I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Wednesday, February 19, 2020

Letter to a newly diagnosed family


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  




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