WHEN YOU HAVE TO FIGHT FOR YOUR CHILD
FINDING MY MEDICAL MAMA TRIBE, featuring the Roney family
I started writing this in November. I'm not sure why it has taken me so long to publish, but what started out as an informational post turned very emotional.
Let's start from the beginning.
When Emaline was born with complications, we were finally home from our month long stay at the hospital. One day, I came home to a card and a bag of goodies on my front doorstep. It was from a sweet friend of mine who had also had a daughter a few months prior. Her words were really kind and encouraging, and I'll never forget how yummy the muffins were (still crave them, actually).
As the month went on, this SAME friend continued to reach out and check on us. We still had a lot going on. Emaline was on a feeding tube and had a PICC line, which meant we were sleeping 30 minutes at a time, 24 hours a day, because of her medicine schedule. I was basically a nurse at this point.
The fact that someone would go out of their way to check on us really meant a lot to me. One day, she mentioned via text that she knew what it was like going to the doctor all of the time (at this point, we had 2-3 appointments a week).
At that moment, it hit me - my stomach dropped. Something must be wrong with Desi.
I carefully asked her what was going on, and she told me: Desi had Cystic Fibrosis. I had no idea, which wasn't a surprise because they hadn't really been telling anyone yet. My heart broke for her and her family. I hated the thought of another mother having to go through any ounce of what I'd been through.
Though our children's medical situations are completely different, we've both endured a lot of trauma that comes with being what I like to call a "medical mama." It's extremely traumatic to learn that something isn't right with your child. Yet, it's a harsh reality that a lot of us face.
As a mother, you want so badly to make everything right. But you can't. There literally is nothing you can do during these moments except to pray for strength and be grateful that they are still here.
Jamie, Desi's mama, made the decision to fight for her daughter. Did you know that the US government simply does not fund any Cystic Fibrosis research?! Therefore, everything that is done to try to find a cure has to be privately funded. I admire Jamie and her family and all that they do/have done to fund CF research. It's amazing to me. They are SO close to finding a cure. Desi's life expectancy has already jumped years thanks to this research.
As for my tribe of medical mama's, this is only the first of many I'd love to feature.
MEET DESI, the adorable 2 year old with Cystic Fibrosis. Meet her out in public and you'd never know that in addition to taking 24 pills a day, she spends 1-2 dedicated hours doing breathing treatments. Every. Single. Day.
I asked Jamie share a little bit of their story:
August 1, 2015 was a special day to my husband Ross and me, our daughter, Desi, was born. Following her birth, we began adjusting our lives to all that a baby brings- How do I establish a routine? Do we have enough diapers? How much coffee can this pot make? Then on August 10 all priorities shifted and our lives changed forever. We were told our little baby had cystic fibrosis, a life threatening genetic disease that affects the lungs and digestive system. CF causes a build-up of thick sticky mucus to form in the lungs that progressively limits the ability to breathe. There is no cure and the average median life expectancy is 38 years old is what they told us.
It was the first time we as parents ever wanted to take something away from our child. We went home to absorb all the difficult news that had just been dumped in our laps. It was as if we had already lost years of memories with Desi and she was only 10 days old. Plus, this disease was completely new to us. Ross and I didn’t know how to care for a child that had special needs, daily special needs at that. We felt powerless and frightened but under it all we were silently determined to learn and ‘check every box’ we needed to to help her thrive.
At the beginning, it felt like time moved at half speed. Like when you start a new job and your just counting. down. the. hours until you can leave and fill your brain with something your familiar with. It felt as if that time would never come though. Being a new parent comes with it’s own series of challenges and then add on a disease where each daily CF medicine and treatment must be executed in a very specific way, to ensure it is beneficial,and it is easy to feel overwhelmed. However, we slowly began to gain our ‘sealegs’ and feel comfortable in how we were doing it as well as why we were doing what we were doing it.
Every day for Desi is filled with multiple breathing and airway clearance treatments, 18 pills to help absorb fats and nutrients from food, a diligent high calorie diet to help her body gain weight and regular exercise to strengthen her bones, and help increase lung function. All of these extra steps use hours that could otherwise be spent playing, running and acting like a typical toddler her age.
It can also be very isolating as it is the only disease as individuals with cystic fibrosis cannot be around each other for risk of spreading a variety of very harmful bacteria between each other. Germs can stay in the air as droplets and then be inhaled in by another individual with CF who then grows that germ in their lungs. Making it impossible for Desi to have playdates with other kiddos who are experiencing the same life she is.
While Desi is compliant with the treatments, and has up until this time been able to avoid hospitalization, doesn’t mean that each day isn’t a fight for her life. Everyday takes a lot of work to keep her on this trajectory. Of course we would say cystic fibrosis is not what we would have wanted, but we now notice and appreciate all the ‘little’ moments in life more than we would have before…..every breath is a blessing. We are extremely encouraged by the progress that has been made and ready to take on this disease and kick some CF seat!
Because of folks like Ashley who share our goal and help fund research we feel the throttle moving in the car that is Driving Miss Desi to that cure!
HOW YOU CAN HELP
With all of that in mind Ross and I both promised each other and Desi that we would do everything in our power to give her what she needed, we’d share her story and work to fund a cure for cystic fibrosis! Unfortunately, with CF being an orphan disease (less than 200,000 live with it) it doesn’t receive government funding for research. Every medication and treatment that has come along for Desi is here because of individual donations and corporate sponsorships sent to the Cystic Fibrosis Foundation, the leader in funding a cure. With this knowledge, Ross and I knew we would have to bring money in to help Desi, and others living with cystic fibrosis. That is where the name ‘Driving Miss Desi’ was born. We were going to Drive Miss Desi to a Cure for Cystic Fibrosis! It was the name of our team for many fundraising events and has morphed into a business for us and another vehicle to fund research while bringing awareness. DrivingMissDesi.com is an apparel and goods brand committed to telling Desi’s story, encouraging others and illuminating a positive message of hope for more breaths and a cure. Every item purchased sends money to the Cystic Fibrosis Foundation- money to be used for research, family support, legal and insurance questions and, of course, a CURE!
There are SEVERAL adorable shirts for adults, kids, and toddlers available in the Driving Miss Desi shop.
I LOVE wearing my Breathe tank for casual days or even working out. It's so cute and cozy. Mine is an XXL and I like the loose fit!
Thank you for supporting a fellow "medical mama" - this is such a great way to support Cystic Fibrosis research and give Desi, along with other kids with CF more breaths! I wrote this to help raise awareness, but also to let you know that even though I have a daughter with CHD, that's not all I'm fighting for. There are millions of other mama's out there who have children with medical conditions, diseases, cancer, etc.
We all have one bond: we will never stop fighting for them.