I anticipated the worst, and I truly grieved the loss of her innocence. It took months for me to feel confident that I could care for Lila and her chronic illness; but slowly, the darkness lifted. We were embraced by an incredible care team at Dartmouth. Lila's CF gene made her eligible for revolution corrector drugs. The enzyme replacement medication changed her appetite and growth. Lila was spunkier and healthier than ever!
With that all said, there is a daily grind to the life of a Cystic Fibrosis child. Fortunately, Lila took to her treatments, medication, and hygiene routine like it was "old hat." She understands that she has Cystic Fibrosis, and we talk about it openly in a matter-of-fact kind of way. Lila continues to surprise me every day with her willingness to participate in her health and it has truly made all the difference.
Lila took this past year to perfect her after dinner dance party skills- boy have we danced! She started ballet. She started ice skating. She learned to swim. She found her courage. She sits for 40 minutes a day to complete treatments. Lila can write her name. She can swallow 25 pills a day. She can ride a scooter, and Lila is the first to remind us that she needs her medicine.
When Lila was diagnosed, I did not expect to end up doing more of what we CAN than what we CAN NOT! Lila had an amazing year, and God willing, we will have many amazing years ahead. With that said, tomorrow isn’t promised to anyone so for now we choose today. We laugh. We dance. And goodness gracious we love!!!
Lila you are my winner winner chicken dinner, my Li-Lu lemon sauce and my absolute best friend for life. I wouldn’t change one thing about you, and we all love the CF right out of you!!!!!
***It is our mission to spread Lila's journey and to create awareness of CF. Lila will be turning 4 years old December 20th, and she has been a CF fighter for 1.25 of those years. We stand with Families, Doctors, Researchers, Scientist, Nurses, Friends, Supporters and all of YOU to continue the fight and crack the code! Until it is done... Please donate to the fight, please celebrate Lila's year and please dance!
Enjoy the video below. Lila's Year...