This was a week of many firsts.
Monday I tackled my first solo day of appointments with the boys. We had a 9:20 and an 11:20 for Levi an hour away in Chattanooga and a 2:30 for Malachi about 45 minutes away.
It took me about an hour and a half the night before to pack our bags, which truthfully could have lasted us for 4 days in the wilderness haha. But I wanted to make sure I thought of every potential situation we would encounter. When we arrived at the hospital I strapped each of them (and Grover of course) into the massive stroller we adapted for the boys and we were on our way!
Appointment one was for Levi’s g-tube. We met with a surgeon who showed me how to change it out and replace it if it ever came out. The stomach heals impressively fast when the tube comes out- you have to get it back in within four hours or the hole closes up and requires another surgery to get the tube back in. He said that his g-tube site looks amazing and for every 100 he puts in, he is lucky if 10 of them look as good as Levi’s. I sheepishly smiled like it was something I had done, but the reality is that we are just blessed! Oh the things special needs moms take pride in…
This surgeon is the same one who has done nearly half of Malachi’s surgeries, including one life saving one when he was two weeks old. It was like an odd little reunion but for a different kid. While we love the man, I was very excited to hear that unless there is an emergency there is really no reason for us to keep seeing him on a regular basis. Specialist #1 checked off the list.
Next we headed across the hospital to meet with Levi’s hematologist. Background info: shortly after Levi was born he had an MRI done on his brain to check for a malformation that would cause his vocal cords to be paralyzed. While we didn’t find the malformation we did discover two small areas of brain damage caused by a hypoxic ischemic event. That means either he went without oxygen for a period of time (highly unlikely as he was in the NICU and on oxygen support the whole time) or he had a blood clot that traveled to his brain.
Before we left for Cincinnati we had the hematologist check my blood to test for any clotting disorders. Levi is still too small to test so we thought we would rule out any issues on my end. I had been tested for these issues prior to pregnancy and everything came back clear, but the doctor wanted to spin them again to see if there was something they had missed.
At our appointment on Monday the doctor told me that everything came back clear again. Part of me is happy to have it verified that I do not have a clotting disorder (in spite of 3 blood clot issues), but the other part of me doesn’t like it that we don’t have a clear answer for Levi’s brain damage causes. But either way, unless another issue arises the hematologist decided that we do not need to be seen on a regular basis. Specialist #2 crossed off the list. BOOM!
We headed down to the cafeteria to get momma some much needed caffeine and to find a quiet place for me to feed Malachi. Once we were all recharged, we packed up the van and headed to Malachi’s therapy appointment across town. Malachi was a champ on his horse, in spite of not being 100% back to normal from his sickness last week.
Call me cocky but I was thrilled at how smooth our first big day went! We got allllll kinds of funny looks and barely fit into the elevator, but by golly we succeeded! I had one little old man literally circle the giant stroller multiple times as we waited for the elevator, fascinated by our set-up. He had a shocked look on his face and squatted down (yes, literally) to look under the stroller and said “Whew, I thought you had a third one under there too.” I didn’t quite know how to respond to that so I just smiled.
The rest of the week is a blur. Malachi went to school on Tuesday and Levi and I headed into town for our first big grocery trip- I hadn’t been to the grocery for 5 whole months and couldn’t wait to restock the fridge and actually cook. But shortly after we got there I got a call from the school that Malachi had already had a few big seizures that lasted longer than 2 minutes each. We quickly headed that way to pick him up.
Malachi is feeling so much better but is having trouble with some lingering mucus. When you or I have mucus, we have the ability to cough it up and manage it well. Malachi doesn’t know how to do that so it sits in his throat and he panics. His brain tries hard to process what to do and when his body can’t do it the discomfort sets him into major seizures.
Wednesday his seizures were still going strong so I kept him home with me. Thursday he was ready to go but someone in his classroom went home with a tummy bug so he also missed Thursday and Friday in an effort to steer clear of those germs.
Malachi has really enjoyed the extra time home with Levi and wants to be close to him at all times. He has been trying so hard to get his hands on him this week and after 25 failed attempts to grab his hand, Malachi finally succeeded. I saw it coming and grabbed my phone to take a quick picture. This moment lasted about three seconds but to Malachi it was glorious.
We have had some beautiful weather lately so we took the boys on their first walk this week. We went up the road to see the coon dog and Hank the pig.
This seems over dramatic but I have been overwhelmed by the beauty we live in, and particularly fascinated by the birds. In Cincinnati I didn’t get a chance to see nature so being reunited with it here has been refreshing. We have been watching the sunset from the back porch this week and it has taken my breath away.
We have also been cashing in on some of our LaundryDoo loads! Thank you to everyone who donated a load to our family. I leave these bins on the front porch for pickup and they are washed, folded, and back on the porch within 24 hours. Best invention ever! And what a blessing.
We have also been extremely blessed by our community in the form of food. We have had several families drop off meals throughout the week. Even today we came home from church to find a bag of hot home cooked food on the front porch waiting for us.
Nighttime has been interesting. During the weekdays I take night duty for both boys so Jake can get some rest. We have Malachi on a video monitor so I can watch him for seizures- he usually has one within two minutes of waking up (around 3am) so we try to get in there pretty quickly. I also have Levi’s pulse oximeter on so I can watch his heart rate and oxygen saturation. Add onto that his feeding pump that alarms often and the fact that Levi’s breathing alone is a huge distraction. It is not quality sleep for momma but it is better than nothing. I am living on prayers and caffeine.
There are nights we are up and down several times an hour, and usually by morning I find myself smashed in the middle of two boys in our king sized bed…too afraid to sleep for fear Malachi will have a seizure and smother himself on a pillow and too afraid of rolling over onto Levi; co-sleeping freaks me out. This week I laughed to myself as I felt like the icing in the middle of an oreo. But as long as they are each getting the rest they need, I am choosing to be content.
We were all able to attend church this week, and it was just what I needed after a week being cooped up at home! There is always an element of chaos with every thing that we do, but some outings are worth the crazy.
Of course all of those late nights in the middle of the oreo cookie have led to some pretty in depth conversations with God about my boys.
I have been thinking a lot about Malachi’s journey. I remember bringing him home from the NICU, confident that everything the doctors told us about his brain was going to be wrong. God was going to heal my son. He was going to defy the odds, and we would give God all the glory. Miracles for Malachi, right?
My boy would walk. My boy would talk. My boy would be a typical child with no signs of his rough start.
I can’t tell you the specific day that I realized that God had different plans for Malachi. But I can tell you that I have struggled immensely with disappointment that God didn’t completely heal my son like I expected him to. We have watched Malachi’s body become more disfigured over the years, as his brain tells it to do things it isn’t meant to do. We have watched his little brain be overwhelmed with seizures. We have watched a lot of the the things those doctors predicted come true.
The disappointment is there.
But in addition to that disappointment there is a level of excitement, curiosity, and wonder as we watch and wait. There is a reason that Malachi was born this way, and there is a reason that his healing has not happened yet. And Jake and I continue to expect God to heal him.
Acts 3 tells a story about Peter and John walking up to the temple and finding a man who was “lame from birth”. This man looked at the ground, humbled by his condition, as he did each and every day, holding out his hands expectantly at the disciples as he asked them for money. The Bible paints such a clear picture of the scene.
“Peter looked straight at him, as did John. Then Peter said, “Look at us!” So the man gave them his attention, expecting to get something from them. Then Peter said, “Silver or gold I do not have, but what I do have I give you. In the name of Jesus Christ of Nazareth, walk.” Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. When all the people saw him walking and praising God, they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him.”
From here, the Bible tells us that Peter was able to tell the crowd about Christ and His power.
“By faith in the name of Jesus, this man whom you see and know was made strong. It is Jesus’ name and the faith that comes through him that has completely healed him, as you can all see.”
As I reflected on this story, I saw it with fresh eyes as I stared at my own sweet son as he slept. I looked at his disfigured legs and wondered if the man from the Bible had the same disfigurements.
It would be physically impossible for Malachi to walk. Literally impossible. His ankles and feet turn out and up, we aren’t sure he has kneecaps, and both of his hips are entirely out of their sockets. Because he has never put weight on his legs, the bones at his hips never formed the grooves like they should. Every part of Malachi’s legs are marred beyond repair.
I can’t help but think that the man at the gate that day was the same way. His legs were atrophied from never being used. His ankles and muscles were weak and non existent. He was likely a mangled mess…just like my sweet boy.
But God chose to heal him that day. And I fully believe that God will heal Malachi too. One day Malachi will run. One day he will run so hard that his little cheeks turn red, and he will ask “Did you see how fast I was mom?”
And while each day that this doesn’t happen I experience a tinge of disappointment, there is also a level of excitement as I wait in anticipation for that moment to come.
Malachi’s “day at the gate” may not happen here on earth, but I have faith that it can. If God can heal this grown man in an instant, I am confident he can heal my 5 year old son. And I am confident that Malachi will be running laps on the streets of gold in heaven. His ankles will be straight, his knees will bend, and he will be walking and leaping and praising God.
As a Christian we are called to have faith. But it has to be a faith that stays strong, even through disappointment. Because of that faith, we are able to experience hope.
And it is that hope that keeps me smiling. Expecting, anticipating, and smiling. I can’t imagine going through our lives without the hope that Christ gives us. It brings me a peace that I cannot explain.
Tonight I am thanking God for fearfully and wonderfully making Malachi, as it says in Palm 139.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
One more side note- I took the youth group to the movies tonight to watch “I Can Only Imagine” and it is an excellent movie! It has great lessons on forgiveness, even when it is difficult and how God can change a dark person into a completely new being. It captivated 22 teenagers this evening, so I think it is safe to say it was a hit for their age group too. If you are looking for something to do this week you should check it out.
Pray for our family this week as we raise the bar to 3 appointment days! This could get interesting!
Have a blessed week!