A Shout Out (To Anyone Who Is or Was or Ever Will Be the Primary Care Giver to a Toddler)

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There have been a handful of occasions since Lucas was born when Betsy has gotten sick and needed to take several days to rest and recover. We are really lucky to have all of my immediate family living within a 15 mile radius and we have been blessed with great friends who also live close by. We are extremely grateful for all of them and their willingness to pitch in and help look after Lucas when Betsy can’t (or shouldn’t).

Sometimes, however, the responsibility falls to me. I am thankful that, for the most part, I have a very flexible work schedule. I can stay home in the morning and work from home in the evening if Betsy needs a few extra hours of sleep. I get a lot of vacation days that I can use liberally. My boss is very understanding of Betsy’s health situation and both allows and encourages me to put my family first. Not everyone has that freedom.

So at the beginning of the month when Betsy got sick, I ended up taking off a Thursday, Friday, and Monday. It’s not easy taking over as the primary care giver for a three year old. Lucas and Betsy have their routines and places that they go and things that they do. I don’t always know how to play “the right way”. I think I do an okay job overall, though. I really do have a ton of fun when I spend the day with Lucas. He’s a laugh! But he is also pretty full on. FULL. ON. I am completely decimated at the end of a day of trying to wrangle that little round ball of toddler energy.

A momentary pause in the action.

A momentary pause in the action.

One of the days I was on the clock, I had to stop by the facility where the soccer teams that I coach train and play. After I was done in the office I took Lucas out on to one of the empty fields and messed around for a couple of hours. And when I say messed around, I mean we ran up and down the field, which is a good 70 yards, chasing and kicking Lucas’s green soccer ball and then tumbling to the ground as he imitated the big kids he sees when he comes to watch my games.

Another afternoon we went to Jungle Java, an establishment which offers an indoor jungle gym for the kids and the caffeinated nectar of the Java bean for the parents (much to Betsy’s chagrin, I’ve never picked up the coffee drinking habit). Jungle Java has become one of Lucas’s favorite places in town. Lucas is still not quite big enough to manage all of the ups and downs. He went in all by himself once and got stuck and since then I’ve had to follow him up to make sure he can traverse all the obstacles. There is a lot of squatting and climbing and hoisting and army crawling involved in an afternoon at Jungle Java.

Trying to keep up with Lucas in the maze of fun at Jungle Java.

Trying to keep up with Lucas in the maze of fun at Jungle Java.

On the Monday, a refreshingly warm day, we drove down to the Toledo Zoo which is another of Lucas’s favorite destinations. It’s a very walkable zoo. If you happen to be there with someone likes to walk, that is. Lucas, however, prefers to run from one exhibit to the next. And when he’s not running he’s usually riding perched up on my shoulders. It is definitely a work out!

Sometimes I get home from work and Betsy looks like she’s ready to pass out.  Even on days when they don’t have special events, there is still non-stop action. Apart from our outings, Lucas subjected me to an inordinate amount of good old rough-housing: incessant jumping and wrestling and tickling and laughing. Oh and Lucas loves to run laps around the dining room table. Did I mention that?

Life's a blur when your three!

Life’s a blur when you’re three!

It’s good for me to spend a day (or two!) in Betsy’s shoes because it reminds me of what a big task she has on her hands on a daily basis. How my mother did it with four or how my mother-in-law did it with six or how my sister does it with three, I’ll never know. My guess is that there must have been a secret bottle of whiskey stashed away somewhere.

So if you are a mother or a father (this is 2015 after all!) that stays home with your young children – I salute you! And to my lovely wife who chases after our own stampeding toddler day in and day out – you are my hero!

A Spring-y Update

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Spring has finally sprung here in Michigan!  [Insert a loud and dramatic sigh of relief].  What a winter this was!  I had a nasty, debilitating virus and CF exacerbation in December followed by three additional viruses over the course of what were some of the coldest months (weather-wise) of my life. Talk about feeling cooped up! My lungs have been aching for a breath of warm, fresh air.

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Lucas’s first ever snowman (who he named “Dusty”) is now…

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…a memory. See you next winter, Dusty!

My latest virus hit right after I wrote my last update.  I had a sinus infection and a sore throat and this time, pink eye.  Lovely. I went to a primary care physician who prescribed drops for the pink eye and told me my other symptoms were viral.  She did encourage me to follow-up with my pulmonary specialist, however, and I just happened to have a routine appointment on the books for the very next day.

After I got to the appointment and took my breathing test, I knew I was in trouble. My FEV1 was down 13 points.  What a shock!  I knew I was struggling and hadn’t felt great in weeks, but I never would have guessed my lung function had dropped so drastically. My CF doctor put me on oral antibiotics immediately and scheduled another appointment for just four days later.  The antibiotics took care of my acute sinus and throat symptoms within 36 hours (so maybe they weren’t viral after all?) but I continued to struggle with noticeable wheezing and inflammation in my lungs. When my FEV1 showed no improvement four days later, I started on steroids.

I’m now a week into the steroids and a week and a half into the antibiotics and am feeling pretty good.  I’m a little cloudy–the steroids make it very difficult to get a good night’s sleep.  But it feels great to be free from troublesome levels of congestion and inflammation, and although I’m not exactly breathing easy, I’m breathing easier. I’ve felt well enough to be out and about with Lucas, enjoying this warmer spring weather.

Sticks, snow, puddles, mud, rainboots...it's a little boy's heaven out there.

Sticks, melting snow, puddles, mud, rainboots…it’s a little boy’s heaven out there.

Here comes the sun!  (And yes, Jaime and Lucas picked out those boots for me :))

Here comes the sun! (And yes, Jaime and Lucas picked out those *bright* boots for me :))

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Swinging at the park!

Now for an update on Operation Up Scale and Lace Up. I have stayed true to my committment to gain weight and have put on three pounds so far.  I haven’t gained an ounce since I started the antibiotics as they always upset my stomach, but my weight is holding steady.  I know I’ll get those last two pounds on once I finish out the medication. The MyFitnessPal application has been an awesome help in this endeavor again.  It keeps me on track with my calorie goals.

I got back on the treadmill too!  Thankfully I never got terribly ill with this virus or bacterial infection or whatever it was, so once I started on the steroids and antibiotics I recovered enough within a few days to have energy to exercise.  Last week I walked two miles at a 15 minute mile pace three times.  This week I started back on the couch to 5K program and alternated jogging one minute and walking a minute and a half for the two miles.  It’s going well! (Initially I typed cough to 5K. Is that a Freudian slip or what?!)

I have another pulmonary appointment in two weeks and I am hoping to see a big jump in the right direction on my FEV1. Even a little hop in the right direction would be encouraging. I have to remind myself over and over that healing takes time, and to choose patience over panic.

Happy Spring everyone!

Do I Hate CF?

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Wonderfully Made

I have seen many people comment about hating cystic fibrosis. CF is personified as the enemy and the accusing finger is pointed. We are angry with it and we hate it. We wish to stamp it out forever. I think it’s natural to look for something to blame in the face of adversity. We need somewhere to go with our anger and frustration. Maybe a part of us feels that if blame can be assigned, and someone is responsible, than bad things are preventable.

Certainly these feelings of rage towards cystic fibrosis are not unfounded.  Cystic fibrosis is an awful disease.  It causes bodies to have great difficulty functioning.  It causes pain and suffering.  It threatens survival.  It steals years of life, health, and the very breath we breathe.  It separates families. It took my sister’s life at 35. I now struggle with the effects of this disease every single day of my life and they are not pleasant. I have felt that anger. I have felt bound by CF.  There are plenty of times that I. Want. Out. I assume my life would be so much better without it.

But when I hear people say they hate CF, or when the thought crosses my mind, there is a part of me that feels uneasy.  These comments have almost felt personal at times. It may be partially because I don’t like aggressive, angry words.  But there is more to it. Although cystic fibrosis does not define me, it is just as much a part of me as my blond(ish) hair, or my blue eyes, or my blood type. It is written in my very DNA. There is no version of me that could exist without it.

Psalm 139 verses 13-16 say this:

“For you created my inmost being; you knit me together in my mother’s womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”

God created me and made my body wonderful, cystic fibrosis and all. I believe that the presence of diseases like cystic fibrosis are a deviation from God’s perfect creation: that they are a result of the powerful presence of evil in the world.  They are certainly not what God intended.  So I don’t mean to suggest that God glories in the ugliness and devastation of this disease.  But He does glory in bringing love, life, strength and renewal out of pain and struggle. God brings beauty out of ashes.

And so from the time I was born, God began the wonderful work of redeeming this cystic fibrosis, yes, this disease, this hardship in my life, to be not a despised part of who I am, but an instrument of good in my life.  I have learned many lessons from this disease–lessons that have increased my faith, deepened my character, strengthened my relationships, given me perspective on what’s important, and put me in a place to be able to reach out to others.  CF has been a great burden, but also a great blessing.

So do I hate CF?  No. Yes. I don’t know…maybe. I sure feel that way sometimes. I hate the destruction and suffering that it brings. But I am eternally grateful that in the hands of my Savior, this horrible disease can be transformed into a pathway for blessing.  I’m not certain my life would be better without it.

I am fearfully and wonderfully made.

A Stray Gray

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A little rainbow of hair color.

A little rainbow of hair color.

Well, it’s official. I found my first gray hair. I wasn’t looking for it, but something shiny caught my eye in the bathroom mirror the other day, and sure enough, there it was.

I know plenty of people get gray hair before age 36.  I thought for sure that after the first year of Lucas’s life I’d be completely gray. But every now and then I’d check and there wouldn’t be any there.

I have seen that gray hair is upsetting to many people. (Somebody in this household started getting them several years ago but no one would know because that somebody yanks them all out.)  Not so for me.  Perhaps it’s because the gray hair isn’t that noticeable. It blends in with my hair color. My hair is some ambiguous shade of blond.  My stylist once called it honey blond. A family member once called it dirty dishwater blond (uh, thanks for that lovely description).  Whatever it is, the gray hides in there pretty nicely.

The truth of the matter is, I’m thankful to be getting older! I just read a publication on the Cystic Fibrosis Foundation website analyzing the patient registry data from 2013.  According to their document, the median age for survival is now 40.7 years old for CF patients. That is up from 33.4 years old in 2003.  When my sister Sheri was diagnosed in 1970, her life expectancy was age 12.  What wonderful gains!

As I’ve mentioned before, there is a lot of exciting research going on which addresses the basic defects of the cystic fibrosis gene. Patients with certain mutations are already benefitting hugely from new therapies and more research is in the works for the other CF mutations.  I hope when the patient registry data is analyzed in 10 years, that even more spectacular gains will have been made.

So bring on the gray hair!  I’ll wear it proudly.