With Jake off for fall break we decided to get the kids out of the house and embark on an adventure! Traveling with the boys is always complicated but after the few months we have had we felt like a change of scenery might do us all some good. We headed to Pigeon Forge and spent two nights being tourists just two hours from home.
Our trip was a little bit of sweet and a little bit of sour. We had some really great moments and an equal amount of emotionally challenging ones.
We started the trip with a visit to a dinner theater called the Hatfields and McCoys. We have seen this one in the past but when we let Malachi choose which show to go to he voted to see it again. When we take his wheelchair into theaters like this one our seating is limited to the corners and top levels. Malachi is legally blind and cannot see anything from most of those spots. We decided this time to carry him in and take turns holding him so we could sit front and center in the “splash zone” (you get wet when the characters jump into the stage pool). Malachi was so excited and very much into the show when he went into a very aggressive seizure. After several minutes and him still being stuck in his seizure I quietly raced him out the back to try to reduce the stimuli. He finally stopped seizing and I asked him if he would like to go back to the show he signed yes. He did not have another seizure but him being in that one for so long depleted him of all energy. He tried hard to pay attention but his little mind was just tired.
On the way to the rental house we stopped by an inclusive playground and tried out some of the cool options they had for children with disabilities. Levi spent the time going from child to child asking them “Do you go to church?” And getting some strange looks back. Jake and I laughed at our tiny evangelist.
The next day was our biggest adventure day and we found a local company with a lot of activities offered. I had reached out to them a few weeks ago to ask about their accessibility and which activities they would allow Malachi to participate in. For liability reasons many companies will not allow him to participate even with adult assistance. For example, the only thing that Malachi can do at Dollywood is sit on the big train. He is not permitted on any rides. We have to be very cautious when planning activities because of his awareness- if he hears that he is not able to do something he cries so we try to avoid that from ever being something he overhears.
Adventure #1- We loaded a tiny train and took a short ride up to a barn to meet Abu the monkey and several large birds. I had convinced myself that Malachi would be ecstatic and he gave me more of a “too cool for school” teenager vibe instead. Levi liked watching the monkey but didn’t want the physical interaction as Abu hopped from person to person. Jake and I thoroughly enjoyed it though!
Adventure #2- we took the boys mudding on a UTV through the woods. This was a result of some sheer determination as we struggled to find a safe setup for Malachi. We finally managed to get a car seat and tray positioned for him, but he was screaming in frustration. I was cringing at the idea of heading out for the hour long ride with him so angry, but as we started the drive his anger was replaced with joy. Levi enjoyed it too, continually telling me “Daddy drives crazy”. This activity was most definitely a win.
I took a quick video for you so you could hear the giggles:
The next day we tried Adventure #3- a visit to the aquarium in Gatlinburg. It was so jam packed with people that we decided after 15 minutes to turn around and leave. Navigating the crowds with a wheelchair was just too much and our stress levels were spiking for all four of us. We made sure to see the sharks though!
Before we left Malachi and I got to sneak away on an outing to meet a penguin. Our penguin’s name was Moana, which Malachi loved. He got to pet the penguin three times, signing “more” each time he was finished so I know he enjoyed it even if his face didn’t show it haha. I think the fact that he got to do something that Levi wasn’t allowed to do (he wasn’t old enough) was the most exciting part!
At the end of the vacation I found myself feeling…deflated. It didn’t have the WOW factor I had really hoped it would have for the boys. In addition to that, I started to process what our family vacations will look like in the future. With Levi still being so young we can get away with going to a place like Pigeon Forge and only doing Malachi friendly activities. But as I looked out the window when we drove the main strip of Pigeon Forge my eyes were drawn to all of the shiny rides and activities that I know Levi will be begging for us to do when he gets older…the go carts, the alpine slides, the zip lines. Those are all activities that Malachi won’t be able to do. I started imagining the conversations that we will have to have in the future and realizing that we are going to have to navigate some complicated things in the near future.
We also dealt with some trauma moments from Levi that I didn’t see coming. On our big adventure day he had to wear paper bracelets for the activities we had purchased. As I lifted him up for the lady at the ticket counter to put on his bracelets he started crying. I didn’t understand why he was so upset after he had just been so excited and when I asked him what was wrong he cried “No surgery mama, no surgery”. He has attached bracelets to surgery, pain, and hospital stays. I tried to explain it to him but he just didn’t believe me.
For the next several hours that we were there he continued to ask “No surgery mama?” Over and over again for reassurance. Apparently this made his radar go up and the next day when we pulled into a parking garage at the aquarium the tears started again and he screamed “no doctor mommy, no doctor”. I guess he has attached parking garages to medical things.
These are the moments that break my heart. They remind me that our lives are full of physical scars and mental ones, and not having a way to heal those makes me so sad. Also realizing that there will be more scars in the future is so defeating. There is no winning this battle, there is only fighting with strength and bravery each time we go back into the battle.
The rest of this week has been full of fun as some of my family from Ohio came down for an extended visit. We have been staying up late playing cards and visiting, and the boys have been able to play with their cousins. It has been such a joy catching up with them! I have taken an insane amount of great photos, so here is a sampling.
This week I was walking in our yard and spotted a pile of brush that we have been meaning to clear for over a year now. It is one of those tasks that continues to get moved to the bottom of the list but is such an eye sore each time I spot it. But this week as I looked closely at it I noticed something new; inside that pile of chaos and ugly there were some beautiful flowers sprouting.
I sat and stared at that brush pile for quite awhile as I felt the Holy Spirit asking me to be still and allow God’s voice to be heard. And the longer I stared at the pile the more I started to see how well it represented my family and the testimony that God has been creating for us.
Our family is the ground that is hidden under that brush pile, covered in the death of our dreams, our expectations, and our comfort. As each new wave of trials has been stacked on top of us the darkness gets thicker and thicker. Yet through the tiny gaps the light is able to pierce that darkness and touch the soil. New growth is happening and God is literally bringing beauty from the ashes (Isaiah 61:3).
The Spirit laid this scripture on my heart and as I read it in the context of the brush pile I couldn’t help but feel God speaking to my heart. Maybe it will speak to you as well.
6 For God, who said, “Light shall shine out of darkness,” is the One who has shone in our hearts to give the Light of the knowledge of the glory of God in the face of Christ.
7 But we have this treasure in earthen containers, so that the extraordinary greatness of the power will be of God and not from ourselves; 8 we are afflicted in every way, but not crushed; perplexed, but not despairing; 9 persecuted, but not abandoned; struck down, but not destroyed; 10 always carrying around in the body the dying of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who live are constantly being handed over to death because of Jesus, so that the life of Jesus may also be revealed in our mortal flesh. 12 So death works in us, but life in you.
16 Therefore we do not lose heart, but though our outer person is decaying, yet our inner person is being renewed day by day. 17 For our momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, 18 while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.
2 Corinthians 4:6-12, 16-18
Verse 16 is the one I really needed to be reminded of this week, so it bears typing it again:
16 Therefore we do not lose heart, but though our outer person is decaying, yet our inner person is being renewed day by day.
Often times I forget that God is a renewing God. We all will go through brush pile times…times where the weight of the burdens you are under feels like it is almost too much to bear. But it is in those moments that we have to remember that God is renewing our spirit each and every day. He is still very active and very hard at work, allowing new life to spring forth even under the weight of burdens. And allowing beautiful things to grow out from under the brokenness that we carry. He will also provide the gaps in our hardest moments to allow us to let His light shine through.
And when you step back and really take a look you will notice that simple things like flowers will look even more magnificent when they are placed with a backdrop of affliction.
Afflicted but not crushed.
Perplexed but not despairing.
Persecuted but not abandoned.
Struck down but not destroyed.
I don’t think you can find a more uplifting verse than this one to kick off a new challenging week. Please keep us in your prayers as we tackle lots of medical appointments this week for both boys.