Happy July everyone! June didn’t quit and stayed busy the whole way through. It was an amazing month. I got to go to Cincinnati for work training then a one day turn around before the Oley Conference in Memphis!
I’m so excited for this post. My sweet dad volunteered himself to contribute to this blog as my first guest writer which is just so amazing! Let’s jump on into that to hear my dad’s perspective of some of the things my family did to help me to better cope with my illness. I’ll be peppering in photos of dad and me from over the years.
First, let me introduce myself. My name is Roger. I am Lauren’s dad and I live in McKinney, Texas. Lauren is a light in my life and I have learned so much from her. I am so proud of her and what she is doing in her world to change it for the better. I wanted to write this piece for her blog because we didn’t really do things by the book when we discovered that Lauren was chronically ill. Maybe the things we did will help someone figure out how to cope with a challenge in their life.
As a parent, you are thankful for a healthy baby. Lauren arrived healthy, strong and beautiful. I was a proud daddy and took her around the small town where we lived in her carrier to show her off. Her mom and grandma made sure she had lots of cute outfits and bows. As she began to grow and develop, we watched for things that might be extraordinary – nothing there. Lauren took her first steps, spoke words and began eating regular food right on schedule – maybe even a little early. Then, the difficulties started – somewhere around the age of 3 or 4, Lauren started to complain of tummy aches regularly.
On a sunny Sunday morning in April 2006, Lauren’s mother and I were sitting at a conference table across from the lead doctor of the GI department of Children’s Medical Center – Dallas. He had requested a private meeting to discuss our daughter’s condition and prognosis after a long week of tests and treatment. We each had our fears, but had no idea the path we were starting down as a result of this meeting. After the doctor came in, we talked briefly before he announced, “Your daughter’s gut does not work. We aren’t exactly sure why and the condition is quite rare. Basically, there is no cure.” I let his words sink in. Afterward, the questions started. In that instant, my reality changed. Before, I had always hoped against hope that an easy answer and simple solution could be found to help our lovely daughter.
But, my reality changed in that moment from seeking a simple solution to solve the problem to how could I help my daughter learn to cope with this reality and have as normal a life as possible. When we had this meeting, we didn’t know what her treatment would involve and where her journey would take her. In fact, we didn’t even know what to call the condition she had! Those lessons would come with time. We had watched with concern for several years as she had “failed to prosper.” This is doctor talk that translated to “failed to grow and gain weight.” She was in the bottom 5th percentile in weight and losing ground fast despite our best uninformed efforts to help. We had spent years visiting various doctors with no results. We always received the same diagnosis – “She is too stressed. It’s all in her head.” Or “she has too much cheese in her diet.” I distinctly remember instances when I walked behind her and noticed the bones in her elbows protruding because she was so thin.
When Lauren was admitted to Children’s’ Medical Center, she was 13 years old. At 4 foot 7 inches tall and weighing in at a little over 60 pounds, she was literally falling from the growth chart for 7th graders. She was still wearing the same clothes she had worn in the 3rd grade, 4th grade, 5th grade (you get the picture knowing about girls and their clothes)!This is background information to questions and changes in reality that occurred when I realized that my daughter had a chronic life threatening medical condition. As I write this, I reflect on memories from this difficult time. It is hard to write this but my hope is that the ideas here will help others who have to walk down a similar path with their child. It took several years before I actually came to grips with the fact that my daughter was medically challenged.
The first thing a parent asks when a diagnosis like this is given is “Why my child?” I would think this is a natural reaction because everyone wants their children to be healthy and happy. To that question, there is no answer and it is folly to spend a lot of time on it. I guess I have always been a “fixer” who sought solutions to problems. Sometimes, I sit and work around a problem for days before an answer presents itself. In this case, rather than looking for a non-existent answer, I looked for ways to help Lauren cope with her symptoms.
One of the first and perhaps wisest things we did was start a Word document detailing in layman’s terms what had happened with Lauren’s tummy in the past. We detailed as closely as we could the events in her life that were significant and may have had some effect on her condition. This document has proved invaluable as it has given doctors new to Lauren a look at the recent past without the story having to be told over each time with details either forgotten or omitted.
Much of Lauren’s Pretty Couch Potato blog would have been forgotten if we had not taken the time to put it down in words. Her document is 25 or so pages long now (but reading the last 3 or 4 pages can give an ER doctor enough background information to begin treatment and beats having to go through 3 files 6 inches thick!)
Over the years, Lauren and I had many conversations where we talked about things that worked and things that made things worse. The reason for the Q & A sessions was to find ways to help her feel better. She was old enough to understand that the pain was hers, but I was trying to help her uncover patterns in symptoms and behaviors that could either help or hinder her health. Identifying patterns could be a key to finding a way to cope! I believe our Q & A sessions helped Lauren to become the young lady who writes the Pretty Couch Potato blog about her condition and its challenges. It has made her into a stronger person who can help others on their particular journey and give voice to the concerns of those with chronic intestinal issues in her job.
Another thing I did that may be considered a little different was I got out of the way when she began her journey on TPN. You could never call me a “helicopter parent!” Lauren handled ordering her supplies, talked to her pharmacy and nurses, set up appointments for home health professionals and did her own nightly TPN hookups. She became expert at it very quickly and medical professionals found out that she knew exactly what she was talking about! If I had insisted on being in the way, I believe it would have hindered her in developing the knowledge and expertise she has gathered in her journey and is sharing in her blog and job.
Through observation and reading, I have learned that happiness is a major contributor to health and well-being. Even though I had nothing to do with it, I knew when Lauren met Anthony four years ago that it would be a positive turning point for her health. Anthony’s background in physical therapy helps him provide her with good advice and support when she isn’t feeling well. It isn’t so much his background in medicine; it is that they are happy together in their journey that is important. I am so grateful that they are happy and doing well. I also know that when Anthony is at work, my grand dog, Elway, is on the job taking care of my daughter!Lauren’s diagnosis brought change. Some of the changes were small and some were life altering. The life lesson in this for me has been that prayers are not always answered in a matter of days, weeks or even months – sometimes it takes years before the answer is revealed and the answer may not always be what was originally asked for. Sometimes, the answer is totally different and while I may not understand the reason – that is okay, too.