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Thank you, Transplant, for waiting two more days

25 Aug

Five months ago, to the day, Jody was officially listed for his new lungs.  When that happened, there were two things I feared transplant would interfere with: Our oldest daughter’s birthday, and her first day of Kindergarten.  Obviously there were other things I preferred not to miss, but those were the biggest.  I naively assumed he would have been transplanted by now, so as the time drew closer I felt nervous that my fear might actually become reality.  Today I’m happy to report that it didn’t!  Thank you, transplant, for waiting at least two more days.

Tabitha's 6th Birthday

Tabitha’s 6th Birthday

Since I normally blog about sickness, and heavy-to-read topics (and there will be a little of that in this post too), I thought I’d change it up a bit and add some fun and lightness into this post.  Since February, when we took our girls to see Disney’s Frozen movie, Tabitha, our oldest, has been obsessed with the movie.  She’s been talking about her “Frozen” birthday party for months.  Because there are so many unknowns in our lives right now, and despite the fact that she has had a birthday party each year, we decided to forgo the party this year.  Tabitha had a hard time accepting and understanding this so we promised her a Frozen Fun Day at home instead, just the four of us.  The hardest thing for me about not having a party was not making her a nice cake, something I have always done and enjoyed.  As Tabby’s birthday grew closer, I

Tabitha's "Frozen" Cake

Tabitha’s “Frozen” Cake

said, “the heck with it,” and decided to go for the cake I had been planning to make, knowing it would never get eaten by our family of four, but not really caring.  Having no training in cake decoration, only learn-as-I-go experience, I’m happy with how the cake turned out.  More importantly, the birthday girl loved it!  We had a great day celebrating Tabitha’s six years of life, thankfully together as a family, and in the end I don’t think she was too bothered by the fact that she didn’t have party.

6th Birthday, Ice princess, Tabitha.

6th Birthday, Ice princess, Tabitha.

Frozen Fun Day completed (thanks again transplant for waiting), today marked another milestone, Tabitha’s first day of Kindergarten.  She was very nervous about this, especially getting on the bus, but thankfully, it went well.  I didn’t even shed a tear until after the bus pulled away.  Here are a few of my favorite shots from the morning.

1st Day of Kindergarten

1st Day of Kindergarten

I’m so relieved, and thankful, that we got to experience these important days with Tabitha.  I’m also grateful that Jody was out of the hospital and well enough to spend this time with us.  Last week, after four days on IV antibiotics, he seemed to be getting worse and we questioned if he might end up admitted.  He felt achy and extremely fatigued, more so than normal.  He spent most of the week in bed sleeping and joked that he felt like a newborn, basically just eating and sleeping.  We figured he might have picked up a virus and needed to do what his body was telling him to do to fight it off.  We’ve been told that for people with CF, especially end-stage CF, a simple virus can hit them hard and take a while (even six weeks) to go away.  Thankfully after three days of rest, he seems to be feeling better.  I never quite feel like he’s off-the-hook when it comes to bacteria and viruses, but I’m glad to see him up, moving around, and spending time with us again.  I would like to ask for prayers that this continues.  Our youngest daughter woke up this morning with a nose that’s running like a faucet, probably a viral infection that will just take time to go away.  Jody can’t afford to get this.  I can’t afford to get this (I need to be healthy and ready to be at his bedside when he gets his new lungs).  Please pray that Piper doesn’t share her sick germs and that her symptoms disappear as quickly as they came.

Thanks for reading.  I hope you enjoyed the pictures (click them to enlarge) and a slightly different, more fun and easy-to-read post.

 

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Birthday Fun

5 Feb

On January 31st Jody celebrated his 42nd birthday, and birthdays are kind of a big deal in our house.  It’s not that we always celebrate them in big ways, but we try to make them special nonetheless.  Coming up with ideas to make a birthday meaningful is pretty easy for the kids, but I find it a little more challenging for my spouse.  Here’s what I came up with this year.

7:30 am:  This one was an unexpected surprise and completely out of my control, but thank you Jesus!  We woke up on his birthday morning to the most amazing sky which cast a purple glow on everything (especially the white snow).  I, of course, ran outside to capture it on camera.  This picture is unedited.

8:00 am:  Breakfast in bed.

9:00 am:  Catching Jody off guard by spraying him down with silly string while doing his morning nebulizer treatments.

10:00 am:  Presents of course.

11:00 am:  Late-morning tea, served in a “Happy Birthday” mug I bought at Goodwill for .50 cents.

12:00 pm:  The girls gave their Daddy a hand-made birthday card they painted just for him.  The youngest used her handprint for the cake, and the oldest used her fingerprints for the balloons.  The inspiration for this came from Meet the Dubiens.

1:00 pm:  Lunch and then the Boston Cream birthday cake I make for him every year, per his request.  And a family picture thanks to my trusty tripod.

2:00 pm:  Birthday banner fun & photos.

3:00 pm:  A small, silly gift to keep the fun going.  Something he can keep in his oxygen backpack for headaches when he’s out and about.

5:00 pm:  Another gift (after a relaxing two-hour afternoon nap).

6:00 pm:  Heading out for a date night.

7:00 pm:  Our reservations for dinner weren’t until 8:30 pm so I brought along his favorite candy bar for a snack (which I had bought ahead of time when I was planning for this day).

8:30 pm:  Dinner at Fenz, a restaurant we’d never tried before. (I gave him the option of choosing the place or being surprised.  He chose to be surprised).  If you ever eat there you must try the fried pickles appetizer.

9:00 pm: A final birthday card from me, including a handwritten note, as is our card-exchanging tradition.

That was the last of the tricks up my sleeve, or so he thought, but I had one more surprise.  The next day was Saturday and we had no plans.  But I (along with the help of some of his friends) had arranged a birthday “Guys Night Out” for Jody.  One of his friends showed up at our door at 5:10 pm and asked to take him out.  Slightly confused, Jody soon realized I was in on it when I pulled a shirt out of the kitchen cabinet for him to change into and handed him a container of cupcakes to take along.  Six of his friends met them for dinner at a restaurant and then they went back to another friends house afterwards (one who happens to have a 104″ projection screen TV in his basement).  I was really glad Jody could get out and spend some time with his friends, and I’m told they had a blast.

As you can see, making a birthday special isn’t about the money you spend, it’s about small gestures that say, “You matter.”  Sure gifts are fun, and do require some thought, but they can also be an easy way out of the celebration.  Taking the time to plan ahead is key and will make your loved one feel especially loved on their special day, at least it did mine.

This wasn’t a normal, CF related post for me, but I hope you enjoyed the break from the norm and were inspired to do something fun and special for your loved ones next birthday.  I’d love to read your comments of what you do to celebrate a birthday, and who knows, maybe I’ll use your idea next year.

My Story of Hope

9 Jan

Photo by Collecting Wonder

In this post I’m going to share a story with you that I have shared with few people.  It begins a little over a year ago, in October of 2012.  This was the time when Jody initially began to experience shortness of breath and frequent hospitalizations.  It was the first time our lives were being seriously impacted by Cystic Fibrosis and I was having a hard time dealing with it.  I felt, in one word, hopeless.  It was hard to stay positive about a progressive disease with no cure.  Every major coughing spell (which happens a lot for someone with CF), was a reminder, a smack in the face, that we couldn’t get away from this disease.  I missed (and still do), being able to do the things we’d always done.  I believed the lousy statistics about Cystic Fibrosis and lung transplants.  I began to dwell on the negatives, fearing the worst for our future.  It was a hopeless feeling.  And so I began to pray that God would restore my hope, but I wasn’t prepared for the way that He would do it.

There have been few times in my life when I can say with confidence that God spoke something to me, this was not one of those times.  This time, God’s message to me was loud and clear.  It came in the form of random daily encounters, always with the message of hope.  I wish I had written these things down because I don’t remember all of them, but I’ll share with you some of the ones I do (in no particular order).

  • One day I was driving by myself in the car and was passed by an 18-wheeler with the word “Hope” written in big bold letters on the side of his trailer.
  • Another time I turned on the radio in the car only to hear the words, “… and here are your words of Hope for the day…”
  • One morning I was sorting through a box of childhood things my Mom had given me and found, at the very bottom, a daily inspirational flip book titled, “Words of Comfort & Hope” (I don’t recall having this as a child, nor do I know why I would have ever needed it).

    Yard sale mug & childhood item

  • I love to drink my coffee/tea in a big mug.  This summer I was browsing at a yard sale and glanced at some mugs a lady was selling (I love to yard sale shop, but have never looked at mugs before, I just don’t need any more).  Oddly enough, I could see that of the batch she was selling there was one big mug in the group.  I walked over, picked it up and had to chuckle when I read what was written on it, “Bee (actually a picture of a bee) hopeful, believe in miracles.”  It was probably the best 0.25 cents I’ve ever spent and has become my favorite mug, and a daily reminder.
  • One day I received a thoughtful message from a relative letting me know that she is praying for me for hope.
  • Another day I walked into a patients room at work.  Her bedside table was covered in books.  I asked if she likes to read (an obvious question I know).  Her response, having never met me before, was, “Yes, and I have a book for you.  It’s called “Hope Beyond Reason.”  She went on to explain that it was a book about a pastor who had cancer and wasn’t expected to live, but did.  She didn’t know my story.  One of these days I’ll get around to actually taking her advice and ordering the book.

There were more encounters like this, they happened often, and I couldn’t get away from them.  I knew God was trying to tell me something, and even though I had prayed for hope, I still rejected it.  As God spoke to me, I spoke back, pointing out those ugly statistics and grieving for others close to me who had lost loved ones far too soon.  But the messages continued until one day, after yet another sign, I surrendered the fight.  I remember literally saying aloud, “Okay, God, I get it!”  And you know what happened?  The messages/encounters instantly stopped.  After a month or two of signs from God and resisting His message, He knew I had finally gotten it and accepted it.

Receiving God’s message in my life was actually the easy part.  Living it out was, and still is, the hard part.  Jody will continue to get sick, sicker than I’ve ever seen him.  Both my responsibilities and stress level will increase.  People with CF are still dying (just this past week another CF wife lost her husband).  Despite all of this, God is calling me to choose hope.  And so, I hope that the progression of Jody’s disease will be mild and that we’ll be able to accept and adjust to each new stage.  I hope that his transplant will come at the most perfect time, before he’s too sick, making recovery extra difficult.  I hope (and this is the hard one for me), that his transplant will be a success and that he will live far beyond the time that statistics say he should.

My reminder to choose hope

Am I scared to death of the “What if’s?” Absolutely.  There are many impacts of Jody’s disease that I fear.  Obviously I know that having hope doesn’t mean that everything is going to turn out the way that I want it to, it could be the exact opposite.  Regardless, I am working to turn my fear into hope.  I am choosing to believe that having hope in my life means that no matter what happens God is not going to leave me hanging.  As a reminder of all of this, I bought myself a “hope” necklace.  One charm is purple, the color which represents Cystic Fibrosis, and the other two charms create the phrase, “I will hope.”  When I put this necklace on, or when I look at it in the mirror, I am reminded to choose hope.  This is a work in progress for me, but it sure beats the alternative, which is hopelessness.

Thanks, Chick-fil-A, Lancaster, PA

8 Dec

From our family to yours, thank-you, Chick-fil-A, Lancaster, PA

Yesterday was our big day at Chick-fil-A (CFA), Lancaster, PA.  If you read my last blog post or have been following us on Facebook you know that amazingly we were chosen by CFA as the recipients of their second birthday give-back celebration.  This meant that for every original, deluxe, or spicy chicken sandwich sold between the hours of 11am-7pm, CFA, Lancaster, PA would donate $1 to our Jody Needs Lungs transplant fund.  In addition they offered us their spinning wheel where people could donate $1 directly to Jody Needs Lungs for a chance to spin the wheel and win coupons for free food on their next visit to CFA.

After about two weeks of promoting the event, both CFA and us, the day finally arrived.  We had 23 volunteers lined up to cover eight hours of handing out thank-you flyers to all customers and also to man the spinning wheel (if you were on of those volunteers we owe you a BIG thanks!).  The morning started with radio station FM 90.3 WJTL on site with their infamous Kid’s Cookie Break program from 9am-12pm.  If you were tuned in you would have heard Jody and Jamie (our fundraising team leader) speaking on the radio a little after 11am.  It felt a little surreal to hear our story being told on the radio and handed out to every customer at CFA.

Jody and I were not present all day long but we were told that the dining room was packed much of the day.  We were touched by all the people who came out to support us, even people we didn’t know, but who knew about us.  At the end of the night, 1550 sandwiches were sold, and $927 were raised on the wheel.  We also received a few direct donations, bringing the combined total raised throughout the day to $2727!

Again we want to say thank-you to Chick-fil-A, Lancaster, PA for partnering with us, and for generously giving-back.  Thank you to all the employees who worked hard that day to keep the hungry mouths fed, and for doing it with a smile.  Thank you to our volunteers for giving up your precious time on our behalf, and especially to those who served outside in the cold.  Thanks to the many of you who shared this event, and to our friend Jamie for coordinating the day.  Lastly, thank you to everyone who came out, bought a sandwich, and took a spin on the wheel.  We felt the love and support yesterday and are one step closer to being financially ready when we get the call for Jody’s new lungs!

Below are some pictures of the day for you to enjoy (click each photo to see them enlarged & to make comments).  And don’t forget to show your appreciation to Chick-fil-A, Lancaster by “Liking” their Facebook page.

Words of Thanks

5 Nov

This post is about giving thanks (and not because Thanksgiving is just around the corner, but because a thanks is in order).  Two months ago we learned of the need to list Jody for a lung transplant.  It was during this time we were also told to begin fundraising, and to start soon.  Raising money during this time was the last thing we wanted to think about, and a task that seemed impossible to bring to fruition.  When some of our friends learned of this need, they promptly offered to take this responsibility from us by forming a group of people willing to take on this burden.  This team has since named themselves our CF (Care & Fundraising) Team.  We know this is a big undertaking and feel words are inadequate to describe how much this means to us (and the weight it lifts from our shoulders).  If you have interest in joining our CF Team please email jamie@supportjody.com.

Upon learning of our need to start fundraising we were approached by the Breathe for Olivia organization, who offered to turn their yearly ham & cheese sandwich fundraiser into our first transplant fundraiser.  Breathe for Olivia is a local non-profit organization that raises money all year long, with 100% of the profits being given to the Cystic Fibrosis Foundation.  Last year this team raised a jaw-dropping $34,965 in hopes of finding a cure for CF!  Be sure to check them out on Facebook by clicking here.  There you can stay informed of future fundraisers which support finding a cure for CF.

By joining forces with team Breathe for Olivia our ham & cheese fundraiser was a huge success!  Wanna know how many sandwiches we sold?

It was a great start to our fundraising, and we are so thankful to team Breathe for Olivia for their generosity to us, and for making this happen.  We are also grateful to our friends and family who sold sandwiches, and to those of you who supported us by buying them.  You are all making a difference in our lives!

One more thanks I have to offer goes out to my cousin and her new husband.  They were married last month and we had the privilege of attending the wedding together (since Jody was finally out of the hospital and stable enough to attend).  We were quite surprised when after the wedding we were told by the bride and groom that instead of buying traditional wedding favors the money they would have spent on them was being given to us for our transplant fund.  We were quite touched, and there probably wasn’t a dry eye in the small room where they told us.  So J&A, thank you for the unexpected blessing!

I could go on and on with words of thanks and appreciation but I suspect you would tire of reading them (if you haven’t already done so).  Instead I’ll end here, with a heart full of gratitude for the many blessings we have received over the last few months, too many to list in this post.  We pray you are all blessed abundantly in return.

Israel – Part II

14 Oct

Three months ago Jody and I took our long anticipated trip to Israel.  A lot has changed in our family since then with Jody being admitted to the hospital the day after we got back, and his lungs having taken a hard hit by this infection.  We continue to adjust to a new norm for our family where we can’t just pick-up and go like we used to.  Jody continues to remain stable since my last post, and we’ve actually been able to enjoy some fun family time together (thanks to the help of oxygen).

Now that things are going fairly well, it feels like the right time to finally share some Israel pictures with you.  These pictures can be viewed by clicking on the video below (although you might not be able to view it on a mobile device).  I’d love to hear your thoughts on what you liked or what surprised you about the Holy Lands.  If you missed my Israel – Part I post about the work we did in Israel, check it out by clicking here.

 

Lastly, I want to leave you with a helpful travel tip for all of you international travelers.  This awesome tip came from Jody’s doctor (who frequently travels out of the country for work).  If you’re on Pinterest, prepare yourself, this is “Pin” worthy!  This tip is useful when traveling to a country that uses outlets that are different from ours here in the U.S. (or vise versa).   The tip is this:  Instead of buying multiple outlet converters, buy one and pack a surge strip to plug into that converter.  This tip was great for us because it allowed Jody to do his nebulizer treatments and at the same time we could charge our cell phones, iPod, laptop, etc..  I hope you find this tip equally as helpful during your next international trip.  Bon Voyage!

Israel – Part 1

13 Aug

Now that Jody is home from the hospital and things are slowly returning to “normal,” I’m ready to share our trip to Israel with you.  The trip started with the hardest, most intimating airport security we have ever experienced (apparently the Israeli airline is known for having some of the toughest security around).  Thankfully we didn’t have any issues with our suitcase full of medicine and other CF related supplies, and 11 hours later we found ourselves on holy ground (in the Holy Lands, that is).

The first three days of our trip we worked at a private school in Jerusalem.  Our church supports volunteers Zach & Shellie Maddox who work at the school.  Each day we began our time at the school with a devotional given by Zach and we were all incredibly blessed by this time.  Because it was summer break and the students were gone (except for a few taking summer school), we didn’t have as much interaction with the children as we had hoped.  Regardless, Zach had a to-do list of things needing done around the school so the tasks were divided up, and the work began.  The biggest project needing to be completed was creating the Peaceful Playground.  We also cleaned/swept, painted the cafeteria, painted lines for a soccer & volleyball court, inflated LOTS of balls (soccer, basketball, football, four-square, etc.), organized the PE closet, setup one of the classrooms, and hung curtains in the café.  Take a look at a few of the pictures to see for yourself (click photos to enlarge).

Morning Devotions

Morning Devotions

The soccer & volleyball courts before & after (lines painted & nets attached)

The soccer & volleyball courts before & after (lines painted & nets attached)

Giving the school cafeteria a fresh coat of paint

Organizing the PE Closet (before & after)

The new basketball area

Creating the Peaceful Playground

The finished playground. When the school year ended this area was rough, uneven land so the concreted area with the play activities we painted will be a fun surprise for the returning students.

The Crew

As you can see, we worked hard those first few days, but the end results made it all worth it.  We hope the kids will be incredibly blessed by our efforts, and wish we could be there to see their faces when they walk in on that first day of school.  As our time at the school came to a close we grew more and more excited about the Holy “Bible” Land tour that followed it.  Check back for Part 2 of our trip to hear about this awesome experience.

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