Monday, December 21, 2009

December 21


John and his niece Sydney

Sydney, John, Holly and Rayray

Paulette and John

Hudd and John

Sydney is raising a goat as a FFA project. His name is Johnjohn and here is a photo of his namesake!

So, only 4 more shopping days until Christmas! I hope that everyone is avoiding the last minute hustle and bustle or if you enjoy that sort of thing, I hope you are getting into the spirit!

I thought maybe I should share a little about nuts and bolts of how John is doing. Sometimes I realize that I talk about the more esoteric aspects of what is happening with him and there are times when I get asked..."But Melanie, How is John REALLY doing?" The simple truth is that it changes from day to day and sometimes even in increments of minutes. There are times when John is extremely clear in what he says and he conveys deep gratitude to us and those around him. During these times, his awareness of his condition is staggering and at times it brings him to tears. It's as if he knows how he used to be and he is able to deliniate where he is now and he is fearful that he won't get back to the "old John". It is during these times when we try really hard to let him know that we are here for him and we are patient and we know he will be okay. The best way to describe these moments is that a window opens and a breeze of insight blows between John and those around him and then as suddenly as it opened, it shuts again. We don't know the key to keeping that window open but it is the thing that gives us constant reassurance that every possible avenue in John's journey is being explored and he is being given every opportunity to thrive.

His body movement is at times fluid and at other times, very rigid. After receiving the Botox treatment some weeks back it seemed to help with the rigidity but John requires help with walking and all other activities of daily life such as eating, bathing, etc. He is able to feed himself and has been for some time however it is a lengthy and tedious process. His caregivers are exceptionally patient as you might imagine and I can only say that folks who perform jobs in rehabilitation and nursing settings are true angels. They are underpaid and overworked and yet somehow manage to remain joyful and positive about the work they do. If you have ever cared for an ailing loved one you know how difficult it can be and for them to be able to work with strangers in this capacity leaves me awestruck.

John makes progress daily. Although it isn't the same type of progress as going from coma to awake or nonverbal to speaking full sentences, it is just as miraculous. There are subtle changes and each day raises that healing bar up another notch and our level of hope continues to soar.

Tuesday, December 15, 2009

December 14


Elvis came to Mentis and put on quite a show!


The above picture is of John and his niece Sydney napping together while John was home for the day over the weekend. At almost all family events, the eventual result would be John napping...usually with all the dogs so I found it a fitting addition here!

Every family has traditions for the holiday season and certain things they look forward to. Sometimes it's a particular food item or maybe a favorite Christmas ornament that gets brought out once a year and takes us back to childhood memories every time we see it. For me, this year marks a new thing to look forward to and that is John's continued progress. I'm quite sure that as the years pass by in the future, the thing I will remember most about this holiday season is that we have been given the perfect gift and that is John's continued progress and good health. I can't imagine asking for a better gift and although this one isn't wrapped and under the tree, it is deep and meaningful and so special that John will continue to be a beacon to those around him and a constant example of how faith and perseverance can guide us through even the hardest times.

For us, this year is a time of change. While unexpected, we are in a dynamic place as we continue along John's journey and wait for which turn might be next. Instead of pulling out the big tree and decorating the house, Holly decorated John's room at Mentis. There is a smaller, yet festive, tree with lights on the table near his bed and Christmas cards and candy which keeps the staff happy and full of sugar! Instead of making a huge Thanksgiving feast, we spent the day with family and friends (thanks to Tom and Michelle for a great meal!). And instead of doing the usual pre-Christmas fish fry (my favorite thing John cooks!) we are going to spend the day relaxing and enjoying each other. Holly and I will also be meeting up with my parents and Honeygal so John will get to spend some time with his beloved Boston Terriers, Harley, Hayley and Gracie. Sometimes the greatest gifts come in four-legged form and being around those crazy puppies can't help but make you smile! I should mention that the pups remain in Boerne with my folks and are thriving and receiving constant care and tons of attention.

This season has given me pause on all levels. It has made me reevaluate all things which are important and I am so grateful for my friends, and my family without whom, this past 6 months or so would have been unbearable. We sometimes take for granted those close to us and when the chips are down we find out quickly those who are our true angels. Our lives are changed inexorably since John had his heart attack and while we know that the next few months and even years will be a challenge, we also know that we have tremendous support from those who love him and us and we are thankful beyond words.

Tuesday, December 8, 2009

December 8

At times throughout John's journey we have been touched by the kindness of others. We find strength in the small things and of course in the progress that John has made over the past 6 months. Every time we start to falter in our faith we are reminded that we are blessed to know John and we can look in various directions and know that we are lucky in so many ways. At Mentis, John is surrounded by folks in similar or even worse situations. We constantly try to acknowledge the good that is happening but at times we get caught up in the, "What if's?" and the idea of how things used to be. We know that this is John's path and we have come to the realization that it is also our path. We also realize that John has made us realize that it is the subtle nuances in life which make it worth living.

I was recently with John for dinner and it was dark outside. As I told him I was leaving he unlatched his seat belt and stood and told me that he would walk me out to my car because it was dark outside and he wanted to make sure I was okay. This brought a flood of emotions into my heart and made me see that while things are different today than they were last December, John still wants to make sure those around him are safe and happy and he is such a giving soul. It was also the first time that I have been with John since June that he stood on his own without chiding from me or his therapist and there was such reciprocity in our friendship and our commitment to family. John frequently tells me that he loves me and that he hopes he will be okay and sometimes he asks me if I feel the same way. I usually respond with a gentle, yet resounding...Hell yes you will be okay!...in fact, you will be better than ever! On this particular night, I simply looked him in the eyes and put my hands on his strong shoulders and told him of all the people who have faith in him and reminded him that there are so many who are deeply invested in his well-being. I tell him of the emails I receive on a daily basis and try to reassure him that not only do most of the people who read this blog believe that he will conquer this...all that have been a part of his life feel the same way as well.

Sometimes it is hard to see John because he is in a place he hasn't been seen before. He requires help with a lot of normal activities of daily living and in the past he has been the rock for so many of us...myself included. He tells me of his gratitude but I also tell him of mine. I believe deeply that if roles were reversed it would be him writing this blog on my behalf and I don't hesitate to remind him when he thanks me for something that he would do the same for me. I'm quite sure that he would have many eccentric stories to tell about me and I have tried to share as much as possible about him as well. The truth is that I never expected to be in a situation with the healthiest, fittest man I know, that we are currently faced with, but I also know that there would be no better candidate to show us just what is possible when it seems that things are impossible. There is little doubt in my mind that John will continue to astound us and all medical professionals who come into contact with him. It's his heart which caused this journey initially but it is also his heart which will help him thrive and amaze us throughout his journey.

Over the weekend, John and Holly were able to attend their church for the first time since John had his heart attack. It was emotional but John seemed to enjoy the service and seeing some familiar faces. Our goal is to continue to slowly introduce him to some of the things he used to be deeply involved with. It is a tightrope walking affair because we have to be cognizant of the fact that he might be overwhelmed or that the stimulation is simply too much. One thing that John has always felt deeply about is his Christianity. Even when John was first at TIRR and we took him downstairs for a prayer service or when his first roomate there, (A pastor) would pray with his family, John was interested and wanted to be involved. Tonight, there was a prayer service at Mentis provided by: In God's hands Ministries, and there were 8 preachers all of whom had a different message. Holly asked him several times if he needed to leave but John wanted to stay. They both received enormous support and love and Holly said she felt so grateful and so blessed that these folks took time out of their schedules to preach at Mentis. Sometimes you can go to church and receive messages but they received messages from those who saw first-hand the love that John and Holly share in a place that most people don't even know about.

Although church is an important aspect in John's life, he also lived his life in a spiritual way. Holly and John have not bought gifts for each other for Christmas for many years instead choosing to sponsor a needy family. Holly's employer, Upchurch Kimbrough, has decided to continue this tradition sponsoring three needy families from John's school. This is an absolute honor and one John would be thrilled with because his school happens to be in an economically challenged area. Holly's co-workers have been supportive since the first morning that this happened. They were in the waiting room with us along with John's co-workers to hear about John for those first few days. They provided constant presence in the waiting room, and since then, they have given Holly the latitude to do her job while providing constant care for John at the same time.

This is a busy time of year for Holly in terms of work so there are many people who have stepped in to buy the gifts for these families and wrap and deliver them and it is an amazing thing to see a great company doing great things for their community. Upchurch Kimbrough is located less than 3 miles from Spring Branch Elementary where these needy families reside and where John works. Although the families were asked for a "Wish list", most of them put that blankets, pots and pans and food were their wishes. They will receive much more than that, and Upchurch Kimbrough and it's employees are to thank for that.