Sunday, March 28, 2010

Hayden's Heros

I wanted to share this story with you. Its written by my good friend from high school, Alyssa (Baldwin) Siler.

Meet my inspiration....

Hayden Presley Siler. Isn't she precious? Now don't let this picture of a sweet and somewhat shy looking little girl fool you. While she is every bit as sweet as the picture implies, her personality is better captured here.....
She's not yelling in this picture. There isn't a mean bone in her body. She is just crazy energetic and more full of joy than any toddler I have ever met. While there are some days where all that energy overwhelms this mama..... I love it. When I look back at her beginning and what she has been through in her short 3 1/2 years, all that energy suddenly becomes a reminder of her strength and endurance - of a spirit that refuses to let anything hold her back.
Every pregnant woman dreams of those first moments when their child is born. They dream of getting to hold their baby for the first time. They can't wait for the chance to study their little face. They just try to imagine the feeling of that instant and very special bond that only a mother and child can have.
I had all those dreams. But after a picture perfect pregnancy and delivery, everything went horribly wrong and suddenly, all those dreams vanished. Immediately after Hayden emerged into this world, the doctors noticed that she wasn't crying. Instead, she was grunting and, on top of that, her belly was extremely distended. I remember so clearly the nurse coming to tell me they needed to take her to the nursery to look at her while trying to sound as if that was the most routine thing ever. Taking her to the nursery to be looked over turned into needing to put a tube down into her stomach, which led to Hayden's pediatrician coming in my room with a somber look on her face. She explained to me that Hayden obviously had an intestinal blockage of some kind because her stomach was full of bile that hadn't been able to pass through. Then came the words.... "She's going to need surgery, Alyssa".
Ryan and I were prepped for the fact that it probably was a twist in the intestines that has formed during pregnancy. They would go in and correct it and that would be that. We would move on with our lives. They also mentioned something about meconium ileus and cystic fibrosis but didn't spend much time on it. The chances of that were slim and they didn't want to scare us.
So Hayden was taken by ambulance to Baptist hospital and Ryan went with her. I was stuck at Lakeside Women's hospital...without a baby. I finally talked them into releasing me early so I could be there when her surgery was performed. Even though I couldn't pick her up and hold her, everything within me was needing to comfort her. I needed her to know I was there.
When the surgeon was finished and came out to talk to us I knew. I knew it wasn't a twist. It was written all over his face that it was something more serious. Then those words meconium ileus and cystic fibrosis came up again. Only this time it wasn't in passing - it was a probability.
The meconium ileus had hardened part of Hayden's intestines so badly that they were destroyed. He removed about 8 inches and reconnected everything back together. He told us that the genetic testing of her blood would take about two weeks to come back with a definitive answer but that we should start preparing ourselves. Our daughter most likely had CF.
Here is a picture of her in the NICU after surgery. I look at this and still can't believe that's her sometimes.She was in the NICU for two weeks and, while she was there, we were visiting with doctors about what CF was and what it meant for our new baby girl - the baby I so desperately wanted to pick up and hold. I heard "thick mucus in the lungs" and things about her digestive system being compromised but all the information was kind of running together - until I heard "life expectancy of 37 years old". I think that's the moment something changed in me. I instantly had a sense of "that's what you think". In my head I was thinking "that is completely unacceptable". I suddenly had a determination to do something about it. It was here that I felt God telling me "I chose you. I chose you because I knew you would do something about it".
Shortly after the blood test came back and her diagnosis was official, Ryan made a decision for our family that we still adhere to today. It showed his strength in this difficult time. He said that we were not going to be a "woe is me" family. That isn't the way to live life and it wouldn't be fair to Hayden. All it would do is hold her back. So the decision was made - instead of putting our efforts into moping or feeling sorry for ourselves, we were going to do what we could to beat this ugly disease.
We took home a two-week-old baby and began giving her enzymes with a spoonful of applesauce before every bottle. We started chest PT and breathing treatments. We did everything we could to adapt. The truth is, we didn't know any different. It was our new normal.
While Ryan and I starting taking on roles and responsibilities within the CF Foundation's OKC chapter, Hayden was taking on a strength that was noticeable to anyone who met her. At a year of age, she reached up and took the nebulizer out of my hand. She was going to hold that for herself, thank you very much. Shortly thereafter, she graduated from chest PT to "the vest". She began wearing it twice a day and, despite the intense shaking, she was fearless her first time wearing it. At age two she needed to have blood drawn for her annual test to check for CF-related diabetes. I was prepped and ready to comfort her. When I heard a gasp come from her mouth I instantly starting singing her a lullaby. A few seconds later I realized that she wasn't crying. In fact, she looked at me and told me "You don't need to sing, Momma". While a felt of moment of extreme pride for my daughter, that moments also broke my heart because a two-year-old shouldn't have to be that strong - but Hayden is different.
At age three she started swallowing her enzymes. She takes three with every meal and they aren't small. In fact, I'm sure there are some adults that couldn't take them. At her last doctor's appointment when it was time for her routine throat swab she shocked me by opening her mouth for Dr. Reyes instead of doing her usual lock-jaw. I knew the swab scared her and that she hated it. After Dr. Reyes was finished she looked at me and asked "Momma, aren't you proud of me? I was a big girl!" I was thinking to myself "Hayden, you have been a big girl since the day you were born."
She is just now starting to ask me why she has to do breathing treatments every day. I'm not ready to tell her she has CF. I tell her that it is to keep her lungs healthy and, so far, she seems satisfied with that answer. She has not allowed any part of her routine to hold her back. She is the fiestiest, most energetic girl I have ever known. She is a force to be reckoned with and she blows me away with her strength.
I wish I could go forever without her knowing she has a life-threatening disease. I wish that Ryan and I could just keep raising funds and awareness of this disease without her realizing what all of it is for. I don't want something to change in her mind that tells her she's different from everyone else.
But the truth is....she IS different. She is different in her joy, in her compassion, and, most of all, in her strength. There is nothing normal about my sweet Hayden Presley, and of that I could not be more proud.

Alyssa and Ryan are extremely involved with the CF Foundation. They are SO SO SO SO close to having a drug that will make Hayden's life dramatically different. One thing that Alyssa is doing to help raise funds for the CF Foundation is printing a "Hayden's Hero's" Cookbook. There are over 250 recipes included. I know that you want one. And the good news is that you can get one for $20. ALL money from the cookbooks will go to the CF foundation and helping to get this drug into existence. You can leave a comment here (or email me or facebook or call..) if you would like one. They would also make GREAT gifts.. it is never too early to think about Christmas (you know my philosophy). And there are birthdays throughout the year. And everyone is always looking for great new recipes (even you men who read my Tasty Tuesdays so you can pass the recipes on to your wives (I KNOW you are out there).. this is for you!).


Pascha said...

Hey girl! I would love to buy one!