Dear Newly Diagnosed family of a precious cystic fibrosis human,
When my daughter was diagnosed with Cystic Fibrosis at 6 weeks old I felt buried under the ruble of what I thought her life would have been. "Fortunately the sun has a wonderfully glorious habit of rising every morning," and slowly but surely this initial cloud of misconception cleared (quote by JC George). We managed together as her support system (including family, friends, CF Clinic team, and fellow CF families) to climb each challenge of meds, routine treatments, and nutrition. Now I see my teenage daughter soaring through life experiencing all things with arms wide open and it is in great part her Cystic Fibrosis that has molded her into the confident, brave, smart, fun woman she is! Since her diagnosis we have had three more children. Three of our four children have cystic fibrosis so we have a unique take on life and on cystic fibrosis.
Here are 3 beginner cystic fibrosis nuggets of life that we love and live by.
1.
Be an exemplary hand washer. Nothing prevents
getting sick better than clean hands. Simple, true, and easy to do!
2.
Keep enzyme supplies close always. For non pill
swallowers that means squeezable applesauce packs for the road, and bottles of
applesauce in your pantry always. However in a pinch we have used jam or
ketchup (the kid loved it). Pill swallowers should never leave home without
enzymes. Pass out extra bottles of enyzmes to family and friends whose homes
you frequent.
3.
Keep the end in mind from the beginning. When
physically and mentally possible you want a strong self capable human ready to
live with Cystic Fibrosis on their own to me this means they need to learn
three things from you as their parent.
a.
Routine, routine, routine. Find what works for
your kid and family and stick with it. Our families experience on treatment
routine and treatment responsibility is its own separate essay. Routine changes
many times as kid grow from infants to toddlers but never give up, keep trying,
and appreciate your efforts! It’s a big deal that you are dealing with!
b.
Positive attitude. The more accepting and matter
of fact you are as the parent of treatments being an essential part of a
regular day then the more your CF child we adopt that attitude themselves.
c.
Celebration. Taking care of your body is worth
it! Accomplishing that everyday for anyone is a celebration but particularly
those who have extra medical requirements tacked onto their regimen. Celebrate
your successes and talk positively about them. Cheer your heart out for your
baby and for yourself for helping them do challenging things! Let them hear you
speak positively and see you celebrate with them. Their attitude is most often
a reflection of yours.
It has also helped us to find positive cystic fibrosis role models. Through a fantastic CF podcast called Breath In we have met an inspirational Harvard gradudate, a Canadian farm boy who grew up to invent a life changing inovative vest (out of a sewing machine motor) for himself and his fellow CF peers, and many other mind blowing awesome CF success stories. The cystic fibrosis community is full of hope, kindness, and indiviudals and families who appreciate every breath of life. You got this! You can do CF!
Keep on the sunny side,
Kamarah Adams
