The Fighters Chronicles - Shealie Rain

My Story

This is my daughter Shealie Rain and she is a CF warrior. She was born October 31, 2012 sweet as can be and always smiling. I named her “Rain” because I want her to know that no matter what’s going on in life (whether it’s raining or it’s sunny, good or bad) you have to keep a good attitude no matter what life throws your way. 

When she was born she was diagnosed with a meconium ileus, which meant she was having zero bowel movements. At eight days old they had found a blockage and said they had to do surgery to remove part of the intestines and give her an ileostomy bag. She would have that bag for probably a year and later they would remove her whole colon. I am a single mom and I am so glad for all the family and support that I have because that was hard to hear. But of course I said yes, save my baby, do what we need to do to save her life. On November 8, they took her way. At this time, we still had no idea that she had CF. Playing the guessing game with your child’s health and life is horrid. After about 20 minutes she went back for surgery. I had a nurse named Casey come to me and tell me that she had Cystic Fibrosis. The one thing she said not to do was to Google CF and that they have better updated information and anything I needed to know, she would tell me. Those words will be with me forever. After speaking with Shealie’s nurse, her doctor and surgeon came out and informed me there would be no surgery today. I was confused and immediately responded saying, “no you told me this needed to be done, why why can’t you do it?” He said she pooped! Her blockage was finally removed naturally so they didn’t have to do surgery. They did give her a femoral line IV for nutrition because at this point, she had been seven days without eating or receiving any kind of nutrition. I have never been so happy and so sad at the same time. It was so hard to keep it together. I isolated myself just to stay focused on her. I didn’t call any of my family or my friends. I wouldn’t even let anybody come up to the hospital except for my mom. I was trying so hard to keep it together. I had to focus on her and whatever she needed. I felt I couldn’t afford to be an emotional basket case. I was and still am so thankful for my mom and I don’t know what I would do without her. We weren’t out of the woods yet; she was still very malnourished and very swollen. Although, her belly measurements had gone down, she was still so malnourished. Lucky for us, she was and always has been a really good eater and she didn’t waste any time doing so. When they gave her first bottle she ate it all  with no problems. She ate so much we thought she might get sick. I still wanted to nurse (and had been pumping the whole time) but we were worried that she would not latch on. Much to my surprise she did. Shealie began taking enzymes which would allow her body to break down food and her body to absorb the proper amount of nutritiants her body needs. On top of the enzymes, she had to start taking daily  vitamins and start daily nebulizer treatments. After a month in the hospital we were finally able to go home. The nurses there with me were so amazing to us. One of the nurses’ is a good friend of our family and later told me there were several times that we could have lost her. I know I knew that was a possibility but I also knew Shealie Rain was and still is a fighter. 

Shealie Rain is five years old now. She is very passionate, very friendly, very personable, very caring, and very organized. Shea loves to dance like a ballerina and she doesn’t care who’s watching. She will feel the music and will just move with such grace (sometimes) and passion. She loves people and loves helping anyone in need. She is caring and thoughtful. She loves playing and talking with people. She has never met a stranger, she’s always met a friend. I am known to be quite clumsy and every time I stub my toe or hit my head, Shealie seems to always make it a point to ask me if I’m OK or if I need her help. Her need to be organized seems to contribute to her ability to stay consistent with her daily medications and treatments. She hangs up her clothes, organizes her shoes by pairs, makes her bed, brushes her teeth, takes her medications, and does her treatments without having to be asked. Her treatments aren’t always fun and she doesn’t always like doing them. It causes her to get upset at times and she has to cry it out (who wouldn’t?) but she straps on her vest, wipes her tears, puts on her favorite t.v. show, and does what she knows she has to do. She is very responsible with her medication and if someone forgets to give them to her she will gladly remind you. If she’s playing hard and needs her puffer she can recognize she needs and will tell you. When you ask her what she wants to be when she grows up she will tell you a doctor, but she does not want to work around blood.  She says she wants to help people and wants to be a doctor to her doctors so when they get sick, she can help them feel better. She is as strong as they come and I am so thankful, lucky, and proud to be her mom. 

Photos Taken by Kevin Wurm