Brace yourself…I have an illogical amount of photos to share from our busy week.
Jake had the week off for fall break (yes, a wonderful week off that southerners invented) so we did our best to be intentional about using the time wisely. It is so easy to justify NOT doing things when you have children with complex needs. On a pros and cons list we are always heavy on the cons. But we can’t just talk about wanting to give them a typical life- we have to be willing to actually do it.
And almost as if we needed another push in the right direction, 4 of our 6 appointments for the week cancelled on us leaving us with some rare wide open chunks of time.
On Monday we made a trip down to Chattanooga to go to the zoo. It is a small zoo but perfectly suited to our needs. Levi hasn’t always handled the zoo well and this trip was no exception. Malachi was ecstatic about going and especially about seeing the jaguars.
Right next to the zoo is a massive handicap accessible playground so we took the boys over to check it out. Levi had never been on a playground before (germaphobe momma) and he loved every second of it. We were reminded that he knows no danger and is still learning the whole concept of cause and effect.
On Tuesday we hosted the first round of the tournament for the district championship. Our girls were able to snag the win!
On Wednesday we took the youth group out to a local campground for some tin foil dinners and flashlight tag. Malachi and Levi love spending time with the big kids!
Thursday was our busy day and started with a trip to the aquarium at Malachi’s request. His eyesight is improving so much and it was exciting to watch him track the fish. He tried hard to catch a glimpse of every creature that came close. Thankfully the otters, sharks, and penguins all got very close to him and swam right within his line of vision.
Again, Levi was not a fan.
Malachi also got to pet a snake! He waited patiently for his turn as the woman discussed the type of snake and different facts about it. He clung to every word, his eyes wide with wonder. He is such an intelligent kid, I wish you could see how well he handles receptive communication.
On Thursday night we took our soccer team to their district championship game. The game went into overtime and finally had to go to sudden death penalty kicks. Unfortunately we fell short earning 2nd in the district but we still have a chance to earn Regional champions. On Tuesday we will travel 2.5 hours (close to the border of Kentucky) to play our first round of the regional tournament.
And then there was Friday! I still had to work on Monday, Wednesday, and Friday this week so we did our best to cram these adventures around my work hours. Friday afternoon we took the boys to the pumpkin patch, which proved to be their favorite adventure of the week!
Malachi jumped with his daddy on a trampoline style pad and I took a short video to share with you:
Levi soaked it all in and even got to eat some hay before daddy caught him.
They each picked out a pumpkin which we will be painting soon.
And we all four rode the cow train which was an interesting endeavor.
The week was refreshing for us as a family. Sometimes we just need to pretend we are typical, and that is what we really tried to do this week. It is so important for us to create these opportunities for Malachi, knowing that we may not be able to do all these fun things as easily the larger he gets. The photo on the left was from 2017 when I was very pregnant with Levi. You can visibly see how long his legs have grown!
With less appointments this week we spent a lot more time around the house. I love watching Levi play with Malachi. Their love is so special. Earlier today I was cooking for the youth group and things were suspiciously quiet so I went on a hunt to find Levi. I peeked over the couch to see him sitting on Malachi’s lap and leaning down to give him a kiss. Their bond is so special.
Sunday nights have changed dramatically now that we are holding youth group here at the house. I start cooking around 2:30p and the kids come at 6:30 and stay sometimes until 10:00! We get our two to bed and I start writing the blog. I typically finish typing it around 12:30a and then head to bed myself for a few hours of sleep before Malachi wakes up.
Last Sunday night Malachi just couldn’t seem to get comfortable in his bed. He squirmed and wiggled all night long and I checked on him over the monitor what felt like hundreds of times. Levi also has had something GI going on and we have had to fiddle with his feedings, especially at night so he doesn’t throw everything up. Needless to say, it was an up and down night.
Right before I closed my eyes that night I read a post in one of my Facebook support groups about one of the warriors passing away. When that happens in our online community it is always a shock and a blow, as we can all relate to the situation with our own fighters.
This one hit me exceptionally hard though because you could tell by the young boys photo that he was not nearly as severe as Malachi. I read through the comments and found one where a brave momma asked the boy’s mom how he had passed (a question we are all asking but one we don’t want to verbalize). She was very gracious and explained that it was a freak accident. He had fallen out of his bed and his mouth was too close to the side of the mattress causing him to suffocate.
I prayed for that family as I drifted off to sleep, not even being able to imagine what their hearts must be going through.
Little did I know that on that very night we too would have a scare of our own with Malachi. I posted this to my Facebook page and it just seems appropriate to share it here as well:
It makes me sick to my stomach to even type this, but I just feel like I need to speak it. We almost lost Malachi early Monday morning while we slept.
I recently moved Malachi from our bed back into his room where he has a special mattress that helps keep him in a proper position while he sleeps. We have a baby monitor on him that stays inches from my face every night, one that I obsessively check while he sleeps. I wake up and check the monitor for Malachi and check to make sure Levi (sleeping in a crib next to me) hasn’t gotten any cords wrapped around his neck…something that happens more often than I care to share. I also run my hand over Levi’s belly so I can tell if his tube has been pulled out or burst while he sleeps. I literally do these “rounds” at least 8 times a night.
When I tuck Malachi in at night I have a weighted blanket that we strategically wrap around his lower legs to keep him from contorting his body while he sleeps. Both of his hips are dislocated as are his knees so he doesn’t bend his legs. But he does fold at the waist and fling his pencil straight legs up which causes him to wake up…the weighted blanket helps prevent this.
Malachi usually wakes up around 4am but for some reason he stayed asleep that night. I sleep in a twilight sleep and jump anytime I hear either boy move and around 6:30 I woke up to a very faint noise. I glanced in the monitor and at first it looked like Malachi wasn’t in the bed, but then I saw a tiny movement and realized that he had the weighted blanket up over his face, covering his entire body and head. I am baffled as to how this happened as we are so safety conscious with that blanket and setup.
I ran to his room and grabbed it off of his face and he took a big gasp of air which sent chills down my spine. I snatched him up and held him close and asked him if he was scared and he signed with his mouth that yes he was, which shattered my heart.
Had I not that faint gasp for air over the monitor things could have turned out very differently. He lacks the ability to grab things and I don’t think he is strong enough to push a blanket off successfully. Asphyxiation has always been my biggest fear with him.
All day I haven’t been able to get this incident out of my mind. I keep replaying that visual on the monitor and that sound of his gasp over and over in my head. The guilt is overwhelming and such a heavy cloud on me right now. Last night I couldn’t sleep and instead just watched him, that sick feeling in the pit of my stomach.
Sweet Malachi is so forgiving and has recovered from the incident just fine. But I can’t shake it. Being a special needs mom has a unique set of challenges but knowing that his delicate life rests in my hands is terrifying. There are so many horror stories like this one that didn’t end well- things that could have been prevented with just one tiny change in a routine.
Today I have hugged Malachi and covered him with kisses. I have thrown out that stupid blanket. And I have promised him that I will never make that mistake again.
But I have also prayed over his death. I have prayed that Malachi will always feel loved, safe, and comfortable. That he will never again need to feel the fear and helplessness he experienced this morning. I have prayed that when God carries him to heaven for his complete healing that He will do so in a painless, beautiful way.
This is the special needs mom life. We beg God for life for our children, yet also pray fervently over their death. I never knew a world like this one existed. A world full of so much beauty yet so much sorrow. A world where you are reminded again and again that your child has been entrusted to you for an undefined amount of time. That unknown timeline for their lives can drown you if you let it.
Tonight say a prayer with me for the special needs momma. Pray that the guilt and fear that the devil likes to plant in our hearts would wither and die. Pray for boldness and courage as we fight alongside our warrior children. We can’t afford to be meek. And pray for peace for our weary and worried hearts as this battle can get exhausting.
Needless to say, I spent the next several night watching him like a hawk instead of sleeping. It took me most of the week to get that nauseous feeling out of my stomach as I pondered the “what ifs”. The whole situation shook me to my core.
Our life with Malachi is very difficult, but it is so very special. Just knowing him for these past 6 years has transformed our lives and especially our walk with God. Biblical concepts that seemed so simple have come to life before our very eyes as we navigate the painful parts of faith.
I can’t imagine a life without him.
But I also have to remember that all that we are given in this life is not ours to claim.
The night he was born will forever be etched into my mind. There are certain details that I will never be able to unsee. But as we raced to the operating room and I watched those ceiling tiles whiz over my head I prayed the words of Job over and over again: “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.”
I don’t know why those exact words came out. I just remember wanting so desperately to plead for Malachi’s life, but also wanting God to know that I trusted Him fully.
Those words have been playing in my mind this week as I think about life with Malachi. Every day that we get to spend with him is a gift from God. I pray that my heart always remembers these words and when that time does come for Malachi to claim his heavenly healing that I will be able to say with my whole heart “Blessed be the name of the Lord.”
Jake heads back to work tomorrow and our chaos resumes! This momma is headed to bed.