This week I had a moment…
On Thursday morning as I took my 45 second shower and prepped the boys for their day of appointments, I stared at my closet looking for something to wear. We would be at the hospital so it had to hit all the marks on the hospital outfit checklist…no laces that might drag on the ground, soles of the shoes had to be able to be sanitized, comfortable, dark colored shirt in case of a needed blood draw on one of the boys, dark colored leggings in case one of the boys had an accident that made its way onto me (a freakishly common occurrence).
I was in a mood. A negative, cranky mood and I knew I needed to catch that attitude before it made its way out of the house. I reached for one of my shirts with scripture on it as a way to hold myself accountable to act right.
The appointment was a routine one with the gastroenterologist. It is one of the only specialists that the boys share, which makes life a little bit easier. We went through triage with the nurse, getting the boys heights, weights, and updating background information.
I had popped out of my mood for the most part, but when she started reading the list of surgeries for Levi I felt myself slip right back into that darkness. I nodded with each surgery mentioned…all two dozen of them. Then she started the list for Malachi and I slipped even further into the darkness as I flashed back to the scary moments that surrounded most of those 15ish surgeries. Brain surgeries, heart surgeries, stomach surgeries…
As I listened to that list I just felt like such a failure of a mother. Why do my beautiful children BOTH have to suffer so much? Why can’t I fix them?
I had one of those special needs mom moments where you just feel like you aren’t enough. I would like to blame the devil for those thoughts, but in reality they stem from being told time and time again by specialists that I am not doing “enough”.
The doctor came in and we had a decent appointment. At the end of the appointment I asked the doctor: “So what are you going to tell me I should be doing that I am not doing?”
He glanced up from his computer and said, “Actually I am happy with how they are progressing. Keep doing exactly what you are doing.”
In my world comments like that one are rare. Every single appointment and therapy that we go to I leave with a list of things that I should be doing each day. The list is so long that it is unattainable. If I spent all of my focus on that list I don’t know that I could meet its expectations. So each day I have to choose to live minute by minute and do the best that I possibly can for each of them.
I felt my emotions starting to waver with his words of affirmation. Some days that rising water just sits a little too high on my neck.
We tackled 9 appointments this week, 5 of them falling on Tuesday. This week we will have 7 appointments including a trip back to the dreaded eye doctor. Malachi will also see his epileptologist.
This may be too much information, but Malachi’s urine has started to smell strongly over the last few days, which usually means something is brewing in his kidneys. Sometimes it means a urinary tract infection, other times it can be debris building up in his kidneys and trying to form stones. I am watching him closely to see what steps we need to take next. We hate to overreact and take him in for a urine sample (they usually have to use a catheter for that) but don’t want to under-react and allow him the opportunity to develop sepsis.
Levi has been extremely congested since Friday; we are hoping allergies are to blame. He is pretty pitiful but his oxygen levels have been staying up. He is breathing louder than normal so you can tell there is definitely some constriction in his airway but it isn’t to a dangerous level yet.
Let’s talk about some of the highlights of our week!
Levi has started dancing and it might be the cutest and funniest thing I have ever seen. I took a very short video for you:
Jake and I do not dance and have zero rhythm so we truly don’t know where he learned how to do this. I have watched that clip at least a hundred times and laughed and laughed.
Levi is also learning how to wave goodbye, but it is still a work in progress. Here is a clip:
Malachi has been pulling some late nights with momma. He is still waking up at 4:04 on the dot, but he is staying up later as well. We were hanging out in the living room one night this week and I noticed that he was really looking at me. In the low light of the room he was able to see me well. It is always so encouraging to see improvements with his eyes. You never realize how special eye contact truly is until you have a child that can’t easily give it to you.
Malachi is still absolutely smitten with baby Levi, and the feelings are mutual. We have to keep an eye on Levi because he assumes that Malachi wants to do whatever he is doing and tries to get him involved. Levi is quite the handful these days and drags whatever he can find and carries it all over the house. This afternoon he sneaked up onto Malachi’s lap to show him the can of pumpkin he had snagged from the pantry. When I turned the corner he had gently placed it on top of Malachi’s head like a hat. Malachi loves the randomness and their bond is just heart warming.
Looking at that chubby belly reminds me to tell you that Malachi is 31 pounds now! Before baby Levi was born Malachi was 40 pounds, and he dropped down to 25 pounds while we were in the NICU in Ohio trying to manage the care of both boys. It devastated me to see such huge physical changes that were a direct result of me not being able to be mom to both boys each day. He has started to put that weight back on and we are seeing some meat on his bones.
Levi has been fascinated with Malachi’s wheelchair so we have been letting him drive it, much to Malachi’s delight.
Levi is going through a very jealous stage and oh boy is it wearing this momma out. Anything or anyone else that competes with my attention is unacceptable to his little one year old brain. We are dealing with a lot of meltdowns and temper tantrums, which we in turn combat with lots of sitting on mom’s lap and hugs and kisses.
At one of the soccer games this week we were having one such moment and a friend snapped this picture of me trying to help Levi calm down:
But I love that sweet little annoying boy with all my heart!
He has also started walking around like a major general with his hands tucked behind his back. We have no idea where this habit came from but it is awfully cute.
He had a fun morning with his buddies at church this morning.
Since we end up spending a lot of weird hours awake with Malachi, Jake and I both record several different television shows to keep us awake and help pass the time. I have been so disgusted lately at the content of the television shows and commercials that air so I revert back to the old fashioned shows like Little House on the Prairie and The Waltons. Jake sticks with history channel shows. But we have a few favorites that intersect, like Jeopardy and America’s Got Talent.
This week was the season finale of America’s Got Talent, a talent show that features a variety of performers. The performers go through several rounds and the rounds at the end of the series are voted on by viewers. It is easy to get invested into the contestants and their stories.
But one particular one this season really hit a special nerve for both Jake and I. There was a man named Kodi Lee, a blind and autistic 22 year old singer who also plays the piano. We watched week after week as he was voted through to the next round. And each time he did a new performance you got to see a little bit more of his personality and spirit shine through.
Since Kodi is blind he relied on his mother to walk him out onto the stage each performance and I couldn’t help but be drawn to her. I watched her more closely than I watched Kodi and I felt such a connection to her, especially in the way she looked at her son. There was such a bond between them, a connection that is shared between a son that is locked in his brain/body and his mother.
I saw myself in her eyes.
I have so much pride overflowing in my heart for Malachi. He may not achieve the world’s milestones for a six year old, but he is amazingly special, talented, and intelligent. He is one of a kind. I wish the world could know my Malachi the way that I do. I wish they could see the boy that I see.
Spoiler alert- Kodi Lee ended up winning America’s Got Talent. As they announced him as the winner I watched his mom, even getting emotional at the victory that was taking place. Not only was her son recognized for his above average talent at singing and playing the piano, but voters had looked past his “can’ts” and fallen in love with this young man.
I saw the emotion overcome her face as she watched her son simply be seen and valued for the unique person he is.
Oh how my heart connected with hers.
I don’t know why God has chosen me for the task of being a mother to two very special boys. But when I look into the eyes of Malachi I see the love of Jesus and I know that this is right where I am meant to be.
I am not enough for them. I will not ever be enough. But I believe that God stands in those gaps with His overflowing grace and mercy. He carries all of us in the palm of His hand.
2 Corinthians 4:16-18
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
This week I am choosing to fix my eyes on the eternal unseen. And I pray that God continues to renew me day by day as He has promised.
I pray also that the world continues to look into the eyes of my Malachi, and others like him, and see the beautiful and valuable creation that he is. I pray that Malachi continues to tell people about the love of God without ever having to speak an intelligible word. And I thank God that He has given me the privilege to be a part of his story.
May we always focus on the unseen.