Nurses, Gods ministering Angels.

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.  

Las Vegas trip 2019. Happy 22nd Birthday Ryan.

It all started about a month ago, Ryan says, mom it would be fun to see Penn and Teller do their show. That was all I needed to hear. I started checking to see where they performed and found out they were at the Rio hotel in Las Vegas. I mentioned it to Jeff and he said “let’s make it happen!”

You must understand, Ryan NEVER wants to do anything, especially when it involves being around crowds and unfamiliar surroundings. So to say we jumped at this chance to get him out of the house is an understatement!  We quickly started working out the details, we weren’t going to give him a chance to change his mind!

First thing was to make sure we could get tickets, then started planning our trip. Jeff had to be in Sacramento for work, so we drove our R.V to California, spent a few days there, then off to Vegas!  

Here is a little summary of the things we were able to do;

Walked through Caesars Palace, and down a little of the Vegas Strip. 

Ate at Gordon Ramsey’s pub where we had the best hamburger, Beef Wellington and sticky toffee pudding ever!

We ate the best steaks at the Voodoo Steak House on the 50th floor of the Rio Hotel. We enjoyed the food and the view was awesome. 

We saw 2 shows, CrissAngel Mindfreak  and of course Penn and Teller.  Both were illusionist/magicians and about as opposite as you can get. One flashy and loud, the other laid back and relaxed, but both were very good. After Penn and Tellers performance, Ryan was able to meet them and get a picture.   

 

We went to the top of the Stratosphere Tower. The tallest freestanding observation tower in the United States at 1,149 ft. I was surprised when Ryan asked to do this, since he does not like heights.  The view was amazing. There was a rare lightening storm in the area, this was the perfect spot to watch the storm move through.

 Ryan played the slots, lost $20.00 and decided gambling was not his thing.

 Drove over the Hoover Dam.

 Spent the day at Zion National Park in Utah. A must see! 

All in all it was a great trip. Ryan enjoyed it and he saw a whole new world!  Walking through the Casino after the shows was an experience!  When we got back to our R.V. he said, “should I just assume all those people were drunk or just crazy?” I said, “well probably a little of both.”

I am so glad we were able to do this for Ryan.  We saw him willingly step outside of his comfort zone like never before. My favorite part of the whole trip was watching that take place!  I am hoping this experience will help Ryan be more open about getting outside his little world. 

A side note; When the CrissAngel show ended we stayed in the auditorium for a few minutes waiting for the crowds to go through. After it cleared out, a security guard helped us find our way to the elevator that would take us to the lobby. Once we exited the elevator we were meet by a very tiny, little short women. She said her boss, the head security guard, told her we needed an escort to get through the crowded lobby. She proceeded to hold her arms out-stretch , walking in front of us to clear a path for Ryan to get through the crowd.  We all got a kick out of that! She didn’t let anyone get in our way!  

Battle against Isolation

While unloading Ryan from the van at a store, it is not unusual for someone to ask about our accessible van. The questions are always the same. How much did it cost, where did we get it and did insurance pay for it? Next they proceed to tell me about the person in their life who needs one. I don't mind answering the questions about the van and I always try to ask a few questions about the person they care for. After a few minutes, we say our good-byes. As I walk away, I often find myself fighting the tears. These are usually older men who are now finding themselves as care-givers for their wives.

It’s not their story that brings me to tears, it’s what they aren’t saying. I see it on their face and hear it in their voice. I feel the loneliness. I sense their fatigue and often identify with their struggle and how life has changed and will continue to change for them. It is my hope and prayer that in those few minutes of conversation they see that someone else does get it, understands and cares.

I really do understand, because I know that lurking behind all of these feelings is Isolation! Feelings of isolation and are all too familiar. Even with the ability to get out with Ryan it isn’t easy. While I may be a social person by nature, Ryan is not. It is hard for him to want to leave the house. Home for him is his “safe place.” As a result, we spend many long days at home, just the two of us.

I do have a few people in my life that understand. They offer to come over for a cup of coffee or call to chat on the phone. Even so, there are many days when there is too much time to fill. I know it is hard to believe, especially these days when everyone is crazy busy, but there is such a thing as having too much time on your hands.

Days and times such as these can often lead to depression. And, it does take a lot of effort for me not to fall into the pit of depression. I often have this discussion with Ryan. It is not good for either one of us to spend too many days of the week isolating ourselves. I have to be intentional about getting us out of the house. It is so easy to give in, order grocery delivery and binge watch Netflix. But I know, for both of our mental health, we need to get out and be around people even if it’s just going to the grocery store.

This may not be the case for all full-time family care givers. Everyone’s situation and circumstances are different. For me, it has only been in the last few years, since my older children have grown up and left the home that it has hit hard. Do you find you are in a similar situation? Do you struggle feeling isolated? How do you keep from becoming lonely and depressed?

For me, if a few days have gone by that we have not left the house I feel myself slowly feeling isolated and sinking into depression. The longer time goes by, the harder it is to get motivated to even do a load of laundry. I have learned when I get to this point, Ryan and I load up in the van and go. It doesn’t matter where, just getting out helps. Sometimes if nothing else, we just go for a drive.

Do you know someone who is a full time care-giver for a parent, a spouse or a child? Understanding that their opportunities to get out of the house maybe limited, what can you do to show them they aren’t alone?

For me, I appreciate those few people in my life who reach out to me. Whether it be a phone call or offering to come over for a visit. Real human connection is a must; sometimes we must be creative with how that might work depending on the situation.

Mental stop sign

I keep my eyes always on the Lord. With him at my right hand, I will not be shaken. Psalm 16:8 NIV

It was our first time out in our accessible RV. We would be driving 6 days from our home in Washington State to our destination in Texas. We were only a few hours down the road when we pulled over at a rest stop. My husband asked me if I wanted to get behind the wheel. We knew from the posted signs that the next rest stop was only 30 miles away. It seemed like the perfect time for my first time behind the wheel. Knowing I only had to go 30 miles, I hesitantly got behind the wheel. My heart was pounding as I accelerated down the on-ramp and onto the freeway. As the minutes went by I slowly started loosening my death grip on the steering wheel. Before I knew it the 30 miles had flown by. Feeling more confident, I decided to keep going a little farther. I ended up driving 90 miles. If you would have told me I had to drive 90 miles my first trip out, I doubt I would have been brave enough to try. Knowing I only had a short distance to drive gave me the courage I needed to get behind the wheel. I got past my fear by focusing on 1 mile at a time.

This reminded me of another time in my life when I had to work through fear by staying focused on one day at a time. My son was 4 when he was diagnosed with Duchenne Muscular Dystrophy. Along with the diagnosis we were shown a time-line of what his life would be like. He would slowly loss all strength and probably not live past his early 20s. How do you find the courage to carry on after receiving that prognosis? Early on, a therapist encouraged me to focus on 1 day at a time. To visualize a big, red stop sign when my thoughts strayed too far into the future. She also reassured me that God would be with us taking it one day at a time.

My son is now 20. I cannot tell you how many times I have put that mental stop sign up. I can also see with each physical loss my son has experienced God gave me courage and strength to face each day. He promises that he will give us what we need for whatever our todays bring. His promises continue to hold fast as I face each day. Looking back over the past 16 years since my son’s diagnosis I can tell you there are days that I only made it through by focusing on one day, sometimes one moment at a time.

So do not worry about tomorrow; for tomorrow will worry about its self. Each day has enough trouble of its own. Matthew 6:34 AMP

Dear heavenly Father, Thank you for your promise to walk right beside us. I pray that you will give us courage and strength to let go of our fears for tomorrow. Take away our fears and anxieties and help us keep our eyes focused only on you not our circumstances.
In Jesus name I pray, Amen

Originally posted Key Ministry fall  devotional   https://keyministry.us12.list-manage.com/subscribe?u=9c469f85e6968241100f1471e&id=e9da33fdd2

Well-meaning intentions?

It’s that time of year again, Prom. We see the pictures of beautiful girls dressed up, escorted by their handsome dates. No doubt we also see the videos and pictures of beautiful girls asking a boy who has special needs to the prom. Posted on social media. We read the comments under the photos such as “So inspiring”, “In tears.” 

While I appreciate the thought and understand the motivation behind these acts of kindness, my heart is torn. I don’t understand how this is considered inspirational, and I too am brought to tears, but not for the same reason as those who are commenting.    

I see these events from a different perspective. From the eyes of a mom whose son has been brought to tears by these acts of “kindness.” A mom who had to comfort and console her son. A mom who had to wipe her crying son’s eyes because he didn’t have the physical strength to lift his arms to do it himself. A mom whose son was deeply hurt by “friends.” I know they didn’t start off to hurt him. I cannot tell you what their true motivation was. Whether it was compassion, kindness or they felt it was their Christian duty. The motivation does not matter. What does matter is in the end my son ended up feeling like he was nothing more than a project.  

He does not want to be a project, or the recipient of your good deeds. He wants what we all want. True unconditional friendship. Friends who truly care, who are willing to go the distance.

My intent is not to take away from these events. Anytime our kids are included in what you would consider a normal part of life it touches our hearts. There is a time and place and I appreciate those willing to take part in them. I have a teacher friend who worked hard to make this happen for her special needs student. It is a great lesson for our teens to look outside their little world. The problem is these events are just that, a one-time event. 

Just be careful, your well-meaning intentions may not have the results you desire. No matter the ability or disability these are real people with real feelings and emotions. They would love nothing more than a friend who wants to be part of their life, not just for one event but for real and for life.

What would your motivation be in befriending someone with a disability? I encourage you to contemplate your purpose. It needs to be motivated by nothing less than unconditional love.


Originally posted on http://www.keyministry.org/

4,000 miles without incident, I guess we were due.

Over 4,000 miles behind us.  6 weeks away from home without any issues I guess we were due.

Sunday afternoon, we arrived at Long beach Ca, and set the RV up. Jeff was due to fly out the next day so we figured we would have a relaxing evening.

Unfortunately, the RV decided otherwise. We just finished dinner when we heard a clicking noise. Then it stopped, we looked at each other, wondering if we were imagining things, then it did it again. We started following the noise to see where it was coming from.  It was the slide in the back bedroom.  It slides out when we are parked and slides in while we travel. It was clicking like it was trying to close, only we weren’t pushing the button. 

Jeff went into “crew chief “mode and started to problem solve. We spent the next hour checking wires, trying to open and close the slide. It had a mind of its own, it would shut when we hit the open and open when we hit the shut button. At one point it was moving back and forth without us even pushing the button. He disconnected the switch and after trouble shooting some wires decided the switch was bad.

The next morning, Jeff went to the store to get a new switch, certain that would fix the issue. It didn’t!  Of course, it couldn’t be that easy right? About now we are within an hour of needing to leave for the airport, running out of time he disconnected the motor under Ryan's bed. He would have to deal with it in a few weeks when he came back.  Only a few minutes later we heard the clicking noise again. How? The motor is no longer connected.  We once again followed the clicking noise and this time it lead us outside the RV, in the basement area. He opened the bay. The noise was coming from the slide controller. Surrounding  the controller was fresh  mouse droppings, should have been a clue to what was wrong. He disconnected the controller, and when he pulled it out, a liquid poured out… mouse pee! GREAT, the stupid mouse pee was causing it to short out! Crazy! At least we knew what the problem was.  He had no time to fix it now. He would order a new part once he got home and have it shipped here.  

While Jeff was cleaning up the area in the bay, I went outside to see if he was ready to leave for the airport.  I noticed water leaking, more like pouring out under the RV. I asked him what the water was from, he looked under the RV and said “I HAVE NO IDEA! There is no water or plumbing in that area.”  Once again, Jeff went into “crew chief” mode in supersonic speed. There was no way he could leave with water pouring out under the RV. Jeff opened the other bay and frantically searched to see what the was going on. I stood there praying, “God you know what the heck is going on, you know Jeff can’t leave like this, please make it obvious real fast what the problem is so Jeff can fix it”.  A few minutes later Jeff said, “This makes no since at all, the fresh water tank is disconnected and pushed forward”!  He did manage to pull it back into position and get the hoses hooked back up. No more water leak. Crazy huh?

Jeff quickly gathered his stuff, it was past time to leave for the airport.  Thankfully we got there with time to spare. I got out of the van to hug him good-bye. He said, “The airplane better not break”!

Jeff is home safe and so far no more issues with the RV either!

Crazy few hours. I am so thankful all this happened while he was still here. I don’t know what I would have done if he had already gone home.  While the timing of these events wasn’t the greatest I have no doubt, God was watching out for Ryan and I! He allowed these things to surface while Jeff was still here to deal with them.

You can pray that when the motor arrives, I can get it connected and that it works. Also, Jeff set some mouse traps in that area, I have not opened it up yet to check them. I am praying almost as much that there are NO mice in the traps that I will have to dispose of! EEK!

Also we have been hearing about the "Storm of the year" . It is supposed to hit tonight and into tomorrow.  Heavy rain and possible flash flooding . While I am not too worried, our RV is sitting right by a wetland/marsh.  So praying the storm of the year doesn't create some unwanted memories ! 

For those who are visual, like me here are some pictures.

Ryan, Princess and I hanging out. Waiting to ride out the "storm of the year"! This is also the area where the slide is located. 

The slide, with a mind of its own. 

Here is the bay, the basement where the slid switch is AND where the dreaded mouse traps are! 

We leave behind a little piece of our hearts

Hard to believe our time in Texas is coming to an end. Jeff arrived in Austin early Saturday morning so of course for our last Texan meal we had to take him to our new favorite BBQ joint, Rudys BBQ.

Texas has been such a wonderful adventure, we will drive away full of memories and at least 10 lbs heavier!  Enjoyed a lot of good food and so thankful for the time we had with friends and family.  Does our heart and soul so good.

Ryan said,"mom, getting out really does help my mental health!"  You have no idea how many times I have tried to get him to understand that. While in Washington he never wants to leave the house.  I am fighting back tears thinking how much life I have seen in Ryan over the last few weeks! I am not sure what started his desire to come to Texas, but i'm glad for it.  Feeling extremely emotional , I struggle to find the words to express how much this precious time together has meant.  While it was Ryan's desire to see Texas, it has been my desire to pack Ryan up and runaway, to get away from everything and just enjoy life . God has truly given us the desires of our hearts.

I asked Ryan to name a few things he liked about Texas.
1. Getting his tattoo
2. Seeing a movie at the Alamo Cinama
4. Eating at Chuy Mexican restaurant
5. Touring the capitol building

Just a few added observations. Texans like to honk their horns. You can drive 85 on the Toll roads. Handicap parking is free. The road system here in Austin is crazy. H.E.B. the best grocery store with the best homemade tortillas. All the restaurants serve delicious green chili cheese dip.  When they say sweet tea they mean SWEET tea! In Washington there are coffee shops on every corner, here there are taco trucks.

While we are saying good-bye to Texas, at least for this trip, , our adventures are far from over. We are going to spend a few days with Jeff's parents, grandma Kitty and grandpa Wayne at their winter home in Hope Arizona.  Making a little pit stop on the way to check out Carlsbad caverns in New Mexico.  After our time in Arizona we will be heading to Seal Beach, California. Jeff will set us up at a campground on the Naval station, then he will fly back home, dang work!  Ryan and I will stay there for a month.  While we have no plans for what we will do or see in California I am sure we will find lots of adventures to share.

6.State Capitol, and time with friends and family

We've been busy the past few days. Tuesday my friend Elizabeth drove up from Buda to have lunch with us.  Wednesday toured the Capitol Building . Thursday we drove down to San Antonio for my nephews promotion ceremony. Friday, My nephew Nick, his wife Erica, their daughter Natalie, my dad and Coral drove up to Austin to hang with us and have lunch.

On Wednesday we toured the Texas Capitol building.  Although it was in the warm in the 80's it was very cloudy so my pictures don't show the beauty of this building.

We were able to find parking right across  the street. 

The African American memorial . 

The goddess of Liberty. She sits at the very top of the Capitol dome, she has a sword of justice in one hand and a gilded Lone Star in the other.

Our own private accessible entrance in the back. 

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The Rotunda and dome.  On the floor are the six seals of the countries whose flags have flown over Texas. France, Mexico Spain, the Republic of Texas, the United States and the Confederate States of America.

The dome is 218 feet above.

Ryan looks very authoritative behind the desk in the Governors room

There are steps to get inside the Senate chambers and Supreme courtrooms so for accessible entrance you go inside a little room off the side of the hallway. That is where you find these little elevators.  When we opened the door to the room it was dark so I reached inside to turn on the light, only to find this Texas Ranger sitting in the corner. Scared me half to death! He just looked up and said, Howdy, I was just taking a little break in the quiet room. I'm like right, you were taking a nap! Anyway he jumped up and helped us figure out how to use the elevator.  He walked with us through the Senate chamber. Told us the Senate is quieter than the House of Representatives, mostly because they are old and have been there forever . Not everyday you get a personal escort from a Texas Ranger :)

While inside the building we heard chanting outside on the grounds of the Capital. Ryan was curious as to what they were doing .  He kept asking me what they were doing I said go ask them.  He actually did. If you know Ryan this was not easy for him to do. He asked a few questions and we had a nice conversation. While we don't agree with everything she said we were able to listen with an open mind and gain a little different perspective. Honestly, once we stared asking specific question and what she felt would be a good solution she didn't have any good answers either.

Thursday we drove to San Antonio to watch my nephew Nick get promoted to Smsgt.  Very proud of you!  I'm glad the timing was right that we were here for this. Also was good to see my dad and meet Coral. They flew to Texas from Florida to be part of this event as well.

5. Ryans the first of the Mckenzie boys to do this.

I promise I won't post updates everyday but this is worth posting.

This has been on Ryan's must do list for the past 2 years. For some reason he wanted to wait until we got to Austin to get it done.

A TATTOO!!

He woke up this morning and said lets go today!   I suggested we go in to talk with them and then decide.  He asked a few questions and then said, lets go for it! He was pretty determined it was going to get done today and well, it did!

His tattoo means "STRONG" He wanted it on his hand so he could see it.

I am actually surprised he went through with it. He didn't even flinch.  The guy was very nice and patient and talked Ryan through it. When he got done he said to Ryan, "Thank you for coming in today, you made my day ".

4. We are in Austin!

WE ARE IN AUSTIN!  

We so much enjoyed our few days in Abilene with our friends Mark and Karla, their youngest daughter Lacey and her husband Aaron. 

Mark, Karla and their 3 newest babies 

Some friends you can go years without seeing, yet when you see them again its like it was yesterday. That’s Mark and Karla. We were stationed with them in Missouri and I spent many summers babysitting their 3 girls.  I should say hanging with the girls. Jake and Ryan were babies and the girls pretty much entertained them for me 😊 I loved that I got to see their youngest Lacey and her 2 little ones. So strange to see those you babysat now grown and having kids of their own. Time goes by way to fast.

We left Abilene with our hearts full and yet a little sad. Not knowing when we will see our friends again. They tried hard to convince us to move to Texas! I think they have Ryan agreeing to it, they went above and beyond to make him feel comfortable. I don’t think it would take much to talk Jeff into either. He was like a little kid sitting at their kitchen table watching the deer roaming their backyard. 

Jeff is flying home tomorrow, so he can go back to work, someone needs to support our adventures. Ryan and I will be hanging out in Austin for 2 weeks.  We’ll see what we can find to do. Any suggestions?

A little story that touched this moms heart.   Lacey’s little boy, Evan is 3 years old. He was fascinated by Ryan’s chair, the different buttons and how Ryan could make it go up and down. When Ryan drove his wheelchair up the ramp into the back of the van he thought that was the greatest thing! Later that night when Lacey was putting him to bed, he said “Mom, I think Ryan is a Super Hero and he has the coolest chair!”  LOVE the childlike innocence. Most children are curious about Ryan’s chair. I wonder what happens to adults that cause them to go from the childlike curiosity to being afraid of ,or turning away from someone in a wheelchair.

Childlike curiosity, what a beautiful thing. He didn’t see the wheelchair as being a disability but a means of Super Hero ABILITY!