Good morning readers,
We’re doing something a little different today.
Today I want to share a story with you; a story that, I hope, will touch many of your lives.
It’s a story about LOVE, life, and struggle.
It’s a story about commitment and determination.
It’s a story about two VERY special people in my life.
I recently asked a friend* to write an article for me; one that would tell the story of her life. You see, Elizabeth is a mom, just like me. She has a young daughter and another baby on the way.
The difference between her and I?
Her husband lives with Cystic Fibrosis (CF).
The Story:
Chris and Elizabeth are no strangers to long days and nights spent in the hospital. Chris was diagnosed at birth with Cystic Fibrosis (CF), a genetic life-shortening disease that affects the lungs and digestive systems. It causes thick mucus to build up in the body and clog certain organs, particularly the lungs and pancreas. As a result, Chris regularly spends 2 to 3 weeks at a time (2 or 3 times per year) inpatient receiving IV antibiotics and rigorous breathing treatments in the attempt to fight pulmonary infections and keep his lungs from deteriorating more rapidly.
Today the average life span of a CFer can be in the mid to late-30s. Chris is 34.
Chris and Elizabeth met in high school in 1993 in Houston and were high school sweethearts. Even in their teenage years, Elizabeth would spend her free time at the hospital with Chris while he was inpatient and they would furtively roller-blade the hallways of the hospital basement or have a date in the McDonald’s on the first floor of the hospital. It was simply a part of their lives. Chris was told during childhood that he would likely not live to graduate high school. He did. In fact, he overcame many health obstacles and earned his Bachelor’s Degree in Houston and then went on to earn his Master’s Degree in Physical Therapy at University of Texas Medical Branch, all with his wife Elizabeth by his side.
They married in July 1999, and each of them worked while the other finished their college degrees. Every birthday, every Christmas, every anniversary that they spent together (often inpatient) was one more milestone that they never took for granted because they truly were never sure when Chris’ health could take a turn for the worse and those milestones would be no more.
Unfortunately, along the way nearly all of Chris’ CF friends passed away – some in junior high, a few more in high school, more still in college years. Chris had spent countless days in the hospital, playing games, watching movies, roaming the maze of hallways, with these amazing people. And then sometimes they would get an infection that the antibiotics simply couldn’t fight, or they would be on the waiting list for a double lung transplant, or they would unexpectedly have massive hemoptysis (coughing up blood) and their young life would be over far too soon.
Chris and Elizabeth moved to Tucson, Arizona in Spring 2007 primarily because the arid climate is far easier for Chris to breathe in, as opposed to the humidity of the south. They decided after the big move to also embark on the wonderful journey of becoming parents. Elizabeth was tested and found not to be a carrier of the CF gene, so they decided to move forward with the process of in vitro fertilization with a local Tucson clinic. Elizabeth gave birth to daughter, Gabriella (“Ella”) in July 2008 and she has truly been their dream come true. Because both parents must contribute the defective CF gene, Ella does not have CF herself. But being in the magnificently curious stage of any three year old, she has learned that daddy takes lots of medicines and he has to stay in the hospital for doctors to help him. Fortunately, their hospital has been extremely family-friendly to their situation. Things like understanding their placing Ella’s playpen in Chris’ hospital bathroom for naptime so it is dark and quiet, and bringing her a tricycle to ride up and down a deserted hallway to keep Daddy company. Chris is admitted for usually 16-18 days at a time, two or three times a year. During those difficult days of being apart, Ella and Elizabeth drive about an hour round-trip every day from our suburban home to be with him and keep him company; and Ella wouldn’t have it any other way, seeing as she is a complete daddy’s girl.
They have now decided to expand their beautiful family by one more precious child! Elizabeth is pregnant with baby #2, due in just two months on January 6, 2012. They pursued the in vitro process again and were so lucky that it worked on the first round. They can hardly wait to see the newest member of their family arrive, as we are waiting to be surprised on the gender this time!
FROM ELIZABETH: As a wife to a chronically ill husband, there are many challenges and fears that I face. Deciding to become a parent on top of that was a huge decision that we did not take lightly. Aside from the sheer financial strain of in vitro costs, we have to try and emotionally prepare our child(ren) for a life knowing that daddy is ‘sick’ and takes numerous medications and lengthy breathing treatments every single day. But as all parents know, nothing is guaranteed and we simply do our best to make sure that our children are loved beyond measure and will never doubt how deeply their daddy loves them and how much they were wanted before they were ever even born.
We try never lose sight of how lucky we are in this life – to have found the love of our lives, to be married for over 12 years when we weren’t sure if we would make it to our 1st anniversary with Chris’ health, to have our own perfect daughter filling our lives with joy, and another precious baby on the way. But if you are reading this and you happen to be so lucky as to have your health and your spouse has their health too, please take into consideration the following things which the CF community wishes everyone would understand:
1. Don’t smoke. Ever. Chris’ lungs are so fragile that even passing by a smoker outdoors (who falsely thinks that their smoke ‘dissipates’ enough around them in the outside air) can cause him to start coughing up blood within a few hours; this can result in being admitted to the ICU very quickly. Besides, if you are so lucky as to have a clean pair of healthy lungs, then please STOP WASTING them with a useless addiction. There are people, like my Chris, who would do ANYTHING to have your lungs!!
2. Be an organ donor! Visit www.donatelifela.org to register as an organ donor in Louisiana. Not only are many Cystic Fibrosis patients waiting for a double-lung transplant as their lungs deteriorate despite their best efforts, but in Louisiana alone over 1,800 people are currently awaiting organ transplants of all types, for patients of all ages and races. And please, tell your loved ones about your decision so they are informed. Being an organ donor does NOT interfere with life-saving medical care!
3. If you are wanting to teach your kids about community service and giving back to others, consider donating your talents or resources to the extremely worthy cause of Cystic Fibrosis research and fund-raising. The non-profit organization Cystic Fibrosis Foundation (www.cff.org) is a wealth of information and is dedicated to making CF stand for “Cure Found”. You or your family could do a lemonade stand, a car wash, a used toy sale, donate books to the children’s hospital, or show up at the next CF Great Strides walk to show your support! The Baton Rouge CF chapter has a walk at the LSU Coliseum on 4/28/2012, Lafayette has one on 5/5/2012, and Donaldsonville has one on 5/19/2012. I promise you that every dime donated to the CFF is a dime donated to the science of finding a cure.
4. Advocate for health insurance that does not exclude pre-existing health conditions. I am grateful to live in America, and I always will be. However, the healthy majority in this country do often not appreciate how extremely difficult it is for the chronically/terminally ill patients to obtain and maintain adequate health insurance. It is a true disgrace that next to worrying about my husband dying, the single most stressful part of our lives is adequate health insurance for his exorbitant health care costs. CF is not a disease that a person chooses, or an unhealthly lifestyle dictates. He works extremely hard every day to simply stay alive and in the meantime, America’s health insurance companies will exclude him for a genetic defect he had no control over. We do not want hand-outs, we want fairness in the insurance marketplace.
5. Take a deep breath. I mean really deep – fill your lungs up from the very bottom and then slowly exhale. Was that possible? Was that pain-free? Was it effortless? Did it result in a ten minute coughing fit? If not, then take a moment out of your day to savor and appreciate it. Because there are approximately 30,000 children and adults in the United States with CF who cannot do that simple act.
Wow. What a journey. I must say that I find inspiration in this story. As someone that takes an extreme interest in CF, I must say that Chris and Elizabeth are two of the most amazing, positive people I have ever met. They are such a joy to be around and are both truly passionate about life and parenthood. They make wonderful parents and I pray that they continue to have a long, happy life together.
Please take a moment to sit back and just be THANKFUL for all that you have, especially if you have a healthy, happy family. Be blessed, but also be grateful.
Chris & Elizabeth,
We LOVE you guys and THANK YOU SO MUCH for allowing me to shed light on CF and your personal journey with it.
XOXO!
-Brittany
