I guess it is best to just rip the bandaid off and share with you that Malachi’s Make-A-Wish (MAW) plan hit a roadblock. The foundation wrote to us and shared that the safari place that we wanted to take him to has refused to work with MAW in the past at making experiences special for wish kids. They said they could still send us to Myrtle Beach and give us the money towards purchasing tickets there but unfortunately without the safari creating a special experience for Malachi it just isn’t possible. The facilities are not handicap accessible and if they aren’t willing to help make it happen for Malachi then it would be a nightmare to try to navigate.
So we went back to the drawing board with Malachi and revisited our previous list of options. And I spent hours upon hours trying to find similar experiences somewhere within driving distance. MAW suggested San Diego Zoo as they have partnered with them in the past for other wish kids but flying with Malachi is an unknown and we don’t want to introduce a pressure change to his brain and spark a week of seizures or shunt issues, especially with us being so far from home.
Malachi was obviously very disappointed, but I promised him we would find something even better! But the more I researched the more frantic I started to get, not completely sure that I could keep that promise.
Malachi has finally settled on a new wish and we are working to finalize the date. We narrowed it down to him getting a one on one meeting with a “real” dinosaur and him getting to interact with dolphins and get splashed by them. Malachi finally settled on the dolphins! With Malachi’s g-tube and positional requirements, getting in the water with them makes me a bit anxious but MAW is working with Sea World to create a close encounter that works for him.
Since his wish is in Orlando we will get to stay at the Give the Kids the World Village, a special resort for MAW kids. He will get to do three days at Disney, two days at Universal Studios (where hopefully he will get to meet the velociraptor), and a very special day at Sea World. They also offer tickets to some of the surrounding attractions, like Gator Land where he can hold a real alligator. When we presented Malachi with all of the potential things we could do on this trip his excitement grew and he is genuinely pumped!
He wants to see some of the shows at Disney (Lion King and Frozen specifically) and ride some of the rides. And the resort is fully accessible as well which makes life so much easier for the week.
Confessions of a control freak: If I am being honest with you all I must admit that the idea of this trip is overwhelming to Jake and I. We avoid crowds at all costs and the one day we tried at Disney in 2020 (pre-Covid) was a whole lot to handle. The potential for sickness is huge and being so far from our home hospital and medical supplies has been making my head spin. But I also recognize that these thoughts are fear based and I can’t let the what-ifs control Malachi’s quality of life.
Levi is exceptionally excited about the trip as well, and every time he mentions “Malachi’s wish” Malachi beams with pride.
Aside from recurring ear infections and minor sickness, Levi has been doing great. He was evaluated for services in the school (physical therapy aka PT and occupational therapy aka OT) and we met on Friday to discuss the results.
Just to do a slight recap….
Levi set off on his own journey at birth that also brought about his own timeline for things. In regards to milestones he has always been behind the norm. With his vocal cord paralysis he wasn’t able to eat/drink/speak on the same timeline as peers. His first five months was spent in an hospital with limited interactions and mobility, requiring lots of sedation meds after his many surgeries. And due to his brain damage resulting in cerebral palsy he was a bit slower to walk/jump/run, etc. We have never been worried about missed milestones and have just trusted the timeline that God has created for Levi. And we see every new skill as such a gift from God.
We enrolled him in a small private preschool in January and over the last two months we have been able to witness some areas where he could use some more focused attention. The school has a program to help struggling students and we have been trying to isolate the areas that we need to focus on. That led to a PT and OT evaluation.
On Friday we learned that there are some pretty significant deficits, which did not surprise us at all. In addition to the therapies I take him to each week, he will now start receiving services from OT in the school setting. This new knowledge from testing also shows us that he will need that extra monitoring academically and help academically when it is needed.
I am so thankful that we have found a school setting that is eager and willing to help come alongside Levi exactly where he is at and help him succeed in the regular education environment with support. He is incredibly smart and has so much potential/desire to learn.
Our Carroll family “six weeks of planned chaos” is wrapping up this coming weekend and we will be settling back in to our normal, wildly unpredictable chaos. The adult soccer league we run wraps up tomorrow and the kids league will play their final game Saturday. It has been a really busy and fun few weeks for me; I love serving and talking to kids about Jesus. Being able to combine soccer and Christ is such a treasure to me.
In the last few months I have seen such a change in Malachi that has brought about a wave of thankfulness in my heart. His seizures still happen 4-6 times a day, but he is also learning how to stay calm and not trigger more. I am not really sure that I can explain it well, but I will try.
Malachi’s epilepsy is triggered by discomfort. So any extra drainage from seasonal allergies, any positional body pain, any new sensory overload (lights coming on) used to trigger seizures. Every single morning for years he wakes up having a seizure. Literally every single morning. And most often those seizures would last until he would vomit. We keep towels in every bed and have become professional vomit catchers. It was a race against the seizure to get his body up and in a safe position to not smother himself and not aspirate his own vomit.
When we decided to enroll Levi in school I knew that this would add a stressor to Malachi with him having to get up early for the drop off. When we enrolled Levi, Malachi was waking up several times at night with seizures and requiring breathing treatments each morning. Our medical morning routine took at least 45 minutes just to get him in a safe enough place to administer medications without fear of him vomiting them up with another seizure. I was so worried that adding a forced wake up and car ride each morning would have a negative impact on Malachi.
But it seems to have done the opposite. Malachi has been learning to cope and I have been so impressed with his ability to adjust. We take Levi to school, usually without incidence, and he falls back asleep when we get back. He has not required his breathing machines as often since the new routine started and his flexibility in schedule has been such a game changer.
The future with Malachi always holds potential to intimidate me on any given day. But seeing him “act older” by learning to adjust has been such an encouragement to me.
I guess the best way to explain it is that Malachi is helping. He is trying everything in his power to work through this transition and having him “help” like that is new and amazing. And is such a reminder of how amazingly intelligent he truly is.
I have such a respect for my son. His thoughtfulness and his kindness, even when he is living a life that isn’t always fair to him.
This past week I celebrated my 37th (going on 90) birthday! A sweet friend took Malachi to the store and let him choose from a multiple choice list something to pick out for me. He chose flowers, something I have always loved to have in the house. Seeing his proud smile when he gave them to me was heartwarming and special.
This week as I prepped the lesson for the teenagers I studied several scriptures that contained prayers of Thanksgiving. As I read them I could feel my heart swelling with such reflection at the gift from God these last few weeks have been. And I don’t know that I often do a very good job reflecting that thankfulness and joy back to God. Or even conveying His goodness to others.
Psalm 145:1-7 I will extol You, my God, O King, and I will bless Your name forever and ever. Every day I will bless You, and I will praise Your name forever and ever. Great is the Lord, and highly to be praised, and His greatness is unsearchable. One generation shall praise Your works to another, and shall declare Your mighty acts. On the glorious splendor of Your majesty and on Your wonderful works, I will meditate. Men shall speak of the power of Your awesome acts, and I will tell of Your greatness. They shall eagerly utter the memory of Your abundant goodness and will shout joyfully of Your righteousness.
As I read this scripture I was challenged by it. Verbalizing the greatness of God is such an act of respect and honor to Him. And mediating on His splendor and wonderful works keeps my mind from drifting to the negative. As I read this scripture I felt more resolute to shout joyfully about His righteousness.
I pray that you look into our lives and see the hand of God over every aspect. The easy, the hard, the good, the bad. I pray that we are able to be a living testimony of His tender mercies, and I pray for more opportunities to eagerly tell of His greatness.
May we never miss an opportunity to let His light shine through us, His vessels.
Much love and thankfulness to God,