Author: Jenny

In March 2004, I suffered a severe brainstem stroke, & was "locked in" for several months". I have been married to a wonderful man, Mark ever since Dec. 1994, & we have 3 kids: Zach (1997),, Jessica (2000), & Sophie (2002). I have been blessed in so many ways by God, so I wanted to keep a blog to share my recovery, life, & answer questions.

“What are your thoughts about traveling?  We have heard horror stories about broken wheelchairs, etc. I wanted to ask you because you guys travel.”

“Traveling is my way of not letting a disability control our lives. Overcoming obstacles feels like an improvement in health- even if nothing actually changes with physical health. It is a mental win.” 

–Mark

Traveling is mentally, physically, & emotionally draining, yet it can also feel like a huge win because YOU “won,” not the disability!

My #1 advice: DO NOT take the heavy wheelchair u use at home.  Get a lightweight, collapsible one that has a removable lithium battery. Don’t underestimate how important your travel chair is: it has the power to increase/decrease anxiety & change your perspective on your trip!

I know this from experience.  I dreaded my old travel wheelchair, & traveling has been tough for me. In the past, travel has meant a severe downgrade in my lifestyle.  Not only did I lose much of the independence I had worked so hard for, but I also had to find ways to still do a little bit of therapy & my chair (which is a part of me now) wasn’t very comfortable, it didn’t have many of the features I enjoy, was wobbly, & harder to drive. 

At first, I was in a manual wheelchair – that was a nightmare since I only have 1 working arm, so I could only move in circles!  I upgraded to these collapsible chairs that can be either power or manual.  It is frustrating to be left in manual mode somewhere (since these chairs have little wheels), but I was so happy that I could move that I tolerated that how wobbly it was, how difficult it was to drive, how it had manual recline, etc. 

But I just got a new travel wheelchair: Majestic IQ-9000 from Comfy-Go Mobility.  I can’t tell u yet how future trips will go, but I can tell u that for the first time, I’m excited to use my chair, & I felt my anxiety decrease when my new travel w/c arrived: It isn’t wobbly, drives smoother than any other chair I have used (it starts/stops smoothly – if Mark is driving me with power on & suddenly stops, I don’t get knocked around), & it has a remote (which may not be a big deal, & may mean something else to Mark, but to me, the remote means that after 20 years, Mark & I can finally hold hands as we “walk”!)  I cried (with happiness) when I realized this!    My chair also has a lock feature that every wheelchair needs (so kids can turn it on & off, & play with the joystick, but can’t move the chair). This wheelchair has power recline, a “real” horn, & it makes a beeping noise as I back up. (Kinda a cool safety feature cuz people are warned, but we figured out how to turn it off – thank u, YouTube – so I could use it in a quiet place, like a church!) 

I have a bag I like my chair to be put into (then they put it below with strollers & luggage), though there is a closet by the airplane door, & they are required by law to put a wheelchair in the closet, if a wheelchair is not there already.

At our destination:

– I’m fortunate because my husband can lift me, so we don’t need a w/c van or lift, but those can be rented. 

-We always ask for an accessible room with a roll-in shower, though it’s never guaranteed (even when u book one).  They usually have shower chairs or something u can sit on.

-The big thing is to be creative in finding solutions for whatever doesn’t work out – another way I’m fortunate is because my husband has had creative solutions, like a black sock stretched over a ripping armrest, & a wood ball from a craft store in place of a missing joystick!  As Mark puts it, “There are always possible problems. We have had repairable damage to chairs, but most has been fixed after a quick trip to a hardware store or by using tools or emergency parts kits that I have started bringing after a few minor incidents (the kit has things like an Alan Wrench, industrial strength Velcro).”

“The unknown is scary, but it becomes comfortable with practice.“ (Mark)  For more support, u can join something like “Accessible Travel Club” on Facebook.

From the perspective of a caregiver (with an additional focus on international travel):

There are more options than most people realize. There is an entire travel industry around disability travel. There are people in other countries who do all the planning and work if you need it. Cruises are excellent because it feels like staying in a U.S. hotel with daily visits in foreign countries where you do not need to worry about what accessibility is available.  (While) you can never be guaranteed accessible rooms at hotels, you are guaranteed a specific accessible stateroom on a cruise ship where you can plan on things such as left or right-hand handrails near the toilet or in the shower. You just need to book early for cruises to ensure that a limited quantity of staterooms and excursions are available. 

In many ways, many countries outside of the U.S. are more accommodating than our own country. Foreign countries often fast-track wheelchairs through airports and customs. Some countries often do not charge the caregiver at some venues. There is a guilty pleasure when a foreign guide or venue employee goes crazy on someone who should not be using accessible facilities. It typically requires a bit of planning and a few calls or emails to figure things out. We use Sage Travel in Europe since they have trusted guides who understand accessibility. They also act as resources for finding accessibility supplies if needed. They often arrange accessible cruises and trips where applicable excursions and hotels are arranged. I am jealous of some foreign disability toilets where they can have adult changing tables and lifts installed. 

We do not bring the heavy chair with all the bells and whistles. We have a smaller and collapsible travel chair. It is not as comfortable, but it allows for more travel options. Tropical locations (most islands) are difficult to visit. Even if there are cuts in curbs in the towns, most buildings near a beach are on stilts due to hurricane season precautions. 

It helps that I am strong and pretty handy with fixing things. On a few occasions, I have had to carry my spouse over small steps or on full flights of stairs. I know how to fix things and can solve problems really well. AirBnB’s are notorious for over promising. Be prepared to find a shower stool or some adaption that you need for specific needs. If you can find a good business class flight you can get fully reclining seats on long haul flights. Just because it is a first or business-class flight, it does not mean every leg will have all the perks. You can ensure what you need if you carefully vet an itinerary. Business class flights also give access to lounges, which make distance travel much easier. Of course, not everyone can fly business class every time. If when we have flown business class, airplane bathrooms are tiny. We have made it work but I have friends who use a blanket and cath at their seat. A good support team of family or friends is super handy and required in some situations. 

Overall, international travel can be better than domestic travel. London is a great place to experiment with. We are lucky to have a direct flight from Austin. Prior to the pandemic, it was pretty cheap to fly to London on a direct 9 hour flight. You can take a train to Paris from London in a little over 2 hours. A 3 hour flight from London will put you on most cruises in Europe. 

It’s been 20 years!

U know it’s been too long when the website doesn’t recognize u when u log on…

Actually, I keep attempting to log on,  & when I have trouble, I think, “I’ll deal with it later.”  I’ve finally found later! (of course it was today!)

I tried to log in December to talk about how awesome it was to have all of my kids here for Christmas & New Years.  Many times I recalled how difficult it was (at times) to have our kids so close together, but now I was delighted to see how well they interacted!  & New Years gave me a glimpse into heaven, as we spent the night also with Maddie & Davis’ Families.

I tried to log on again after taking a Disney Cruise in January, & after attending the rodeo about a week ago…but I was determined to post on my website by my 20th stroke-a-versary!  So here I am

As I contemplated how to “commemorate” such a special day, some memories came to mind.  These memories prompted what I chose to do.  I just wanted to attend the temple, & spend time with my grandson!  In my eyes, the temple is where everything “started” (A few days before, it was in the temple where I received the impression that something big was coming).  The temple has also been a source of strength (from my first blinked words, “go to the temple” & continues to be now), & is a symbol of my belief that “families are forever.”

I don’t know if Mark recalls this conversation, but many times that first year, I told him that I wished I was dead.  One time, he asked something like, “But aren’t u glad u are with me here?” & I said no, I’d rather wait for him “up there.” & he retorted with something about if I’m here, I can see my kids get married & see my grandkids.  I didn’t care.  Living like this to be a grandma?  That sounded like torture!

I  know God heard me, because I haven’t spent those 20 years without growth – spiritual, emotional, AND physical growth! And, unlike before, I am glad to be a forever family with Mark, my kids, my kids spouses, & to be a grandma (mamaw)!

Sorry it’s been so long!

Oh my gosh!  It has been way too long since I posted, so I need to pause, take a deep breath, & write. Here is a sample of my life in the last few months: I went to Utah for my father-in-law’s funeral, took a 2-week vacation/cruise with my family to the UK – England, Ireland, Scotland, & we boarded in Amsterdam, burned my throat from swallowing a pill wrong, I had COVID (it was pretty bad), I started horse therapy weekly again for the fall/winter (which helps physically & emotionally, too), had a hospital visit with recovery from Pleural Effusion (where I had “minor procedure” – I forget that “minor” for “normal” people is not so minor for me: fluid was drained from my lungs, & it took me like 4 times as long to somewhat recover…& I’m still recovering!), I took a meditation/mental health class, went to an awesome Halloween party (where, if you’ve seen the show “Stranger Things,” I dressed as Eleven’s mom, mama, & Mark was papa), & I’ve been preparing for the primary program for church, which occurs November 12.

In this post, I will include an invitation for our primary program, & some links to videos my daughter-in-law made.  One video is of our cruise.  The other is a short film idea that came about as we waited…& waited…& waited!  The cruise we went on had a LOT of old people who didn’t use the stairs…It was infuriating because when they got tired of waiting for the elevator, they decided to walk 1 or 2 flights of stairs!  Or, even more upsetting was when the elevator opened & was full of younger people who could walk well – but despite seeing several wheelchairs waiting to use the elevator, no one got off for those who HAD to use the stairs!  (Personal plea: PLEASE do NOT be one of those people who takes the elevator up or down one or two flights of stairs, & if u see a wheelchair waiting for an elevator, GET OFF the elevator & use those working legs!  Show some gratitude for having legs that work!)

& while I’m on my soapbox: PLEASE do NOT use family restrooms for pooping! Show some courtesy to people like me (who can only use that toilet).  Please do not make us wait forever to use a toilet in a bathroom that smells like your poop!

British Isles cruise video:

Short film:

Halloween costume – I had planned to turn my chair into a rocking chair, but Mark had been so busy, & I realized that if mama went anywhere, she’d need a wheelchair!  Ha!:

Primary Program Invitation:

Happy Mother’s Day! 

Happy Mother’s Day!  I am so grateful for my kids & my grandson, James!  I was really worried about how I’d do as a grandma, so when he’s being held by someone else & he reaches out for me, it makes my day!

I also wanted to give a shout to Red Arena, who is having its biggest fundraiser, Round-Up, this weekend (follow that link at redarena.orgfor a  daily schedule, or for info on how to bid on their online silent auction).  You may recall how I brought it up a few years ago because I REALLY wanted to help them afford a covered arena, so I could ride rain or shine!  & I think I posted a picture of that beautiful new barn with a covered arena.

Well, I think going rain or shine has paid off: I recently took a flight to Utah.  On occasion, I can stay sitting up tall as we decline, but it is REALLY hard when I do.  However, this time -both flights – it was “easy”!  I did not fall forward or need Mark to block me!  & while I had to work, it wasn’t nearly as difficult! 

On the home page of www.redarena.org is a video “Why We Do It.”  When I started, I couldn’t speak & I was like a floppy rag doll.  The first year, I was so exhausted after each lesson that I couldn’t do anything – seriously…even lifting my iPad to listen to an audiobook was hard!  But I knew it was working, so I kept going!  I have since started “talking,” become more independent, & it has helped me in so many ways – even emotionally!  I am so grateful for the day I was led there!  It has helped me be a better mom & grandma, & has become a highlight of my week! (Seeing James & attending church rate up there too!  Haha) I look forward to the occasional horse rides I will have this summer!

(picture is from the Primary Easter Egg hunt!)

The Lord is with me

March 16 (Thursday this week) is what I affectionately call my “stroke-a-versary.” 19 years ago, on March 16, my family was told that I had 24 hours to live, & that if I survived, I’d only be able to blink.  Not only have I exceeded the doctor’s expectations, but I have slowly had things like my right arm, speech, & more return…things that assist me in serving the Lord.  At the time of my stroke, I was the primary chorister (teaching music to the kids at church who were 18 months old to 12 years old), so naturally, I sang the songs in my head, while I lay in my hospital bed recovering from my stroke. It was there that I learned the power of the primary music I had been teaching, as I (through song) received assurance that the Lord WAS there…& He continues to stay by my side!

I have begun conducting in the primary. That means I welcome the kids & help direct the flow of the meeting.  It was through inspiration that I learned how it was possible, & for two years I’ve been trying to figure out the kinks & get brave enough to do it.  Ha!  At first, I was scared to death (so I believe the Lord helped me that first day), but as with any anxiety, the more I have done it, the easier it has become.  & as an added bonus, by doing it, more people (teachers, other leaders, & even some children) are learning how to understand me, so I’m less afraid to speak up when I visit classes or see them in the hall!

Lately, the primary lessons have had a lot to do with people being healed by Christ, & on how Christ can heal us.  Since I wouldn’t be surprised if there’s a questioning child somewhere who wonders about me & how it affects their faith in the Lord healing them, I shared this with my primary teachers:

“The primary manual says to, “Explain that sometimes a miraculous healing is not the Lord’s will, but we can still be blessed by His love and comfort.”  I know that is the case for me, &  that I will eventually be healed in His own time.  In the meantime, I have been healed in other ways, & strengthened to endure the ways I have not been healed.“  Often I am unaware of how I’m being strengthened until later.  Here’s one:

I now like to start my day with activities that point me in the right direction, so I like to do morning prayer, meditate, & do my personal scripture study.  I haven’t always done this.  The routine evolved over the last 19 years.  On a particularly difficult morning, I decided to listen to the podcast, “Don’t Miss This” for my personal scripture study.  I turned it on because it was my routine to hear God’s word then, & I was so tired, I just wanted to listen to it, but they always make me laugh!  Between being uplifted by God’s word & the clean humor, it’s like my slate was wiped clean & it changed my entire day!  I am so glad I have implemented healthy routines in my life that can aid me in the struggles I face!