The boys had a special visitor come by the office this week and they got a chance to say hello.
Levi is very stranger=danger these days so it went about as we expected.
This is the interesting part…Jake and I have decided not to do the whole Santa Claus concept with our kids. We are not against anyone that does, we just choose not to for personal reasons. But when Malachi saw Santa on Monday he got SO excited and his face showed recognition for his name, which completely surprised me. The only context he has for Santa is them talking about him on the cartoons he watches. It was just more affirmation to me that he is a smart little boy.
Most of our specialist doctors see the boys on either a 3 month or 6 month rotation. Between the two boys we see more than 18 specialists. We cram as many into June as possible but that means we end up with a whole lot of December appointments! I think if I wrote out our week hour by hour you all would be fascinated at the amount of things we cram into every 24 hours.
Here are some highlights:
Monday we headed to the hospital to change out Malachi’s feeding tube. It was a long 6 weeks with the original tube which had an insanely long extension dangling out of it at all times. It always got caught on things and nearly pulled the whole mechanism out of his tummy multiple times. We successfully switched over to a mickey button which is about the size of a nickel and stays out of the way. Lifting him up for the first time after the switch was so freeing, as I didn’t have to make a plan for the dangling tube before moving him. Malachi has handled the switch well. We have not used the tube a single time since the switch but at least it is there as a plan B in case he gets sick.
Tuesday we headed back to the hospital for Levi’s appointments. We started with his synagis shot from pulmonology then headed over to neurology. It was a very long appointment, but for specialists like these you want them to be thorough. He examined Levi and we talked about what milestones he has hit as well as which ones he has not. The neurologist is extremely honest which is something we have always liked about him. He said that he is pretty confident that Levi’s brain damage is more extensive than we realize. He was very eager to do another MRI, but I have never been a fan of doing imaging unless it will change our course of treatment. I don’t like doing things to the kids for curiosities sake. I did agree to do one after Levi turns two so we scheduled that for next December.
We also talked with both the neurologist and the epileptologist about Malachi’s new med and how he is reacting to it. We found out that Malachi is the first and only patient in Chattanooga (well, from the children’s hospital) that has started the medication so they are very curious to see what happens with his seizures. Malachi is still having a hard time adjusting to the tiny dose we started him on and is very lethargic and sleepy. I asked if we could postpone the increase and they were okay with postponing another week. He has had a slight decrease in his seizures and the ones he is having are much less aggressive, so that is good.
Friday we headed back to Chattanooga but this time for something fun! Every year a local organization adapts lots and lots of toys to work with switches like Malachi’s. They have a big giveaway and let anyone in the community come and pick out a toy to take home. Malachi had to miss it last year because we were in the hospital in Cincinnati with Levi. But the year before I remember how much fun he had trying out all the toys and choosing his favorites. Here were some photos from that year (2016):
Look at that chunky monkey!
I talked to Malachi all week about going to pick out a toy and he would always sign YES, ready to go then and there. It was pouring down rain on Friday and making the two hour round trip drive for a toy sounded awful but I had made him a promise so off we went. We got there and started trying out the toys and then the chipmunk happened. One of the toys was a tiny little chipmunk and when you pushed the switch he danced and sang in a chipmunk voice, but was very loud. Malachi did not see that one coming and it absolutely terrified him. He started crying and signing NO so I turned it off as quickly as possible.
That was it…Malachi was done with our toy adventure. He just couldn’t recover from the scary chipmunk and kept signing NO NO NO. I would show him a toy and say “Would you like the tiger?” and he would sign NO. When I asked him if he wanted to go home he very adamantly signed YES YES YES with a frown on his face. I picked out the toys I thought he might like and we headed back toward home.
In between all these appointments and adventures I have to find time to make sure both boys are fed and happy. A lot of times that means we find a hospital corner or a parking lot somewhere and I get Malachi out and sit in the passengers seat with him to feed him. As I sat there with Malachi I started to get so angry. Not at Malachi, not at myself, but just at this crazy life. My motives for the day were pure…yet the outcome wasn’t what I had hoped it would be. Those unmet expectations get me every time.
The kids semi-successfully had their big debut performance in the church play this evening. Levi was a whiny donkey, crying often but not completely losing it. Malachi did great as a horse and was convinced that the clapping from the audience was for him and him only. He kept leaning his head forward, trying to get a glimpse at the audience. It was really nice to see them be included in the performance. I will try to get some better photos for you for next week but here are a few:
Tomorrow morning we will be meeting with the high school class that adapted Malachi’s “Wild Raptor”. I am SO EXCITED to see his reaction! They facetimed me this week so I could decide if it was safe enough (it is VERY fast and the remote is sensitive) and I couldn’t help but laugh afterwards thinking about how much it was going to blow his mind. I can’t wait to share the video with you next week!
I have felt like that Bop-It game this week, with things coming at me from all angles bopping, twisting, and pulling me into different emotional directions. There have been so many beautiful moments, friends stopping by with gifts for the kids, kind strangers buying our dinner, moments of uncontrollable laughter. There have been moments of isolation, frustration, hopelessness, and defeat. This has been one of those weeks where I have had to focus really hard on choosing to be joyful.
I have had two verses on auto play running through my head all week…
Philippians 2:3-4 “Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking at your own interests but each of you to the interests of others.”
I have really been trying to evaluate my selfish tendencies. We all have them…those moments when it is easier and just plain nice to put ourselves before others. But by professing to be a child of God I am professing to do things differently than the world does them. And fighting our nature towards selfishness if one way to try to do that.
When I am racing towards the door trying to beat another person in so I can be first in line…then this verse played in my mind… “Do nothing out of selfish ambition- value others above yourselves”. So instead of continuing on my well earned path at being first in line, I decided instead to hold the door to allow them to walk through it first. Oh boy, did that one stress me out. But we are called to those moments of self-denial so we truthfully should be seeking opportunities like these.
Time out for a minute: that last paragraph sure sounds like a brag moment, which I hope you understand it most definitely is not. I am actually ashamed that my nature doesn’t do these things automatically and I have to think so hard about them to make them happen in my life. It is a true challenge for me.
The second verse is Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.” Each chunk of this verse could be a devotional all on its own! But as I have recited this in my head hundreds of times this week I can’t help but look at the transitional nature of this verse.
The word hope has been floating through my heart this week as I process what it looks like in my family. Hope is one of those emotions that is very hard to describe. The last time I felt full of hope was almost exactly one year ago as I flew Levi from Chattanooga to Cincinnati for his experimental procedures.
The interesting thing about hope is that it literally grows within you. You can almost feel it growing larger and larger, leaving you with an airy excitement as you think of all the potential things that the hope could bring. Like the verse mentions, it brings with it the feeling of pure joy.
But what if someone or something pops that bubble. That same night that I was filled with an enormous amount of joyful hope things took a turn for the worst. I scooted myself to stage two of that verse into the “Patient in affliction” category. I wrote a Facebook update this week talking about the night we arrived in Cincinnati. This may be a repeat to some of you who have seen it so feel free to scroll past it until you reach the black line. I copied it to share with anyone who is not on Facebook:
One year ago I boarded an air ambulance with my 4 pound son, wild eyed with hope that we would find a solution for his bilateral vocal cord paralysis that didn’t involve a trach. I have never shared the details from that night but as I lay here awake I feel like I need to. I struggle very much with PTSD from Malachi’s journey but even more with Levi’s and my heart has ached the closer we have drawn to this date.
Levi was extremely stable when we left Chattanooga, where he was comfortably kept on 4 liters of oxygen. He needed the high flow of those liters to help the oxygen get past his unmoving vocal cords. Insurance wouldn’t approve Cincinnati’s transport team to come pick him up so we settled with the company of their choice, REVA. At some point during his plane ride the two-man crew decided unbeknownst to me to turn him down to 1 liter of oxygen, which was not enough flow to keep him safe. I had no idea this was happening…and is something I feel so much guilt over. I sat next to him, secretly celebrating over the advocating I had just done for my son all while he was struggling on the stretcher next to me.
Levi screamed the entire 4 hour journey and I was very concerned about how much he was sweating. They had him strapped to an adult stretcher and covered in big blankets- not once did they peek at his abdomen to check for retractions when he breathed. I asked if we could loosen the straps a bit to try to calm him down but they told me it wasn’t safe. Every time I showed concern they would reassure me saying he say still SATing just fine. I assumed he was still at his 4 liters of oxygen. I asked why he wasn’t being transported in an isollette and they replied that they didn’t do that for all babies. Levi was 4 pounds.
We got to Cincinnati close to 2am and when we unstrapped and unwrapped Levi in the NICU he was breathing so hard he was coming off the table with each breath. He was drenched in sweat and white as a sheet. I started to panic, as did the team of doctors and nurses as they examined him. They told me they thought that one of his lungs had collapsed and they both sounded like they had fluid in them.
They worked on Levi for several hours, trying to get him back to his norm. He started to perk up and get his color back a little. They decided it was a good time to take me on a quick tour of the NICU so I would know where everything was. A few minutes later I looked down at my phone and saw I had missed a call from the Cincinnati NICU. They number called again and it was the nurse practitioner. She said “Levi stopped breathing. We are bagging him now and need you to come back immediately.”
I raced back into the unit to find a team of doctors and nurses surrounding my baby- one doctor was using a bag to rhythmically breath air back into Levi…I will never forget the image of his chest rising up and down but knowing it was not happening by his effort. They told me his little body just got tired of fighting to breath.
I felt my knees starting to give out and I was on the verge of vomiting…the same feeling that has happened so many times in my journey as a mother with Malachi, but it wasn’t supposed to happen again with Levi. And each time those knees start to buckle I have to take a deep breath and remind myself that there is no one to catch me…those hands that would catch me need to be focusing on my son. Giving into my body’s instincts and my emotions instantly felt selfish so I fought the urge with every ounce of my being. I can’t afford to make things “about me” anymore.
Levi was put on the ventilator and I camped by his bedside that night. I couldn’t stop crying, plagued by the guilt of knowing I was the reason he was on that plane. I was the one pushing for experimental surgeries, and while my intentions were as pure as you can get, I had put my son through more trauma.
It was time for me to pump so I hesitantly snuck away to the pump room. As I sat in that small room I officially lost all control of my emotions. I felt so incredibly alone. I wanted to call Jake and tell him the bad news but I didn’t want to burden him two states away where he couldn’t do anything about it. And I knew that he likely had Malachi in the bed with him, and sleep with Malachi is rare and to be cherished. And I couldn’t think of a way to even start that phone call.
I remember looking into the mirror in that room and for the first time ever I didn’t recognize myself. Why was I here? Why do my children keep having to suffer? When will I get to be the mom I used to daydream I would be?
I called Jake a few hours later and he quickly made the 6 hour drive with Malachi. When he arrived we mourned together over the nights events, both of us exhausted from emotion but not wanting to leave Levi’s side.
I don’t know if you have ever experienced true grief- it is completely overwhelming and it feels like any moment you are about to die as your body does things you have never felt before. I really don’t even think I can accurately describe the feeling to you.
I still carry guilt from that night even though I know in my heart I shouldn’t. When the eye doctor tells me that Levi has to have surgery on his eyes as do most “brain damaged kids like him” I immediately feel the pang of guilt, wondering if that damage happened in the plane that night. The neurologist told me this week that he suspects Levi’s brain damage is more extensive than the last MRI shows, and I can’t help but feel those sharp pains of guilt all over again.
The guilt of the special needs mother is a unique thing. We blame ourselves irrationally for things out of our control. The “what ifs….” And we are too stubborn to let anyone tell us differently. We live in a world where our job 24/7 is to keep our children alive. Even during the healthy times, death still lingers on our minds. We pray that our kids live long lives but also pray that God doesn’t allow them to outlive us, as we fear for their wellbeing once we are gone. We live in a world where realities trump dreams. Our days are not 24 hours, but rather continuously running as one hour after another.
The life that I have been called to is a very difficult one and the wounds from the journey run deep. The girl in the mirror is not who I ever expected to be. This life requires me to cling to God and allow Him to be the one who catches me- His hands are big enough to handle my weary knees as well as my children.
“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12
We simply pray for the strength to get through one more day, and thank God for the beautiful blessings that these two boys are in our lives. And I do my very best to not stay in the memories. My mind fights back, clinging to every sight, smell, and sound. We continue to pray that God replaces all those memories with beautiful ones as we raise these amazing boys.
Side notes: we do not consider Levi as “special needs” but rather refer to him as “medically complex” for now…and we pray that formal diagnoses never need to come. I am told to expect him to have some level of cerebral palsy but not anything near Malachi’s CP.
I contacted the air ambulance company the next day who told me that “transporting him at 1 liter at 100% oxygen is essentially the same as 4 liters at 21%”. That is not even remotely true. Levi simply needed flow, which he did not get. They stand behind their crew’s decisions that night.
And the final step in that verse “Faithful in prayer.” This is something I am struggling with, and I have been open about struggling with this one for awhile now. Prayer is hard for me. Most waking moments my mind is consumed with keeping tiny children alive. When they fall asleep my body shuts off, knowing I need to glean all the rest I can while I have the opportunity to. Prayer is something I want to be more intentional about. More faithful in doing.
I don’t know where you are on the stages in this verse. Some of you may be in the hope stage, some in the affliction, and others in the prayer stage…the stage where the situation is beyond your control and the only option is to pray. But once you hit that final stage your emotions have taken a beating and prayer can be hard.
Let me encourage you to challenge yourself this week (I am challenging myself as well) to try to live out the adjective for the stage you are in. Joyful, Patient, Faithful. I don’t think it is any coincidence that these three are part of the fruit of the spirit. These emotions are often something that only God can bring to circumstances like mine!
Please remember our family this week, as it will be a challenging one. Levi goes in for another overnight sleep study on Thursday and to say I am dreading it would be a huge understatement. We also have some big talks with pulmonology coming up and will have to start planning our next trip to Cincinnati.
Oh, and here is some pretty fun artwork I did with the boys last week. Levi’s wasn’t feeling the “star making” portion but overall it turned out really cute. We managed to do 23 of these over the last month with the kids (each family did 1 canvas) in our church as a surprise for their parents. We would get their hand prints and foot prints and I would add the details layer by layer. I could officially paint these in my sleep haha! But seeing the joy it brought the parents tonight made it worthwhile. I had a WHOLE lot of “regard others better than yourself” moments while painting these, doing my best to make them as perfect as possible for their mommas just like I would want them to be.
Thank you for choosing to go on this journey with us each week.