Saturday, November 7, 2009

Speaking from the heart

There are just some days that I still get amazed by Taylor. I live with her and am with her almost every minute other then when she is at school. I know what she has done, I know what she does, I know what she has had to endure, yet, every once in awhile I am taken aback by her. She did it to me just recently.

She was called and asked to speak at a Phi Theta Kappa honors conference. Taylor thought about what she wanted to say, then asked if she could just write it down and read off of it. I told her of course she could, after all, we see many adults do it that way. So, that is just what she did.

I sat in the room listening to her talk. Her body looking so tiny, her voice started out pretty soft. But as she went on, she seemed to get taller and her voice definitely commanded attention. This is what she had to say:

Hello, my name is Taylor Batten. Many call me Gunny, that is because I am an honorary Gunnery Sergeant for the United States Marine Corps. Not bad for a 15 year old girl how has a major medical problem! I am 15 and I go to Mendon High School.

First off, I would like to thank you for having me here. It means a lot to me that someone is wanting to hear my story and hopefully, I will be able to encourage some of you to help out with our troops.

I know that I am going to be speaking next weekend here again, so today if it is ok, I will just tell a shortened version.

I am reading off of this paper because sometimes it is hard for me to speak without reading. I have Turner Syndrome. Turner Syndrome is an extremely rare medical condition, it only effects girls and only less then 1% even survive birth. I was one of the lucky ones, but I didn't always feel that way. Turner Syndrome is a chromosomal disorder, I am missing a chromosome. Because of that, I am missing miles and miles of genetic make up. It has caused all sorts of medical problems for me. Sometimes, my brain doesn't process information like everyone else's does, it just fires differently. My body produces growth hormone, but it resists it, that is why I am on the shorter side. I also don't produce estrogen and because of that, I have low bone density already. I have several other things going on as well, but the biggest thing is my heart. I have already had heart surgery at the age of 6 months old. Right now, I have several leaking valves, one valve that has only 2 flaps instead of 3 and my aorta is really enlarged and it is dangerous for me to play any sports. So, I can't.

Because I can't play sports, I try to do other things with my time. When the war started, I wanted to do something. I was pretty young then, but I just knew I had to do something. I have always loved my country and I am very proud to be an American. It just seemed like the right thing to do.

My mom didn't know what to do though to help me. She kept asking people what we could do and finally, one day someone sent to us a link to go to a website called My mom and I went to that website and there they had all these service members who were deployed to Iraq and they were asking for all sorts of things. It was sad to see what they were asking for because we thought just like everyone else, we thought that the government took care of everything they needed. But that isn't true. They were asking for simple things, things we take for granted every day.

They needed food, can you believe that? Now imagine being put into a hot desert. The temps are 110. It is really to hot to eat, but you know you have to. Now imagine, in order to get that food, you have to put on all your battle gear which can weigh a lot and then you have to walk to your chow hall. If you are in a small base, the walk might not be that far. If you are on a larger base, the walk could be over a mile away. So, many of these guys weren't going to the chow hall to get what they needed. Small snacks for in their tents, perfect.

They asked for soap, deodorant, toothpaste, pillows, sheets, magazines and newspapers. They don't have TV's everywhere to watch or radios to just turn on like we do here. There were even a few medics asking for Band-Aids, Tylenol, antibacterial ointments. Yes, they do have PX's there, that is like a store. But many times, they aren't stocked on a regular basis and if they are, you had to be right there as soon as it was because everything was in such high demand. They many times though were stocked with really odd things, like vacuum cleaner bags, no vacuums though. What are they going to vacuum up there anyways, the desert floor? Or maybe 3 types of denture cream, no toothpaste though. One even had a baby car carrier in there.

The one thing they mostly asked for was support from home. They didn't want to be forgotten. They needed to know that we care. So, that is what I did. I sent letters and care packages. I did what I could do and somehow, the Marines heard about me. Because of my medical condition, I can't be in the military. They decided that I was doing a good job for the deployed and our country, so they made me a Marine.

Before that, I was pretty sick all the time. Many times, it was hard for me to even get out of bed. I had a lot of doctor visits and a lot of not good things happen to me and I was always scared to go to any type of doctor. I used to fight it. But, when I became a Marine, something changed. I felt so much stronger inside. I decided that if our guys were doing what they were doing, I could do what I needed to do and I did.

I am still sick and I still get tired a lot, but not how I used to. Because of all the medical stuff I had been through and some of it was really bad, I kind of felt like I knew what our wounded were going through when they were at the hospital. I had to go to Washington DC to the National Institute of Health for medical testing. Right across the road is the National Naval Medical Center. That is where all of our wounded Marines go to when they are wounded. It was set up for me to go visit with them, that was when I was 12. It was an incredible day. I got to visit with some really badly injured guys. What I saw that day made me even stronger. They were hurt really bad, but they were fighting to get better and some of them were even fighting just to stay alive. Many of them were able to talk to me. It was strange for them I am sure. They were hard core warriors and here I was a 12 year old kid, but I understood them and they felt it. The Lt. Col. in charge there told my mom he had never seen anything like it before, how the guys were with me.

Because of that visit, I got invited to go to the Marine Corps base Camp Lejeune in North Carolina. I got to spend a whole week there, visiting and being with the Marines. The main part of the visit though was to spend time at the Wounded Warrior Barracks. It is for guys that were injured and they were well enough to get out of the hospital, but not well enough to do anything else. They are able to be at the Wounded Warrior Barracks with other wounded and that is so important. They don't feel alone and they still have that deep camaraderie that the military have. I got to talk with so many of the wounded and I got to be a part of their lives. I am still friends with many of them now. I also got my promotion to Gunnery Sergeant there.

I raise money to help the wounded and I do many other things for them. Again, many people think our government takes care of these guys and again, it isn't quiet true. Some of them come home and then there is all this governmental red tape they have to go through. Some of them don't get any type of money or assistance at all for several months to up to a year or longer. Many of them have lost their homes because of it. Almost all of them have emotional issues. Their injuries are often life altering. Some, the injuries aren't on the outside, but on the inside. They, just like our deployed, need to know they are not forgotten and that someone cares. I know how they feel.

I know that I am now stronger on the inside and outside because of them. I won't give up on them and they won't give up on me.

I have become friends with so many veterans. In fact, I held a card drive and I got cards sent from all over the United States to give to veterans in nursing homes. I have gone to a couple of nursing homes in our area and gave cards and then I just got to visit the Grand Rapids Veterans Home. I took several hundred cards there and I was able to give them all out. Many of the veterans are old and have no family to visit them. Some of them, when they opened their cards, cried. They cried because someone said THANK YOU to them. They have no one to visit, no one to talk to other then the other vets there.

None of us can know what these deployed, wounded and veterans have gone through. We can only imagine. Think of how it would be for you to be taken away from your family and friends and then shipped off to a foreign land. Think of how you would feel being in 110 plus degree heat day in and day out, having to wear up to 70 lbs of battle gear, not being able to take a shower for days and sometimes, weeks. Wearing the same clothes over and over again. Think of how it would be, knowing there are bad people out there and their sole purpose was to kill you. Every piece of trash along side the road might be a bomb, every person walking towards you might kill you or harm you. Going from town to town, knowing people didn't want you there and in fact, hated you. Knowing bad things happened to those that did step up and help you. You can't go home, you can't sleep when you want to, you can't eat when and what you want to.

Think of how you would feel if you got shot, lost an arm, leg, an eye. Or, you lost one of your best friends because they didn't make it from their wounds. Even if you didn't get hurt, inside you are holding onto things because some of it goes against complete human nature.

That is what our guys face every day they are deployed. That is what our veterans hold onto when they come home. Doesn't matter if they have been home for a day or for 50 years, it never leaves them. One war, they are all hailed heroes and welcomed home. The next war, they are all treated horribly and spit at as they came home. Now, another war rages on and many people want to act like it isn't even happening.

But through all this, our troops are proud. They are proud of their country, they are proud of the good they did and are doing. There are many good things that have come out of past wars and the ongoing one now. They do what they do because their country has asked them to do so. Many people do not agree with the war at all, but to me, it doesn't matter if you agree on the war and the reasons of it, what matters is that we have our fellow Americans fighting a fight and they need us. Sometimes, it is just a simple small thing like a letter asking how they are doing that boosts their morale enough to help them get through that day and to stay alive, or to give them that extra strength to recover.

It is because of their strength and courage that I have the determination to fight my own battle with my health. It is because of their strength and courage that I fight hard for them.

I send care packages, letters and emails, I visit the wounded. I hold blanket drives for the troops in Afghanistan because it gets really cold at night, I am doing a clothing drive for the wounded. If they get wounded in the field, they go to a hospital and their cammies get cut off them and then they are flown home in a hospital gown, not comfortable! I raise money for the wounded and for our veterans. I try to get the word out as much as I can. Sometimes it is easy and sometimes it isn't.

I don't do it alone though, there are times that people will help me and they donate things. I find it never hurts to ask. One time, I asked my mom's dentist for some toothpaste to send and I got a whole case! I went to a company and told them I was raising money for the wounded and they gave me a check for $1,000. I asked for cards for veterans and I got over 2,000 sent to me to give out. I asked for blankets one time and I got over 100. Sometimes, people will give money to buy what I need or to help with shipping.

I have been able to meet so many of our country's heroes and I am so lucky to be able to call them my friends. I am lucky that I have been able to help out so many of those that are fighting and to let those that have fought to know that many people do care. My mom says though that I am the luckiest because of the strength I have given to others, they give me strength back and because of that, I am stronger.

I am proud of our veterans and what they had to endure to make sure that we all get the freedoms we have today. I just try to do my part to make our country better because of them.

Thank you for letting me speak to you today. Never feel like you can't do something or you can't help out in someway, I am proof of that.

1 comment:

Gretta said...

I was so proud to read your story. I have a daughter with TS. I do think the numbers have changed as far as survival. 2% or more right now do survive. The TS community seems to think that number may actually be a bit higher now because they are finding SO many girls that are diagnosed later and do not get put into the numbers due to families going straight to endos and bypassing the genetic doctors who are largely a part of the studies for survival rates, etc.

I think you are a brave young woman with a bright, bright future! I would hope that you would visit the Magic Foundation website at and find out how to become a part of our chat group that I moderate. I think you would be a great part of our group, to talk to moms and other girls!

Gretta DeSantis, TS mom