The day we met

Turner syndrome and I met for the first time on a phone call in December 2009.   I was at work, in my office, when the telephone rang.   It was the genetic counselor from Children’s Healthcare of Atlanta gently explaining that they had found the underlying cause of Caroline’s medical problems… Turner syndrome (TS).   Honestly, all I really heard during that call were the words: Turner Syndrome, infertility, and an organization called the Turner Syndrome Society of the United States (TSS). Three things about that day stand out in my memory: First, spinning in my office chair – round and round and round – trying to wrap my brain around what I had just heard; second, feeling completely deflated and overwhelmed; and, third, visiting the TSS website and immediately noticing a picture of a beautiful little girl with a butterfly (the symbol for TS) painted on the side of her face.  Seeing that little girl with the butterfly on her face made me smile because, since birth, the theme of Caroline’s bedroom has been butterflies.  On that very first day in December 2009, the TSS website was a beacon of hope and comfort as I slowly absorbed and accepted my little girl’s diagnosis.

February is Turner syndrome awareness month. Raising awareness of TS and giving financially to fantastic organizations like the Turner Syndrome Society are incredibly important to me for several reasons:

1. Caroline is my “1 in 2000”.   TS can come with a host of various medical, educational, and social challenges. It doesn’t define her, but it does and can present unique challenges throughout every stage of her life.
2. I want the best for every girl and woman with TS. I want them to have access to the best medical and educational resources. I want the researchers to keep on researching; the doctors to keep on doctoring and supporting; the givers to keep on giving; and the parents and caregivers to keep on making their voices heard in their local communities and beyond to affect change.
3. Throughout the years, great strides have been made in the research and medical communities because those before us did all they could do to bring awareness and attention to TS.   More awareness, funding, and support are needed. I am just one person, but I will do all that I can do to help.

This year, I have decided to step out of my comfort zone and bring awareness in a new way… I will be raising awareness by running the 5K and 10K races during the Disney Princess Half-Marathon Weekend at the end of this month. I have been planning and training for this event for over a year, as this will be my first 10K race AND running both distances on consecutive days.  I can’t wait to run in my butterfly-inspired costume, raise awareness of TS, and honor my sweet girl in a fun and exciting way!

I am always on the lookout for butterflies.  I found these flying beauties at Epcot.

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Baking with a (gluten-free) twist

This time of year – between Thanksgiving and Christmas – is always one of my favorite times of the year for cooking and baking. I love to bake. I am certain that my love for baking comes from my dad and watching him turn simple ingredients into delicious masterpieces. I have many fond memories of him making different types of breads like white, pumpernickel, and banana-nut, pizza crusts, bagels, pies, and biscuits. He is like a magician as he measures ingredients with his eyes and hands, not measuring spoons and cups. He is especially crafty and brilliant at making biscuits – plain, cheddar, and cinnamon raisin are some of his best! If you know anything about biscuits, you know it takes a great recipe and a skilled hand to make them light, fluffy, and tasty.  My dad certainly has biscuit making down to an art.

When Caroline was little, she loved watching her Paw Paw (my dad) make biscuits. He made special ones that she could easily hold in her small hands (stick-shaped, rather than the traditional round-shaped biscuits). She even had her own name for them – stick biscuits. She loved my dad’s biscuits and always looked forward to him making them for breakfast during our visits together. I did, too.

In 2009, when Caroline was five years old, she was diagnosed with Celiac Disease. Celiac Disease is an autoimmune disorder whereby a person’s immune system inappropriately responds by attacking and destroying the lining of the small intestines when the person ingests gluten (a protein found in wheat, barley, and rye).  Left untreated, Celiac Disease wreaks havoc on the gastrointestinal tract. In Caroline’s case, it was severe abdominal pain during and following eating, diarrhea, weight loss, and neurological issues due to malabsorption of important nutrients. The only way to treat Celiac Disease is by not eating anything with, or cross-contaminated with, gluten. Over time, once a person maintains a strict gluten-free diet, and the gut has had time to heal, the damage to the small intestines reverses and heals itself.  There are no medications or cures. Maintaining a strict gluten-free diet is the only way to manage this autoimmune condition.

Before Caroline’s diagnosis, I only knew of two types of flour… self-rising and all-purpose. For the first 35 years of my life, I had baked with flour and never once considered or appreciated its source… wheat. Guess what mainstream breads, cakes, pies, bagels, biscuits, and a gazillion other things are made with? Flour. Guess what type of flour? Wheat. Guess what is in wheat? Gluten.

Caroline took the diagnosis like a champ. I, on the other hand, did not. I cried as I walked the aisles of the health food store for the first time, looking bewildered for things such as brown rice flour, white rice flour, fava bean flour, guar gum, and xanthan gum. I had no idea that flour could be made from rice, beans, almonds, pecans, and other grains and nuts. And what in the world was xanthan gum?!  I also quickly discovered that when you slap gluten-free on a product label, the cost of the item skyrockets to triple and quadruple the price of its gluten-containing counterpart. It’s expensive.

The Celiac diagnosis drastically changed the way I baked everything. It is a bit of art and science when you use gluten-free flour for baked items. It usually takes a combination of two to three different types of gluten-free flours and xanthan (or guar) gum for baked goods. For example, the combination of gluten-free flours you would use for a cake is different than, say, the combination of flours you would use for making bread. You also have to be mindful of the types of flour you use. You do not want your vanilla cake to have a hint of bean flavor because you used a bean flour in your gluten-free flour mixture. Yuck!

For the first couple of years post-diagnosis, I mourned the way I used to bake. As silly as this may sound, I missed wheat flour. Many of my attempts at delicious, gluten-free baked goods ended up in the trash can. I spent a lot of time, and wasted a lot of money, trying to create a tasty flour combination for different breads, cakes, pies, and muffins. Fortunately, the gluten-free revolution took off a few years ago. As a result, better gluten-free options and varieties were developed and began popping up in grocery stores around town. It really was a beautiful and much welcomed change.

Over the years, Caroline and I have tried many of the commercial gluten-free flour combinations, mixes, breads, cookies, crackers, and pre-packaged gluten-free items. We had to kiss several frogs, too, before finding some real gems and our “go to” gluten-free staples. Some of Caroline’s (and my) favorite gluten-free baked goods come from using the King Arthur line of gluten-free all-purpose flour and baking mixes. It has given me back some of the joy I feel when I bake cakes, chocolate chip cookies, pumpkin bread, banana-nut bread, and pies. I don’t feel like Caroline is missing out because I think the gluten-free versions taste the same, if not better, than their gluten counterparts. The real test though is when my son, Landon, can’t tell the difference and asks for more. This makes me a very happy momma.

Eight years ago, the Celiac diagnosis felt big and life-changing, and it was at the time. Thankfully, however, time and perspective have helped us adjust. It’s simply a way of life now. If I could go back in time and talk to that overwhelmed mother crying in the grocery store, I would give her a big hug, look compassionately into her eyes, smile, and say this to her:

• It is going to be okay. I promise.
• Have fun experimenting with recipes.
• If at first you don’t succeed, throw it in the trash and pat yourself on the back for trying.
• If a fancy, gluten-free dessert recipe calls for almost $75 worth of ingredients that you’ve never seen or heard of before, can barely pronounce, and takes a whole day to prepare, please step away from the recipe and, I repeat, do not attempt to make it. It most certainly will end in a disaster and tears. This may or may not have happened to me. 🙂
• You will figure this out.

I am still searching for a great gluten-free biscuit recipe. After all, my dad set the bar high so I am very picky when it comes to biscuits, but I am confident that I will find it one day. Until then, I am going to enjoy my gluten-free baking successes like these gluten-free banana, chocolate chip, pecan muffins that just came out of the oven. Yum!

Sometimes you just have to laugh

Today has been one of those days. To really appreciate this story, let me tee it up by providing some background information. My daughter, Caroline, and my mom have not felt well for several months, with their symptoms worsening over the past 8+ weeks. As fate would have it, both had colonoscopies within a week of each other. Both have also been anemic, though my mother so much so that she required an iron infusion and blood transfusion. Within days of each other, Caroline was diagnosed with Crohn’s disease and my mother with colon cancer. The past few weeks have been a flurry of appointments. I think it’s fair to say that we are all feeling the effects from the stress of not knowing what was wrong, to knowing what was wrong, to forming action plans, and then beginning the process of getting both of them on a path to better health.

Fast forward to this week.

Caroline had her second Remicade infusion on Tuesday, and my mom had surgery on Wednesday to remove the cancerous section of her colon. I have been trying to help out and be there for my mom and dad as much as possible, in between Caroline’s infusion and her not feeling well the past few days. Needless to say, the first part of the week has been eventful and it’s definitely beginning to show in my appearance and attitude. Yesterday, I had that “just rolled out of bed” look going on and, honestly, today was not much better. Thank goodness for stretchy pants, baggy sweatshirts and t-shirts, ponytail holders, and comfy running shoes. Oh yeah, and coffee – lots of it.

But, wait… the story doesn’t end here.

What if I told you that, in addition to all of this, my dog started having the runs from both ends (pooping and vomiting) AND that I received two separate phone calls from two of my son’s teachers on Wednesday and today? Yep… in between Caroline’s infusion and not feeling well, and my mom’s surgery, I have also been cleaning up dog doo and vomit AND fielding calls from my son’s teachers about my son putting raisins in his friend’s milk and not doing his homework. I could have cried a really hard and ugly cry today. I was on the verge of it. Instead, I laughed and embraced (in a hot mess sort of way) the absurdity of the day.

Touché, Life. Touché.

Superheroes

Now she’s stronger than you know,

A heart of steel starts to grow.

When you’ve been fighting for it all your life,

You’ve been struggling to make things right.

That’s how a superhero learns to fly.

Every day, every hour, turn that pain into power.

(Lyrics from Superheroes, by The Script)

I remember when the nurse said that Caroline had failed her newborn hearing screening in both ears. Caroline was barely a day old. I remember the confusion. The fear. The worry. I remember wondering if Caroline would ever hear our voices and how much we loved her. I wondered how she would get along in this world.

I remember when the gastroenterologist came into the waiting area, after Caroline’s upper endoscopy, and told us that Caroline had Celiac Disease. She was five years old. I remember the sadness. The anger. The worry. I remember wondering how Caroline would adjust to a gluten-free diet and how birthday and holiday parties and celebrations would forever be different. I remember feeling overwhelmed and crying in Whole Foods as I tried to navigate the gluten-free world for the first time.

I remember when I received the phone call from the geneticist who explained that Caroline had Turner syndrome. She had just turned six years old. I remember only hearing three things the geneticist said on that phone call: Turner syndrome, infertility, and the Turner Syndrome Society of the United States. I remember leaving my office, driving home, crawling into the bed, and crying myself to sleep. I remember the profound heaviness and sadness that I felt for days. The fear. The confusion. The worry. I remember wondering what kind of life was in store for Caroline.

I remember sitting in Caroline’s hospital room and listening to the gastroenterologist explain that the bleeding was due to Ulcerative Colitis. She was 12 years old. I remember the shock. I remember the frustration. I remember the worry and anxiety. I remember feeling angry and sad at yet another chronic disease heaped upon my daughter.

I remember receiving the phone call from Caroline’s gastroenterologist and listening to him explain that the biopsy from her colonoscopy showed that Caroline has Crohn’s Disease. She was 14 years old. I remember feeling confused, anxious, and scared. Actually, I don’t have to remember my feelings because they are very much a part of my every day life right now. I will not be able to completely exhale until the Crohn’s is in remission. I wonder how long it will take.

I remember the nightly growth hormone shots, the weekly immunoglobulin infusions, the 20+ ear tube surgeries, the struggles with school, and the many other challenges that have filled in the gaps between these years. Caroline’s journey has not been easy, but she has traveled, and continues to travel, this road with grace, bravery, and a hearty dose of optimism.

Over the years, I have watched this baby girl turn into a beautiful, bright, young teenager with an abundance of energy and zest for life that astounds me. I am convinced that she was born with superhero powers called resiliency and tenacity.  She, and other children and adults with their own struggles and challenges, inspire me everyday. They are the real superheroes of this world. To quote another line from the song Superheroes: They turn pain into power.

The draining effect

Do you know what drains me faster than anything? Going to a medical appointment. It doesn’t matter how much sleep I get the night before or how rested and energized I feel prior to leaving for an appointment. It always ends the same way. I feel as if every drop of energy has been sucked out of my body. I feel exhausted and cranky. I feel… discombobulated. I want to crawl in the bed, pull the covers over my head, and take a nap. In the beginning, this frustrated me because I didn’t understand how I could possibly feel so mentally and physically exhausted simply by taking my daughter to a doctor’s appointment. I used to think there was something wrong with me – that I was weak and incapable of doing the simplest of tasks. I spent a lot of time beating myself up for this so-called weakness.

I’m not sure how much time passed before I picked up on this pattern: Feel “normal”. Go to doctor’s appointment. Feel drained. Feel frustrated at myself for feeling drained. I suspect it was probably around 2009/2010 when I started reading and researching topics such as “children with chronic health conditions” and “parents of children with chronic health conditions”. I began to better understand the psychological component of both the child and parent and the unique situation both are in when dealing with a chronic, life-long health condition. In our case, it wasn’t just one, but multiple chronic health issues. I read several insightful articles and found myself identifying with these parents and what the professionals and experts were saying about them. I quickly understood how easy it was to become burned out, anxious, and depressed. The bottom line was this: The parent has to take care of herself/himself in order to provide the best care for the child with a chronic health condition. This knowledge was a catalyst for me. I became very interested and focused on how to take better care of myself so I could be at my best and provide the best care for my daughter, my son, and our family.  Please understand though that sometimes my best was (is) simply getting dressed and getting through the day without beating myself up for all of the things I should have done.

I wish I could tell you that I no longer feel exhausted and drained following a medical appointment, but that would be a lie. I just so happen to be in a season right now where I feel this way. Here’s what I know and can tell you about myself and what I have learned along the way:

1. I am aware of it. Awareness is key. You can’t address and fix what you don’t know.
2. I recognize that I feel this way because of a variety of reasons (such as the stress of driving to an appointment that is 20 miles away, but takes two hours because of where we live; the stress of how long we will have to wait before seeing the doctor; the worry that comes along with what the doctor might say or a test that he/she might order; the unexpected diagnosis or news that you receive from the doctor; the anxiety that your child feels and expresses to you, but you can’t help her feel less anxious and scared at that moment).
3. All of these stressors, whether I recognize them immediately or they occur at a subconscious level, take a toll on my body. When I feel drained, it is because my body is reacting to these stressors. My body is telling me that I need to address them and be kinder to myself during these times.
4. Praying is the first thing I do when I start to feel this way. It is an automatic response.
5. Walking, but especially running, works wonders for me.
6. Going outside and taking in nature and the sunshine (Vitamin D) help center me. For example, I find so much beauty in a full moon, the changing color of the leaves, and bright blue skies with white, fluffy clouds.
7. Journaling helps me get out the junk and noise inside my head by identifying what I am feeling and exploring why I feel the way that I do.
8. Listening to music that speaks to my soul can bring the tears and frustration to the surface in a cleansing, cathartic way. One of my favorite songs is, The Words I Would Say, by Sidewalk Prophets.
9. Reading relevant articles, blog posts, devotionals, and books are really helpful and have a way of helping me along and during these times.
10. And, finally, getting plenty of rest is a game changer for me. After all, my body IS telling me that it is tired. It needs more rest than I am currently giving it. There is no shame in going to bed early. There is no shame in taking a nap.

I can usually move past the drained, anxious feelings within a few days, but honestly it varies by situation and circumstance. I also know there are times when I need to call on my therapist because, sometimes, I need extra help. The most important thing though is this: I no longer beat myself up for feeling drained, anxious, and exhausted. I am doing my best. As Holley Gerth so beautifully writes in her book, What Your Heart Needs for the Hard Days, I am “embracing the paradox”.

Some of the things that keep me moving: My Bible, journal, running shoes, encouraging words, and lots of books that speak to my heart.

The beauty of nature. Look at that gorgeous, blue sky.

The certainty of uncertainty

My heart dropped yesterday when I answered the phone and my daughter’s gastroenterologist introduced himself. First of all, outside of actual appointments or procedures, his (amazing) nurse is the one through whom we communicate. Their system works well and I like it that way. Second of all, we had just met with him two days earlier, after Caroline’s colonoscopy. We knew her Ulcerative Colitis had worsened and that she would require a different, more aggressive type of treatment. We also knew biopsies were taken, which is standard protocol, so I didn’t really give the biopsies any more thought… until that moment when I answered the phone and realized her doctor was on the other end.

And there I was again – stuck in that “in-between” moment – that moment when you realize something is wrong, but you don’t know what it is yet. Time stands still. Your heart beats faster. Your breathing becomes shallow. Your throat feels paralyzed. You can barely whisper, much less squeak out a coherent sentence. That was me yesterday. That was me two days ago waiting for Caroline’s doctor to finish the colonoscopy and discuss what he had or had not found. That was me two days ago waiting to hear from my mother about the pathology findings from her own colonoscopy confirming a cancerous lesion. That was me for the past ten days wondering why my mother’s hemoglobin was so low that she would require a blood transfusion and whether the lesions that were found in her colon were cancer.

I am certain about one thing with uncertainty… It takes a conscious effort to focus and continue going on with the everyday, routine parts of my life. This is difficult, but necessary. Life goes on and I have to tell myself that repeatedly. I have to remind myself that whatever the news, whatever the outcome, we will figure things out. We always do. We will research, educate ourselves, and develop a plan to move forward. We will continue living life in the most intentional and profound way that we can and are able. We will take one day at a time. In the most difficult of times, we will simply put one foot in front of the other.

I took a deep breath as I listened to Caroline’s doctor explain that the biopsy showed granulomas (which could not be seen with the naked eye) and are a sign of Crohn’s Disease. And there it is… Crohn’s Disease.   *Sigh*

One foot in front of the other. One step at a time.

The cycle of an unpredictable chronic disease

The past few weeks have been tough, so I thought I would focus this week’s post on what it is like to be right smack dab in the middle of an ill-tempered, wily, chronic disease with your child.

Although we entered the world of inflammatory bowel disease and ulcerative colitis over a year ago, I in no way feel like we have this disease under control and I DO NOT LIKE THAT FEELING (yes, I am yelling)!!! Sometimes I am lulled into a false sense of security when symptoms are few or non-existent and my daughter feels well and happy. We may go weeks, even months, like this. Life feels good, returns back to our normal, and I think to myself, “Finally. Maybe we have this under control this time and the ulcerative colitis is now in remission.” Whew, FINALLY!

And then it happens. By it, I mean any one or more of the following begin(s) to occur with my daughter: stomach pain, blood in her bowel movements, and/or additional trips to the bathroom. An energetic teenager becomes more fatigued and easily drained; minor pain becomes more intense pain; a little blood turns into a lot more blood; an extra trip or two to the bathroom each day turns into multiple times each day racing to the bathroom in hopes of making it in time.  There have been bathroom accidents in very public places like the mall, at the dance studio, and school. If you do not understand what I mean by a bathroom accident, then Google “ulcerative colitis and bathroom accidents” or click this link.  I will spare you the details, but trust me, it’s not pretty.  It is sad and awful all rolled into one. I absolutely HATE this for my sweet girl and it makes me cry every time this happens to her.

When the symptoms are minor and just starting, I monitor the situation and begin documenting them because, should I have to contact my daughter’s gastroenterologist, I will have to answer certain questions. I’m not bragging, but I know them by heart :-). I know enough about the symptoms and their progression because we have been through this several times since her ulcerative colitis diagnosis. It is usually around this time that I begin to get that old familiar “rock in the chest” feeling. It is a physical reminder that my anxiety is ramping up and a cue for me to pay closer attention to how I am really feeling about the situation.

As the cycle continues and the doctor is called, one or more of the following happens: blood is drawn; stool specimens are collected; and medication is either added or existing medication is modified. We then watch to see if any of the changes make a positive difference. Until about six weeks ago, we were able to manage the disease like this; however, due to a recurrent GI infection that is aggravating the ulcerative colitis, we are in new, unchartered territory (at least for us anyway) right now.

It is around this time that my daughter (legitimately) worries and wonders out loud about the what-ifs (i.e., What if this doesn’t work? What if this never gets better?), having to begin one of the more serious medications, and the possibility of surgery. I worry about them, too. I have to remind myself, like I remind her, that we are not there yet. It is one of the first things I tell her when her anxiety starts to ramp up. I have to remind both of us to focus on the present and to do something that makes us smile or feel better (for me, running is very effective).  It’s imperative that once we have expressed how we are feeling that we don’t get caught in the trap of dwelling on all of the what-ifs and possibilities. It is a downward spiral into the abyss if I allow it to continue. I know this because we have been there before. We have been dealing with this part (the anxiety) of a chronic illness for many years because, like I mentioned in my first post, my daughter has several chronic health conditions.

Managing anxiety and recognizing the onset of depression is of the utmost importance. My daughter and I have sat through many, and I do mean many, therapy sessions throughout the years. Medications to help with anxiety have been prescribed, changed, removed, and added back again. We have read books and articles on managing anxiety. We have used meditation and relaxation techniques, visualization, essential oils, etc.… In my mind, I have a toolbox of techniques that I use with both my daughter and myself, but knowing when it is time to seek professional help is KEY. Mental and emotional health is part of the whole person and being the healthiest and happiest person you can be. In my opinion and personal experience, recognizing and acknowledging this is essential for parents, child, and siblings when dealing with a child’s chronic illness. I can’t emphasize that enough.  

Things eventually start to improve and I no longer think about ulcerative colitis 24/7.   My daughter begins to feel healthy again and resumes normal activities and teenage shenanigans, which in turn makes me happy. I feel myself finally starting to relax and unwind, which apparently is a cue for my body to respond. At this point, I usually have to deal with annoying stomach issues and headaches/migraines, but at least I know what to expect from my own body and how it reacts to this type of stress. It’s a predictable pattern. Eventually, everything settles down and I say to myself, “Finally. Maybe we have this under control this time and the ulcerative colitis is now in remission.” Whew, FINALLY!