Meet Emilie, Mother Of The Month For June! 

Sometimes I can’t believe I’ve been a CF mom for only 4 years!  I say that because of all that’s happened in those 4 years.  Not only the regular milestones of a 4-year-old but also all of the amazing people & events in the Cystic Fibrosis community we’ve become a part of.

It’s hard to believe our son Kellen will be 4 in August.  Four years we’ve all been living with Cystic Fibrosis.  We will never forget the day we received the call from his pediatrician, Dr. Lemons. He was 9 days old when she called.  She wanted to be the first to tell me the results of his blood screen test. My husband Zeke was at work at the time, and our older son was at preschool.  I remember being so alone at that moment, clutching Kellen to my chest and crying in his nursery’s rocking chair just repeating the words “I’m so sorry.”  I felt so much guilt for “giving him cystic fibrosis.”  I called Zeke and just cried. He came right home.

We were devastated.  There were a lot of tears, tears of sadness, anger, fear, guilt, and feelings we didn’t even know how to process.

Looking back, I can say we spent much of the first year of his life sad and angry about his diagnosis but immediately after that phone call, we set up the appointments with the CF Clinic at our hospital, did the sweat test, got the enzyme crash course, met with doctors and leaned on family and friends for support.

Shortly after Kellen turned 3 months he started spitting up more than normal.  The more he ate (I exclusively nursed) he would begin to throw up.  His Doctors we sure it was reflux, but I wasn’t so convinced.  More tests, a trip to Boston’s Children’s Hospital, and a specialist at AMC, he was diagnosed with having a severe dairy allergy.  Within a month he had lost weight and was “failure to thrive.”  I was devastated and so stressed.  December 22, 2016, was the day we were given the diagnosis & were told he needed to be on a special formula.  Done.  We went straight to Target!  We saw an immediate change.  It was an early Christmas Miracle! He began to gain weight, thrive and we haven’t looked back!

Kellen has been doing great since that bump in the road!  He has maintained a healthy weight, always being in the 70-85% range, and is a great eater!

We’ve had our bumps or challenges with CF but those early days were the scary ones.

After the first year, we choose to get involved with the CF Foundation and their Great Strides Walk.  It was at that walk I was introduced to CF parents who were involved in advocacy which is where I found my voice as a CF parent. Having previous lobbying experience I knew I could make a difference and turn my sadness into something positive.  I finally stopped crying.  I began to meet other CF parents.  I talked more to my cousin who had a daughter with CF.  The community really welcomed our family.  I began to head up advocacy efforts on a state level and for the last two years, I’ve gone to the national CF conference in Washington DC, making lasting friendships with CF parents as well as receiving so much CF education!

After that first year, our family starting attending CF education events put on by our CF Clinic and CF foundation.  It was at one of these that I met two other CF Montana retreat moms: Mandi & Sarah.  They were sitting in front of me and turned around when I had asked a question to the guest speaker.  They spoke so highly of the Montana retreat and said “you have to go.”  I knew instantly this was something I needed to investigate!

My love for travel & eagerness to make more connections in the CF community ontop of knowing my soul needed some TLC, I decided to go.  I was so thankful when a local foundation was willing to pay for my travel to Montana!

Four years seems so long ago because I remember feeling so alone in that nursery!  After leaving the “We Walk Together Mother’s Retreat”, I felt the complete opposite.  Not only did I meet other NY moms, but I’ve cherished the connections with moms from across the country.  Spending uninterrupted time sharing our stories & tears which amounts to sharing a secret bond that feels so special. In my cabin I was able to meet 3 moms from Utah, I truly came to adore.  Talking to and receiving messages from them is awesome. I find myself sharing a story of “my Montana CF mom friends….”  and I’ll be forever grateful for that.

I look forward to returning to another retreat in the future! Montana was gorgeous as were the heart & souls of the women I shared the retreat with! Hearing so many stories, especially of diagnosis, for the first time I felt “lucky.” To know, at two weeks old, the battle we were going to fight…. it dawned on me how different it could have been. We all have our battles, often as moms, internal battles because of all that we bear emotionally. I know I’m not alone and that I can relate and reach out to so many in our special community at any time!

Lastly, June 1st marks day 80 of our COVID quarantine. I feel obligated to share my feelings on this. Both my husband and I work full-time. Our older son is in 1st grade and Kellen in daycare/ Pre-k. That all changed March 13th. I began working from home, homeschooling, and made the decision to quarantine with the boys, my husband the only one leaving the house for work. We are an “on the go family.” This quarantine has been very difficult emotionally. The beginning was so stressful, the feeling the world was closing in! This invisible virus and its unknown abilities! How could it affect us, Kellen?! School, working from home, navigating groceries (and toilet paper!!), ways to have fun, and finding time for myself every day to run for my mental and physical wellbeing were all important things to figure out!

Then we got into a groove.  Everyone has stayed healthy, active, and happy.  I’ve learned a lot about how I cope with stress.  I’ve also learned I’m not cut out as a stay at home, homeschooling mom! God bless the teachers!!  But the “sacrifice” was 2nd nature. We will do anything to keep our kids safe, especially our CFer!  We will go to the ends of the earth and back for our kids.  I felt even more prepared as a CF mom.  Its been nice not having to miss out on things or the kids miss out because everyone is doing nothing!

The last week, as NY has begun to “open back up” the stress has kicked in a little and I know we will go at our own pace.  I won’t fear.  I’ve enjoyed so much quality time with my children.  Hiking, outdoor adventures, board games, and swimming!  I’ve maintained this bubble for 80 days, & we can go longer!  I have this community to relate these feelings with and I appreciate that so much.  Remember we are all in this together!