Posted in Dealing with Trials, Inspiration, Life with CF

Weathering the storms


Day 2 of my new blog and I feel like a little kid on the first day of school, a little anxious but really excited! I’m really hoping that in addition to telling my story, I can offer some encouragement and support to others who are also encountering seasons of change in their lives. My plan is to share personal stories, quotes, anecdotes, prayers and anything else that might strike my fancy on a given day.

A little bit about me. My name is Jen and I am wife to Bob and mother to two beautiful children, Meghan age 10 and Jacob age 7. Right now I am a homemaker, though full-time employment outside the home was my norm for many, many years. I am a daughter, a sister, friend to many and Facebook-er extraordinaire! Thanks to social networking, I’ve now had some practice sharing my stories publicly, which eventually brought me one step further, to the blog you are now reading.

I probably don’t need to tell any of you that life constantly throws changes our way. I seem to be more on the lookout for them now, but in my younger years, I felt like I was playing a good game of dodgeball on a regular basis. When I couldn’t dodge it, I attacked it head on and then just when I was getting cozy and comfortable in the knowledge that everything was going to be alright, WHAMMO, I’d be hit again. Two years ago, though, I got hit with a real whammy that literally brought me to my knees.

I have Cystic Fibrosis. For those of you who don’t know what CF is, let me enlighten you. Technically speaking, Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • Clogs the lungs and leads to life-threatening lung infections; and
  • Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

As I said, that is the “technical” definition of CF. If that’s all there was to it, I wouldn’t be writing this blog. For me, CF is a source of constant change in my life. It’s the tornadoes, the hurricanes, the tsunamis all rolled into one. The changes it brings often cause devastation and despair, but also bring comfort and cleansing as God brings me through each little storm.

Two years ago, my life seemed darn near perfect. I had it all, a husband who I adored, two beautiful, healthy kids, a two-story in the suburbs, a job I loved and a boat to sail our worries away on sunny weekends. Sure I battled my health from time to time, after all I was diagnosed with CF as an infant; but I went to my doctor’s appointments, took my medicines, made it through the semi-harrowing experience of premature birth with both my kids and thought I had it handled. I was speaking at engagements for the local Cystic Fibrosis Chapter on how to succeed living with Cystic Fibrosis. I mentored parents of teens with CF, led walk teams, hosted and chaired fundraising events; I was the poster child for what every young child/teen with CF should strive to be.

And then the bottom dropped out. In October of 2010, I contracted a nasty lung infection that put me in the hospital for several weeks on IV antibiotics. I had been on IV antibiotics before, but this infection really threw my body for a loop. No matter what medicines we tried, nothing was getting resolved. My lung function, which happens to be a very telling value for determining the longevity of people with CF, was getting lower and lower and no one could figure out why. Additionally, there were a host of new issues cropping up, CF-related diabetes (insulin dependent), CF-related arthritis, liver damage. I even contracted an aggressive gastrointestinal bug called CDiff because the IV antibiotics were killing all the good, normalizing bacteria in my gut.

Over the next few months I saw life as I had known it slipping away. I had to quit my job and apply for Social Security disability assistance, I had to drop out of all of my chairing, speaking and fundraising duties, I could no longer cook a meal, clean my house, or commit to anything with anyone. All my time was spent taking shots and pills and dealing with the next medical storm life wanted to throw my way.

About half way through 2011, Bob and I realized that life as we knew it was no longer. We had to come up with a new plan, one that included less costs, less income, more maneuverability, more flexibility for our family for the future. We sold the boat, cut back on the extras where we could like cable and cell phones. We made a very difficult decision to put our “two-story in the suburbs” up for sale to try to find something more economical and more accessible without stairs. After looking at several homes for sale in the local markets, Bob and I came to the realization that we needed to build a new home, customized to meet our family’s and my health needs. We made the difficult decision to leave our hometown and to build a new, smaller, one-story home closer to family and friends. Amidst doctors appointments and hospital stays, we researched builders and signed a contract with a local builder who we had heard good things about. Little did we know that God was about to throw us into the heart of another storm.

With the economic downturn and the real estate market slowing considerably, we were ecstatic when our house sold in just 35 days! That swift turn of events also left us scrambling though, as we had just signed with the new builder and needed to establish residency in our new city so that we could start the kids in school that fall. The people that had bought our home were very anxious to get in and the house closed quickly, in less than 45 days. The builder recommended a new two-bedroom condo development where we could reside temporarily while the new house was being built. “6-8 months at most,” he told us. We could do anything for that long, we figured, we would make it work. It was 5 minutes away from our construction lot which made it very convenient for Bob and I to keep an eye on the building and it was 5 minutes from where the kids would be enrolling in school, so no more school changes later on when we moved, which we were adamant about. We moved into the condo two days before school started. I had CF-related sinus surgery in early September and fell and broke my elbow in December. Despite these setbacks, I was getting into my new routines with medicines and shots. We were weathering the medical storms with the help of a kindly home nurse and we were adapting to asking for help from friends/family in almost every aspect of our lives. The kids were doing well at school, Meghan had even made the travel basketball team. Again, I thought we had settled into our “new normal and then another tidal wave hit.

Our builder’s business went under. And with it, he took our 10% deposit and our livelihood. Just like that. In a month’s time the company went from a Better Business Bureau rating of an A to an F. They were closing up shop and not returning our money because it was wrapped up in the business. Promises of our returned funds came and went. We hired an attorney on a small retainer who eventually told us we were standing in the back of a line of many unhappy customers and a long list of secured creditors. He did not want to take additional money from us to file a lawsuit just for us to get pennies and nickels back when the company went officially bankrupt. Advice from several other attorney friends was the same. We were out of luck. $20,000 in the hole and no better off than when we had started. Our fiscally responsible planning had led us down a path of destruction.

Looking back, I have no idea how Bob and I got through those darkest nights. There were times I just cried into my pillow at night because of the house situation, how much pain I was in, the look that told me he was more than overwhelmed with being the breadwinner, the caretaker, the parent for both kids. It was mind-numbing. We relied heavily on our faith to get us through. God was our saving grace. For nights we prayed that I’d find healing and peace. We prayed that God would find us a home and somehow help us to recover from the financial blow the builder had dealt. We prayed for help for the kids in dealing with the sadness of leaving their friends at school and in the neighborhood. We prayed that they’d make new friends and adjust to living in the condo in such close quarters. We prayed for miracles. He delivered. It was not always in the way we had anticipated, but He delivered nonethless.

One of the greatest blessings and sources of comfort he gave to us during this time was the people He placed in our path. Family, old friends  and new friends alike helped us weather our biggest storms and are still helping us weather the new ones today. Sometimes the people you need come from the most unexpected places.  I’ll talk more about these “angels of hope” in tomorrow’s blog. Stay tuned!

Quote for today: God doesn’t bring us through the storms to drown us, but to cleanse us.



Christ-follower, wife, and mother of two living and succeeding with Cystic Fibrosis. Come check out my blog 100% Chance of CHANGE that follows my life's journey, one day at a time. Stories about life, raising kids, marriage and relationships, family, my CF struggles, faith and so much more!

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