking made Malachi laugh, so between the animals and his wild brother he had a wonderful time!
This picture of them looking at the chimpanzee sums up the emotions well. Curious Malachi, angry Levi.
His jaguar friend was sleeping in the sunshine, and Malachi can only see the animals when they get close. He was visibly disappointed that he couldn’t see him so we set out to find an animal that he could see. His second favorite animal there is the snake, but only because they let him hold it one time. Third on the list is the black crow….random I know. But on our first ever visit to the zoo the crow asked Malachi “Where do you go to school?” I genuinely thought I was on a hidden camera show and asked a worker about it. She explained that the crow had picked up several sentences and words and could actually talk quite well.
Malachi likes to shout HI to the crow, and without exception the crow always talks back to him. They are good buddies. And of course, Levi was terrified out of his mind that the bird talked which is guess is totally relatable. Needless to say, our zoo excursion lasted about an hour.
I always thought I would be a frugal, hard nosed mom that didn’t give in to her child’s begging for overpriced souvenirs from the gift shop. But instead I have become the mom that spends $5 on a llama shaped ink pen, just because it makes Malachi smile to pick out something special. That llama pen brought him so much joy as I told him he and daddy could work on writing their letters later after dinner.
We had all sorts of fun things planned for the weekend, but when Malachi gets sick things come to a screeching halt. Now that he has his g-tube there is a little less pressure on us as we know dehydration won’t become an issue. But we still get anxious and watch him closely for anything that warrants a hospital stay. So far so good.
Sometimes this halt in life is a hidden blessing, as we get to throw all plans out the door and spend time together at home as a family. Friday was a long night for sick Malachi and momma so on Saturday I needed a little mental break. I snuck out (of course when Levi wasn’t looking) and drove out to the Mennonite market to get some fresh bread and cinnamon rolls, picked up a pizza, and headed to a Redbox to rent a movie.
We also caught up on baths, laundry, bill paying, grant applications, and a little bit of cleaning! Check out this post bath hair; curls like his daddy:
Every now and then Malachi’s “Chick-Fil-A post” from 2017 flares back up again on Facebook. I don’t understand technology well enough to know why or how this happens, but I can always tell based on the amount of friend requests I suddenly get. Last week his post flared again getting another 33,000 likes in about three days, taking the total likes on the original post to 246,000. Each time this happens I always wonder what God is up to!
When I think back to the day I wrote that post I laugh to myself…God had been prodding me to write it and I ignored Him. He prodded and prodded and prodded. Usually when He lays something on my heart to write, it has a scripture within it. But this one didn’t mention God. It is literally one of the only big posts I have done on Facebook that doesn’t mention Him.
It was two days after the encounter in Chick-Fil-A that I sat down to write the note to “The mom of three…” (https://www.facebook.com/photo.php?fbid=10100707570909686&set=a.841223295276&type=3)
I choose to believe that nothing in this life is coincidence. There is a plan that God has for each and every one of us, and my plan involved being pregnant and craving chicken that specific day. I look at the number of other special needs moms that viral post connected me with and I see the work of an all-knowing God.
Early on in our journey with Malachi and his extensive medical needs, I remember feeling overwhelmingly alone. As the years went on I started to get glimpses of other warrior children fighting similar battles and my scope widened. I remember seeing a photo of another child with Malachi’s specific HIE diagnosis and being blown away with their physical similarities.
God has used that post to allow me to help encourage other moms all around the world in similar journeys. I have exchanged hundreds of messages with strangers concerning medical diagnoses, insurance, equipment, and Jesus! That support network is something I craved early on and couldn’t find, so to be able to encourage and uplift others is so special to me.
As God continues to unfold the plan He has for my little unique family I can’t help but smile, realizing that this life is the opposite of the one I had planned…but in so many ways it is more beautiful than anything I could have ever imagined. I see glimpses of the nature of God in Malachi. And I see the power of God’s in simply obeying the tiny things he asks us to do….like write a silly Facebook post to the Chick-Fil-A mom.
Isaiah 55:8-11 says
“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the Lord.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
10 As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
WOW! Take a minute and read verse 11 again. If God is calling you to do something- even as insignificant as it may seem- choose to have faith that, with God as the catalyst, it is about to accomplish something big. Like the boy that brought his lunch that day that Jesus fed the 5,000…you never know what meager thing you will have to offer to the Lord that He plans to multiply.
He can take our imperfect scraps, like my Facebook post, and multiply them into beautiful, faith changing moments for others. All he needs is a willing heart, one that trusts that His ways are higher than our own.
My prayer is that God gives you and I opportunities to do the small things and an obedient heart. And that He continues to ripple effect those small things and make a wave that our minds can’t even fathom.
Leah (and the now sleeping soundly Levi)