I am pleased to tell you we survived youth camp! It was a wonderful week with great spiritual lessons for our teens, and lots of lessons for Malachi’s mommy. I guess you could say that this week was a reality check for me as it reminded me of how complicated our life can be.

Malachi handled the drive very well, and liked the company of the two pretty ladies that rode in my car. We arrived at camp and almost immediately I realized that my memory had failed me, as I didn’t remember quite how steep the hills and trails around the camp were. There were no spots close to the office, so I strapped Malachi in his wheelchair and started down from the top parking lot. To my horror, my shoes lost their traction on the wet pavement and Malachi pulled me down the hill like an out of control sled dog. My heart dropped and I hung as tight as I could, praying that I would be able to get control again. We were able to skid to a stop leaving Malachi smiling from ear to ear and me shaking like a leaf.

The week was a busy one and Malachi and I attended as much as he would tolerate. We would arrive at camp around 10 each morning and stay through dinner. He and I would make the 15 minute drive to our rental house where I would let Malachi swim in the pool, eat, and get his nightly medications. Then he and I would pick up food for the teens and head back to camp around 9pm and stay as long as needed…mostly until midnight, but up to 3am…crazy kids!

Unfortunately Malachi’s sleeping habits did not change in our new location. Regardless of what time he went to bed, he would wake up for a 2 hour stretch in the middle of the night and then wake up for the day by 8:00. By the end of the week we were physically and mentally exhausted! But I don’t regret taking him and experiencing camp with our group. And he truly loved every minute of the adventure!

During the chapel services Malachi and I would sit in the basement of the chapel with the summer staffers (counselors) who were all college aged. It touched my heart that so many of them remembered Malachi from last year, and they were so excited to see him again. Malachi acted like the big man on campus and put on a show for them each night, being super silly giggling and jabbering.

I don’t know if it was the exhaustion or something else, but this week was somewhat emotional for me. I caught myself on the verge of tears multiple times as I simply longed for life to be a bit easier. I wanted so badly to casually carry Malachi around and not experience overwhelming back pain. To not have to think through medication times and feeding schedules. Each time I got him out of the car (up to 14 times a day) I had to think through unstrapping his wheelchair, bottles in small coolers, medications, towels in case he vomited, extra outfits, and diapers…trying desperately to think of everything so I wouldn’t have to back track to the car again for a long stretch. Malachi did not handle the heat well and had an increase in seizures and vomiting periodically throughout the day.

Simple tasks become complicated while at camp. There was no easy place to change his diaper so I had to resort to dangling him on one of my car seats and working quickly. This may be too much information, but there were also no handicap accessible restrooms for me to take him in, so me using the restroom became an issue. If Jake or either of the other two chaperones were with the kids, I was very limited in my options- it would either have to leave Malachi unattended locked in the hot car (which I was just too uncomfortable to do) or just do the potty dance. I had to be extra conscious of how much I ate or drank, not knowing when I would get a restroom break again.

I guess I realized this week that the bigger Malachi gets, the more complicated our situation gets. It is much easier to improvise in situations with a small baby. I found myself having to sit out of certain parts of camp simply because there was no logistical and safe way to get him to the location of the activity. That was a sad realization for me.

One night as I laid Malachi down to sleep I just sat and watched him for several minutes, mesmerized by the fact that he has transformed into a toddler! I looked at his lean, long body and saw him simply as a little boy- no longer my baby.

With those physical transformations I am seeing so many mental transformations as well. Malachi has been so in tune with the world around him, and his curiosity is at an all time high. He no longer is content simply sitting, and wants to sit up and interact with his environment. It is so encouraging to see. He has also started a defiant streak and when I tell him not to do something will hesitate, smile, then do it again even bigger. The world is a game to him, and this week I was able to see him interact so much with others which is very different than last summer. Praise God for improvements!

We are still in recuperation mode but the chaos will continue this week as we head north for a short Ohio visit. We are long overdue to visit Malachi’s great grandmothers and Jake’s summer off is quickly slipping away from us.

Before we left for camp Malachi was able to go to his horse therapy session. Not only did he ride the horse all by himself again, but he also rode it backwards on his tummy!

 

So some final thoughts before I head towards bed for some much needed sleep! We have been spoiled by our small town. Where we live most people know Malachi and don’t bat an eye when we enter a public place. This week at camp we were surrounded by teenagers that lack tactfulness and were met with stares and whispers. As you know, curiosity towards Malachi does not necessarily bother Jake and I as we try to use it as an opportunity to educate others about the world of disabilities. The first day I was answering ignorant questions left and right without hesitation… “Why can’t he walk?” “What’s wrong with his feet?” “Why isn’t he looking at me?”   By day three my patience level was gone and my role switched from educator to annoyed mother as I avoided eye contact with the teens, longing for some anonymity.

While I understand we are anything but “normal”, sometimes it is just really nice to pretend like we are! I was so refreshed by the occasional person that would come by Malachi and treat him like a three year old boy. I was so grateful to the camp counselors that would sneak by and whisper “poop” (Malachi’s favorite word) into his ear and run off. I was grateful to our teens who would endlessly growl at Malachi like a lion to get him to laugh, just like they would do with a typical little boy. This week I craved the normal and cherished the glimpses we were given.

As Malachi grows, the more I see that little boy trapped in his body. He craves the normal just as much as we do, and wants to be talked to. He wants to be roughhoused and tossed. He wants to rub his hands in the mud and wipe them on his tummy. He wants to splash in the puddles and play in the rain. I am grateful for the people who choose to also see that side of Malachi, as hard as it may be to see.

This week we talked to the kids about Christ’s power being made perfect in our weakness. I talked to them about my many, many, many weaknesses- the biggest being my pride in thinking I can control things. I explained that I am reminded daily that I can control NOTHING, and opportunities that my plan aligns with God’s are simply a gift from a loving Father. This week, that weakness was spotlighted and my exasperation was simply due to a lack of control in my day.

Christ tells us: “My grace is sufficient for you, for my power is made perfect in weakness…” the rest of the verse explains that we should boast gladly about our weaknesses so that Christ’s power can be seen through us! How powerful is that thought?!? We should be boasting about our weaknesses because it shows how reliant we are on God to work through us.

I don’t know what your specific weakness may be…but whatever it may be, I hope that it brings you into a closer relationship with God. I hope that when you spot that weakness in yourself, you are reminded to lean on God to help you overcome it.

To end this entry, I thought you may enjoy a little video of silly Malachi. This was taken this evening as I got him ready for bed. He loves the sound of the velcro on his AFOs (leg braces).

We love you.

Jake, Leah, and Malachi