Run, Sickboy, Run - Cystic Fibrosis and Exercise

Friday, April 11, 2014

Thankful Thursday: Good Friends & Man Church

Saturday, April 5, 2014

Running Rehab: An Unscientific Experiment

Guest post by Kay

After being diagnosed with CF at age 21...I had spent the better part of my life telling myself that I was an exception to the rule, that my case of CF was mild and falsely thought there were probably no others with the disease that were doing so well. Sure, I had my moments during exacerbations when I worried and wondered if I’d get to see my daughter grow up...but for the most part I did as I pleased and was hospitalized on average once a year. I’d been a runner since h.s. track and when my daughter was young I had a sign taped to my alarm clock that read “RUN OR DIE” so I’d get up and run before her Dad went to work. But over the years my FEV1 had inched down slowly and I’d left the world of the moderately affected and dipped under the 50% FEV1 level and into the world of the severely affected. Life got harder. It became difficult to jog. I’d get so winded after just a quarter mile jog that I took to doing a jog/ walk type of workout and even that was so hard I began to skip more and more days. My daughter had asked me to run a 5k at a 1/2 marathon she and her dad were doing and when I told her I couldn’t even run a mile she gave me a bit of a hard time saying “anyone can run a mile...you’re just using CF as an excuse”. Ugg. So a week later when my nurse coordinator forwarded a Jerry Cahill video where he was running with oxygen...I was all over it!

I contacted Jerry through Facebook and he told me about using a wrist oximeter and putting the “tank” into a camelback backpack for jogging. I asked my Doctor who always had a witty sense of humor if I used oxygen for exercise if I would become oxygen dependent...his reply “we are all oxygen dependent” haha. But “no, it won’t mean you’ll need to supplement O2 for everyday things”. It took a few weeks and a little experimenting, first with liquid oxygen (not good it can’t take the jarring of the jogging and all the O2 would expel after just a short distance). I exchanged 3 back packs until I got one that had more padding and was comfortable to carry the M6 tank. And then I got in a routine...quickly running 3 and 4 miles at a time. I decided to train for the first annual “Run to Breathe” that Jerry was organizing for BEF in Central Park and invited my daughter to join me. Jerry provided encouragement to the jogging posts I would make on Facebook and we joked about being the last ones on the 10k course. Raceday came and the adrenaline and crowds had me jogging at a pace much faster than home. Central Park is relatively flat in comparison to the Fox River Valley where I trained. I was pleased with the time and my daughter and I had a fabulous 4 day trip to NYC.

Back home from the trip and I wasn’t feeling particularly well. When I went to the clinic I had the worst PFT results of my 49 year old life with Cystic Fibrosis. FEV1 was 36%. It scared me. Badly. I had been getting to know other CFers through social media and a few were on the transplant list. One was at 30% FEV1 so a personal score of 36% was alarming. I did not understand it. I’d been running about 20 miles a week and instead of getting better I was getting worse. I’d lost a lot of weight which had never been a problem as I am pancreas sufficient. But with all that running I could not eat enough. I got a tune up and recovered to 42% where I stayed for a couple years.

Chicago winters can be rough and long. This one has been the worst in my memory with temps dipping down to -18 degrees F at times. I was sick in October, choosing to do a 21 day tune up, and then mid December a bug that was going around at work settled in which took me six weeks to get over with Cipro and Prednesone. January rolled around and I still wasn’t myself and I looked at the option of IVs again and turned around and literally ran in the other direction. I decided to hire a running coach and see if having someone with expertise in building a program could help motivate me. I’d been reading the journey about those pre and post transplant go through with a mandatory “rehab” period both before and after. So Coach GP and I embarked upon a Running Rehab program for these old CF lungs of mine. He said “I’m going to be in your pocket”. By that he meant he would hold me accountable for the workouts and text me and ask me what I’d done each day. Coach is in the NYC area and travels a lot, so I’ve never met him...but working virtually worked very well. We spent a couple weeks seeing what I could do and just getting used to the idea. It was all on the treadmill as cold air is not my friend. My knees hurt, I was tired...but determined. Then he gave me regimented workouts that included interval training and progressive runs. I chose to just “do as I was told”. It made things simpler to just be assigned a workout and do it and not have to make a daily decision on what to do and how far to go. Wimping out was not an option. I let him be the boss of my schedule. The schedule was tough as I work two jobs but I fit it in most days, sometimes getting to the gym at 8pm, sometimes awakening at 5am to fit it in. A month went by and my knees no longer hurt. One day I started running without hooking up to the O2 tank (just forgetfulness) and thought, wow, my O2 sat seems ok...lets see how far I can go without it. I made it a full mile before the O2 sats dropped below 90%. Psyched!!! I hooked up for the rest of the workout and considered that bit of un-supplemented running true progress! Days that followed when I tried it again did not fair so well only making it to 1/4 mile before I needed O2. Every day is different, I learned. Storm and weather shifts affected my lungs, stress at work affected my lungs, but I started to see that pushing myself to run on the worst of those days ALWAYS had me feeling better after the run.

Then, the day came around I’d been training for. The clinic appointment. The day before I’d come home from work to do treatments and had a terrible coughing fit that lasted 30 minutes. It wore me out and my lungs reacted by tightening up. I thought ugg, I’m going to do terrible on my PFTs tomorrow. The next day arrived and I jumped a train and headed down to the city for my appointment. My lungs felt really tight and my expectation was that I may need prednisone to open them up again and if my FEV1 was low...I might even have to do IVs. Ugg. But, my first blow into the tube....showed 52%. Wow. Even though I wasn’t feeling particularly well, my airways were far more functional than before the running rehab. I’m optimistic my score would have been higher if not for those storms rolling in and putting me in a funk.

So, “what have you learned...from the past month Miss K?”, Coach asked. “I have good days and bad days” I said. He said “you respond well to multi tier training on many levels but it has to be very carefully measured between both not overdoing it and undergoing it”. It had become apparent that just running long, slow runs and adding more and more miles as I had done previously was not the right approach. My current program has me running a mix of intervals and progressive runs Tu, Th, Sat. On MWF & Su I am doing weights and some cross training. I plan on working out 7 days a week, knowing I may miss one as I listen to my body and may need to take a day of rest when muscles and resolve are fatigued. Running more and running longer didn’t seem to pay off the way varied running has and please note: it’s also way less boring :-)

I’d recommend if you’re having trouble kick starting yourself to find a coach to work with. Athlete training programs used for healthy folks can also do great things for those of us with CF. A coach that can understand that there are some limitations but also not be afraid to push may be just the thing to get you started in the right direction. Exercise IS medicine!

Wednesday, April 2, 2014

Workout Wednesday: Today's Workout

We'll start posting our Wednesday workout every week, so please let me know if you have any questions. If it's something you want to try at home, some equipment may be needed, but it can be done at a pretty minimal cost. Also, much of it can be done with body weight.

Here is our workout for today:

STATION 1 (**Each exercise is done for 1 minute**)
Leg Lifts
Hang SquatsSquat Jumps
Leg Lifts
Dead Lift
Burpee

STATION 2
Hover
Kettlebell CurlClean and PressHoverSquat Upright Row
Swings
STATION 3
Plank
Deep Lunge Left
Deep Lunge Right
Plank
Fast Princess Lunge Left
Fast Princess Lunge Right
STATION 4
V-ups
Dips
High/Low Up Downs
V-ups
Kettlebell Tricep Extension
Shoulder Press
STATION 5
Leg raises
Rows
Toe Taps
Leg raises
Pushups
Wallsit Shoulder Press
DONE

Tuesday, April 1, 2014

The Gift We Were Given

Yesterday, we learned that our final two babies that we had recently transferred into Mandi had not implanted and therefore, we are not pregnant. In the last year and a half, we have lost 6 babies through the IVF process and each one was tough to handle. There is definitely something though that feels different when its your last two. It feels much more final. The pain is a bit deeper. The stress is a bit more. The questions are many. The solutions seem far too few.

While Mandi was getting the blood test yesterday, I took Mckenna to her dance class at the local rec center. We had a great time dancing and playing with the other children. It was at the end of that class that I received the one-worded text that made my stomach drop: Negative.

Ugh.

Throughout the process, we knew this could happen. We knew that we could spend hundred of hours, thousands of dollars and more emotional capital then we count and end up with, well, nothing. Nothing but bruises from all of the shots. Heartache. Questions. And a feeling of "where do we go from here?". Even though we were prepared, you never quite know how you'll react when you hear the news. Fortunately for me, I received the text message with a little gift by my side saying, "Daddy, who's that?"

It still hurt, but I was IMMEDIATELY reminded that our one success absolutely dominates our 3 failed cycles in every way imaginable. I would welcome the emotional and physical pain of IVF every day for the rest of my life if it meant that I had Mckenna as my daughter. What we have as a result of IVF and God's provision trumps, in a big way, the loss that we've experienced as a result of IVF.

As I walked Mckenna out of her class, I couldn't help but experience the joy that I experience every day by being able to be her daddy. We have been blessed beyond measure and are thankful every single day for our family. Is it a family that we would love to grow? Yup. Does that growth need to take place through IVF? Not necessarily. Does God already have our story written? He sure does. Am I thankful that He placed Mandi and Mckenna as two central characters in my story? More thankful than I would ever be able to put into words.

And finally, as we were departing the building, I shared the news with a girlfriend of Mandi's who has been very aware of our journey this far. She was eager to hear the results and was also saddened by the news. When I told her the results were negative, her response was about just as perfect as could be...

(While looking down at Mckenna) "Makes you realize even more how much of a miracle this little one is."

Yes it does. Thank you Jesus.

Monday, March 31, 2014

I'm the Child. He is the Father.

Having a child has taught me a lot about God, and my walk with Him. I see through my relationship with Mckenna, a lot of ways God must see me, as His child. He loves me unconditionally and cherishes me more than I can fathom. I love much in much the same way, and always have her very best interest at heart, even when it makes no sense in her young brain. The other day, she really wanted candy. But I didn't want her to have any candy. She had a major meltdown. And I get it. Most days she gets some kind of sweet treat, but there are conditions (she often doesn't know them). I watch to make sure she has eaten enough real food at meals. I change my answer if I know for dinner we are having something like fast food. I see the big picture of her nutrition for the day, and I give her what she can have based on that. In her knowledge of the world, she only sees a fraction of what goes into my decision making. So sometimes she just doesn't understand why she can't always have candy. It's confusing that my answer isn't always the same. But one day, she will get it.

Today we found out that our final IVF cycle, with our remaining two embryos failed. We are not pregnant. This is obviously devastating. I cried, a lot. I felt angry. I feel confused. I honestly want to throw a toddler-sized tantrum. You know the kind where as an adult you kind of chuckle at how ridiculous the kid looks? I really don't understand why or how we went through 6 great embryos over the last year and a half and are still not pregnant. It doesn't all come together in a pretty little picture for me. It's not a neat and tidy clear-cut plan at this point from what I understand and see. I'm Mckenna wanting the "candy". I want the "candy" I got to have our first IVF cycle, and I don't get why I can't have that "candy" again, and I don't get why the answer is different this time.

But here's what I do know. I know that this is one of those circumstances where my relationship with Mckenna is much like God's relationship with me. God knows the bigger picture. He's basing His answer and His plan on much more than I know right now. I'll get it one day. His plan ties together nicely. It's neat and clear-cut from where He sits. I am just not abreast to all that is factoring into His plan. My "candy" tomorrow may not be the same "candy" I got before.

So in my devastation and heartbreak I'll rest in that. As I mentioned in a previous post in the last couple weeks, we have a motto around the Sharpe household: God is always good. God is good when things are awesome. And God is good when things suck majorly. But His goodness does not change with my circumstances. We know He is good and that He has a plan. Please be praying for peace and clarity as we move forward.

I will leave you with this..This song always brings my soul so much comfort. My two favorite parts are these:

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now
and

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

….We are in deep waters now, folks. It's scary, but are trusting Him.

Wednesday, March 26, 2014

Workout Wednesday

You peeps seemed to enjoy Mandi posting our workout last Wednesday, so we figured it could be something we do going forward. If it's something you want to try at home, some equipment may be needed, but it can be done at a pretty minimal cost. Also, much of it can be done with body weight.

Here is our workout for today:

WARMUP (*Each exercise is done for 45 seconds*)
Fast squats
Basement squats
Jump squats
Lunge forward right
Lunge forward left

STATION 1 (**Each exercise is done for 1 minute**)
Burpee
Squat front raise
Fast princess lunge right
Fast princess lunge left
Squat jump
Hover

STATION 2
Hang squat
Dead lift
High/Low up down
Princess lunge right
Princess lunge left
Fast squat

STATION 3
Sprawl
Triceps pushup
Swings
Plank to push up
Dips
Run 200 meters

STATION 4
Plank to pushup
Clean and Press
Squat upright row
Spider pushup
Mountain climbers
Hover

STATION 5
Squat press
Shoulder press
Squat jumps
Wall sit left leg only
Wall sit right leg only
Wall sit shoulder press

Active recovery
Hold a plank position for 15 seconds
5 push-ups
Hold a plank position for 15 seconds
4 push-ups
Hold a plank position for 15 seconds
3 push-ups
Hold a plank position for 15 seconds
2 push-ups
Hold a plank position for 15 seconds
1 push-up

Fast squats for 30 seconds
Basement squats for 30 seconds
Squat jumps for 30 seconds
Repeat sequence 4 times

DONE

Tuesday, March 25, 2014

I've Got A Bug In My Ear

No, seriously, like an actual bug in my actual ear. No, not right now, but last week yet it feels as if it was just yesterday. I'll write this in a way that you can hopefully get inside my thought process that night. Here's the story...

It was around 1:10am and I was sleeping like a baby. At 1:11am, a massive thunder storm rolled into our bedroom because all I could hear in my left ear was the rumbling of what seemed to be thunder booming in my ear. But wait, that couldn't be right. If it were thunder, I would hear it in both of my ears. So I went on to the second most logical reason for the thunderstorm playing in my ear - water. I dug around in my ear to see if I could feel any kind of liquid in there. I shook my head like a mad man seeing if I could get the water in my ear to drain. And, out of pure desperation it seems, I actually turned my cellphone light on to see if we had a leak in our roof above me as I could think of no other way that water got inside of my ear. After shaking, checking, prodding and poking - no water.

What could it be then I thought? Oh I know, somehow my eardrum was randomly punctured and now fluid was leaking from my ear. Did I turn on my pillow to fast causing a suction so powerful that it blew my eardrum? Did Mandi yell so loudly during her dream that my delicate eardrum was shattered? And just like that it was gone....

...or so I thought. Just when I thought my eardrum had magically healed itself, I heard the thunder again. Only this time, it definitely sounded more like scratching than thunder.

Oh my. It's a bug.

This is when the pain started. Not only am I now convinced there is a bug in my ear, but I'm pretty sure its trying to chew its way through my ear drum. Maybe this is where the fluid is coming from? Okay Ronnie, enough with the fluid, just worry about the bug now. Ouch, the pain in getting worse. I cupped my hand over my ear and had it act like a plunger trying to unclog a toilet. In between each bite, I thought maybe I could somehow suck this bug out of my ear by some type of reverse vacuum pressure that I was creating. Strike one. I know, I'll get a bobby pin and scrape this little bugger out. I was deep inside my ear. He was angry. I kept scraping. He kept moving. I scraped harder. He stopped moving. Oh, great, now my ear is bleeding. I sure hope this is because I split him in half and not because he finally burrowed his way into my brain. Maybe I should get Mandi. It'd be much better to wake her up, explain to her that a bug is currently eating my brain and that I'm going to E.R. than it would be for her to find me facedown on the bathroom floor due to a bug eating my brain. Before I get Mandi though, I should probably Google this.

Shoot, my ear is still bleeding and this guy is moving all around again. Okay, so I didn't kill him, but I definitely cut myself. At least he's not in my brain though, that's a relief. I stick some q-tips in my ear to soak up and clean off some of the blood before heading to the computer.

Google says that my best bet is to A) Fill my ear with olive oil to kill the bug B) Stick a syringe full of water in my ear and blast it in my ear canal as to hopefully wash the bug out and C) Make sure all of the bug is intact and no part is left in your ear.

Seems easy enough.

I grabbed a syringe, filled it up with water and gave my ear a fireman hose blast (I skipped the olive oil). Nothing. Fill up the syringe again. Push....nothing. Okay, if this doesn't work, I may have to call in a professional. Third time is a charm right? Blast.

And that's when it happened. First, he hit my shoulder and then down into the sink he fell. And there he was, looking as relieved as I was to be rid of each other....

An earwig.

Of course.

Monday, March 24, 2014

Faith Like a Child

I don't really have much to share today other than a little observation from the weekend. We've all heard the phrase, "faith like a child"…and it's so humbling (and inspirational) to watch.

Yesterday, Mckenna swam for the first time this season (it was finally warm enough to actually get all the way in my parents' pool). It was amazing. She was nervous, at first, to jump in off the side, something she loved to do last summer. But after a little time, and Ronnie and Papi (my dad) telling her it was ok, she jumped. And then there was no stopping her. She wanted to have tea parties underwater, touch her feet to the bottom, swim to the edge and pull herself up, swim across the pool underwater holding onto daddy and Papi. It was amazing. And the thing I kept thinking was, "she's trying all these things simply because she trusts her daddy." Common sense (and human instinct) tells us not to hold our breath under water for long periods of time, but daddy said it was safe, so she did it…over and over again.

It was a humbling reminder of all the fun and exciting things I could be doing if I just jumped in and trusted my (heavenly) father. What am I missing out on being too scared to make the first jump? How's that for a short and deep blog for a Monday?!

I'll leave you with this:

Thursday, March 20, 2014

Thankful Thursday: God's Provision & "Our Thing"

I'm thankful for hard boiled eggs. They taste delicious and are healthy…but above all, I just love the way Mckenna says, "hard boiled eggs". She has about 14 extra syllables in the words and it makes me smile every time we asks for them.

I'm thankful for God's provision and goodness. I am constantly surprised by what God provides for our family. I'm not sure why, as eventually you'd think I'd realize He will always show up in a way that is best for us, yet, I am constantly in awe. Sure we don't get everything we want, but we get all that we need and all that is right for us. Even through disappointments, God provides in ways bigger and better than my original plan. We have a little mantra in this house, "God is always good," that I try to drill into Mckenna's head. When asked, "even when things aren't perfect, what do we always know?" Mckenna will respond, "God is always good." As of now, she's just being a parrot, echoing what she's been told, but if she can one day understand and truly believe in God's goodness, even in tough times or sad circumstances, life will look a lot different for her. Life will always feel more joyful and filled with so much more peace. What a joy it is to serve a God who is always good, always shows up, and always has a plan.

Ronnie's List:

I'm thankful for "our thing". On most Wednesdays, Mandi heads down to Tucson for a staff meeting which means it's just Mckenna and I from about 6am to 4pm or so. The ten straight hours is the most time we spend one-on-one with each other with no breaks, and I love it! Most Wednesdays we have the same routine which has become "our thing" - Breakfast, Treatment, Hang out (park, movie, bubbles, etc), Gym, Lunch, Nap, Mall, Costco, Home. She always gets special little candies at the mall, tours the puppy store and gets to play with 67 other children. We also get fun snacks at Costco and try to spot new items in the store. Wednesday is definitely one of my favorite days...along with the other 6.

I'm thankful for hard-boiled eggs. For the last week or so, we've all been really into hard-boiled eggs. We have eggs every morning, but usually would just do egg whites or a fried over easy/medium/hard. Mckenna seems to really dig them hard-boiled, and they've always been a favorite of mine, so I'm thinking we'll stick with them for a while.

I'm thankful for March Madness. There is nothing like the NCAA basketball tournament, and I can't wait to have it playing 24 hours a day. We all fill out a bracket - for nothing but bragging rights - and get sucked into many games throughout the day. By we, I of course am just talking about me...although Mandi did win the bracket competition last year.

What about you? What are you thankful for today?

Wednesday, March 19, 2014

Workout Wednesday: Today's Workout

We talk all the time on the blog about how much we love our Intensity class at the gym. It's 45 minutes worth of butt kicking. I thought today's workout was a good one, and one that can be done at home if you have some kettlebells, or you could do the exercises with just your body weight, dumbbells or resistance tubing.

Warm Up

15 burpees

50m sprint

50m frog jumps

200m run

Stations - The starred exercise is done between each exercise. Each main exercise is done for 1 min. Each starred exercise is done for 30 seconds. So it looks like main exercise for 1 minute, starred exercise for 30 seconds, main exercise 1 minute, starred exercise 30 seconds, etc...

Station 1

**Straddle jumps

Kettlebell Hang squats

Kettlebell Deadlifts

Kettlebell pushups

Kettlebell Sumo squats

Station 2

**Burpees

Kettlebell Swings

Kettlebell Clean and press

Kettlebell Squat upright row

Kettlebell Squat press

"Half time"

6 min of squats (no breaks between sets) - alternating:

30 sec fast squats

30 sec bottom half squats

Station 3

**Kettlebell Jack press

Jump squats

Alternating lunge back Kettlebell press

Fast squats

Squat step outs - step out with left leg and squat, step in with left leg and squat, step out with right leg and squat, step in with right leg and squat. Repeat.

Station 4

**Kettlebell Shoulder press

Jack pushups

Plank to push ups

Push up alternating leg raise (body in push up position, lift one leg, then the other. Repeat)
Bicycle crunches

Tuesday, March 18, 2014

Julie Montes - You Will Be Missed, Friend.

I don't do many memory posts (I believe this is my third one ever) on this blog, but after the recent
death of a cyster that I spent plenty of time with roaming the halls of University Medical Center, I felt compelled to. And it's funny, I don't feel compelled to because I think it will make any difference in her now awesome life, I'm not so sure she'll read it, but I'm doing it for me. Maybe that's why we all do it though? I don't know. I wasn't planning on writing about her or her death until about 3 minutes ago when this overwhelming feeling came over me that I needed to say something. I needed to write down what I remembered of her and needed to put to paper the different things about her that are currently making me smile.

Julie Montes was one of the softest, most gentle-hearted and loving people that I'm come to know within the walls of the hospital I've been going to my whole life. We saw each other very infrequently outside of those walls, but within them, we always connected. Conversation never waned, and although I hated seeing her under those circumstances, I was always eager to stop by her room for a chat when I saw her name on the "big board".

The first thing I noticed about Julie every time that I saw her was her eyes (I'm sure I'm not alone in this). It wasn't because of the physical presence or look of her eyes though, but because her eyes always told her story. You could see how she was feeling, or what emotion she was either exuding or holding back just by looking at her eyes. And when I picture her eyes now, I see a smile. Even though it was rare that I saw her smile, sense it was usually covered by a mask, I saw her smile through her eyes. She smiled a lot. She giggled often. Being in her presence always made me feel happy. That's just who she was.

I don't mourn her death though. My heart certainly breaks for her husband, friends and family she left behind, but I know that we are all currently celebrating the life she lived and more importantly, the life she lives now. Like me, Julie was a servant of Jesus Christ. We had many wonderful conversations about our mutual faith and both trusted the Lord fully with what He wanted to do with our lives. Although Julie was called Home much earlier than any of us wanted, her Father wanted her back. She was ready to go.

So Julie, tell Dad I said hello, and if you could, put in a word for me that I'm not quite ready yet. Thanks. You will be missed....but I will see you again, friend.

Monday, March 17, 2014

Mandi Monday: "Which One?"

Mckenna is still a talker. She talks ALL. THE. TIME. She comes by it honestly (whoops) as I talk a ton, my mom talks a ton, and my Grammy talks a ton. It's a blessing and a curse as a toddler (probably is also as an adult. Ha!) I love that she says all that she's feeling, so I know. I love getting into her brain. I don't so much love that she asks the same question 392938 times just to fill air time. My favorite part about her talking these days, however, are the adorable things that come out of her mouth. Here are some recent highlights:

"I miss you" - Usually I can figure out the root of what she's saying, or what she thinks it means and therefore why she's using it how she's using it…but in the case of this phrase, I'm not so sure. She says it all the time. Sometimes she says it when we've been apart. But usually she says it when we've been together. She just randomly will say, "mommy, I miss you." I'm not sure if she thinks "I miss you" and "I love you" are interchangeable. Maybe she thinks "miss you" actually means the opposite of what it does. Regardless, I love hearing those three little words come out of her mouth.

"Thank" - This is Mckenna's version of "thanks". I've tried to emphasize the "s" to show her it's "thanks"but she doesn't so much care, and really, I don't care either. To hear a sweet little "thank" out of her mouth is cute.

"What time is it?" - She asks this when wondering when something is. "Today we have dance class." "What time is it dance class?" The funny thing is she wants to know an actual time…like "9 o'clock". She even repeats it back like she is confirming it. It cracks me up since she has no idea what time that actually is, how long 2 hours feels, etc. But it's just so cute as I try to explain all those things to her in question after question series of questions that follows the "what time is it?"

"Just a little teeny tiny…" - This is her bargaining method. When asking if she can use something, have something, etc she knows may not fly, she throws in that she wants "just a little teeny tiny" at the end of the request. She usually says it in an angelic voice while making the "small/little" sign with her fingers (you know holding your thumb and pointer finger close together), and adds this little cute shoulder raise she does when she's asking a question.

"Just like you" - Mckenna likes to do things like we do. She likes to use the cups we use, or eat the food we are eating, or partake in an activity that we are doing. This simple little phrase makes my heart so happy. I love nothing more than when she asks for something so she can be just like me. "I want wear my jeans, just like you…" It melts my heart. I remind myself, however, that she wants to be just like me…so I need to axe all the behaviors I don't want her emulating. "I want soda just like you"….umm no. "I want candy just like you"….errr not at 9AM.

"Which one?" - I have a love-hate relationship with this question. She asks it all the time. Most the time, it's not used correctly and I actually have NO idea what she's trying to ask, so I repeat back what I think she's meaning to say as the question, and then answer the question I made up. A conversation could go like this:
Me: Oh look, a school bus!
Mckenna: Which one?
Me: What do you mean which one? The one right there.
Mckenna: Which one?
Me: Do you mean "where is it?"….It's over there (said while pointing)

But sometimes it can look like this:
Me: Oh look, a school bus!
Mckenna: Which one?
Me: What do you mean which one? The one right there.
Mckenna: Which one?
Me: Do you mean "where is it?"….It's over there (said while pointing)
Mckenna: Which one?
Me: I don't know what you're asking. There's only one bus, so it's that bus. The bus right there. The only bus you can see. Do you have another way of saying what you want to know?

It's semi-cute when she says it. But it also usually leads a really long guessing game that I only have patience for 60% of the time :)

I love hearing what's happening in that little brain in fragmented and limited words. I love when she misuses or mispronounces words. I love her little Minnie Mouse voice. I think these are some of the things I will miss most when she grows up.

Thursday, March 13, 2014

Thankful Thursday: March & CF Community

Wednesday, March 12, 2014

Wordless Wednesday: First Dance Class

Mckenna started some fun classes at a local rec center this week. Each class is 45 minutes long. Monday is dance, Tuesday is tumbling, and Friday is a "sports" class (where each week they do a different sport). We want Mckenna to be active, but don't care what she chooses to do for activity and exercise. We figured putting her in a bunch of different classes would allow us to see what she liked best and what she was good at, before throwing her into something more time consuming that we randomly selected for her.

So far, so good. She loved her dance and tumbling classes. It is possibly one of the cutest things of all time to watch her wiggle and move to music. She definitely doesn't look like a child prodigy so far, but it's super endearing to watch. It's heartwarming to watch her adorable little self try to emulate some of the movements and skills. I love watching her brain try to process what she's seeing and recreate the movement.

Here is a video from dance class numero uno:

)

Sunday, March 9, 2014

We're Still Here

Welp, clearly things have gotten away from us. Life has been a bit nutty these last couple weeks…shoot these last couple months, and well, this little journal we call RSBR has been a bit neglected. We promise to try to nurture this bad boy a little more going forward.

Here's what's been going on with us…

We went to Lancaster, PA last week, Saturday to Wednesday for my Grandpa's funeral. He passed away in AZ, but my Grandma is buried near where they lived in PA, so that's where he wanted to be buried also. Believe it or not, it is pretty easy (and inexpensive) to ship a body…if you're wondering how to transport your next murder victim. I kid. Anyways, we went to PA for a few days. It was a great trip. We enjoyed time with family, seeing and meeting all those who loved my Grandpa, and seeing a little snow. My Grandpa would have loved how the services went and turned out, and we were really grateful for all the people that came to celebrate such an incredible man. The one interesting aspect was having a toddler at an open casket visitation. Mckenna posed a lot of questions, but seemed to handle it all well. It's certainly an impossible concept to grasp that Pa's body is in the room, but that the rest of him now "lives in heaven at Jesus' house," as we told her. We weren't sure if we should let her be there and see him, but I'm glad we made the decision we did. I think we often make death so scary in our culture. But I want it to be something Mckenna feels comfortable with. I want her to learn that there's joy in a Christ-follower going to "live at Jesus' house". So that's what we did. We called it Pa's party and Pa's funeral party. We were real. We showed how we were feeling. She, of course, saw tears. But I tried my best to offset any tears with talk of how much joy Pa was feeling and what fun he was having.

When we got home from PA, it was a quick turn around. Ronnie had a work trip to FL already booked for a speaking commitment, and Mckenna and I had a trip to CA planned with my friend and her two girls. The trip to California was amazing. It certainly wasn't relaxing, as I'm pretty sure a trip with 3 little girls under 3 is never a recipe for R and R, but it was a trip full of fun, memories, and a lot a laughs. Here's the only group shot we got, and it's a miracle everyone was still long enough to fit into one frame…However, expecting all of us to be looking at the camera would have been asking too much :)

All in all it's been a busy couple weeks filled with a lot of love, a lot of quality time, and a lot of thankfulness for all our many blessings.

Thursday, February 27, 2014

Thankful Thursday: Happy Ending & The Cross

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for a happy ending. My grandfather passed away late Sunday night (technically Monday morning, I suppose) and it was truly a happy ending. He was an incredible man. He lived a full 88 years of life, and he lived them well. He moved from Pennsylvania to Arizona (just minutes from my parents' house) in December, so we got to spend a lot of time with him in the last couple months of his life. He started feeling sick on Saturday night and went to the hospital, so we had an indication that things weren't great and all got to spend a lot of time with him on his last day. My aunt even had time get to AZ from Kansas City before he passed. And he took his last breaths, comfortably, with all of us holding him, telling him "I love you", praying together, and listening to his favorite song "It is well with my soul". While it is sad, and we will miss him dearly, I am so thankful for such a happy ending.

I'm thankful for the cross. Death can be sad. But when the person that dies is a believer, it's only sad for those of us left on this side of heaven. My grandfather knew Jesus. He believed that God sent his only son to die on the cross for our sins, and he had a personal relationship with Him. The best day of my grandpa's life was on Sunday. He was ready to go home, and I'm certain he's never felt joy like he did when he ran to meet his Savior face to face. I could not be more thankful, and joyful, about that reunion!

I'm thankful for humor. For those of you that know my family, you know that there is very little that will prevent us from joking around. In fact, there are very few subject matters and even fewer life situations that escape our humor. And man am I thankful for it. To be able to sit in a hospital room in a situation that could be very tense, yet have the ability to joke and laugh, it makes my heart so full. My grandpa felt "pretty miserable", yet he was cracking jokes as he laid there. Waiting in the hall during procedures, we had to keep our giggles down as to not disrupt his peers in the ICU. Sitting in his room after he had passed, even as death sat present in front of us, we found humor wherever it could be found. None of us take life too seriously, especially in some of life's most critical junctions. And I am really thankful that that is the case. A good laugh seems to make all things in life feel ok.

I'm thankful for opportunities to learn and to teach. This one may get heavy, but I'll go there. I'm thankful that in my grandfather's death, I was able to learn and to teach. I have never been present when someone has died, and I have never seen different aspects of the funeral planning process. But I was able to experience those two things this week and in a huge way, I'm thankful. I think things can look really scary in our minds. Yet often times, when we see them played out, they are ok, and in some ways, beautiful. Being married to someone with a terminal illness (even if they claim they will live forever - right, Ronnie?!) can bring a lot of questions surrounding death, dying, and details after dying. I'm actually thankful I got to see some of it played out this week because, well, it all felt ok! And I'm REALLY thankful for that. I'm also thankful that it gave me the opportunity to teach. Mckenna is young and doesn't get it, at all. But I know our words, attitudes, and actions will be buried somewhere deep in her little subconscious. I'm not sure what the future holds for any of us, but I am really thankful that I had an opportunity to have conversations with her about salvation, death, and the joy of going to heaven. I think we make death too sad and scary in our culture. We have a personal relationship with God, I think death should be celebrated, not feared. And I hope Mckenna can truly believe that in all of her life experiences.

Ronnie's List:

Mandi said that she had a lot to be thankful for and what she was sending me was going to be longer than usual. I decided to read her's before writing mine. After reading what she's thankful for this week, I think it may be best that I just tell you how much I love and respect my wife. I am so lucky and blessed to have her be my partner in crime and mother to my child. I love you honey.

What about you? What are you thankful for today?

Thursday, February 20, 2014

Thankful Thursday: New Kitchen & BART

I'm thankful for our new kitchen. I feel so blessed to have been able to give our kitchen a facelift. I know that is was most certainly a want and not a need, so I feel so thankful that we were able to do it.

I'm thankful for this: http://www.huffingtonpost.com/2014/02/19/norwegians-boy-without-jacket_n_4815716.html. This video made me choke up and my heart swell with love and joy. In a world where the news is filled with horrible stories, this video is a ray of hope showing the love and compassion that is still everywhere around us.

Ronnie's List:

I'm thankful for free breakfast buffets. I stayed in a hotel all last week and was able to take full, and I mean FULL, advantage of all that it had to offer. Now, one interesting thing about this particular hotel buffet was that you had to microwave many of the breakfast foods - bacon, breakfast sandwiches, hash browns, etc - but, they did have fresh waffles with strawberries and whipped creme. Yes please.

I'm thankful for Happy Hours. On the same note, when I first got into San Francisco, I opened up my trusty Yelp app and identified all restaurants within walking distance that had Happy Hour specials. No, not because I drink, but because I don't like paying full price for food. So, between the free breakfast buffet and happy hour early dinners, I mostly lived off of 2 meals and snacks throughout the day. I easily ate for less than 20 bucks a day. Not bad.

I'm thankful for public transportation. There has never been a huge need for public transportation any place that I have lived, so when it's available, I tend to take full advantage of it. And I guess I should be clear, I'm not talking busses, I'm talking trains, subways and trolleys. I used BART as much as I could last week and I loved it!

What about you? What are you thankful for today?

Tuesday, February 18, 2014

Does CF Consume Your Life?

Do you feel like CF consumes your life?

I get asked quite a bit if it feels like CF consumes my life since I do so many treatments and make sure that I exercise daily. I of course don't feel like my life is all about CF, but I thought it would be handy to put it into numbers to see if I could make it more clear. So, for this little exercise, I'll take 2012 vs. 2008. I'm taking these two years because they seem to be the average year before and after I got serious, or better put, "re-serious" about my health.

2008 in hours
Treatments: 547
Exercise: 182
Hospital Stays: 1680
Total hours devoted to cystic fibrosis: 2409 or 28% of all available hours

2012 in hours

Treatments: 1095

Exercise: 547

Hospital Stays: 720

Total hours devoted to cystic fibrosis: 2362 or 26% of all available hours

So when you look at those numbers, it looks like a wash right? I'm still devoting basically the same number of hours per year towards "taking care of business" when it comes to CF. However, looking deep into the numbers you'll see that in 2012 I am spent double the amount of time doing treatments, triple the amount of time exercising but less than half of the time in the hospital when compared to 2008. I don't know about you, but I would MUCH rather be doing treatments and exercising vs. being in the Hole.

There are a couple more important numbers however that need to be thrown into this equation:

2008 lung function

Highest high: 79% FVC 68% FEV1

Lowest low: 64% FVC 54% FEV1

2012 lung function

Highest high: 87% FVC 74% FEV1

Lowest low: 78% FVC 63% FEV1

**It should also be noted that

a) I started a new predicted model in 2009 that would have actually had my 2012 numbers even higher compared to my 2008 numbers and

b) Since "on average" "they" say that "lung functions declines by 2% per year", my net gain is actually even higher!

Now, CF is definitely more about lung function and those numbers don't always correlate with how I feel. I can tell you this without a doubt though, if I had to quantify how I felt in 2012 vs. how I felt in 2008, it wouldn't even be close.

In 2012 I could...

breathe better.

laugh longer.

run further.

sleep sounder.

expect a brighter future.

So if 2012 was an average year of awesomeness, 2008 wouldn't have even of registered on the same scale.

We all know that cystic fibrosis is about more than just numbers. But sometimes, numbers can help make things more clear. By looking at the numbers above, it's clear that the more I did for my health, the more my health did for me. Sure, a quarter of one's life devoted to anything seems like a lot, but I can tell you this, I've enjoyed the other 75% of my life a whole lot more in 2012 than I did back in 2008.

Monday, February 17, 2014

If You Give a Mouse a Cookie

Oh boy…I just went to write my blog and realized I was the last one to post a blog. Last Monday. Yikes. We really blew it this last week. In our defense, we were a bit busy. I'll give you the full scoop. Sorry this will bore you.

We started in on a kitchen remodel. It was a bit of a "if you give a mouse a cookie scenario." Every homeowner knows exactly what I'm talking about. It started with our refrigerator. To put it nicely, it was horrible. A side-by-side that had just enough room for nothing that hadn't made ice for months. (Anyone else need bigger fridges because they have two shelves full of meds? What's with Cayston packaging? It's really well laid out and helpful…but it's HUGE). We were going to get a cheap additional fridge for the garage, but it seemed silly to not just replace our current fridge, that at some point needs to be replaced and was worthless, and use it as the extra fridge. But our previous fridge was white. And well, we prefer stainless and if we want to resell the house at some point, people will be hoping for stainless. So that would mean a stainless fridge. Which would mean all new appliances so they'd match. Which wasn't a bad idea since our microwave would randomly turn on (seems like a fire hazard, doesn't it?) and the dishwasher was rusty in spots. So there was it was, we made the decision to get new appliances. But wait, new appliances? Let's look into getting the cabinets re-stained like we planned to do all along. AND wait, if we are doing the kitchen cabinets and they are already staining, let's see if they'll just throw in the bathroom cabinets. And that my friends is how you end up redoing your kitchen, and re-staining your bathrooms, all from wanting extra refrigerator space.

The project was supposed to take a week. That was 3 weeks ago. Gotta love contractors and home renovations, right? Well I'm happy to say, after 3 weeks of hard work by our trusty new friends, we are very pleased with the outcome.

The kitchen looked like this to start...

Then it looked like this…for a very long time because we got held up. For a girl who considers organizing just hiding things behind a closed door, this was like airing dirty laundry…Anyone that came by saw my dirty little secrets.

Then it looked like this. Please note all the murder scene plastic that cloaked the house for weeks. Thankfully we trusted our helpful contractors, or I would have been nervous they were preparing to kill me while Ronnie was out of town.

Now it looks like this! The back cabinets are a dark walnut and the island is an off-white with brown "antiquing". We are still waiting for the appliances that started this whole mess. They get here today.

The desk area…usually the mail covers the whole thing. So if you ever stop by for a visit, you won't be able to find said desk.

The roses are a nice touch thanks to hubby for V-day. He had flowers show up to keep him out of the dog house for being out of town on the day of love…well played, Senior Sharpe.

Another angle.

This is what the bathroom looks like now (used the be the same color as the kitchen). The other 2 are the same color now but too small to really stand in and take a picture.

Meanwhile, Ronnie was in San Fran all week for work…that's his excuse for not writing. (He can thank me later for making an excuse for him.) Mckenna and I had fun having a girls week full of fun with friends, playdates and lots and lots of playing outside in some gorgeous weather.

And lastly, a cute, exciting, and semi-sad update…we signed Mckenna up to start preschool in July. Yippee and boohoo. She is so excited. We went for a school tour last week, and I had to carry her out kicking and screaming…literally. Our little social butterfly can't wait to spend two and a half hours, two days a week with friends. And the best part is her best friend since the day she was born will be in class with her. They will be so good for each other. Mckenna is uber outgoing, bossy, and doesn't think before she does anything. Her friend is more careful, shy and we can't wait to watch her step into a new stage in her life. It will be a proud moment to see her walk into school for the first time, knowing she's headed into a chapter that will be full of trials and triumphs for her. Our prayer is that we all navigate the chapter well.

Monday, February 3, 2014

The Impact of a Stranger

This may be the world's most random blog post, but I'll write it anyways.

Mckenna and I take lots of walks lately. The weather has been gorgeous, and I love nothing more than strolling (we move SLOW) down the sidewalk listening to Mckenna ramble as she pushes her baby in a stroller, rides her bike, rides her tryke, walks etc. We were out on one of our walks when we ran into a man. We chatted a little while making friendly neighbor chat. He is in town for a couple months with his wife staying in his son's house to escape the cold winter in Canada. He's originally from Ireland. He passed on little words of wisdom on child rearing. He told me what a "lovely job" his wife did raising his 3 sons and bragged about all 4 of them. His eyes twinkled. He charmed me in the way an accent and 75-year-old smile lines can. He was dear with Mckenna. And in a tip of his adorable beret, he rode home. I had a smile on my face for the next few hours; my heart warm from the interaction with a sweet, caring old man.

Fast forward a few days.

Mckenna and I were out on another walk. I saw the same gentleman riding towards us. I recognized him first by his beret, and then by his smile lines. He hopped off his bike to chat. I apologized for not getting his name the last time we talked. Michael…pronounced "me-hall" in Gaelic. He gave me the full history. A long history. But essentially he would have been a Prince. I laughed and told him I would just call him Prince "Me-hall". No one in the neighbor had to know the long back story. He smiled. "Do you have a sweetheart name I can call you?" He quipped back. "You can just call me sweetheart," I laughed. He had one of the biggest smiles I've seen. And then he told me he wanted to recite a poem for me. He has memorized 300 poems to ward off Alzheimer's, he informed me. Mckenna waited patiently on the curb as Prince "Me-hall" told me about the poem. A poet, W.B. Yeats met a woman he loved that refused his marriage proposal multiple times. He wrote her a poem and had it read at the alter at her wedding to another man, and then sent it to her every year after. And then, using a piece of padding from Mckenna's helmet as a prop, he recited the poem to me. He started…

When you are old and grey and full of sleep,
And nodding by the fire, take down this book (handing me the prop)
And slowly read, and dream of the soft look
Your eyes had once, and of their shadows deep…

I let me eyes leave his for a minute, and looked into Mckenna's.

He stopped. "I'm reciting you a love poem and you look at your daughter? She's just your daughter!" He laughed. "Sorry! Sorry! Start again"

He started again. I felt a little uncomfortable. I hate eye contact for too long. It makes me uncomfortable. But I made myself look into his sweet eyes the entirety of the poem.

When you are old and grey and full of sleep,
And nodding by the fire, take down this book
And slowly read, and dream of the soft look
Your eyes had once, and of their shadows deep;

How many loved your moments of glad grace,
And loved your beauty with love false or true,
But one man loved the pilgrim soul in you,
And loved the sorrows of your changing face;

And bending down beside the glowing bars,
Murmur, a little sadly, how Love fled
And paced upon the mountains overhead
And his face amid a crowd of stars.

He finished and the serious look that was on his face as he recited the poem melted into another grin. I told him it was beautiful. "Amanda, I will give you a copy of that poem, so you will remember me until the day you die." I smiled. "I leave in 2.5 weeks. Surely you'll be sad." "Of course. Mckenna and I will both wear black as it will be a day of mourning." I grinned. He jumped on his bike and as he rode away, he looked back, tipped his beret, and yelled, "You are special, Amanda."

I'm not sure what it was about our encounters with Prince "Me-hall" that warmed my heart so much. Maybe it was the twinkle in his eyes, or the way he imparted wisdom in a way I wanted to take notes. I don't think I'll ever forget Prince "Me-hall". It reminded me just how much knowledge and wisdom our elders can have. It made me wish that I could have tea with him every afternoon, and that he would be here year round to have Mckenna go over and learn from the trials and triumphs that created each of the lines on his face. But more than anything it reminded me of the impact of a stranger. I need to always remember my interactions with people could have an impact just as he had an impact on me. And maybe I need to read more poetry, that poem was beautiful!

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