This week I have been doing a lot of evaluating on the life we are giving Malachi, and I decided we needed more “silly” things for him to be excited about. More traditions. We aren’t big holiday people- we don’t even really get into celebrating birthdays. Christmas is proving to be particularly hard for me as I can’t stop flashing back to Levi’s hospital stay last Christmas. On a whim I asked Malachi if he would like to go pick out a Christmas tree and he about fell out of his chair enthusiastically signing YES.
So on Saturday we headed to the store, Malachi wide eyed with excitement as I told him that some trees were soft like a puppy dog and some were sharp, like the teeth of a dinosaur. I told him we would let him feel them both and decide which one he wanted. Little did we know that Americans are crazy about Christmas and by the first week in December nearly every place is out of quality Christmas things. Duly noted for next year. We managed to find a handful of “sharp” Christmas trees left at a local store and Malachi was smitten. We loaded one into the van and when we got it home Malachi couldn’t stop giggling. Then we turned the Christmas lights on and he really lost it with excitement.
I went down into the basement and dug out a few bins marked “Christmas” that have made the move with us from the cabin to the rental to the new house. I opened them up and got hit with a wave of nausea as I looked inside. I remember buying these decorations pre-Malachi and daydreaming about all of the memories we would have with them. I had envisioned all of the kids helping me unpack these bins and decorate the house, fighting over which favorite ornament they would get to hang on the tree. It was like a time capsule of a life I envisioned I would have.
I talk to you often about the grieving process special needs parents go through. It never really completely ends, and such small and insignificant things can trigger it.
But I thought about that sweet little 5 year old upstairs, tickled by the lights on his real Christmas tree and I hauled those bins up the stairs, verbally dictating each ornament I placed on the tree so I could share some of the magic with him.
He is pretty much obsessed with the tree. We had someone stop by last night and I am confident Malachi thought the only reason he came was to gaze at the tree he picked out. We have put one of his switches by the tree and each morning and night we have Malachi “turn on/off the lights”- one of us hides by the outlet and waits for him to push the switch- timing it so he thinks he is doing it. Mr. Independent.
Every now and then I get the feeling that an emotional burst is about to take place. The last time this happened I was able to ward it off until the feeling went away. I am currently in one of those battles against fragility but still winning! We will see what this week holds before I do my victory dance.
Levi learned how to sit independently this week! And how to get up from the floor to the sitting position all by himself. Big boy! The pillow is there just in case but he is able to stay like this for over 45 minutes.
We also discovered this week that Levi is NOT a morning person.
Malachi and Levi are both in the church Christmas play this year- Malachi is a camel (we think) and Levi is a donkey. Their big debut is a week from today.
Tuesday’s neurosurgery appointment went well, so well that the doctor agreed to change him to an annual check up instead of bi-annually. Praise the Lord for less appointments! We talked about the MRI chaos from 6 months ago and decided to wait to get baseline imaging for another year, and this time around we will go for a CT.
We loaded up from the hospital and headed back towards home for a very special meeting with the high school class that is going to be working on Malachi’s Christmas toy. If you weren’t able to read last week’s blog, a local group of students is going to adapt a ride on toy for Malachi to make it remotely controlled. This is a HUGE project and we are so excited to find some brilliant minds willing to tackle it for us.
I was about 20 minutes away when I got a call from the local news station asking if they could do an interview and come to the high school for our meeting. I am all about opportunities for awareness so I told them I wouldn’t mind.
I learned something about Malachi this week- he cannot handle big surprises. I have been keeping this project a secret from him. When we got to the school the class came to greet us and we went back to the classroom to discuss Malachi’s needs. Malachi seemed very overwhelmed by the situation and was acting very tense. Then he started to get emotional, sensing that everyone was looking at him and mommy was talking about him. Sweet little tender heart. He is always up for adventures but this was the first time I didn’t explain in detail where we were going or what we were doing. Lesson learned!
The meeting went so well and the students asked very specific questions that would help them create something special and perfect. When we presented this need we simply asked for someone to make the machine remote controlled. But as these kids processed Malachi’s story they decided to make this even bigger, talking about giving the machine a dinosaur theme and installing speakers for dinosaur noises and music. They had so many ideas- even a sidekick car for Levi to ride in. The thing that struck me the most was their genuine excitement to help. It didn’t feel like they were “doing a favor for us” but rather they genuinely wanted to make this a reality for Malachi. What a special group of students, and I can’t even process being that intelligent!
Here is the news story that aired about the project…I had to video it with my iphone so the quality isn’t the best:
The news reporter followed up with the class on Thursday to see their progress and sent me these photos:
And a link to that follow-up article:
I am so excited to see what they come up with! And we have already started to explain it to Malachi, and he is SUPER excited. We didn’t want him to get overwhelmed when they present it to him. He giggles each time we tell him about how fast he is going to be able to go.
I gave this week a theme: “Embrace the Tube”, hoping to get over my bad attitude about Malachi’s g-tube. Every doctor we spoke to talked about how much easier it would make our lives. How it would save us so much time in our day, as it was a direct way to feed and medicate Malachi. But this tube has instead been such a negative thing. We are constantly battling granulation tissue (so bad that his therapists say it is the worst they have seen), constant oozing so multiple dressing changes each day, stinkiness from all the oozing, and the doozy— Malachi hates it and cries and tells me “no” anytime I try to send food or meds through it.
So with this week’s new theme in mind I started trying to slowly run feeds in through the tube…so slow that hopefully Malachi wouldn’t even feel it. Immediately after the tube feeds ended Malachi seizures increased and he was out of sorts for hours. The amount of intestinal pressure did not chance with the tube feeds like I had hoped it would, as he wouldn’t be bringing in as much air as his oral feeds. I tried for three days then abandoned my theme and went back to feeding him like normal.
Tomorrow I will meet with the GI doc and we are hoping to switch out the style of tube to help with skin irritation and the granulation tissue. I am just so disappointed, but also so grateful that we didn’t proceed with the tube before now.
On Thursday Malachi started his new seizure medication called Epidiolex. I know I recap a whole lot so bear with me- but it is the first FDA approved cannabidiol medication. I went renegade about two years ago and started CBD oil on my own but got a little scared to keep increasing without being under doctor supervision as it can mess with liver function and needs to be monitored closely. But we are seeing the same initial results with this new med and he has slept 7-8 hours a night (with just one short wake up session in the middle) since we started it. His seizures are also slightly less intense, but he is still having about 8 of them a day. He is very sleepy as his body adjusts but we expected that. This Thursday we will double the dose, officially taking him higher than I was ever willing to go so I am excited to see what positive changes will happen.
Just a little humor for you today…this morning I did a lesson with the children at our church about the Last Supper. Last Sunday we had done church wide communion and it seemed like good timing for me to teach them the symbolism of the bread being the body of Christ and the juice being the blood that He shed for us. I explained to them that these were just symbols- things to remind us about the sacrifice Jesus made for us. Then I let them each take a cracker and break it, encouraging them to think about how much Jesus loved them. After the lesson I let them eat their cracker just for “waste not want not” purposes. It was definitely an ambitious lesson for the kids (ages 3-11) but when we got in the car after church I told Jake how well the lesson went!
Tonight I talked to a parent whose 5 year old son was in the room. She said she asked him when they got in the car what he did in children’s church and he replied “I ate Jesus’ skin.” Let’s all collectively cringe and laugh at that comment! Oh dear.
This week I will be tackling physical therapy and feeding therapy for both boys; Malachi also has horse therapy, GI and the dentist, and Levi has Neurology and Pulmonology appointments. Lots of hospital days and busyness!
Devotional thought time. Writing this blog each week is a wonderful challenge for me on so many levels. Emotionally it allows me to dump out everything in my heart and sometimes that action allows me to walk away from those emotions. Physically, I selfishly get to sit and do something I enjoy doing (writing) while Jake takes the kids. Cha-ching. That was a cash register noise if you didn’t get that. Spiritually it challenges me in my prayers to ask God to lay something on my heart. Every time I ask He comes through. That’s one of the many cool things about God.
This week has been a “dark” week for me. I have just felt so discouraged. I laid in bed this week and prayed over Malachi sleeping quietly next time me. As the words came out of my mouth “God heal his brain and stop his seizures…” he went into a two minute long seizure. Talk about discouraging! I try to pray with true faith and belief that God can do the impossible but my endurance lately has been wavering.
Tonight Malachi and I went on a date. This is the second one this week and is a result of the creating traditions challenge I mentioned earlier. Just he and I went to listen to the Christmas cantata at church and they sang a song that he knows very well. He was overjoyed and I encouraged him to sing along. He gathered up a burst of strength and opened his little mouth in anticipation but nothing came out. He tried again and again, each time yielding silence.
As I watch him struggle in a fight between his brain and his body I find my heart hurting deep within my chest. I would trade places with him in a heartbeat if it meant I could take some of the pain from his life. I never want him to think I view his struggles as a sad thing, I only want to encourage him, so I have to fight the urge to cry and tell him what a great job he is doing mouthing the words that he wants to say. I have to help him find beauty in the ashes, even though sometimes it is hard for even me to find.
This week I caught myself wishing I could talk to God about this suffering my son is going through. I started to convince myself that this is a struggle that is totally unique to me. No one else gets it.
And as I camped out on that mindset God started to flood me with story after story from the Bible of other moms who “get it”.
Hagar, the mother of Ishmael. She was exiled into the desert with her son they ran out of water. The boy was crying and she set him under a bush. The Bible then says in Genesis 21:16 “Then she went off and sat down about a bowshot away, for she thought, “I cannot watch the boy die. And as she sat there, she began to sob.”
Moses’ mother, who hid her child as long as she could and in an act of desperation put him in a basket and into the river. The suffering and turmoil that decision must have brought her.
The widow from the story of Elijah. She and her son nearly starved to death. Then later the boy grew very sick and died. Elijah brought him back to life.
The woman in the New Testament who was in a funeral procession to carry her dead son to his grave when Jesus brought him back to life.
Then there is Mary…who watched her sweet and perfect son be brutally crucified, unable to stop his suffering.
As I thought about each of these stories I realized an eerily common thread. In each story the child came close to death or actually died before the Lord intervened. Why? Why in the world does God not see our suffering and ease that burden long before the thought of death is even there? Does God enjoy seeing our suffering, hoping that it will bring us close to Him?
I say this again and again but God is a God of compassion. The Bible tells us about His compassion over and over again in the scriptures…
Jeremiah 29:11 ‘ “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you a hope and a future.” ‘
Trials and tribulations do not come from God. He does not create suffering in our lives to make us grow closer to Him or to test our faith. He is a good God and a loving God. Trials are a tactic the enemy uses to draw attention away from our relationship with God. And in those dark moments, the temptation to not turn to God is a real struggle.
But what I want you all to hear me say tonight is that GOD IS ALWAYS RIGHT NEXT TO YOU. Even in your trials, even in your suffering, even in your misery. He never leaves your side. And He sits close enough to speak life and encouragement into your ears….you just need to listen! He never promised to take away our struggles, but He does offer us a promise of His peace along with a reminder that He has overcome this filthy, evil world that we are passing through.
John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
Every single mom I could think of in the Bible that experienced suffering through the lives of her children had their God moment. They had that moment when He glued all of the pieces together and flipped over that puzzle to reveal that all along He had a a beautiful picture already designed from what we saw as chaos.
I think about the story of Joseph, a man who went through trial after trial. And he spoke these words:
Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.”
When I read that verse, I find myself wanting to speak these words to the devil himself in regards to my family. What Satan intends as harm, God intends for good. And my prayer is that even through our trials, God will continue to use the Carroll family to be a lighthouse that can be seen through the storms.
Please keep our family in your prayers this week, particularly health both physically and mentally.