Wednesday, July 19, 2017

Dog Days Of Summer

Summer is the absolute best time of the year. Long days, a garden bursting with life, and hot afternoons spent splashing in water is pretty much my idea of happiness! Last summer I was tethered to IVs, a week long case of the hives, and then had a minor non-CF related surgery and I felt like my summer slipped by before I could fully enjoy it! I feel hesitant to even write this next line lest I jinx myself, but this summer I have felt really well and I am taking full advantage of enjoying every minute! In all the excitement of summer I wanted to update a few milestones my daughter hit this summer.

My parents live two towns over and we spend most Sunday afternoons in their pool. Kaylee, always a cautious child, has had no desire to swim without her puddle jumper and insists that she will never go under water- ever! She may be telling the truth about never going under water. Back in my high school days I was a swim teacher and I have reserved a few afternoons these past weeks teaching Kaylee to swim, but she has always insisted that I never ever let go of her. I knew she would eventually find her courage and always respected her desire to feel safe in my arms.

Last Sunday, out of the blue she insisted she was ready to try swimming solo and told me she would push off the step and swim to me. When this kid puts her mind to something she really gets determined. Needless to say, she was successful! Even though she didn't get very far distance wise, she was able to swim independently for a short distance. Of course, I am proud of her for learning to swim, but I am more proud of her confidence in herself and overcoming her fear. After she was successful the first time she wanted to keep practicing over and over. She must have pushed off that step and swam to my arms four dozen times. It was very reminiscent of when Kaylee learned to walk. One day she held my hands and refused to do anything, but practice walking until she mastered it. She can be one determines little kid.

The other milestone she hit was a little less huge as far as milestones, but it is a quintessential childhood summer right of passage. Kaylee officially learned to skip rocks on water. She has been trying all summer, but the rocks always plunk down heavily straight to the bottom of the lake/river. Yesterday we spend the entire day at one of our favorite lakes and she finally mastered the technique to make rocks skip across the water.

We only have 6 weeks left until Kaylee officially starts school and I am trying to squeeze in as much fun and as much quality time with Kaylee as we can! I hope you are all enjoying a summer of good health and fun memories in the sun as well!

Wednesday, July 12, 2017

Motherhood, Yoga, and Transplant

When I stared my blog six years ago I was hoping to meet and connect with other women who wanted to experience parenthood. At the time I didn't know any other CF women that had children and was hoping to make a community for women who wanted to become mothers (whether through conceiving, adopting, surrogacy, or even step parenting). As the years went by I met so many amazingly strong cysters who found their way to motherhood and each story is unique and beautiful. The CF community is such an inspiring and absolutely heartbreaking community to be a part of.

Once in a while someone's story touches you in such a way that it brings tears to your eyes and fills you with a type of understanding that can't be found outside of the CF community. I recently learned the story of Selwa Mitchell through her video made by fotolanthropy. Her story is raw and real and highlights the horrors of CF while also serving as a beacon of hope for those who are in the depths of end stage lung disease. Selwa is a mother of two who has experienced CF at it's harshest, but found refuge in yoga and was eventually given a second chance through a lung transplant.

Please take a moment and check out this beautiful video (you may need a tissue...)

Sunday, July 9, 2017

Hello Early Morning

Since I know you have been here before:

It is the first morning of getting back into my gym routine.
Alarm rings.
Is it the middle of the night? No? Shit, it is my gym day.
Push snooze
Alarm rings
Push snooze
Alarm rings
Turn alarm off and sit up. Debate laying back down to sleep just a little longer. Fight the urge and get up. Get bathing suit on and drink a glass of milk.
Think of a million reasons why the gym can wait until tomorrow.
Fight those negative thoughts, grab gym bag and walk out the door.
Realize it feels chilly and debate turning back and going inside. Who wants to swim when it is chilly?
Drive to gym. Turn off car and procrastinate a few seconds and worry you may be an utter failure at the gym and humiliate yourself by being incredibly out of shape.
Ignore the negativity and go inside.
See the usual girl at the front desk and feel a sense of relief because the familiarity of the old routine is setting in.
Go to the locker room to find the smile of a woman that always swims before you. "The water is great today."
Stand at the edge of the pool, jump in and start swimming. It feels familiar and, dare I say, nice?
Do 10 laps and feel an unfamiliar ache in your triceps and realize your still 60 laps from doing your usual workout. Have a quick moment of panic.
Realize your arms are tired before your lungs and feel pure joy! Get a second wind and swim on.
Realize you won't get your full 70 laps in and allow yourself to settle for 50.
Hope in the shower and feel like a bad ass for going to the gym and not dying.
Spend the rest of the day feeling proud and exhausted.

Rinse and repeat everyday... for the rest of your life.

Tuesday, July 4, 2017

Returning To The Pool

The pool is open! The pool is open!! The pool is open!!!

Can you tell I am excited. If you remember in April (holy crap, it was that long ago?) my gym closed their pool due to plumbing issues and then decided since the pool was out of commission they would refinish it (which it desperately needed).

Well, after seriously way too long they are finally open again tomorrow morning! So guess where I will be? Trying to see if I can pull myself out of bed at 5:20 again (eek) an attempt to swim again. I am actually super excited to be back at the pool every morning. I tried to still work out without the pool, but nothing gives my lungs a work out like swimming and it was really hard to stay consistent with exercise that I just didn't like.

Now I need to dust off my fitbit flex 2 (which just depressed me when the pool was closed) and see what these old lungs can do...

Sunday, July 2, 2017

Life At The Moment

I opened my fridge and realized this shelf perfectly capture my life in summertime. It also represents the my absolute favorite and least favorite aspects of summer.

A fridge full of meds, produce from the garden (plums, blackberries, cucumbers, tomatoes and green beans), and sausages for barbecuing at the beach.

Friday, June 30, 2017

I coughed up a rock

Sometimes when you have CF weird shit happens that nobody else would understand!

On Monday, my chest felt tight and I kept complaining to my husband that everything in my chest felt really irritated. I thought it felt like allergies, but given the time of year it seemed doubtful. As the day went on my cough become constant, but it was a deep irritated cough which is not at all my typical CF cough and I started to get worried.

Wednesday, we were driving to the river to spend the afternoon on the beach and thank goodness my husband was driving because my cough was so violent, I had to brace myself against the dashboard and each cough brought a set of stars that danced around my vision. Anyone else get that during a bad coughing fit? Of course, Kaylee is so used to my cough she was chattering away as if nothing was happening!

Wednesday night just as I was drifting off to sleep, I was awoken by a cough that felt as if it were coming from the depth of my core. That sounds dramatic, but seriously, I think it came from a part of my lungs that I never knew existed or at least not in the past 15 years. And the next thing I knew I was coughing so hard, I couldn't breath and started choking, and coughing and hoping I wouldn't pass out. And then, my lungs expelled a small rock!

Okay, of course it wasn't a real rock, but holy crap if I didn't know better I would swear it truly was a rock. And to make this gross story even more disgusting, I will point out the obvious! I expelled a plug that was so old and so dry that I can't help, but wonder if it was created before Kaylee. Because I have never in my life had a plug like that.

The next day I felt 100 x better and my irritated lungs calmed down and my nagging cough disappeared. And when I told my family in the morning Kaylee cheered before asking, "Did you take a picture of it?" This kid knows me too well, because of course I took a picture of it. It is not everyday you cough out a plug that was probably around before you met your husband. That little guy has been with me so long that I had to keep a picture keepsake.

Like I said, sometimes shit happens to people with CF that nobody else could possibly understand!

Saturday, June 17, 2017

Why Don't I have CF

Kaylee: "How did you get CF mom?"
Me: Very simple explanation of genetics.
Kaylee: "So why didn't I get CF?"
Me: "Well, mommy gave you one CF gene, but daddy did not give you the gene. You need 2 genes to have CF.
Kaylee: clearly upset, "WHY didn't daddy give me the gene? I want CF just like YOU!"

*a few seconds later*

Kaylee: "Will my kids have CF? Because if they do I will be really jealous!"

Can my daughter always be this naïve and innocent when it comes to my disease? And can I always remain perfect in her eyes? No? I guess I should enjoy it while it lasts.