In the past few months some significant changes have happened with Ryan. I have sat down numerous times, started to write and end up deleting it. Needed to give myself time to process through all the feelings and emotions. But before I share the latest updates I have a story to share. I'm sorry if this post is going to be little long but at the end you will understand why I wanted to share this specific experience.
A few months ago Ryan had at a routine Dr. appointment. Due to some symptoms he was experiencing the Dr. performed an EGK in the office. It showed some concerning irregularities so we were strongly encouraged to go to Madigan hospital ER. Upon arrival they did another EGK. While it showed the same irregularities thankfully it was determined not to be a heart attack. But did warrant some further testing. They wanted Ryan to transfer out of his wheelchair and into a bed so they could do a chest x-ray. Only problem was, there was no lift. They were trying to convince Ryan they could physically lift him, even sending 4 men into the room to transfer him. Ryan went into full panic mode. There was no way he was going to allow that. Thankfully about that time Ryan's assigned nurse showed up. He could see the anxiety this was causing Ryan and suggested they try to get the x-ray while Ryan was still in his chair.
They sent down for the portable X-ray to be sent up to the room. Once the x-ray technician showed up she walked over to Ryan and immediately started to pull him forward to get the x-ray cassette behind him. I stopped her, telling her she can't just pull him forward like that. While I was trying to explain to her why she couldn't just pull him forward, his nurse once again intervened for Ryan. He accessed the situation and helped me to come up with a solution on how we could get the x-ray cassette behind Ryan without hurting him.
We worked together to pull a sheet behind him. Which enabled us to use the sheet to gently pull him forward, enough to get the x-ray cassette behind him. Once it was in place the technician asked us to step back away from Ryan. To come back behind the machine so she could get the picture. The only problem was Ryan was sitting way forward in his chair and I did not feel comfortable leaving his side. One little shift in weight and Ryan would have ended up falling face first on the floor. Once again I was in "discussion" with the technician. This time she would not back down and insisted I step back. I knew Ryan was in pain and uncomfortable, we just needed to get it done. Against my every instinct I moved away, all the while telling her that I didn't feel he was safe. It was only after I stepped back that I saw his nurse standing right beside Ryan. His arm resting across the back of Ryan's chair.
The technician got the machine set up and asked the nurse to step away. He, the nurse looked her square in the eye and shook his head NO! He refused to move away. She must have seen something in his eyes and realized it wasn't worth the argument. She took the x-ray while the nurse stood unmoving right beside Ryan the whole time making sure he was safe!
I can not say how much I appreciated that nurse. He stopped long enough to listen, to think quickly how to best help Ryan. To ease the stress of the situation for both Ryan and I. He stood unmoving at his side, making sure no harm came to him. I firmly believe God put that nurse there, that day and time for Ryan.
A few weeks later Ryan was seen by his cardiologist, which led to further testing. Including a cardiac MRI. It was difficult for Ryan to lay flat for the MRI but once again God used a wonderful nurse to work with the radiologist to help Ryan get as comfortable as possible. They were able to get the full scan done. After all the tests were finished, it took over a week for us to speak to the Dr. about the results.
The MRI showed what we pretty much already knew. The disease is effecting Ryan's heart muscles now. Meaning fibrosis and scaring of a large portion of his heart. Although its what's typically found at this age in boys with Duchenne, it was still hard to hear the reality of what we already knew. Another reality check, further progression . More loss and of course, grief.
I have shared in the past about grief when dealing with a progressive disease. Here is a previous post. https://donna-shiftingsand.blogspot.com/2015/10/intertwining-threads-of-grief.html Lets just say, its never ending. It changes, sometimes its a whisper, other times it screams. Even after all this time, I was surprised that this latest change brought such intense grief, yet again. Not at all a quiet whisper, more like a bull horn. Yet as I work through the emotions of this latest news God keeps bringing to my mind the picture of that nurse in the ER. Standing firm, protectively, unmoving right beside Ryan. Only in the memories or can I say "vision" it is not the nurse standing beside Ryan but Jesus!
God has not taken away Ryan's disability, nor the progression, but he continues to show us in little ways he is standing right beside Ryan. Ryan is never alone. Everything he goes through, even though at times is very painful and difficult Jesus is standing right beside him. I know this to be true. When I think back over the past 20 years God has proven again and again to be faithful to Ryan, Jeff and I.
