Easter day was good and bad. The kids came to the hospital dressed in Easter dress which Jenny picked out, in part, after her stroke. Jenny appeared to be feeling better. Jenny’s brother (Steve) hooked up the hospital tv so it can play video recorded on the camcorder. In using this same concept, it displays what is being taped if the camcorder is hooked up while taping. Since Jenny lacks the ability to move her head or horizontal eyes gaze, the camcorder moved around for her as the kids excitedly opened easter baskets. Jenny could see all the action by just watching the TV screen. The kids were less anxious around her and even Jessie crawled in bed next to her until we left. Jenny was able to laugh, which the kids and my mom saw this for the first time.
As for the bad (which better put would be “difficult”), it was related to the emotional roller coaster of seeing friends at church for the first time since the stroke. I was touched by the concern and support. We are fortunate to have a rehab doc and neurosurgeon in our congregation who were asked to explain Jenny’s situation during the last part of our meetings. It was nice to not have to personally answer these questions many different times, but I am glad people have a greater understanding of what happened. My desire is that people relaize she is still the woman she was a month ago, just unable to move her body. Jenny was released from her primary music calling, which was expected, but hard. Jenny was relieved by knowing that the new chorister is talented and will do an excellent job. Knowing this helped her accept it much better. She still appears to be in constant discomfort, which affects me most of all. I hate seeing her hurt and not knowing exactly what to do to make it better. I am getting more efficient at guessing. In just 5-6 questions I found out that her ear was folded over and that was causing pain as she lay on it. Give me a couple months and I will rock at “20 questions”.
Hi, Mark and Jenny and Kids – –
It was so great to see Mark and the kids at church today. I was with my Primary Class and didn’t get to attend the meeting with Mark Duerden and Jody Smith but Brooke (my daughter) was there and brought me up to date. We are so fortunate to have them with us, I sure agree.
You probably have many links and references about LIS – but here is one that I like – http://www.marykoch.com/locked-in_symdrome.htm There are several good links on this site – especially the Brain Briefings link – this talks about some technological advances and experiments that have helped by by-passing muscles. There is also an LIS Association link here – the association is based in France.
I also liked this site because there is a picture there of a gentleman who has LIS and has made progress over the years.
Thank you for reminding us in this update that Jenny is very much Jenny. Jenny has favorite perfume fragrances, colors, songs, make-up and likes to feel pretty. This is nice to think about.
Take care
Sorry — I misspelled a word in the link address – it is syndrome.htm
Jenny’s last Sunday as Primary chorister was March 14, 2004. It was a special day, and I know that most, if not all, Primary leaders and teachers who were there would agree. The spirit was very strong, and I believe it mostly could be attributed to Jenny. I remember thinking that Jenny looked especially beautiful. She wore a simple black skirt and a white blouse. Her beautiful hair was pulled back from her face. She was radiant. In Junior Primary, she brought her hand puppet Elder Harmony and reviewed the song “He Sent His Son.” Even the youngest children were enthralled with her and totally engaged in singing time. In Senior Primary, she did not use the hand puppet but did work on “He Sent His Son.” She focused on musical dynamics, encouraging the children to feel the spirit and message of the song and to project those feelings in their singing. She was masterful that day. When she sang the phrase “He sent His Son to die for us and rise with living breath,” she used her whole body to convey her testimony and emotion at the climax of the song.
The children were reverent. There were no behavior problems. Our Presidency commented several times at how smoothly everything was going. We were able to sit through the entire singing time and bask in the spirit that Jenny brought with her. Primary is a busy place on Sunday, and this is one of the few times that we have been able to do that. Looking back, I am grateful that we were given that day in Primary. The following Sunday we crashed on a discordant note, and we are still struggling to recover. Primary is the Lord’s program, so we will go on. But Jenny will always be there with us.
Geneil Breeze
Here’s another link by one who has LIS – I really like this one because it speaks to what you wanted to convey to us about Jenny – that she has not changed her personality, how she may feel, think, what she senses, sees etc.
http://www.locked-in-syndrome.com
Dearest Jenny & Mark & Children~You ALL have been in my thoughts and prayers constantly since first hearing the news of the stroke. Since I am at work so many hours a week, then in Primary on Sundays, I felt like I was somewhat left out of the loop about your situation and progress. How awesome and wonderful to have this website now!! I just found out about it after meetings at Church, so I am so happy to get caught up on all your doings! I love you all so much, and have missed you at Primary; my very first reaction when I heard about the stroke was, “This should happen to some fat old lady like me, NOT happy, healthy, young Jenny!” But I know we cannot question the Lord, and why this did happen to Jenny, and that much good will come of it. It is just so hard for us to understand now. Thank you so much Mark, for keeping us so well informed through this website, and for sharing your feelings and love. You are TRULY blessed to still have your beautiful wife, and your precious children to love and cherish always. I wish I could have heard the medical news from the experts at church today, but am getting filled in from those who were there, and will certainly be checking into the websites about LIS. PLEASE, PLEASE call on me for anything at all I might be able to do–I am free on most Thursday evenings, and can always arrange for other times, as long as I have notice ahead of time. I love Zach and Jessie and Sophie and love being “GramiTami” at all times!! I pray for your continued progress and blessings…LOVE ALWAYS, TAMI 🙂
Hi Jenny,
This was my first Sunday back since your stroke, and I was a little apprehensive, but Jessie made it so easy. She needed Aunt Misty to be there for opening exercies and singing time, but was ready to part when we went to class which surprised me. Sis. Periera was so funny as she led the music. She had Jessie come and help her on one of the songs. On the song, “I Am a Child of God”, Jessie picked out the easter egg for the song and the way it was sung, which was loud and soft. This is where Traci would crouch down to make the song soft and then stand up tall with arms reaching high when she wanted the children to sing it loud. I found her gestures so amusing. The children followed her really well and there were smiles on their faces so I know they were enjoying Traci’s movements too.
I looked for Zach’s behavior during this time and he was always smiling and enjoying his time there. With Misty there, Jessica was happy and content too.
Class time went really well for all of us. We have a new sunbeam, Alexa’s daughter Chrissa’s son, named Pomei (I’m spelling it the way it sounds). All the children were so reverent (as reverent as Sunbeams can be), but were really reverent as we talked about our Savior’s crucifixion. I’m always surprised (which I really shouldn’t be), how the spirit teaches them spiritual matters. I always worry that when the lesson teaches spiritual matters that I’m going to lose their interest, but the spirit never fails to take over and capture them. None of the children even mentioned easter eggs, or easter baskets during the lesson.
Sis. Roberta Kearney, Becky’s mom-in-law, is in the rehab center in Castleton. She had major surgery, but is progressing very nicely. She asks about you every time I visit. This Sunday she mentioned that she didn’t really know you, but knew who you were and how she was always struck with how radiant & beautiful you are.
We all miss your presence on Sunday. I know that we’re all looking forward to the day when you re-join us.
LOL, Grace
Jenny, I get so excited everyday when I read about the progress have made since Cleveland. I am very hopeful about your recovery. I know it is going slow, and that there will be many more ups and downs, but stay strong. Know how much you are loved and cared for, and how much your friendship means to me.
Mark, I can only imagine how busy you must be, and truly appreciate the time you take to update this website every night to let us know how Jenny is doing.
You are both (and the kids!) in my thoughts and prayers.
Love, Lisa
Hi Mark and Family,
We just wanted to let you know that we’ve been keeping track and also wanted to apologize for not sending messages sooner. We want you to know that you’re all in our thoughts and prayers daily. If there’s ANYTHING we can do just tell us we’ll do it. The messages that we get from you help us keep the bond that you have always allowed us to have with you and your family through your stories. We’ll do a better job of keeping in touch on this message board. Just know, that you have people who care about your family . Love Nan & Steph
Hey Jenny and Mark,
I have been reading through the last several entries trying to catch up on things. This is such a great website! I am glad that we have an opportunity to send messages through this as well. Yesterday’s combined meeting was very helpful. The question and answer session was informative and Mark, I really appreciate you taking time to share so much information. I am sure it is not easy to share so many details that are personal, but those details help us to feel we are still connected to Jenny even though we can’t converse with her right now.
Mark, I don’t know if you have told Jenny that we are moving. We will be leaving in the middle of June to Springfield, Virginia, about 30 minutes south of D.C. We sold our house the week before spring break, and bought a house in Springfield 3 days after arriving in Virginia for spring break. Heavenly Father truly watches out for us. I never thought we would leave Indy. We will miss you guys terribly :(! I am going to have to break in a whole new primary with my kids!! Does the Springfield ward know what they are in for???
We want to let you know that we pray for you everyday. My mom in Denver and my next door neighbor Jennifer are also keeping posted through this website. Jenny, you are very lucky to know how many lives you have touched. Many of us will never know how we affected people. You have been a great example in your 29 years, and you will continue to be a great example for the next 100!! You are greatly loved and we miss having you with us. I hope to be able to see you before we leave. Mark, keep us posted on when she will be able to have visitors. I want to make sure to get on the schedule!
Love,
Shannon
My dear Jenny,
I am so happy to hear that you were able to laugh. Every little movement and each breath you take on your own, helps to get your stronger, I know. I was delighted that yur little one crawled up on the bed with you.
We were honored to be able to pick up your dad and brother at the airport when they returned from being with you. They gave us first hand information about what was going on and I assured your dad that I knewthat if anyone could get through this, it would be you!. Remember when you came to get some coaching with your singing? We had a good time laughing about thinking about all the people sitting in the audience .That brought a laugh to you then and hopefully you will think of it again and laugh.
I am so proud of you doing such wonderful things with your music. I knew from much experience that you would be a winner, and you are!.
I don’t know Mark, I only met him once, I think, and I remember I liked him. I am so happy he has been able to do this special web page so those who love you can check on you. It is such a blessing to be able to go on site and check on your daily progree. I know it won’t be easy, Jenny, but you are a fighter. Hang in athere for all those who love you.
With our love,
Ruth and Clay Waite, Arlington Heights Ward
Dear Jenny,
This is Lisa’s Mom. Ever since you came into Lisa’s life – way back in 6th grade – we have felt your presence in our life, too. Many times it was like we had a second daughter! When I tell people about how your friendship started and continued all these years – even though the majority of it was long distance – they are amazed, and we are thankful. I don’t think Lisa could have had a truer and more faithful friend than you have been.
When Lisa called to tell us what happened, I was almost speechless (which is rare for me!), but we just stayed on the phone, talked and cried, and managed to get through the call. What I remember most is Lisa saying that “Jenny has always been there and I still need her to be here.” That sort of says it all. Mark, your kids, your family, and all of us who love you and know you in many different ways need you to be here. So I want you to know that you are constantly in our thoughts and prayers. We are pulling for your recovery and will do anything we can to help.
After Lisa’s visit with you in Cleveland, she called to tell me about it. When I answered the phone, her first words were “she’s still my Jenny”.
Mark, thank you for sharing your time with Lisa so they could visit. I know it helped Lisa a lot, and I hope it helped Jenny, too. Thank you, too, for having this site and keeping us up to date on Jenny’s progress. It makes us feel a lot more in touch from so far away.
We wish only the best for all of you and we’ll continue to keep you in our prayers.
Love, Carolyn & Gary
Our thoughts and prayers are with you at this time. We often remember our visit with you at
Nauvoo.
It is encouraging to hear of your progress. Your family is the greatest. Hi Connie, we miss
you. We just talked to Wally, he seems to be doing okey. We love you. We will continue to watch this web site, it helps a lot. Love ya, Jack and Verla and family.
I think it’s great that Sister Lynn can laugh. It’s one of the most important things in life. We can now feel what she’s feeling better. I am grateful for all the progress that Syster Lynn has made, and I know she can make more