“But for family and caregivers, this brutal list is absolutely heartbreaking to watch them live out and verbalize these thoughts. This is as real as it is going to get for us. Beyond these thoughts he has actions have followed suit out of aggression and anxiety, and has gone as far as stating he’d rather kill himself than to live like this. “
The Gigglehut mom
Jonathan has walked into this part of the journey where depression exists, and it seems to be an inevitable milestone that a person with DMD walks through. We received our diagnosis not too long ago, and along with all the other specialty appointments, depression and anxiety screening is part of his check-up. That tells me in the medical world, it’s only a matter of time before he gets to that point, and it could be short or something we have to work through long term. We did not get the short one we got the long one that we have to work through, and it’s more difficult than I thought it would be. Jonathan has gone in and out of that rabbit hole On the daily he is facing a long list of DMD acceptance, worries and understanding.
Jonathan’s Brutal List of HIS Personal thoughts:
- Everyday tasks will not be easy anymore.
- His indepedance was taken from him.
- His mobility is being taken from him.
- He might need life-long medical care.
- He is physically weaker than most people.
- He is always below everyone’s eye level.
- If ever in a dangerous or life-threatening situation he might not be able to defend himself.
- People feel intimidated because he is in a wheelchair, and rarely interact with him.
- Dating will be slim to none because no girl would ever like me.
- His father is no longer around and chooses that because of Jonathan’s disability and is too hard to take care of.
Every single one of these thoughts have been expressed by him verbally multiple times to me, family, to caring health care providers and school staff. I’m sure this list of thoughts with exception of a few have been in the minds of most patients with DMD, or other disabled individuals. But for family and caregivers, this brutal list is absolutely heartbreaking to watch them live out and verbalize these thoughts.
This is as real as it is going to get for us. Beyond these thoughts he has acted out poorly, out of aggression and anxiety, and has gone as far as stating he’d rather kill himself than to live like this. This has brought the attention of the school to his wellbeing, and today this is where we sit in this journey. It has been heartbreaking for all of us to see how frustrated he’s been. It brings me to prayer and analysis of many reasons why he is currently going through this moment. Possible reasons:
- DMD mobility changes
- Puberty
- Familial issues and changes
- Entering new school
- School peer problems
MURMURS OF THE HEART
My revelation, thoughts, self-discovery, or insight from that still small voice.
Brutal truths for a brutal list:
God has the final word on ALL things.
Jesus was the Word at the beginning and will be forever. Nothing can change that whether you believe it or not.
EVERY person’s life is worth living whether difficult or not. God has always had the answers for us….
- Everyday tasks will not be easy anymore.
“I have said these things to you, that in Me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world” (John 16:33) - His indepedance and mobility is being taken from him. As heart breaking as this is, GOD’s plan may not be obvious from our small perspective but will be worked out in time. By no means will God ever take something good from someone. “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” (Romans 8:28)
- He might need life-long medical care and is physically weaker than most people. “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand” (Isaiah 41:10)
- He is always below everyone’s eye level. This does NOT mean he is powerless, does NOT mean he is unsafe. If we think about the perspective it means he’ll always be looking to the heavens while everyone else is looking down. “To whom will you compare me? Or who is my equal?” says the Holy One. Lift up your eyes and look to the heavens: Who created all these? He who brings out the starry host one by one and calls forth each of them by name. Because of his great power and mighty strength, not one of them is missing.” Isaiah 40:25-26
- If ever in a dangerous or life-threatening situation he might not be able to defend himself. Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.” (Deut. 31:6)
- People feel intimidated because he is in a wheelchair, and rarely interact with him. I have to remind him that he must remember that everyone can be scared and intimidated by others. Pray for understanding. “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline” (2 Timothy 1:7)
- Dating will be slim to none because no girl would ever like him. There are times when we are supposed to be solo, and if God wills for someone to have a spouse He will not delay. Then the Lord God said, “It is not good that the man should be alone; I will make him a helper fit for him.” (Genesis 2:18)
- His father is no longer around and chooses that because of Jonathan’s disability and is too hard to take care of. This was an exceptionally heavy one for us. I have no clue about what his father thinks, there’s no communication, and I can only read actions. I try not to draw assumptions and give the benefit of the doubt, but I can only tell Jonathan that deep down his dad still cares about him. More importantly, we are not ever in desperate need of one specific person in our lives. God has ALWAYS sent someone to help in perfect timing. Though Jonathan feels the emotional need for his father, his Heavenly Father WILL NOT LEAVE. For my father and my mother have forsaken me, but the Lord will take me in. (Psalms 27:10)
Acceptance: Acceptance is hard for everyone. This post in itself was so hard for me, as I am working on letting go my own expectations and accepting God’s truths. We must accept where we are in the plan of things. His plans are greater than ours and knows the desires of our hearts.
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