Hanging in there… the long haul.

In your life, has anyone you loved very, very much, ever died and left you grieving?

Imagine, if you will, experiencing that feeling every single day of your life.

Now you know what we have felt. I am not telling you this, so you will feel sorry for us, nor am I trying to be overly dramatic. I am just trying to find the words and the illustrations to communicate what it feels like, because in many ways… it is unspeakable. Even now after many years it is painful to relive the memories and the heartbreak through which we have traveled. It was a sometimes barren and forbidding landscape. The daily heartbreak alone, as it accumulates, is enough to destroy you. I have shared the unvarnished truth of our experience.

Why We are Sharing Our Story.

Of course, I don’t know why you are reading this book. Maybe you are just curious. Maybe you have had a similar journey in life. Maybe you are now facing a journey down a sudden road that you never planned to travel. Maybe it is you or your child, or a dear relative, or someone you love, that has entered into this new and perilous, unexpected world. It’s going to be a long, long and difficult journey. How can you hang in there?

I do know why I am sharing our story. I want to help others. Maybe you are that one person who will be helped. If sharing our story and how we survived helps you, or someone you know, then I can say,

“Hurray! It was worth the pain of reliving it! “

In the process of writing this book, I have shared it with many other people. Some of them knew us and some didn’t.

Everywhere we go we find someone who has a need and we share our story with them and send them copies of the book in progress and they were touched and comforted and encouraged. We do rejoice in that.

I have received a lot of feedback and suggestions. A number of people were curious as to the depth and breadth of our daily routine in caring for Jessica. Without belaboring the point, but to satisfy your curiosity, here is what we are dealing with daily.

Our Daily Routine.

Jessica is a ‘total care’ situation and cannot do anything to care for herself. We perform all of the routine care such as bathing, combing her hair, trimming her nails. She is still in diapers, so we change her five or six times a day.

On a daily basis, our schedule looks like this:

I arise by 6 am daily and start her breakfast and crush her seizure medication. I add it to applesauce and give it to her, and then change her diapers. Renée then gives her an ‘airway clearance’ treatment and then feeds her breakfast and washes her up and grooms her. At noon one of us feeds her lunch and her second dose of seizure control medication, and then puts her down for a nap.

At 6 pm I give her a second ‘airway clearance’ treatment and then I fix her dinner and feed her and give her her third dose of medication. About 11 p.m. she gets her final dose of medication, a diaper change, and is tucked into bed with a kiss.

So there you have it. That is pretty much the routine we have followed every day of her life. It has been a long haul but it has been an amazing experience.

Please don’t feel sorry for us. That is not necessary. We consider caring for Jessica a privilege and a labor of love. There is nothing quite like feeding her, with one hand on her curly little head, while looking into her eyes, as she eagerly opens her mouth like a sweet little bird, eager to be fed. It is a great time.

Thoughts from Jessica’s Big Brother and Sister.

The other question that has repeatedly come up, is about our other two children, Jamie and Jon. What has been their reaction and how has all of this changed them?

I have shared a few of my memories with you in these pages. My original idea was to write the first draft of this book, have them read it and then share that. I forgot one thing. Reading the book was as difficult for them, as it was for me to write it. It just broke them down to relive it. I think that gives you an idea of how ‘growing up with Jessica’ has impacted them. So I decided to take another approach. I put together a few questions and asked them to respond. Here is their feedback.

Jamie’s Thoughts about ‘Growing Up’ with Jessica:

“I was ten when Jessica was born, so at an early age I realized that she was not like other three year olds. It became more obvious to me how really different she was when my parents brought home her first wheel chair. That chair brought in a wave of harsh reality that I would never be able to experience the enjoyment of having a “baby sister” as I had anticipated. There was a huge disappointment and often anger that I was robbed the joys of shopping at the mall or going to a movie with my little sister.

In my late teenage years I began to realize that there may never be a change in Jessica’s life, that maybe the change was going to be in the lives that surrounded her and that maybe the healing would be in our family and the people we encountered.

Through the years, it became apparent that Jessica’s disability was allowed by God for a greater purpose than I could comprehend. The lives that I saw touched by God through my family and especially my parents, was amazing. It seemed that my parents had an innate ability to really speak to those who were hurting. They were able to share their experience with a certain peace about God’s plan for our lives. You could see that amidst this terrible situation they were filled with compassion for others and true joy about their future with Jessica.

Shortly after graduating from high school, around the time of Jessica’s ninth birthday, I remember fearing for the first time that my parents may not make it through the struggles. There was a lot of hurt, guilt and bitterness that I could see as they learned to deal with the reality that a decision that ultimately they had made had changed our lives forever.

They had made the decision to give Jessica her immunization with the counsel of our family doctor. They had made the decision based on what they believed to be the best for Jessica and society told them it was the right thing to do. Ultimately, they made the decision and as an end result they would be given the opportunity to touch lives forever with their story.

The road seems long at times and there are still difficulties we face but looking back now at our lives with Jessica it is easy to see the blessings experienced as a result of her disability.

My parents have made an amazing and sacrificial decision to keep Jessica at home and care for her every day. We have been committed as a family to surrounding her with love, and felt that the best way to do that was to have her home with us.

I am still amazed at the sacrifices that my parents make and the lives that they touch every day with joy in their heart. I have come to truly believe that the trials we are given, with the right heart and God’s intervention, make us so much better in all aspects of life.

Our family has learned so much from this experience, and although there are times that are tough, we have grown so much as individuals. The bond that we share as a family is amazing and it has been a true blessing to experience the changes I have seen in our lives. Personally, my sister, Jessica, has caused me to have so much more empathy for the hurts and struggles that I see people dealing with every day.

Although Jessica can’t walk, can’t speak a word and needs constant care and attention, she has touched and truly changed more lives than I could count. What a true blessing it has been to have a “baby sister” so loved by God!”

Jon’s Thoughts about Life with Jessica:

“Having Jessica for a sister has changed me!

It has made me more sympathetic toward people with disabilities and empathetic toward the parents. When I see someone with a disability, I often find myself trying to make eye contact, spark a conversation, ease the awkwardness of the siblings and praise the parents for their commitment. A recent example that comes to mind was when my entire family (yes, Jessica too) went on a cruise celebrating my parents’ 40th. anniversary. Before jumping on the ship, we were returning one of the rental cars… in true Walker fashion. We were right on time… about an hour and a half late! (Any of you that have a disabled person in your family… know what I’m talking about.)

In the parking lot, there was a mother and her two daughters. One of them with a striking resemblance to Jessica at that age.

I was drawn to them. I remember the connection I had with the sister of this particular individual. She was about fifteen, and although we had never met before, I knew we shared the same road. I tried to encourage her and challenge her never to be embarrassed about the gift she had been given in her little sister. It was a tearful conversation. We visited, introduced Jessica to them, shared stories, laughed and even cried together; it was ordained that we met.

I would like to think Jessica has made me more sensitive and perceptive of people’s special and/or unspoken needs, but above all, I have observed the power of Love. I could not have asked for better parents to be that model.”

Jon’s wife Sara Shares about the Influence on Jon of ‘Growing Up’ with His Little Sister Jessica:

“I have observed that people always come first with him. The decision between people and projects is never a hard one for him. It’s just in him to always care for people first.

This may or may not be because of ‘growing up with Jessica,’ but I have noticed that he has an unusual ability to be level-headed in a crisis. God has used him many times as he’s been the first one to the scene of an accident, or the time he discovered two girls drowning in the ocean and saved their lives. It’s interesting how God seems to place him in those situations so frequently. I’m guessing it is because He knows Jon can handle it.

He is very sentimental. He’s also more comfortable than most men with showing his emotions. When he’s sad or moved by something he doesn’t hold back. He’s not ashamed to cry. I love that.”

How my Family’s Love Saved Me.

Well, there is just a little insight into the life-impact on Jamie and Jon, that has come as a result of the experience of having a little sister who is a special and unique little person.

Jamie is a successful self-employed business woman here in Boise. She is married and has a daughter, Emerson Elizabeth.

Jon is the Executive Director of a large Christian Camp in nearby McCall, Idaho. He is married and has three young boys, Elijah James, Jacob Pierce, and Benjamin David Walker.

I can vouch for the love and tenderness and empathy that they all have, because recently I experienced it first hand. The day I was due to finish this book I was hospitalized with acute pneumonia. I was in critical condition, with an especially sneaky, hard to detect, and deadly strain of bacteria that completely blindsided me. Aptly named ‘the silent death.’

I spent eight days in the hospital, and about the first four I was barely hanging on. A grave is six feet deep and I think I checked into the hospital at about the four foot level.

During that entire eight days, my kids and my wife never left me alone. I was in intense pain. I hurt all over. I couldn’t sleep and I was exhausted. Jamie or Jon or Renée were there massaging my back, feet and head… sometimes all at once. They fed me and brought me ice chips and encouragement.

I can honestly say that they saved my life with the unselfish love they showered on me. I know it was the difference.

With their love and God’s comforting assurance, I recovered. It was an experience I will never forget. It was amazing.

If their unselfish love and empathy had not saved me, you would not be reading this book. Jessica’s influence was there.

Staggering Forward.

Earlier I asked the question. “What would you do when faced with a situation with no easy solution?” No quick fix. A problem that strikes at your very heart and soul and just won’t go away! Your life and everything in it is forever changed.

I explained what we did. We staggered forward.

We are often asked the question in various forms. Sometimes spoken, sometimes implied. ‘How do you manage to go on?’ It’s a natural question. Well, we have staggered forward and grown stronger. Not because we are super human, super smart, or super saints. It is possible because we have discovered something that is greater than anything else in life.

On page one, I shared how Renée and I had begun our married life together by looking for the answers to life and the meaning of real love, ‘unselfish love,’ through our study of the Bible.

We found those answers, and have experienced, rather unwillingly at times, the real fleshed out impact of the definition of true ‘unselfish’ or sacrificial love. My recent trip to the hospital is just another example.

We discovered that we each have a soul, and God in his wisdom, has given us an ‘Owner’s Manual’ called the Bible. “Greater love has no one than this, that he lay down his life for his friends.” That is the Biblical definition of unselfish or ‘agape’ love.

If you practice it… it will change you, because you could say it is the love of God. It is the true nature of God.

We all have to chose on what to build our life. Life is full of choices, and every choice has a result or a consequence. That is a principle of life that is inescapable.

An Important Lesson.

In the Bible there is an illustration shared by Jesus Christ in the book of Matthew, that is an appropriate lesson to consider.

“Everyone who hears these words of mine and puts them into practice, is like a wise man who built his house on the rock.

The rain came down and the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.

But everyone who hears these words of mine and does not put them into practice is like a foolish man who built his house on sand.

The rain came down and the streams rose, and the winds blew and beat against that house, and it fell with a great crash.”

Jesus Christ in Matthew 7:24-27 NIV

Our experiences with Jessica have taught us that lesson very well, and we continue to explore the breadth and depth of God’s seemingly endless and bottomless, love and wisdom, on a daily basis. It is there for you and everyone.

God is the most important difference in our lives. God is what has given us the strength and perseverance to not only go on, but to prosper in our tragedy. We have been able to survive the ‘long haul’ and face the future boldly, but not alone.

We have built our house on the ‘solid rock’ of faith in God, and the storms of life have nearly swamped us, more than once, but we have survived, and grown stronger!

God is the key to our survival and He is how we go on. We have prospered in our pain and Jessica has been the catalyst.

God is how we go on, with our hearts broken. God is the key to survival in good times and bad. Your survival and mine… in the ‘long haul.’

Next Week: “Growing Up… with Jessica.”

I will share the final chapter in this blog series about, “What happened to Jessica?”

In February while vacationing in Hawaii with my entire family, I suffered an acute heart attack which required two separate surgeries to correct. My life was saved by my new Hawaiian ‘ohana,’ another amazing adventure in Jessica-land. I learned once again that, as my Island friends kept telling me, “God has your back, Yah?”

After returning to the mainland, I experienced another set of medical issues requiring more surgeries. Due to the impact of all of this I am suspending my blog  posts indefinitely, or at least until I can finish my new book, “Prayers from Jessica.”

“Prayers From Jessica.” Is a sharing of ‘God’s Promises of Comfort and Encouragement’ that we have turned to over our many years of caregiving.

Thanks for your interest.

Jim, Renée & Jessica