What a wonderful, exhausting, and powerful week we just had! On Tuesday we loaded up our teenagers and took them to camp for the week. This is our tenth year doing camp with the youth, and we have gone from 17 campers to 50 (56 if you count my crew and some extra help)!
There is always an incredible amount of prep work required to pull this off every year, and we spend so much time in prayer leading up to camp over these young adults. When we actually get to camp we get to enjoy watching God do His thing, and being present for them as they grow in Christ.
Flashback to the first year I took both kids to camp…
Levi was on oxygen, feeds, and a pulse ox 24 hours a day and we didn’t have a portable oxygen concentrator so I had to haul dozens of oxygen tanks with us for the week in addition to the other supplies for both boys. I was solo that year, living in a hotel room for the week and on the final night we came back to the hotel at midnight to find a giant rat turd on the bed that was most definitely not there when we left for that day. All I could picture was a rat on Malachi in the middle of the night and him not being able to tell me or push it off, so I packed up allllll the tanks, equipment, boys, and checked into another hotel around 4am. That was a rough year.
Since that horrific experience, I have had some wonderful friends that feel led to take time off each year and come along to help me with the boys. We rent an AirBNB and travel back and forth each day, and the boys genuinely look forward to camp with the big kids each year. It is our summer vacation (as unconventional as it may be) and they love it.
God moved in some pretty amazing ways throughout the week and we left feeling so encouraged about the preparation God is doing with these teens to do some big things for the Kingdom of God. I want to gush right now, giving you examples, but I also feel I need to protect the confidentiality of our teens!
Camp days are like no other, most nights staying up with the teens until 2am. The real winners are the lovely friends that came and helped with the boys, tolerating my late nights with the teens and running nightly routines and meds with the boys at the rental.
We came home yesterday afternoon and we have been taking turns napping all day. I was supposed to leave with Malachi for Vanderbilt on Tuesday but we are going to slide that plan a bit and I will head out Wednesday morning, drive there just in time for his appointments, then spend Wednesday evening doing a few fun things to jazz up his ”trip with mom”. We will stay the night in a hotel on Wednesday because I am not confident I have the mental clarity right now to drive back the same day; that would be nearly 7 hours of driving in one day on limited sleep and lots of stops along the way for Malachi’s needs.
Malachi will be getting x-rays and we will be talking with the spinal surgeon about his new degree of scoliosis and if we need to intervene (surgery) anytime soon. Which we are praying against! And then we will meet with his orthopedic surgeon to talk about his foot positioning and if more tendon release surgeries are needed. His cerebral palsy manifests in his ankles by pulling the tendons extremely tight- tight enough to bring his foot up and out.
Malachi wears AFO braces to help keep them in position but those can only help maintain positioning. Sometimes surgical intervention is needed. Malachi has already had several corrective surgeries on his feet and ankles, several months of serial castings, and pins placed through his foot bones to reform them. But his brain continues to send mixed signals creating more damage.
I am not expecting to hear any new or shocking information at these appointments. There is a pretty good chance they will mention surgery for the feet, and that isn’t an earth shattering thing. If the spinal surgeon mentions surgery being needed, which I don’t expect based on last year’s degree of curvature, I will most definitely have trouble accepting that (meaning I will cry my eyes out in his office). Spine surgeries are rough on medically complex children.
Malachi and I will come home Thursday. And a week from today I will be packing up Levi and he and I will head to Cincinnati. His first pre-op is next Monday and his surgery will be Friday morning. We don’t know what they will have to do in surgery until they get in there and look at his airway, but they usually keep it an outpatient surgery and have us come back in a few months if a larger, inpatient surgery is needed.
Let the road trips begin! We will divide and conquer for the rest of the summer trips, Jake staying home with one and me traveling with the other. I am not looking forward to any of these trips, but also recognize that they have to be done. So we just repeat ”We can do hard things” over and over again until we start to believe it.
Last night I sat down to start planning the details of Nashville with Malachi. I try to find something extra special to do with him each year, and as I scrolled through dozens of options every single one of them was not feasible for me to do with him. I was left with the same few things we always do, which I am sure he wouldn’t mind. But my momma heart wants so badly to give him new, age appropriate experiences. The older he gets, the more limited we are as I can’t carry him safely like I used to.
As I scrolled through all of these amazing activities I could feel emotions welling up inside of me, eventually spilling out of my eyes as I mourned for Malachi. He is such a kind-hearted, sweet sweet boy. He has the mind of a 9 year old and is so aware when he isn’t able to do the fun things other children are doing. I wish our world had so many more options that included all abilities.
If you are a Nashville fan and can think of any ideas we may be missing send me a message! Our usuals are: Rainforest Cafe, the zoo, Build a Bear, movies, arcade (Dave & Busters or Chuck-e-cheese).
Malachi is SO EXCITED about this trip, laughing uncontrollably every time we talk about it. And Levi is crying his eyes out every time we talk about it. The jealousy is thick in our home right now.
The Lord led me to a verse last week that has really been playing in my mind.
Isaiah 29:19 ”The afflicted also will increase their gladness in the Lord…”
As I have read over these words and absorbed them this week they have become a new prayer. Affliction is a very real and present thing in our family, and it has interwoven itself into the fabric of our testimony. We have prayed against afflictions, yet they still remain.
God has chosen our family to bear the label of ”affliction”. It is one that he could easily remove in an instant, so the fact that it remains is proof enough that it is meant to be a major part of our story.
So while God continues to author each chapter in that story, my prayer is that we will be able to increase our gladness in the Lord while we wait patiently for Him to work.
Yes, we bear the label of affliction. But there are so many other beautiful post it notes on our board that would have never been written without affliction also being present.
Please be in prayer for our family over the next two weeks. Pray for good reports, safe travels, and memorable moments of joy!
3 thoughts on “Afflictions”
You could selfishly choose to go anywhere for a more restful vacation, but you choose to offer yourselves as a sacrifice to the youth of your church. What an amazing gift and one that those teens will always remember as being a unique gift to them, esp considering your circumstances with Levi and Malachi. There is that additional blessing of Levi and Malachi being with such a wonderful group of people who accept them,, enjoy being with them, and serving them. That’s more valuable than a quiet family vacation. Blessings as you continue your journey to find the best Medical intervention for them at each stage of their development
Love the verse God has laid on your heart and the courage and boldness is takes to embrace that ‘even though affliction is present there is beauty and gladness in the midst’…raise a hallelujah over His goodness!
Have y’all tried the science center and planetarium? They have several exhibits based on sound or touch that would be interactive. I think most everything is wheelchair accessible.