by Tonya Egelston
Life is a beautiful struggle.
This is a beautiful family with a house full of love. We are so humbled to meet mom, Tonya at our Mother’s Retreat.
Our story started in 1994, high school sweethearts. Married on June 10, 2000. We knew we wanted children and excited to start the next chapter of parenting. In 2001, our beautiful daughter Rhionah was born. She was 6lbs 12oz, she was just perfect and healthy. Cayden was born on May 22, 2003, a little boy weighing in just over 7lbs. The perfect blessings a boy and a girl it couldn’t get much better than that.
It was our 3rd wedding anniversary when I received the call from the pediatrician. She explained there was the new Newborn Screening in NY, and it shows Cayden tested positive for Cystic Fibrosis. She started asking questions about Rhionah then 21mos old. I explained I wasn’t familiar with CF, and hadn’t had any concerns with Rhionahs health or anything. Ill never forget the moment they said kiss her and if she tastes salty that’s usually a main sign she also has it. So, of course as any parent would, I kissed her, and tears just rolled down my face, yes she too was very salty.
When Rhionah & Cayden were diagnosis, we recall not knowing what the future would hold. It was so scary to hold your babies close, in a room full of Drs hearing the words progression, life expectancies, sports and activity may be limited….that made us wonder what time would bring for their health and our family. As you can imagine we were taken back & trying to work through the emotions, along with trying to be optimistic. We wondered if a cure would be found. What new medicines will help our children live stronger, better, and longer lives.
Our life philosophy had always been “Everything happens for a reason”, so with that we decided to find the why, and the way to cope and power through the storms. We were going to be the difference to ensure and made every effort to make CF stand for “Cure Found”. We got involved in fundraising activities, some close friends collected money and we went to the nearest walk. This is what we knew we needed to do. So we did! We became involved in Fonda Great Strides in May of 2004. We had to make every effort to make a difference for not just our children, but, for all those who are battling CF. Fast forward to 2019 our Fonda Great Strides has been going strong for 16 yrs now. Our family has grown from 2 to 5 children. We followed our dreams of having a big family. We waited 6 yrs to decide if it was in our plan to move forward. We contemplated, for awhile, but we came to the conclusion that this is what we needed to do and if we did not, then we were allowing CF to win. That just wasn’t about to happen in our life. We were in control, we were leaving it in the hands of what was meant to be and we were ok with that. It was our family’s decision. We talked with the kids and we moved forward. Each pregnancy we never found out what we were having and we never did further testing to determine the CF status. Onaleah- 9/carrier, Easton-6/no cf gene, Reil 3/carrier.
Rhionah and Cayden are independent, confident; they are athletes, animal lovers, and powering through life. Rhionah is now graduated from HS, heading off into the field of beauty in Sept. She hopes to carry on her passion with horses and own her own boarding facility one day. She has a steady boyfriend for 16 months, is happy, and making the most of her life. Cayden moving into his Junior year and driving, he’s a great athlete, he is working hard weight, training with a trainer to gain more strength and muscle so he can be his best. He loves golf, basketball, baseball and track and does his best despite the ways CF tries to hold him back. They both have CF related liver disease, and Rhionah has had many more complications with her liver and spleen. Cayden had a g-tube to aid in gaining weight. They are on a daily regime of medications, nebulizers, and treatments. Their lungs and PFT’s have been exceptionally good throughout their journey thus far in their lives. They have been visiting the CF clinic here in Albany NY since 2003, every 8 wks.
We are blessed to have an amazing team of Drs, family, Friends, and to live here with amazing communities surrounding us and providing support the last 16yrs. Each one played a key part in our world of CF.
I could go on with the details of how CF has tried to restrict the children or our family, the hurdles we have jumped over, tripped up on and those we broke through. But our story has many chapters, as does yours. We have been strong advocates that it’s all in how you power through. It’s not about the diagnosis it’s about how we face it head on, how we decide to spread awareness, how we handle the challenges, and not let them defeat us. We decided early on for us, we couldn’t keep the kids in a bubble; sure many times we were scared, we wanted to but…..we had to keep it real. We never wanted them to allow CF to define them, never hide behind this part of who they are, we wanted them to live, to experience everything they could without fear they couldn’t, or shouldn’t. We have met some wonderful families along this journey, we have been involved with so many CF activities, lucky to be apart of amazing foundations supporting families with CF. We have heard others stories of success, sadness, hurt, and happiness. The Mothers retreat in Montana- “We Walk Together” is one of my fondest memories. This was the first time I could gather with others affected by CF and truly relate. The tears flowed uncontrollably with so many bottled emotions, so many fears released, and so many friendships gained. I traveled with other moms from my area, we met people from so many other states. We gathered to become one and that we did. Soul sisters forever. All of these moments and experiences have and will continue to help define our journey.
I am confident we haven’t done it all right, but feel proud of what we have done. I have moments I feel sad thinking I could have done this or that, but in the end yes its exhausting, its hard, its emotional, my husband and I both work full time jobs, but we find our balance. We find the beauty, and the determination in our children’s eyes, this makes us smile and fight to give them the quality of life they so desire and to make the most of each breathe of each day! Being their mother is the best blessing life has to offer me. They are the hero’s in our story and continue to teach everyone around them about strength, determination and perseverance.
“Life is a Beautiful Struggle”
