The Story of Michael

Michael-rare-disorder

This child with a disorder so rare that it doesn't even have a name, teaches us about love and humanity. 

(From Lifeaction.org)

This story touched my heart so I had to share it with you.

Child with rare disability teaches us about love and humanity

RubyRayMedia on Rumble
Published Jul 27, 2022
5:14 viewing length

Sarah: We have four children, Emma, James, Claire and Michael. Michael was born premature at 33 weeks.

James: From there, our lives changed dramatically.

Sarah: There were a lot of many setbacks, like he wasn't tolerating his feeds as well, you know, everything took a little bit longer for Michael. One night, he was about four days old, he started having these episodes where he would forget to breathe. He had a very big event. He turned completely blue. There were three nurses sort of working on him. And I'm sitting there and seeing this happen right before my eyes. And I said a prayer. And I said to God, just let him live; I'll do anything. He had to be put on caffeine to sort of remind his brain to breathe. He had to be on that for a few weeks. 

The other kids, they didn't really understand why they couldn't see their brother. He was there for 39 days. We followed up with the pediatrician, and she started noticing some things that were very concerning with his eye movements. And they suggested that if we're going to do the eyes, we might as well look at the brain, just to make sure we're not missing anything.

James: Michael's neurologist said, This is a very rare condition. There's only 12 kids in the world that have it.

Sarah: It's a genetic mutation, 15q 13.3.

James: He will more than likely never walk on his own. He'll probably never talk.

Sarah: He's visually impaired. He has a feeding tube. He is also nonverbal, and has cognitive impairments.

James: The types of things that most people take for granted, they're a struggle for Michael. He's going to be with us for the rest of his life. When you're having children, all you think is, Please God, let them be healthy,

Sarah: You have this expectation, they're gonna one day leave your house and maybe potentially take care of you one day. When you have a child like Michael, that expectation is gone.

James: There's so much more to it than just being healthy. It's a very narrow view.

Sarah: You realize that you will be the one taking care of him. But you also realize that's what God does for us every single day.

James: Everything Michael does is a miracle.

Lamar: I think Michael has taught a lot of us a lot of things. Society needs to be aware of those that are vulnerable. And I think that's the biggest challenge for our culture, right now. We seem to want perfection, bodily perfection, business perfection, all these different types of things that are out there. And it's not possible. People with disabilities, those children, those adults, really remind us that they are part of our family.

James: We hear all the arguments about suffering and fairness and quality of life. And I've had people say, Did you have tests done? Almost like they're trying to make an excuse for why we shouldn't have had the baby. To imply that because their quality of life is different than yours might be you think they're not happy, and you think that they're not useful to society, but they are. We were lucky enough for God to give us, Michael, because we are pro-life.

Lamar: I'm shocked by the countries that sort of are doing the selective abortions, with regards to children that may have disabilities. It's like they're almost hunting them down and saying, We're going to execute you, and this idea of trying to make the perfect human race or the perfect human people.

Sarah: We have to do a better job. Having more abortions and having less kids is not the solution of communities not treating people well.

James: Life has value, no matter what their situation is. Having Michael in our family has taught us things that you can't learn from books or from classes.

Sarah: Michael taught me what unconditional love is.

James: My children are not perfect, but they have a level of empathy and caring for other children that came specifically from growing up around a child like Michael. It's taught us how to love. It's taught us how to slow down. It's taught us how to be there for each other. It's taught us how to be there for other people. It's taught us how to get through things.

Sarah: When you have a child like Michael, there's people that show up for you. And it sort of teaches you how important that is.

James: The number of people in organizations that reached out to us, and that exist, and have helped us is amazing. It's easy to look at things and say this doesn't work right. But then on the flip side of that you've got a child like Michael who when he laughs there's no way that you don't melt when you hear this kid laugh.

James: Michael's never made a mistake. I've made plenty of mistakes. I made plenty of mistakes today, but Michaels never made a mistake. So Michael can't be considered a mistake. God's got a plan for Michael and it's been working out pretty well for him. I couldn't imagine not giving him a chance to fulfill that plan.


*Transcribed by Ruby Ray Media's own Carol Allen

Related

I am sure we have all asked this question, "Why me"? Or perhaps we have said, "Why does this keep happening?" Recently someone close to me was having a difficult go of it, and she said, "Every time I start to get ahead, something happens". But this is true. We start to get ahead; we are going along whistling a happy tune, and suddenly, boom, a roadblock, a challenge. And then we start to ask why. Listen to actor Jon Voight. God told him, "It's supposed to be difficult."

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  • This commment is unpublished.
    Donna Ayers-Vorbach · 2 months ago
    Prayers for the continued strength, love and courage, and that Tesla Beds will correct this rare disorder.
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