To start I am honored that the McKee’s have asked me to one of the first contributors of their blog. I told Jarrod when he asked that I am not near as talented with words as I am at showing a pig. You see there are few things in life our family is passionate about agriculture; we feel it is important to raise our children showing livestock and being active in agriculture. The other is raising awareness and funds for Cystic Fibrosis.
We have just returned home from Dalaney’s trip through the make a wish program. This was an awesome experience that was only possible because of the Cystic Fibrosis diagnosis. Dalaney’s wish was to go to the Houston livestock show and rodeo to be an honorary judge at the pig show. For those who do not know pigs have been her passion from the time she could walk. She has been showing since she was 4, so she has years of experience behind her. She did an awesome job in the ring by placing the Poland China barrows with confidence. This alone gives a parent a sense of pride. If you haven’t ever watched a pig show, after a judge has placed the class of pigs they will take the microphone and talk reasons as to why they have placed the pigs the way they have. Dalaney also did this with a sense of confidence that was awesome to watch. When we talk about the HLSR there aren’t just a few pigs.
This is a show with over 2500 head of pigs that exhibit. What an exciting thing make a wish does, allowing kids with life threatening illness be “normal” for a few days and do something that they may not possibly ever get the opportunity to do otherwise. I am a firm believer that God brings people into our lives for a reason…each and every person. I think Dalaney’s make a wish was to bring people into our lives that will be here for a long time.
Our family chooses positive thinking when we talk about CF. I do not like one phrase often used with certain letters (FUCF). For me this gives our children/ loved ones who are battling this disease the wrong impression. Its hostile and its allowing CF to rule you instead of make the best of it. God only gives the hardest battles to his strongest warriors, keep that in mind when you want to say those certain letters. Instead, why not look at CF and the good it has brought to your life? Guess I just like to be a glass half full kind of girl. Don’t get me wrong CF is not always full of butterflies and rainbows and unicorn farts. It’s a battle every single day. It’s hard and it challenges you but think of the bond you get to experience during those countless hours of time when you’re doing treatments and you develop the routine of “pitty pats”, nebulizers or snuggle time because they don’t feel great. Those are pretty awesome moments as parents of children with “special needs”; we try not to take for granted.
Dalaney’s journey started in December of 2000 when at one week old she had dropped 2lbs and was diagnosed with failure to thrive. Every other day, I would take her to the pediatrician and weigh her, nurse her, and then weigh her again to make sure she was getting enough to eat. When she was three weeks old she developed what we thought was a cold and the pediatrician’s office continued to tell us for three weeks to let her work thru it to which she ended up in the hospital diagnosed with reactive airway disease. This starts our hospitalizations every six months. Not to bore anyone we continued to battle “colds” or “pneumonia” until at 14 months we decided to take her to see an allergist who when D came up with RSV asked us if anyone had ever talked with us about Cystic Fibrosis? At the time not everyone had internet at home we asked Bret’s best friend to look it up and print off the symptoms for us and low and behold she was a text book case. We went back for a recheck of the RSV asked a different nurse practitioner about the possibility of CF and we were told “I don’t think that is what it is but we can test her anyway” (that was a Monday). We had her tested on a Friday again the next Monday and again one month later at our initial Riley apt with Dr. Weist. My point is that every single day, YOU are your child’s strongest advocate! If you feel something is wrong push the issue. If you feel it’s unnecessary then get all your facts straight and present them in a calm cool manner. I also encourage you to make sure your child is an independent caregiver. Believe it or not there will come a time when “Jane” goes off to be an adult and you can’t go with them to take care of them. We often tell D. “It’s your body, it’s your health, and we can’t force you to be compliant.” If you haven’t heard compliancy is a huge issue in the CF world.
As a glass half full kind of girl, I believe one day we will have the cure we are all so desperately seeking, wishing, and waiting for. Until then wise words from a dear friend who battles her own children’s medical issues we all need to “keep going, keep working, keep educating and keep making a difference”.
The Vickrey Family