A Letter From Taylor's Mom
I am the assistant state captain for the MI PGR (Patriot Guard Riders) and a Marine. This past saturday we had a mission in Kalamazoo, MI for a Sgt Deroo. As usual I got to the stageing area way ahead of time to get things set up and finalized before the rest of the members from the PGR showed up. When this family showed up and got out of their vehicle. Up comes this little girl and her mom and introduced themselves. The little girl saluted me and sang out with a SEMPER FI that any Marine would be proud of. She told me that she was made an Honorary Marine and was very proud of it too.
As ususal when the time came I gave me speech about policeing up after themselves and the the way that the mission was going to go for that day. Then I informed everyone that Taylor wanted a group picture to remember her first mission. We got the picture and then she asked if she could say a few words. She spoke from the heart and only said a few words that had most of us choked up. Picture this a little girl had 150 plus bikers in tears. The mission went off with out a hitch.
Today I was checking my e-mail and I got this letter from her mom and I broke down and lost it. This is very long, but well worth the reading. The first part of the letter is to me and the second part is to a member of the MI PGR.
Thor
Hello,
We are the family that joined your group yesterday for the service for Sgt. DeRoo. My daughter is the one that wanted to have her picture taken with all of you and she is the one that thanked you all. (As soon as I get the picture downloaded, I will send it along to you.)
It was such a wonderful experience, and we are so grateful for your group. There were actually several of your members that reached out to my daughter. One man came and found her just as everyone was lining the driveway to give her the Mission Accomplished pin. As soon as the service was over, another one had picked up a shell casing just for her and went out of his way to find us. We noticed he had on a Marine shirt, and we told him that she was an Honorary Marine and this is something she takes extremely serious and she showed him her 'dog tag'. With that, he took off a necklace he had on and showed it to her, it was the St. Christopher Marine medallion, and as soon as he showed it to her, he put it around her neck and walked away. We of course chased him down to get his name and email so we could thank him. We talked with him for a few minutes and told him how she sends off many care packages to Iraq and has made many penpals. There were some people standing around listening including a tall man who got down on his knees so he could talk to her face to face. He told her that he was proud of her and that he had lost his son last year in Iraq. He wanted to be sure that she always stayed proud and held it in her heart.
I really wish that I could have shared her story with all that were there. But I want you to know, that your group not only helped Sgt. DeRoo's family, but your group also reached out to my child in several ways.
I sent this email out to the man that gave her the medallion, and I would like to share it with you. You see, it is through my daughter's love for her military that we have become huge supporters of our troops. It is through her strength and courage that we will continue to honor active, retired and fallen troops. It is through her love, that we are very proud American's. Here is the email:
Hello Mike,
I wanted to send this along to you so you can see how your act of kindness has touched not only me and my husband, but more importantly, Taylor. I would like to tell you her story, so you can see how being a Marine has been life altering for her. It is a long story, I will warn you though!
Twelve years ago we were blessed with the birth of Taylor. Such a small little thing when she came into this world, not crying, but just sort of trying to move her eyes around and just so content.
On Taylor's second day of life, she was not eating and I had to take her to a nurses station to have her blood sugar checked before I fed her. There was a nurse that was standing there with a sandwich in her hand and the second she saw my daughter, her sandwich was thrown to the ground and Taylor was scooped out of my arms and all I saw was the back of that nurse almost running into another room with my baby in her arms before I could even register that I was standing there empty handed. My knees just about buckled, but by God, I was not loosing sight of that nurse!!! I ran after her and by the time that I got to her, she already had Taylor hooked up to monitors and an oxygen tent over her head. Talk about your stomach up to your throat, I could not even speak. I just stood there in disbelief, eyes wide, mouth shut. After this nurse worked on her for what seemed eternity to me, she finally told me that she was not sure what was wrong, but something was. She told me that Taylor had not a right color to her and her instinct told her something was not right. She called in the pediatrician, on a Sunday, and I guess he was not happy. When he entered the nursery, it was with a kick to the door. He did not look at Taylor's chart, he did not even really listen to the nurse, he lifted the oxygen tent and said very clearly, 'There is nothing wrong with this child'. And he started to walk away. That nurse got in front of him and blocked his way. I can't tell you for sure what was said, but the last part we heard loud and clear and she said to him, 'my husband does not talk to me that way and you sure the hell aren't going to either'. Needless to say, that got our attention! She proceeded to tell him she did not care what his degree said, she had been a nurse in the NICU for 20 some years and there was something wrong with our child. All I can say is thank God for that nurse!!!! Taylor's heart was actually starting to shut down. She had to stay in the hospital for a week before we were able to bring her home, she fought and fought well and her condition improved. But we knew she had to have major heart surgery.
From day one my daughter has had to fight and she has had to fight hard, every day of her life. Her struggles are many. Her first surgery was at 6 months old and she has since had to endure 5 others and we know she will have more. We always felt there was something else going on with her other then just her heart condition. At 10 years old, she already had 4 charts full just at her pediatricians office, not to mention all the specialist we had been bounced around to. She was very small for her age, and never healthy. She struggled with things that came so natural for other kids. To say that she has been medically traumatized by all the testing and poking and prodding and surgeries she has had is just about the biggest understatement there could be.
Finally, when she was 11, I couldn't stand it any longer and insisted that we take her to Mayo Clinic to find out what was wrong with her. I had to take on our insurance company, and I had to fight all the way to the top as well as getting a state Senator involved. I was determined to get her there one way or the other and after months, I won and we were on our way. What we found out there, devastated me at first. It was that double edged sword, you fight to find out what is wrong but once you do, you wish you didn't. After her 4th day there, they had pretty much a diagnosis, but didn't have the blood work to confirm it. Mind you, 4 days there and they knew what it was versus 11 long years of misdiagnosis here. We found out she has a genetic chromosomal disorder. She is actually missing a chromosome. In that missing chromosome, she has lost miles and miles of genetic makeup. She is not mentally retarded like Downs, they actually have an extra chromosome. We found out that this condition only effects girls and it is extremely rare because only LESS then 1% of these girls are even born. Well what the hell more of a miracle do I need then that? That right there told me just how amazing she is and just how strong she is. In being born, she had already beat the odds.
This condition basically effects her from head to toe. The most major problem being her heart. We know she will never be able to have her own children, that eventually her hearing and eyes will more then likely be effected. Her body is resistant to its own growth hormone and that is why she is so small. She is now on growth hormone injections and she is responding to it very well, but she will always be small. Her brain does not wire in some areas as it should and then it has over compensated for it in others. In neurological testing, her verbal areas are considered to be in the genius level, while her visual spatial areas are in the impaired area. Her kidneys will eventually give her issues. She has chronic fatigue syndrome and is tired a lot. Her bones do not nor will ever have normal density. She has scoliosis. From all the radiation she has had, it has given her brain some slower growth rate. This is just some of the issues she faces. In her short time already, she has faced more and fought more then most adults will their entire life.
Now, onto the amazing part. For what she has had to endure, for the amount of struggles she has had to do, she always has a smile on her face. She is so compassionate and so caring. She has this light about her. I know every parent feels this way about their child, but I kid you not......her light shines just a bit brighter.
Ever since Taylor was very young, she has always had a huge fascination with the military. If she saw someone in uniform, it is like she had this respect for them, even before she knew what respect was. As she has grew, so did the fascination. When the war in Iraq started, she always wanted to do something, I just never knew what we could do. One day, a little over a year ago, the website for www.anysoldier.com was passed onto me. Taylor and I sat down and we read almost every entry from that day. As luck would have it, we came upon a Marine who posted GO BLUE (for the Michigan Wolverines) and that he loved the Detroit Red Wings. That was it, this was her man she choose to send to. She loves her Wolverines, as that is where she had her heart surgery at and she just loves the Wings.
She sat down and wrote out a letter to this Marine and then her and I went shopping. I had no idea on really what to get, so I asked her if I put her down in the middle of the field with not even her pooh bear and blankie, what would she want. At 11 years old, she set out on a mission and picked out things that I never would have thought of, and things that were so appropriate! I wrote a note about her to the Marine, as I wanted him to know about who was sending to him. I told Taylor that we probably would never hear from him, as he had a very important job to do. In Taylor's grown up way of saying things, told me that it was OK, she wasn't doing it for a letter back, she was doing it because it was the right thing to do. 11 YEARS OLD!!!!! Amazing how she seems to get 'it' while most adults don't and never will. We sent off several packages to this Marine and one day, we checked to see if he had any updates and were crushed to find out anysoldier had not heard from him and he was dropped. We knew as well that his time to go home was more then likely close. But, we thought, go onto someone else. A few days later, a box came for Taylor and I saw the customs form on it so I knew where it came from. I don't know who was more excited, her or I! I got my camera all ready, for her little face was just aglow. She sat down in the middle of the living room floor, surrounded by my husband, my mom, her brother and myself. She opened her box and the first thing she pulled out was a boonie hat with a pin in it that we weren't sure what it was (we later found out that it was the chevron this Marine was promoted to Sergeant with), and Marine shirt. Then she just sort of gasped, and so slowly, pulled out an American flag, folded into a triangle. She said 'mom, look at what I got!' with it, was a certificate that it was flown on a mission in her honor. She just sat there, holding that flag, staring at it. You know, the whole time this was all going on, I had that camera in my hand and never took one picture! I was so enthralled by her and what was happening, I couldn't take my eyes off of her! She never let go of her flag, and I should add that this flag is by far, her most prized possession EVER. She found a letter and started to read it, holding her flag to her heart as she did. What happened next, I can only describe simply as life altering. She read the letter to us, speaking slowing and clearly. This young Marine told a bit about himself but then talked about her and how special she is. He told her how wonderful it was that she was trying to take care of them while they were out doing their jobs. He told her that her courage was amazing and her spirit was that of a Marine and because of that, he was making her an Honorary United States Marine. When she read that, she looked at me dead in the eye, with a tear rolling down and said in a tone I had never heard before, 'I am a Marine, ooh rah'. With that, I swear, I saw something in her I had never seen. In that moment, that Marine had given my daughter what I had tried to her whole life. Her spirit just grew by leaps and bounds. I could actually not only see something in her, but I could feel it. Needless to say, I was bawling.
From that moment on, things have been very different for Taylor. She now faces her challenges head on. Instead of fighting against what is being done to her, she fights for it. I can remember the very first time she had to have something done after this happened, she walked into that room, head held high and chest just puffed out. She got up on that table, she still had tears, but she did it! When it was all done, she jumped off that table and ran to me yelling 'I DID IT I DID IT OOH RAH' All I could get out was OOH RAH baby, because my throat and emotions wouldn't let me say anything else. The little things that used to frustrate her, just didn't matter any longer. Her whole demeanor was completely different, it was like she wasn't even the same person. Life altering.
Her and her Marine have kept in touch through email, and he was thinking of getting out of the Marines as he had been in for 8 years. She just got a surprise from him, he wrote to her and said he had decided to relist, as he liked helping people way to much! He lived in PA and is being transferred to Texas. He made a surprise visit to meet her. I never will be able to give this young man enough praise for what he has done for my child. In his one small gesture, in words on paper, changed our whole lives forever. How do you thank someone for that? And true to form, he claims he is nothing special. I beg to differ!
She has since picked out many others to send to, and even picked out someone from the Army, just to be fair! LOL She has a Marine Major that is keeping in great contact with her through email and it means the world to her, he tells her that her courage is inspiring to him.
While my daughter will never be able to join the service, never go through basic training, never get that Eagle Globe and never be able to wear the uniform, in her heart and soul she IS a United States Marine and she IS an American Warrior. I can't even convey on just how proud I am of her for this. Her obstacles are many, but she takes them one at a time.
We just found out that she is going to go Bethesda Maryland at the National Institute of Health for some intensive testing. We will be going in October. At first, Taylor did not want to go. I believe she remembered the hell she went through while at Mayo and just wasn't up for that. Then, just as soon as she said she didn't want to go, she stopped and did an about face. Her exact words....Marines don't back down and I am not going to either, I want to go. We do know she will be tested from Sunday to Thursday. They are paying our way there and back, so I am not sure if she is going to be able to take in any of the sites in Washington and this has her a bit down. She really wanted to see Arlington, and the Tomb of the Unknown Soldiers. Hopefully we will get to see those.
All the way home, she kept saying she couldn't believe you gave her your medallion. She just kept looking at it. Tonight, after dinner she said she would never take it off along with her dog tag, as she knew that it was going to help her and protect her and give her more strength when she needed it. I sat there at the dinner table and had tears rolling down my cheeks again. She is so proud of that medallion. I know it had to have had significant meaning to you, so I want you to know that who you gave it to, it will be cherished. Not just today and tomorrow like how other kids would do and then just have it sit there and not mean anything, this will be cherished forever! The shell casing you gave to her, is in a resting spot on her dresser along with the some very important mementos.
The young Marine I wrote about, reached out to my daughter and touched our lives by a small gesture. You have done the same thing, and I hope you will always remember that. It is always so easy to just talk to someone, and then go about your way. It is the special ones that leave their mark on this Earth one way or the other, and you have done that. Please know we are so grateful.
I, not being a Marine, can't say Semper Fi, but I will pass along a Semper Fi from the heart from Taylor, she knows the meaning of Always Faithful!
Cathy Batten
I know this was a long read, but I had to share it with you. As I said this man has left his mark on this Earth, just as your whole group has. There is way to much ugliness and hatred in this world. But you have all set a wonderful example for us all to follow. And I can say with 100% certainty, your example will be followed!
I will contact you again when I get the pictures.
THANK YOU!
Cathy
WOW what a great little girl...!!!
My eyes were leaking the entire read. I couldn't stop reading it. Thank you very much for sharing this.
