Meet Erin, IF you can get her to stand still for a second! This athletic, outgoing, and sassy mom is always “on the go”. Constantly carting around THREE KIDS UNDER FIVE and getting “it all done” with ease. Erin’s personality fills a room; she makes you want to sit down and listen to her stories and experiences. Her experiences are nothing short of unique and touching. Erin has a beautiful daughter (Lauren) who has a joyful personality, a loving heart, and Cystic Fibrosis.
This is Erin’s story of discovering an unforeseen diagnosis and learning how to live her perfect life with the challenge of raising a daughter with CF.
Smarty Mom Quick Facts:
Mom of: Lauren (5), Brennan (2 1/2), Tucker (16 months)
Married to: Christian for 8 years
Years in Charlotte: 5 1/2 years
When did you discover that you and your husband were both carriers of the Cystic Fibrosis gene?
We first discovered I am a cystic fibrosis (CF) carrier when I was 9 weeks pregnant with Lauren, and my doctor in Durham did routine blood work which included a CF carrier test. When we got the news – only slightly shocking when you consider 1 in 25 caucasians in the US are carriers – we were then given the option of having my husband, Christian, tested as well. After some ridiculous fumbling of his blood test by his doctor (they first did a cholesterol test instead – really????), we finally discovered that he is also a CF carrier. I was roughly 13 weeks pregnant.
How long after discovering your were both carriers, did you learn your first born Lauren) was CF positive?
Upon discovering Christian and I are both carriers of the Delta F508 mutation of the CF gene, we made the decision to have amniocentesis done to see if Lauren would have the disease. If both parents are “silent carriers” of the gene, there is a one in four chance the child will have the illness, a one in two chance the child will only be a silent carrier, and a one in four chance the child will not even carry the dreaded recessive gene. After an agonizing wait for results, I found out at exactly 18 weeks pregnant Lauren would have cystic fibrosis. It was the worst day of my life to date, and I remember the phone call like it happened yesterday.
Many people don’t fully understand CF. What is the disease and how do you cope with it as a family?
I am glad you asked this as so many people confuse cystic fibrosis with other disorders such as multiple sclerosis, which is so very different. To paraphrase Lauren’s doctor, George Retsch-Bogart, at the UNC CF Center in Chapel Hill, cystic fibrosis is an inherited disorder affecting the mucus secreting glands of the body. CF is most damaging in the respiratory tract and lungs where thick mucus obstructs airways causing chronic injury and acute pneumonia. The gastrointestinal system is also affected due to inadequate production of pancreatic enzymes leading to malnutrition. CF is a progressive, life-shortening, terminal illness with a current median life expectancy of 37, although statistics I read recently state that 47% of individuals with Lauren’s specific mutation do not live past age 18. As her illness progresses, it is reasonable to believe she may need lengthy hospitalizations and transplantation of her lungs. Currently, there is no cure for CF.
Cystic fibrosis is not what I would call a “visible disease”. It doesn’t affect Lauren’s cognitive health, and she participates in school and sports just like all other “normal” kids. She attends public school in a traditional classroom, she participates in dance at the Y, and she spends her summer on our neighborhood swim team. In other words, you would not know she has CF unless someone told you. Although the diseases are very, very different, I often compare CF to diabetes in that you do not look at someone with diabetes and “just know” there is something different about that person.
Lauren’s daily regimen is actually rather light right now, as her health is amazingly good. She takes digestive enzymes in pill form before all meals and snacks to avoid malabsorbtion of food. She takes an inhaler and nebulizes hypertonic saline for a half hour each morning to moisten the secretions in her airways. She also must wear her percussive vest for a half hour at least two times per day to help remove excess mucus from her chest. Her health is followed closely by her team at UNC – her pulmonologist, clinical nurse, respiratory therapist, dietitian, social worker, and physical therapist. We also try to take precautions to keep Lauren away from cold and flu germs, as repeated respiratory illness is a leading cause of airway injury.
In spite of all of this doom and gloom, as a family, we cope with Lauren’s cystic fibrosis by living our lives as normally as possible. The birth of Brennan and Tucker took the focus off of Lauren as a “sick kid.” Before the birth of the “Brothers”, as we call them, Lauren’s illness was one of the first things I would tell a person about on first meeting. Now I’m much more apt to tell you I have three kids, two of whom are rowdy little boys born only 15 months apart. In other words, our best coping mechanism is to make Lauren’s illness part of what we do, instead of who were are.
What was your biggest challenge as a couple and family after hearing the diagnosis?
The biggest challenge for Christian and me after Lauren’s diagnosis was trying to get on the same page with our coping styles. I like to talk and talk about things (no surprise to those who know me!) whereas Christian suffers in silence, like many men. We are constantly mindful that the divorce rate is statistically higher for CF parents than the average married population.
What were the days and weeks after Lauren’s birth like for you and your family?
The days and weeks following Lauren’s birth were probably not much different than the days following the birth of many first-borns. I was crazy, sleep deprived, and cried a lot! I think Christian wondered what he had gotten himself into! I never really felt any different than I think most moms feel with their first child. It is all I knew at the time. I think I would have felt more overwhelmed by the extra steps I had to take if I had a previous experience with childrearing to compare it to.
How do you explain to Lauren her need for extra medical attention and care?
We explain the medical care to Lauren in the most matter-of-fact way possible. We call cystic fibrosis her “special problem,” and tell her the extra things she does will keep her from getting sick. Period. I think approaching the care in a practical, “this is just what we do” way is the best means to keeping emotion out of it for Lauren. I do dread the impending years, however, when she will start to understand more…
Today you are a volunteer for the Cystic Fibrosis Foundation. What are ways people can become involved and learn about upcoming events and fundraisers?
There are many ways in which people can become involved with the Cystic Fibrosis Foundation here in Charlotte. The easiest way is to go to the website (www.cff.org/chapters/charlotte) to see what is on the calendar. The next event, I believe, is Rockin’ for the Cure at Amos’ on September 25th. My favorite event is the Great Strides Walk held each year at Gateway Village in mid-May. The Great Strides website for the 2011 walk should be up and running in the next month. You can register to walk solor or join a fundraising team. This is the event our family tries to do regularly each year; one year I attended only weeks after Tucky’s birth. You can always contact the CFF directly at email@example.com for more ideas. The CF Foundation is a great charity whose model is emulated by many other organizations. They are instrumental in the research ongoing to find a cure for CF and have earned four stars on Charity Navigator.
Do you have any advice for families dealing with a CF diagnosis?
I feel strange offering advice to families dealing with a new diagnosis because I hate to make it seem like I have it all figured out! I can only speak to what has worked for us. Listen to your doctors and follow their prescribed regimen. DO NOT Google CF on the internet and read all of the nonsense that lives out there. Stay positive for your children. Keep their lives as normal as possible. Surround yourself with people who genuinely care about you.
Favorite “mommy time” activity?
Long runs or long swims. Power Hour at the Harris Y. Plenty of time with the girls and a good glass of wine.
Favorite girls night out spot?
Cantina 1511, Dandelion Market, a good friend’s couch in sweatpants…and more wine!
Best place to eat out with the whole family?
Zio, Brixx on Fairview, TacoMac may move up the list quickly.
Actually, my favorite place to take the kids is to the playground behind St. John’s Episcopal Church. Great for little kids – no swings, far from the road. Several fenced areas with equipment, so I can keep my eye on everybody. Plus it is always very quiet.
Mini-van or SUV?
Mini-van! I drove an SUV for the entire first year of Tucker’s life, and it was terrible. I couldn’t even fit the double stroller in the car. I wore poor Tuck in a Bjorn until he was almost a year old! The day I got my Odyssey, life got infinitely easier. I like to say that I stopped looking cool somewhere around child number 2 anyhow, so I might as well drive a mini van!
Best book you’ve read lately?
Some of my favorites…”The Glass Castle,” “Water for Elephants,” “The Time Traveler’s Wife”.
I could not live without my . . .
Wonderful, reliable babysitters (shout out to Jesse and Julie!), my running shoes, my MacLaren Twin Techno, the Sleepmate sound machine in the Brothers’ room, my family and friends.
Best thing about raising a family in Charlotte?
Charlotte is such a great place to raise a young family. It somehow manages to combine the best qualities of both a small town (community) and a big city (opportunity). And we have some really, really good friends.
Best kept secret in Charlotte?
This one is hard…I honestly couldn’t think of anything that didn’t have to do with food! Not sure what that says about me! Here are a few: Zio for family dinner (and chocolate cake), Owens Bagel and Deli for post-Charlotte Jr. Gym lunch, and the Meathouse for making me look good at Supper Club. (My husband is obsessed with the Meathouse.) I asked some good friends if they had any non-food ideas, and they suggested Ivy & Leo for AFFORDABLE trendy clothes (thanks, Jessica) and Southend Exchange for unique consignment furniture (thanks, Erika).
We have another giveaway from our friends at the Yiasou Greek Festival:
Two lucky Smarties will win a Prize Pack including (2) admission tickets and (2) Be Our Guest Meal tickets – over a $50 value! Click here to get all the skinny & to register. Good luck, Smarties!