I know that most parents are biased when it comes to their children. We all think that our child is special, outstanding, incredible. I am no different. I believe that my daughter Lily is one of the most incredible children that I have ever encountered. Her maturity, her grace, her kindness and selflessness, and all of these qualities in the face of all of the challenges she has had to encounter, make me more proud of her then I can ever express.
When Lily turned 6 she had a Hawaiian Luau themed party. To this day she says it was her favorite birthday party ever. Not because she loved Hawaii, not because we had a pool and waterballoons and squirt guns, not because she got a lot of great gifts. This birthday party was Lily's favorite because it was the last birthday she got to celebrate with her best friend, her grandma, who died of lung cancer later that summer.
Lily and her grandma, Pat, did everything together. They loved each other so much and anyone who was around them could tell that they were never happier then when they were spending time together.
I would have expected most 6 year olds to be frightened by what was going on. by all the trips to the hospital, the nurses in and out of the house, the hospital bed in the living room, by watching their grandma get sick, lose her hair, lose weight, gain weight, not be able to walk, not be able to move without being in pain... but not Lily. She understood what was happening and she just wanted to spend as much time with her best friend as possible before she didn't have that chance anymore. When grandma was hot Lily would get her a fan and a cool washcloth to lay across her forehead. When she was cold she would move the fan and bring her an extra blanket. She would bring her water, or pepsi, or whatever she wanted to drink when she was thirsty. She would grab a bottle of lotion and rub her grandmas feet when they hurt, or just climb up in the hospital bed and cuddle with her every chance she got.
When Pat passed away that August Lily was very sad but she handled it better then most of the adults in our family. She just kept telling us that Grandma would always be with us and she would always be watching over us all. She has also made it her mission to make sure her younger sisters remember Grandma. She's always telling them stories and showing them pictures.
Seven months later is when I first started noticing the changes in Lily. She had gotten a pretty bad virus and been sick for about a week. She seemed to recover from parts of it but she still seemed worn out. She had circles under her eyes and she would fall asleep on the two mile drive home from school, or else laying on the couch watching tv after doing homework. She had always been petite so the few pounds she lost while she was sick really seemed to be standing out too. Then I noticed that she was constantly thirsty also. Drinking 4 or 5 bottles of water a day which has never been normal for her. Then waking up 2 or 3 times a night to use the bathroom which she also had never done in the past. But it wasn't until one night, Lily was napping in my lap, I was rubbing her back and noticed that I could feel every bone in her spine poking through her skin, that I knew something had to be going on. So I called her pediatrician and requested he do some blood work. We went in the next afternoon and by the following morning he had called us back in to give us her results. She had Type 1 Diabetes. We had to take Lily directly to the hospital to be put on an insulin drip to get her blood sugar back to normal. She was in Ketoacidosis and I was told that it was a good thing that we got her in when we did because had we waited even one more day she could have gone into a coma.
In those four days in the hospital I was once again amazed by the strength and maturity of my 6 year old daughter. Laying in a hospital bed with tubes running out of her arms, an insulin drip, an IV with fluids, having her blood drawn and her blood pressure checked every hour, listening to doctor after doctor and nurse after nurse telling us all the things that were going to be part of her life now. The constant finger pricks to check her blood sugar, the four shots of insulin every day. The new diet, the carb counting. The simple loss of the freedom to go in the kitchen and grab a snack when she wanted. I can't count the number of times I had to turn my head or walk away so she wouldn't see me crying. But Lily, she was stronger than me. She cried ONE time in that hospital, and it wasn't because of her diagnosis, or because she was feeling sorry for herself. It was because I had said I wanted to run home to take a shower and she didn't want me to leave her.
We got home and we started out on our new lifestyle. Counting carbs, checking blood sugars, taking insulin, and you wouldn't hear her complain. Not that she couldn't have ice cream after dinner, not that getting poked all those times was starting to hurt. She just accepted that this was what she had to do now and she did it. Once again, my daughter had amazed me with her heart and determination.
Within a year, Lily was doing her shots by herself. I still help her count carbs and occasionally she will ask me to do her injection but for the most part she likes being in charge of that herself. She checks her blood sugar and she makes sure everything gets written down in her log. She knows when her body feels differently and she will check her blood sugar extra times if she thinks she feels low. 90 percent of the time if she feels that way, she is. It was after this year that yet another shoe dropped.
While visiting Lilys endocrinoligist about a year after she had been diagnosed he informed me that as a precaution they had tested her for something called Celiac's disease. It is not uncommon for people with one auto immune disease to be susceptible to others. She had tested positive. So this meant an appointment with another doctor, a pediatric GI, and an endoscopy. A procedure where they put Lily to sleep and fed a tube with a camera at the end down her throat to look at her small intestine to check for damage. There was a small amount of damage which confirmed that Lily did indeed suffer from Celiac's disease, which is an intolerence to gluten that is found in barley, rye, oats and wheat. So poor Lily's diet has been affected even more. This time, finally, Lily did cry. Once. And who could blame her. How can you explain to a 7 year old that its fair for her to have these two diseases when you can't understand it yourself? But she carries on, she takes on this even stricter diet and she doesn't complain, she just accepts it. She doesn't feel sorry for herself, to her it just is what it is.
I wish that I had half of the courage and selflessness that my daughter has. She truly is my hero and I'm so very proud of her.
Lily and I and our family and friends, we walk to help find a cure for Juvenile Diabetes. It can't take away all of the things that she has already had to deal with in her 9 years, but I'm going to do everything I can to try and make the rest of the years I get to spend with her a little bit easier.
|Love for Lily - Join Team||Raised|
|Denotes a Team Captain|
Jason and Kimberly Watson
MaDonna Kelley, Thirty-One Fundraiser
Mr. Jack Stheiner
Mr. Shane Jon Stheiner
Mrs. Amy Stheiner
Mrs. Megan Ann Maguire
Mrs. Paula Strelitzer
Mrs. Sheila Jannette
Ms. Nana & Poppy Jannette
Phillip and Annmarie Stheiner
Scout & Emmett
Tim and Becky Vosler