Friday, July 22, 2016

Shame

This past May I attended our annual Great Strides event. It was the best event we have had to date, but something happened while I was there that I haven't really spoken about to anyone outside of my husband. It was one of those experiences that seems to shake you to the core and as much as you try to brush it off, you just can't fully let it go.

After the walk there was a carnival area set up for kids to play games while they waited for the lunch to arrive for all the walkers. I wandered over with Kaylee to one of the carnival games, the kind with the big wheel that spins until it lands on a prize which is one of my daughter's favorite games, and waited in line. While waiting a young girl around my own daughter's age, maybe 3 or 4, wearing a purple "fighter" shirt, which told me she too had Cystic Fibrosis, wandered through our line to get to another activity. She was young, distracted by all the excitement and was walking with her neck craned to the side watching kids across the grass cheering at their victory.

Suddenly, I was startled by a woman sharp voice screaming someone's name. The voice was urgent, panicked, and much louder than seemed necessary given the small area we were in. My eyes darted around looking for who could possibly be in danger. Everyone seemed safe and everyone my eyes met seemed to be having fun. I could not figure out what was causing this woman to panic. I looked back at the woman to see where her eyes were staring only to realize the panic, the shouting, the big scene was directed towards the little girl only now becoming aware of her mothers shrieks. As I looked back at the mother I saw her pointing a finger shouting, "SEE!?? LOOK!?! DO YOU SEE THAT LADY?? DO YOU SEE HER SHIRT?? GET AWAY FROM HER NOW!!!"

My heart caught in my throat as I realized the accusing finger was pointing at..me! She was screaming and shrieking and in a complete panic because of me?? I was the danger that this women felt was worth creating such a big scene that people stopped what they were doing to see what had happened? She quickly grabbed her daughter and loudly scolded her, "Do you see that lady's shirt? You need to stay away from people wearing those shirts! It isn't safe to be near people like her!"

I wasn't safe to be around? My eyes immediately went to my own daughter. How would she feel hearing someone scream that a young girl her own age would not be safe near her mother? Relief filled my entire body to realize my daughter was busy looking at a woman who was making balloon animals and had somehow missed the scene. Once I knew my daughter was unscathed from this woman's fit over my proximity to her daughter, I suddenly felt shame fill my body. I had no real reason to feel shame, I had done nothing wrong except to be born with a genetic defect (which meant my lungs may harbor bacteria that her daughter could catch and get sick from), the same as this woman's daughter and yet her screaming and deeming me unsafe around her child made me feel as if I were a monster.  I wasn't coughing and in fact, having seen her sweet girl I had turned slightly away from her as a way to subtly protect both of us. Somehow the interaction brought back all the feeling of shame I carried as a newly diagnosed teenager for having this broken body and being so very different from everyone else. I knew in my mind I should not take this women's overreaction and her accusing words personally and yet I have never had a complete stranger publicly point me out of a crowd and shout that I was unsafe around a child! Those are not words that are easily forgotten.

I also felt heartbroken for the small child who is still completely na├»ve to the idea of bacteria and cross infection. She was taught to be afraid of people just like her and in such a irrational way that I wondered how that effected the way she felt about her own disease. Rather than feel inspiration or understanding in people just like her, she was told she have a deep sense of fear and doom in our presence.

Finally, I felt sadness for the mother, so consumed by fear that she had to not only make her daughter feel bad, but to shame a person who knew exactly what her daughter dealt with every single day. As a mother, I understood the need to keep your child safe, but it was clear her fear of cross infection was beyond rational. We were outside, neither of us was coughing, neither of us was even talking, I was turned slightly away, and we were several feet from one another. I hate that any mother feels that much fear for their child's wellbeing, rational or not.

It was all a reminder how isolating this disease is and that even at an event meant to support, encourage, and build up those that suffer from CF we are still so very alone because we don't have the freedom to sit down with a child and commiserate with how boring treatments are, or hug a person with an accessed port and say, "I get it," or pat the back of someone doing the walk with an oxygen tank and tell them that they inspire us. That in a group of people that desperately care about the CF community we can be made to feel like a monster for simply existing.


Tuesday, July 5, 2016

Accountability

Most mornings I start my day at 5:20am. I crawl out of bed, pull on a bathing suit, puff my bronchodilator, grab a glass of milk and drive to the gym. I come home, showered, dressed, and having my workout done to a sleeping household. I quickly start my treatments so I don't waste any precious time before my daughter wakes up. She comes wandering into the living room sometime around 7-7:30am. By this point, I am sipping my morning coffee and somewhat impatiently waiting for her to wake up. My favorite part of this routine is that when Kaylee wakes up I am all hers. I can make her a healthy breakfast and sit and chat about our plans for the day. She gets a mommy that is totally present.

While I was feverish and sick I took a week off from the gym. My body was exhausted and I was able to sleep an extra 2 hours everyday which I felt I desperately needed. However, this meant she wandered into my room to wake me up when she was ready to start her day. I was groggy and tired and had no desire to get out of bed while she was bouncing with morning energy that only small children seem to possess. I threw fruit at her and snapped on the TV so I could start my 45 minutes of treatments. I was interrupted because she was still hungry, needed water, was bored watching TV, etc. She would try to tell me something, but I would be coughing so violently I couldn't respond which left her repeating herself over and over. In turn, it made me frustrated that she kept repeating things while I was coughing so hard I couldn't breathe and she got frustrated that I wasn't responding. My 45 minute treatments turned into an hour because of all the times I had to stop. By 8:30 I still wasn't showered, neither of us had breakfast and we were both a little grouchy. One morning after I strapped on my vest to start my treatments Kaylee asked me teary eyed, "Mommy, when are you going to do shaky (vest) in the middle of the night again? I like when you do that better."

Those two sentences were all the motivation and reassurance that I needed to know that my workout routine was something I needed to keep up for a very long time. It is better for my health and my lungs. It is better for me because I can do my treatments uninterrupted and in peace (the way I like it), and just in case that wasn't enough motivation, it made may daughter's morning experience so much better. Trying to fit in treatments and an exercise routine while parenting young children can be a challenge at best, but this time having a small child request that I workout again with tears in her eyes (although for selfish reasons on her part) was the very best motivation I could have asked for.

Thursday, June 30, 2016

Monday Surprises

Two weeks ago I had my CF clinic. I felt pretty confident going in because I had been swimming 5 days a week for 9 weeks at that point. I felt good, energetic, and was still compliant with my treatments. I was excited to tell my doctor I was swimming and because summer is usually my healthy season I was more than ready for a quick and easy clinic visit.

Soon after arrival the RT brought in the pft machine and I did my first blow. My eyes scanned the computer screen waiting for the results. The numbers that flashed on the screen shocked me. My numbers were lower than I had seen in a very long time. I sorta laughed telling my RT that I must have made a mistake because those numbers were ridiculously sad. However, there was a sinking feeling in my heart because I have never actually messed up a pft, after doing them for so many years it is a hard thing to do wrong. Just as I had secretly expected, but hoped to no end was not true, the next two blows were consistently low. I was left dumbfounded. Everyone seemed a little baffled that I was working out, felt great, and had no clue that my numbers had plummeted. My doctor ended up deciding to put me on oral because of a unusual (but not concerning) new bacteria in my culture. I agreed, happy to do something, anything to improve my horrible numbers, but was utterly confused as to how I could have an infection and feel... well perfectly normal.

Fast forward three few days, I was waiting for my meds after a problem with my first pharmacy, when I started to feel the telltale signs of an infection: fevers. The next several days my fevers flared, despite my lungs feeling okay. If it weren't for my low pfts I would have easily blamed the fevers on a different infection because my lungs actually felt fine, but I kept reassuring myself that my low numbers confirm that my lungs were the ones wreaking havoc on my body.

And then one week after my clinic appointment, an entire week after my low numbers I sat up in bed after a good night sleep to start my day only to feel the weight of my lungs, brimming with infection causing them to feel monstrously heavy. So heavy in fact, that I felt they may just fall from my body to the mattress below. My husband saw my grimace, heard the sound that puffed from my chest, and watched my body move in the way it does when your lungs are completely infested with millions of bacteria that are quickly taking over and said, "there it is...". He was right...there is was. The infection had finally reared it's ugly head a week after it tried to warn me.

Sunday, June 12, 2016

Four Years Old

Little Kaylee,
You are four years old today. My first real memories are from when I was four and for some reason I have always held being 4 near and dear to my heart. Because all of my four year old memories seem so carefree and so full of joy I feel so excited for you to embark on the next year. As excited as I am for you to experience being four years old I am finding it hard to sum up who you are as a three year old in one little blog post!

You have decided that you are wise beyond your years and that unfortunately my 32 years on this Earth did not provide me with the same depth of knowledge you have obtained in your short 4 years. You ask a lot of questions about the world, but you often disagree with my answers. After disagreeing with me you are sure to back up your facts that are pointless to dispute.

Kaylee: Are there blue carrots?
Me: No. There are yellow, red, orange, purple, and white carrots, but there are no blue carrots.
Kaylee: Yes, there are! When I was living in China, blue carrots were everyone's favorite. You just don't have them here.

You can be so delusional that you once argued that daddy didn't know his own mother's name. You claimed that "back when you were a teenager, your abula told you here real name and daddy was wrong.

Clearly, your confidence is not lacking.

You still love anything creative. You draw, color, create for large portions of the day. A few months ago you found my adult coloring book and now it is officially yours. Another creative outlet you seem to enjoy is helping me cook or bake. Whenever I enter the kitchen you are quick to grab your little chair and pull up next to me at the counter. For the first time, your assistance in the kitchen is actually helpful. For breakfast, you know how to get the eggs out of the fridge, crack them, whisk them and then put the bread in the toaster all by yourself. Sure, sometimes our eggs have a little boost of calcium and some crunch for texture from those eggshells that found their way into the pan. Baking still makes a giant mess as your aim with flour and sugar seems to be a little off. You do know how to level off the measuring cups which always makes me smile! You are becoming a Foodie like your father and like to talk about "textures" (which you use to mean flavors) whenever we make something new. "This has a lemony texture and is a little bit sweet"

You have decided, once again, that sleep is pointless. You often assure me as I tuck you into bed that you will not sleep under any circumstances. Many mornings you insist that you were laying in bed the entire night wide awake. The few times I try to tell you I checked on you and you looked as if you were sleeping you assure me that you were in fact not sleeping, but rather just staying very still. Although you apparently haven't slept in months you do find your way to our bed in the mornings. Most weekday mornings I am at the gym, but I come home to find you snuggled up to your daddy sound asleep... err laying very still. There is nothing more precious than seeing the two people I love most in this world snuggled together.

As you get older I find it harder and harder to sum up your likes and dislikes, your personality, and your current stages in one little post. You are affectionate and love to snuggle, you are in tune to other's emotions especially mine. As you get older our bond changes, but it seems to grow stronger with time. You talk all day long and surprise me with the vocabulary you pick up. You have come out of your shell so much the past few months. You are no longer shy or unsure around people you don't know. You are gaining confidence in your Spanish as well.  You are stubborn and independent. You are beautiful inside and out.

I love you in a way that I could never put into words! Happy birthday,
Mom

Sunday, June 5, 2016

7 Weeks

7 weeks ago my head was foggy, my eyes blurred as my alarm rang out in the darkness that accompanied 5:20 in the morning. 7 weeks ago dragging my sleepy body out of bed, in what felt like the middle of the night, felt like torture at best. 7 weeks ago I left my house into the dark and frigid night air. 7 weeks ago I pulled over to admire the moon laying full and heavy in the sky. 7 weeks ago my teeth chattered as I walked the long outdoor hallway to the pool all while trying to convince myself not to just turn around and go home. 7 weeks ago I struggled while I swam my first few laps since last fall, huffing and puffing and sputtering. 7 weeks ago I lived for the weekend when the gym wouldn’t see my face.

A lot can change in 7 weeks.
 
7 weeks later, my body is already waking before my alarm rings out. 7 weeks later by 5:20 the sun has already made an appearance and the birds are cheerfully singing. 7 weeks later the walk to the pool, still cold, no longer makes me shiver right to the bone. 7 weeks later, 40 laps comes relatively easy, my arms and legs accustomed to the motions required for front crawl and breast stroke. 7 weeks later my lungs have adjusted and my oxygen levels stay 90 or above (most of the time). 7 weeks later, my arms show clear signs of definition and toning. 7 weeks later my hair is dry as straw despite wearing a swim camp. 7 weeks later I weigh 3lbs more than when I started, which I am convinced is muscle mass. 7 weeks later my body craves my morning swim. 7 weeks later I dread the weekend when I don’t swim because my cough will be more prevalent all day long. 7 weeks later I am proud of myself for fitting this missing puzzle piece back into my self care plan.

Friday, April 29, 2016

Toddler Talk Part 9

Kaylee loves rhyming. Sometimes she rhymes real words and other times made up words or a combination of the two. In the morning she sniffed my coffee and quickly pulled away saying, "Yuck-o fuck-o!" (it took everything for my husband not to laugh).

I was telling Kaylee how much I loved that her eyes get lighter blue as they approach her pupils. She gazed into my eyes and said, "I love how the white of your eyes have red cracks in them"

Kaylee and I were getting the mail when we noticed a neighbor left their keys in the keyhole of their box. So Kaylee and I walked over to their house to return the keys. As we were leaving Kaylee turned to me and said, "You are a wonderful mommy to those people."

A few days ago I was in a really bad mood. I wasn't even sure why I was so grumpy, but I could not shake my foul mood. I told Kaylee that I was sorry I was so grumpy that evening, but that I was sure I would wake up in the morning in a much better mood. She reassured me by saying, "Even when you are grumpy, you are still the best mom ever."

I have at least a dozen nick names I give to Kaylee, often they are names I just make up on a whim. The other day my husband and I were snuggling on the couch and Kaylee started running at us full blast while shouting, "Here comes love muffin!"

Saturday, April 9, 2016

Three and three quarters

I am a little late on this update, but you have hit two huge milestones (?) since you were three and a half and thought it would be appropriate to have it in writing somewhere.

You officially have your first real crush. You have been going to story time at our local library for years, but about a year ago the story time teacher left and a new young male, Mr. Nate, took her place. For about a year you would participate in class, but whenever Mr Nate came your way you would clam up and refuse to look at him directly. This was especially true during arts and crafts immediately following story time. You would flat out ignore his presence if he came over to look at your art or try to make any conversation with you. You still wanted to attend every week so I brushed off your behavior as being shy.

The past few months however, you seem to have grown more than a little fond of Mr. Nate. When we visit the library for any reason you demand on knowing his where abouts. A few weeks ago we went to "art hour" at the library where Mr. Nate often helps out and you spent most of the hour keeping tabs on your beloved, "Mr. Nate is going in the back room, Mr. Nate is talking to that boy, WHERE is Mr Nate??" This was a turning point and after this day you started actually acknowledging Mr Nate to his face. Eventually you built up to initiating conversation and will even give him a high five.

You recently decided you wanted mommy and daddy to go out of town so Mr. Nate could babysit and you were confident that after spending the day with you he would love you too much and would have to move in. The love affair has grown and the other night when I went to kiss you goodnight you were pretending to sleep. With your eyes sealed shut you whispered, "Shh, I am with Mr Nate." You may be delusional when it comes to love, but at least you think of yourself as a great catch!

The other huge milestone was one mommy wasn't totally ready for. Last week you went to your parent and child Spanish class (after taking several months off) and during class you were sitting still, watching the teacher, answering all her questions in clear Spanish. It was clear all the content she was covering you already understood and that colors, numbers, and the alphabet in Spanish was just too easy for you. It wasn't just that the content was easy, but you seemed like a real student rather than a little kid in a toddler class. You were just so much older than you were just a few months ago. At the end of class your teacher said she thought you were ready to join the 4-6 year old class. The big difference between the 4-6 class was that you would be attending alone, as in without me! I agreed with the teacher and said it was up to you. I explained that you would be in class with other kids and that I would be waiting outside for you. Your teacher even said you could try the 4-6 year old class that day (as in 15 minutes from when she told me about the level change). You were so excited you could hardly stand it and eagerly agreed.

I was excited and proud and felt like I wanted to cry all at once. This was your first time at "school" and I was not completely mentally prepared (you are starting preschool in the fall) for this major step. Sure, we had been apart from one another. You have had many sleepovers with your grandparents and my last hospital stay was 8 days. This hour and a half was nothing in comparison. However, it still felt monumental in your growth and development. You were so ready to take this next step in a school setting and I was overwhelmingly proud of your confidence in yourself. I was also feeling a slight loss of the baby that used to need me so much while navigating through this world. Needless to say, you absolutely loved class and you ask daily if it is the day you go to Spanish class.