Oh boy, be ready for some pretty fun adventure updates. And lots of pictures with this blog entry!
By midweek Malachi was able to come off of all machines and was breathing relatively normally. He is hanging at a very safe range for his oxygen saturations and he finally has his energy back. We are scheduled to see his pulmonologist in the morning for a routine check up for both boys so I really need his levels to continue to maintain well. The last two pulmonologist appointments I have taken Malachi to have been very close to becoming a direct hopsital admission because of low oxygen numbers. I tried to reschedule this one for a time when he can be 100% but the next available appointment was January so we stuck with it. Say some prayers for us tomorrow morning!
And don’t tell Levi, but he has to get another blood draw tomorrow due to some low sodium readings on his last one. His seizure meds seem to be the culprit so we may have to tweak those a bit.
This week I rented the skating rink for our youth group and their families. The workers there made it such an inclusive experience for Malachi, letting him on the rink and letting him participate in all of the games. Levi gave the skates a try as well, but that was a short lived experience and he spent the rest of the time chasing his buddy.
Levi is a social butterfly and these last few weeks at home have been hard for him. This week he made up for lost time with lots of play dates, swimming, and friend time.
Malachi has been homeschooling this year and I am having Levi sit in the lessons as well. He has been such a sweet helped to his older brother.
Malachi was supposed to go on a mommy/son trip with me in early July, pairing it with some medical appointments in Nashville. The appointments (and trip) were moved by the surgeons to August but then Malachi got too sick to travel and was moved yet again until mid October. In the meantime Levi went on his mommy/son trip to Cincinnati (also paired with his surgery) and Malachi’s disappointment was definitely noticeable.
I told him that as soon as he was feeling better we would make a special trip happen. I spent days tossing out ideas on where to go and what to do and he finally decided on a trip to Medieval Times in Atlanta. This week he continued to trend upward so Friday afternoon I booked tickets and we went on a spur of the moment trip, just the two of us!
And let me tell you…it brought us each more joy than I ever could have imagined.
One of the things I treasure the most is when I see glimpses of typical, 9 year old Malachi. As we traveled for this trip I explained to him where we were going and what we would be doing and he kept falling into a fit of giggles. His excitement and anticipation was such a gift to my mommy heart.
We booked tickets around 2pm, started packing at 3pm, and left the house by 4pm. This is not a normal thing for me, as I usually try to plan thoroughly for trips! I packed his oxygen concentrator and enough machines to keep him safe if his health started to decline. We made the drive to Atlanta and arrived just in time for the show at 7:30.
When I tell you that the experience was amazing, that is an understatement. I had upgraded Malachi’s ticket so that he could be knighted by the queen, and the employees there made it such a magical experience for him. They took time to learn Malachi, even learning his signs. The queen’s bodyguard asked him if he wanted to meet the blue knight (his chosen knight) afterward and Malachi signed YES! Seeing them treat Malachi with such respect and inclusivity was special to me.
After Malachi’s ceremony I wheeled him to the side to snap a picture and he went straight into character. He was a true knight, flexing his muscle and waving his sword. It was cracking me up that I couldn’t get him to smile…he was using his imagination so intensely.
I finally got him to crack a smile and then the rest of the night was full of giggles and fun.
The handicap seating for the show is at the very top of the stadium/arena and I narrated every second to him, Malachi clinging onto every word. He is blind, but the show included lots of lights so he was able to participate at the appropriate times. Whenever his knight got ready for his turn they shined the blue lights on us, cueing Malachi. He held onto his sword, swinging it when the blue knight started to lose a fight as if he was his sidekick in battle. His imagination was flaring and watching him brought me so much joy.
After the show Malachi got to meet the blue knight, who happened to be the winner of the tournament, and he was starry eyed. The knight signed Malachi’s knighthood certificate and he was one happy 9 year old.
I took a few videos of the night to share with Jake later, and I picked one to share with you all so you can see his pure joy:
We checked into a hotel and I gave Malachi a list of things to choose from to do next. He chose to go to a movie, so we headed to the theater and watched Minions until 12:45am. Then we settled back into the hotel for the night and got ready for meds and bed. Malachi couldn’t stop smiling in the room, so excited to be in a hotel for the night. The next morning when he woke up he processed for a second, and then when he realized where he was at he started beaming again.
My brother lives in Atlanta and my niece happened to have a soccer game so we headed there to cheer her on. We spent some time visiting with the cousins, then started on our trip back. We stopped on the way home and split a slice of Oreo pie (his choice…and he demolished it) and I let Malachi “buy me lunch”, helping him sign the receipt.
We were gone for exactly 24 hours. I knew the trip would be fun for him but I was pleasantly surprised. It just went so seamlessly without a single diaper blowout, big seizure, or dramatic medical issue. Our trips are always paired with medical appointments and procedures so having a trip without any other agenda was just so freeing and fun. It is hard to explain, but I felt like a real mother. Not just a medical mom, just a regular mom having fun with her son.
Seeing him so happy did something so good for my soul. It reminded me we may not know what we are doing, but our boys know that they are loved and treasured. And that they are heard and seen for the amazing individuals that they are.
Malachi is already asking to go back. When I asked him what his favorite things were he signed yes for the hotel and the Medieval Times. He was so excited to show Jake the pictures and videos and show off his new sword and shield.
As we were driving through the chaos that is Atlanta I turned on some praise and worship and became “that driver”, singing with all of my might. My heart was so light, airy and thankful. A relatively new song came on the radio called “Honey in the Rock”; here are a few of the lyrics:
There’s honey in the rock
Water in the stone
Manna on the ground
No matter where I go
I don’t need to worry now that I know
Everything I need You’ve got
There’s honey in the rock
I keep looking, I keep finding
You keep giving, keep providing
I have all that I need
You are all that I need
I keep praying, You keep moving
I keep praising, You keep proving
I have all that I need
You are all that I need
These lyrics are pulled from several different scriptures in the Bible (Psalm 81, Exodus 16, Exodus 17), but the main theme being pulled from the Israelites time in the wilderness.
Every single day God provided them with the things they needed to get through that 24 hours. Without the provision of God they would have perished, completing a task that is impossible without Him.
And I feel that deep within my bones.
The things that I have to offer my boys are just not enough. Not enough strength, not enough knowledge, not enough money, not enough time, not enough sleep. I am not enough.
But God is my El Roi. He is “the God who sees”. And just like He sustained the His people in the wilderness I watch God sustain my family. Each day He gives us the nutrition we need to strengthen us for that days God-given agenda.
And every day He proves His faithfulness to us, again and again and again.
This week He not only gave me manna from heaven and water from the rock, but He gave me the blessing of precious, uncomplicated time with my son. What a treasured gift.
And what a Father He truly is.