Wednesday, April 25, 2018

No muscular dystrophy in heaven

As Jill Kyle and I drove down to Indy this morning to a regular doctors visit at Rileys we were talking about new procedures, advancements, and ideas that doctors may bring up.
Jill said but nothing can stop the muscle deterioration though. Well one thing can.
Kyle said yes I will be healed when I get to heaven.
I wonder and ask has my faith been changed because of Kyle? The answer is obviously yes but the bigger question is it for the good or bad?
Faith is easily shaped by personal experiences and a lens to make things make sense in our own world.
But more importantly thinking through truths that are more solid than just ones experience.
I have no idea how supernatural physical healing works. I do not want to discount it but at the same time not wanting to waste my and Kyle's life away waiting for something miraculous. Years can be wasted with him thinking hes cursed a mistake imperfect and useless because of his disease if all we do is talk and pray for physical healing.
We believe God has intervened and provided Kyle with many medical procedures especially in the last year. Is the disease eventually going to beat him in his body? Yes just like someday I and everyone else is going to die.
In the end each day we view as a blessing. Every morning  when Kyle wakes up and says top of the morning to Ya (not you he corrected me) those are special blessed days. 
Someday in the future we have faith in Kyle being perfect in physical health but in the meantime we live learn and are blessed by him.

Wednesday, April 18, 2018

Muscular dystrophy didn't win

It was a year ago today that Jill made a very tough decision. Kyle had passed out from coughing and his oxygen level went down he would have died if she hadn't called 911. The hospice nurse was with her at the time and said this is your decision. Jill thought and was pretty determined that this had happened due to one of his medications and could be solved.
After the paramedics put a cpap machine on him he came back to.
For the next few days/weeks after that Kyle was not happy Jill had saved his life. He told us he wanted to die.
Over the months and now year Kyle has told us he saw Jill rubbing his chest calling his name that day. I'm not sure how an out of body experience works but Kyle has described it that way.
We think of that decision and the effect not only on our immediate family but extend circles. We can simply say God has blessed us this past year. It is that simple but so complex in that decision and many other medical ones that we (especially Jill) have made. Being prepared to make a decision like this is something we have thought through.
 I hate thinking about all the medical decisions and try to put them off and hope they'll go away. But these are reality. The trilogy was the best decision that has been made. That has drastically improved Kyle's quality of life since last July.
As we are grateful for this past year we are also hopeful for the future. We go at Kyle's speed which has increased of late. He wants to visit Boston, Florida, Disney, and even go on a cruise.
We have no idea what the next year will hold either good or bad but we enjoy each day God blessed us with him.