Guest Post: Lore Hynan, aka my beautiful mother, writes about my diagnosis and dealing with life thereafter as a parent. If you know my mom and I, you know we are as thick as thieves. I truly do not know what I would do without her in my everyday life. Growing up, we always had a good relationship, but after diagnosis, that relationship became much deeper. She became my therapist, my caregiver, and my best friend.
I love all of my guest posts, but this one holds a particularly special place in my heart. Only recently have I started to realize how much her and my dad have gone through caring for me over the past 10 years. When people say you become your parents as you get older, I just smile, because I could only hope to be half the mom this woman has been to me, nonetheless through the peaks and valleys of caring for a child battling a chronic illness. So, here is life from her perspective!
The beginning …. It was a fall of 2007, Katie was spending seemingly more and more time in her bathroom. What is she doing? I could tell she was hesitant to tell me what was going on, but after a few weeks she finally came to me and said “Mom, something isn’t right…” I held my breathe as I wasn’t sure what she would say next. I listened intently as she described what was happening to her and why she was constantly upstairs in her bathroom. All I could come up with was “Are you sure? Is it painful?” as I tried to process what could be going on. What could this be? We don’t have a family history of anything like this. She continued to reassure me she wasn’t in pain, but that became difficult to believe as her blood loss became more and more apparent.
The next step…. was that we had to see a doctor, soon. I was overwhelmed just trying to figure what type of doctor to contact. Why is all of this happening now? She’s young and for all practical purposes, has been really healthy so far in life. As we searched for a diagnosis, doctors visits and absence notes to her school became her new normal. Once we finally found a doctor, we spent hours going through questions, trying to determine what was going on, which led us to her first scope. I sat in the room while these new doctors talked through performing Katie’s colonoscopy, noting the inflammation in her small intestine and the increased concern for the irritation present in her colon. At the end of it, we finally had a name for all of this – Crohn’s Disease.
Then came treatment … which proved to be much like a chess game, one filled with patience, something that is admittedly, is not my greatest strength. We again met with Katie’s doctors who went through her initial treatment options. Our first round of medication was prescribed and filled, and we did our best to make sure Katie was taking her medicine on schedule and following directions given. However, waiting for the medicine to take effect proved to be fruitless. Why is this not working? While many medications came and went, the one that will always stick with me was Remicade. We did the research we thought was necessary, but were navigating a completely foreign journey. Remicade ended up not just being another failed treatment for Katie, but the beginning of the her hair loss and lack of appetite, the first major physical signs of how much this was impacting her internally.
That beautiful hair … Katie always loved her hair and rightfully so, it was not only thick, but also a beautiful chestnut brown color. When she was in grade school I remember having to get the extra thick ponytail holders in order to hold her braids together. After we started Remicade, I noticed there seemed to be a lot of that hair on the floor … a lot more than normal.
Katie couldn’t make it between appointments without having blood loss and other symptoms. The doctors were so hopeful this was going to be the medicine that worked! What happened? Why did I let her go through this? Although you have to go through certain classes of medicine before you can qualify for the next class (as far as I remember), I began to regret my choice in allowing Katie to be administered this drug. I wondered what kind of impact this would have on her long term.
Fast forward … to 2009 and many more prescriptions and a few colonoscopies later, nothing seemed to be working longer than a couple of months! Frustration began to erupt as a parent. We have allowed her to be given these treatments with these extreme side effects, but why haven’t any of them helped? Is this really Crohn’s? What else can we do to get her healthy again? Around this time, we started to realize this wasn’t going to be a minor bump in the road for Katie, this was a major part of life now. Our good family friend, who Katie has known since third grade and who happens to be a doctor, told Katie “You won’t likely die from Crohn’s, however you will die having Crohn’s” – this really resonated with me as I began to accept … this wasn’t going away.
For the 7 years Kate was in college and law school, there were several new doctors and a variety of new treatments, along with some hospital stays. I attended as many as possible with her but it quickly became apparent I couldn’t “mom” her forever. After all, she was an intelligent young adult and was advocating for herself to the best of her ability, which wasn’t a huge surprise given her independence and inquisitive nature at a young age.
We were thankful that her disease behaved itself throughout law school. It was an incredibly stressful and emotional time in her life, so we just prayed it wouldn’t interfere with her hard work. But the year following graduation brought another flare that challenged Katie much more than ever before. Over the years we were able to combat these flares with a series of reactive prescriptions since many maintenance drugs did not prove successful, but when this one was not able to be controlled, we began to refocus as we realized if we don’t get a handle on understanding this disease, things could get really ugly.
As a parent …..
I am told I have the act of worrying down to a science. When Katie was first diagnosed, it wasn’t just the current state of her health, it was everything that accompanies it too. What happens if insurance runs out? How will these treatments be paid for? How many will she need and for how long? Will she be healthy enough to do all the activities and travel like she talks about non-stop? She’s not always going to live at home or nearby where I can help, who will take care of her? How will I be able to ensure she is getting enough nutrients in her body when everything causes her pain or rushes through her? She is supposed to go to college the fall, how will she be able to handle this diagnosis and all these new changes? What if she wants to have children? Will she be healthy enough to navigate a pregnancy? Will her children have the same health issues? All of these thoughts raced through my mind upon diagnosis and since, but I of course couldn’t tell her that.
But during all of this, our relationship grew. We before had the typical mother and daughter-in-highschool relationship, but Crohn’s changed all of that. It wasn’t like her friends had dealt with these issues, even I couldn’t relate, but I just tried to listen and trust her judgment, which is a struggle for any parent, and Katie is my youngest and my only daughter.
While everyday is different and some provide more of a struggle than others for both of us, we couldn’t be more proud of her now. She knows how to research and when to go with her gut feeling about her health, like when she knew something was wrong and admitted herself to the hospital. If her physicians and caregivers don’t listen and answer her questions, she seeks out one that does. I’ve found through this process that doctors are not perfect. They don’t have all the answers even when you want to believe they do, and that is also okay. I know Katie has learned a great deal through all of this and still continues everyday to read and research more about what she can do to minimize a flare and manage a healthy life long-term.
It makes me smile every time I see a post she has created and hope, just as she does, that she is reaching someone that benefits from it! The biggest lesson I have learned since Katie’s diagnosis is to go with your gut but also listen to how your child is feeling… You may not know that at the time you really were the only one listening. Having that support system and validation is crucial not only for a child, but also for a patient navigating a new diagnosis.
Thanks for reading!
– Katie’s mom, Lore Hynan
I love you, Mom!