The Giggle Hut Blog

If I’m going to be completely transparent with our journey, I need to share about the darker parts along with the positives. I won’t dabble in it for too long since it is so easy to post-up camp in the dark. An event that I’ll be sharing about here sent red flags all over the place and triggered people within the school in a couple hours.

To set the background to Jonathan’s mishap, the school and I have treaded in some rough waters regarding Jonathan’s transportation. He rides on the special needs bus to use the handicap/wheelchair ramp for his safety. This started because he has not been allowed to walk around the campus, so he’s required by the school to stay in a wheelchair throughout the day and excluded from Physical education. With that said at the end of every day it is hard on Jonathan’a overall strength and makes it even more difficult for me in helping him at home.

The bright shining light this last year was our bus driver who was absolutely phenomenal, and an all around excellent human being. He went above and beyond to help Jonathan out as well as myself and my mother. Picking up, and delivering Jonathan’s wheelchair wherever needed, and most of all he was intentional about encouraging Jonathan and his abilities. He was such a blessing to us. So on the rare occasions we had a substitute driver came for Jonathan we would notice a huge difference in his aid. Unfortunately it was one of these days where we had a hard time.

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At the end of a regular Friday, Jonathan got ready to board his bus. He began taking his struggled first step up the stairs and leaning over the hand rail just to lift his leg up to the second step. While his normal bus driver would hold his arm and gait belt to support his wait, this task was skipped. Jonathan ended up falling forward hitting his face on a rail (which he ended up getting a huge bruise). Not only did he start crying….He. Was. PISSED. One of the worst things came out of his mouth that shocked everyone, he yelled out, “This makes me want to KILL MYSELF! I hate muscular dystrophy!”

This triggered everyone in the vicinity of this incident, as well as notifying the school counselor, psychologist, the physical therapist, transportation/driver, and everyone else that needed to be involved with such a declaration. I received calls upon calls regarding Jonathan’s remark, and his emotional well-being. I was not completely in shock to hear, but rather it was a hard truth about how such a disability could break someone’s heart. And it wasn’t just anyone, it is my son. I hurt for him, and I do get mad at what is completely out of my control. Nobody said this would be easy. I know well we’re on this journey that we would eventually come to a point where it’s absolutely acceptable to be sad because we’re human and the situation does suck. (Maybe a tiny bit 😉)

If you were curious about why I dropped off the blog and social media for a couple months, getting counseling became a priority. I sought after weekly counseling for myself, Jonathan and Joshua to aid in coping with Muscular dystrophy. I also dove in to possible resources through the DMD program, and asked for continued prayer. Currently we are doing wonderful. Jonathan and Joshua responded well with counseling and is spending some time with their dad.

MURMURS OF THE HEART:
My revelation, thoughts, self-discovery, or insight from that still small voice.

“Help Me Obi-Wan Kenobi!” So the initial part of this year showed us how important properly navigating the emotional rollercoaster of the disability is essential to our journey. Don’t be shy about seeking counseling before hand. It is not because we’re surrendering to a weakness its because we’re gaining knowledge on how to master our emotions. Discerning our feelings, thoughts, reactions, and of course bringing our hurts to the foot of the Cross so God can trade it for healing.

It’s OK to Bleed. One of the worst stigmas out there is that as followers of Jesus we are not allowed to be sad, hurt, be broken, or depressed, and only allowed to put on a happy face. Are you kidding me?? Even Jesus wept in mourning. (Read John 11). You know that you need to go to the doctor when you know you’re hurt. Being in denial about it is like knowing you’re bleeding out, and you don’t seek medical attention. It’s ok to be hurt, but find help as soon as possible. Why marinade in it? So be sad, be hurt, and cry, but also move forward.

Find Your Joy. I know that no matter what, God has me. Not one single part of my life is hidden from Him, nor is it a surprise to Him. He knows exactly what will is happening. That means everything is in HIS control whether we grasp at it or not. So what I’m feeling right now is temporary and will eventually change. We can either choose joy or despair. Dont let your happiness and joy be circumstantial. “Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” (Philippians 4:4-7)