This has been a week of ups and downs. Strap on your seat belts and be ready for a long update.
But before I start those updates, let me tell you…last week’s update gave me a good laugh as I could tell how tired my brain was when I read it back. To be totally transparent, I fell asleep three times while trying to write the devotional part. Apparently my fingers kept typing during those moments leaving some pretty random sentences. At one point I woke up to find that I typed “Christians typing sentences”…
But I am filled with caffeine right now and haven’t seen a rat turd today so it should be better one.
Let’s start off with my epic Friday meltdown. A few weeks ago we took Malachi to his regularly scheduled neurosurgeon appointment. Some background info here: Malachi has a device in in his head called a VP shunt. When his brain bled at 3 days old the blood dried and clogged the small holes for his spinal fluid to escape the inside of his brain (the ventricles). The VP shunt is a small machine under his scalp in the back of his head- most people don’t know it is there, although oddly enough his hair is starting to turn gray right where the shunt is. The shunt has a catheter that allows the spinal fluid to get out of his ventricles and re-routes it into his stomach cavity for the body to absorb.
Statistically, most children that have these shunts will have at least one malfunction in the first 5 years. We are on year five and have not had a malfunction, praise the Lord! A malfunction would likely require emergency surgery to repair or replace the shunt as he cannot live without it.
We routinely check the shunt using CT scans to make sure it is working like it should, but CT exposes him to a lot of radiation. At our most recent appointment the neurosurgeon suggested we do a “rapid MRI” to get some baseline images of how the shunt is working. An MRI would be much less radiation for him.
But here is the catch: we have never allowed anyone to do an MRI on Malachi. Yes, doctors have consistently tried to get us to do one but we have always declined as they wanted to do it more out of curiosity rather than medical necessity. Malachi’s brain damage is global (meaning all over the place) and he does not have much brain matter left. Doctors have always been fascinated by Malachi’s ability to function as well as he does and wanted to get better imaging of his brain. But MRIs require sedation, something we have a bad history with. So we always say no.
When the neurosurgeon brought up the rapid MRI I immediately started building up that concrete wall. I said “We really don’t want to sedate him unless absolutely necessary…” to which he replied that the rapid MRIs don’t require sedation. I said “So he can move?” and he said yes. I asked him how long the scan would take and he said “only about 30 seconds” and that it was a relatively new technology for the hospital.
Hey, that doesn’t sound so bad! We agreed to the rapid MRI and he said they would call and schedule it.
Fast forward to Friday and MRI day was here. I left Levi home with Jake and Malachi and I embarked on our 1 hour drive to the nearest children’s hospital. I checked in at the front desk 15 minutes before our scheduled time and they told me if I was willing to walk across the hospital to the other MRI rooms I could get scanned right away! If not, I would have to wait at least 30 minutes. That was an easy decision so I packed up and started our journey. We got to the new location and we were given some hospital scrubs to put on as you have to be extremely careful about what you can have near MRI machines.
We were changed and ready to go, but the techs were studying his paperwork and noticed the note about the metal coil next to Malachi’s heart. In 2015 he had a heart procedure to place a coil to close his PDA. Apparently the machines in this MRI room weren’t able to scan patients with heart coils. So they sent me back to our original office.
I was trying my best to keep a good attitude as I wheeled Malachi, both of us still in scrubs that were too big and barely covering areas that needed to be covered all the way across the hospital again. We checked back in and I was told that they had given our slot away since we had gone downstairs and it was going to be another 30 minutes before the machine would be ready for Malachi.
I could feel my attitude morphing slowly into Mama Bear mode as he and I sat uncomfortably in the waiting area, still dressed semi-undecently. I had waited to feed him as I didn’t want him throwing up when I laid him down. But now he was well past his time to eat and still we were waiting.
We finally made it back to the MRI machine and when we walked into the room I got hit with a wave of nausea. This was the same room Levi had been taken when he had his first MRI in November in the Chattanooga NICU. Levi had not done well on the journey to the machine and screamed and screamed on the short isolette ride until he turned colors. I kept asking his nurse and the airway nurse that transported him if he was okay and they kept saying “his numbers are still good” which we know from our botched airplane ride doesn’t always give you a good picture with Levi. Deep down I have wondered (and still daily wonder) if this trip to the MRI machine is what caused his moments of brain damage. I should have stopped them after he didn’t handle the transport well, but I didn’t speak up…something I carry so much regret over.
That night with Levi, they had told me they thought they could do it without sedating him, and as I watched him scream I knew that this would not be as smooth as they were anticipating. They strapped him to a papoose board and put him in the machine for 25 minutes only to report that he had moved too much and they would need to try again when he was sedated. I was a wreck that night as I knew I should have intervened…the simply had not done what was in Levi’s best interest and I didn’t advocate for him. I cried myself to sleep that night, ridden with guilt.
So back to Friday…here we were in that same stupid room. I was trying to keep my emotions intact as I picked up smiling Malachi and laid him on the table. She started to pad his head and put ear plugs in his ears and made the comment “we have to keep him from moving.” This struck me as odd, because the neurosurgeon had specifically told me that movement was okay for the rapid MRI. I said “It is only for 30 seconds right?” and she said no that he had to be perfectly still for at least 10 minutes. I explained that it would never be possible for that to happen and she said “We may need to call anesthesia to sedate him then.”
And then the emotional floodgates started to break.
Last time we allowed them to sedate Malachi he went into a 30 minute (yes, you read that right) whole body seizure that led to a hospital stay. I started to cry and said “You are not sedating him. We would have never agreed to this if we thought he was going to be sedated.” And told her to sit tight while I went and called the neurosurgeon.
The neurosurgeons office backed up everything I was told in the appointment, and said they would be right there to talk with the MRI techs. The techs were obstinately stating that this was the only way to do a rapid MRI. At this point it was all just too much for me and I was bawling and snatched Malachi up off the table and told them we were leaving. I try not to cry much these days, but when I do it is one ugly scene.
The neurosurgeon team had been waiting on us to get finished so they could reprogram his shunt (they can do that with a magnet- super cool huh). And when I came wheeling out of the MRI area they were there waiting for me. I continued to uncontrollably ugly cry, frustrated that I had come all this way under false pretenses and even more frustrated that people that didn’t know my child’s medical history well were so flippantly just “going to call in anesthesia to sedate”. They said they would try to schedule another one when we could be prepared for sedation and I told them no thank you. I know CT scans are more radiation but we would prefer to do one of those as they don’t require any sedation at all.
But all that crying absolutely drained me. I seriously could not get a grip. The neurosurgery team was so kind in spite of my breakdown and gave me some meal vouchers to make up for all the chaos. There was a zero percent chance I would be able to eat so I packed them away for another day.
Alright now let me give you a few heartwarming updates. We had our typical appointments this week, but Malachi got to see so many of his friends too. His buddy Thatcher just happened to have a horse therapy session right before Malachi!
Then the following day we were able to catch up with another friend named Jonathan. His mother stumbled upon our Chick-Fil-A story last year and connected with us…we live in the same county but on opposite sides of the mountain so our hangouts have to be intentional. We were able to meet up for lunch this week!
Malachi has been showing us a lot of emotion lately, which is amazing to see, but challenging to navigate. For example, at lunch with our buddy I let Levi sit on Jonathan’s lap. Malachi did not like sharing Levi and quickly said “NO” with his signs. When I offered for Malachi to hold Levi he very adamantly again told me NO. I put Levi on Malachi’s lap anyway and he proceeded to try to push him away. This happens often when Jake or I try to talk to Levi or give him attention…Malachi gets very angry.
He is also having a hard time sharing his toys with Levi, so we are trying to respect his feelings and designate some of his favorites as big boy only toys.
But he is very interested in the Big Brother side of their relationship. We talk a lot about how Levi is a baby but Malachi is a big boy so he has to learn to be nice to Levi. He likes to have those talks and puffs out his chest with pride that he is so big. He really does love his baby Levi.
But this week we experienced another first with the boys. Levi and Malachi were laying on the ground playing and as Levi often does, he rotated his body all the way around and kicked Malachi in the tummy VERY hard. I immediately moved Levi and watched Malachi to see how he would react. He was in shock at first, then his face morphed into pure sadness. He just couldn’t process why his baby brother had hurt him. It wasn’t a “pain” cry, but a “you hurt my feelings” cry that took 45 minutes to get through. I tried to explain to him that Levi is a baby and doesn’t know how to listen and obey the rules like Malachi does. I finally got him calmed down and when Jake came into the room I told him what had happened- hearing it again made Malachi cry even harder as he reminisced about what happened. Poor boy.
On my 4 hour drive home from South Carolina on Monday Malachi had his first full fledged temper tantrum. He has never had these before so it took me pulling over three times and checking him for pain/discomfort before I realized what was happening. He hollered from the back seat, screaming, yelling, and crying to let me know that he did not want to be in the car any longer. But yay for his ability to show emotion!
Levi has been doing so great this week. He is thoroughly enjoying exploring different foods and is eager to try new things. I took this video of him eating for you:
He is also exploring toys like a wild man. We let him play with one of Malachi’s cars and he was cracking me up so I took a video:
But the biggest fun update about Levi is that he has started giggling!! And it is such a beautiful noise; oddly enough Malachi giggled for the first time on July 1st (same as Levi!). Take a listen:
Levi really is such a good baby. He is starting to want to be held more and will reach out his arms to be picked up. He is insistent though on self-soothing when he gets upset and the only solution is to set him down by himself. This is something that has been making me sad lately, as it reminds me of all the times I wasn’t there in the NICU with him when he needed to be comforted. He has now trained himself to self soothe instead of relying on mommy to help, and it breaks my heart that a child so small ever had to experience suffering alone. A child should never have to equate humans to stress, and desire to be left alone.
In unrelated news, the bear(s) are back. Our neighbor saw one sitting in the road in front of our house last week, but he hasn’t come back up to the house yet! That I can handle.
Then later in the week Jake and I pulled onto our road and one was about 100 yards away. He hid in the tree line as we drove by and I texted the neighbor who immediately went in his car to go find him. He texted back that he had turned the corner from our house right after we had pulled in the driveway and it was running full speed up the road- almost as if it was chasing our car! He ran into the trees so we have been keeping an eye out for him.
This one was much smaller than our visitor a few weeks ago. Tall and lanky like a teenager.
Last week I alluded to some great conversations I was able to have with some of our youth, and one in particular keeps resonating with me. I am going to be very careful here to protect her so I will give general information.
One of the teens came and found me at camp late one night to talk about something she has been regularly struggling with. This particular thing has been crippling her and she just wanted to know how to get rid of it. She said “I have prayed and prayed for God to take this from me and He just wont.”
As she spoke God said to me “Tell her about the thorn.”
I said “Have you ever read about the thorn in Paul’s flesh?” We turned to 2 Corinthians 12 and started studying that scripture and by the end even I had God goosebumps as I knew this message was for her, me, and for someone who reads the blog as well. Maybe this is for you.
In this scripture Paul talks about how he was given a thorn in his flesh. He actually refers to it as a messenger of Satan put there to torment him. No one knows exactly what the thorn represented, but we know it was ever present and painful. He prayed and he prayed for God to remove it from him…
Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. 8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
Is there something in your life that causes you DAILY pain? Something that you feel with every movement throughout the day? What is the thorn in your flesh? What have you prayed for God to take from you, but it just won’t budge from your life?
As I read verse 9 with my teenager friend I started crying, as I heard God saying these words to me… “My grace is sufficient for you, for my power is made perfect in weakness.”
He acknowledged the struggle. He acknowledged the pain. He didn’t chastise Paul for his complaining, but rather he acknowledged the thorn. And He reminded me that it is in those weak moments when I am empty that God’s power can be seen. It is in those moments when I have nothing left…when I am limp and powerless… that God steps in and strengthens me with a light that can only be His.
His power is made PERFECT in our weakness.
Without my weaknesses, God is not needed in my life.
And then Paul goes on to say that he will boast about his weaknesses. What a slap in the face to the devil. I think back to the words of Joseph in Genesis 50: “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.”
I started thinking about my life with Malachi and Levi. Speaking transparently, their level of care is the thorn in my flesh. Mentally and physically keeping them alive, healthy, and happy is a true struggle and challenge. I have prayed over and over again for God to heal them completely…
But His grace alone is sufficient. And God’s power is absolutely made perfect in my weakness.
Oh what things I imagine the devil predicted would happen when he hit Jake and I with each of our challenges…each of our thorns. And like Joseph, I see that those things the devil thought would break us and cause us to turn from God have only been used BY God for glorious things.
I look at my life and see how I have been stripped down. My ability to control my life is gone. I live day by day, praying that tomorrow will be the day that my sons are healed. And each day I have to learn how to deal with disappointment that God hasn’t healed them. But oh my goodness, how this life has taught me to rely on Christ’s power.
His power is made perfect in my weakness.
So like Paul, I am thankful for my thorns. I am thankful that I have been given such a challenge, because it requires that I stay close to God. Every time my knees grow weak, like this week in the MRI room, He is there to catch me and renew my strength.
What a blessing it is to be given daily reminders of the necessity of walking with God.
“For when I am weak, then I am strong.”
WOW that sentence holds some power.
I hope this week you are able to see your thorns in a new light. I pray that God is able to touch your soul as He whispers “My grace is sufficient for you, for my power is made perfect in weakness.” I hope you are able to see your weakness as a blessing, and that it sends you falling into the arms of our loving God.
Please continue to pray for our family, and join me in praying daily for my sons to be made whole. God’s power is also made perfect in their weaknesses….in Levi’s struggle to breathe, in Malachi’s struggles with epilepsy and body. I see God work through their weaknesses to touch my soul. Pray that He continues to use their lives to manifest Himself here on earth.