Thursday, May 17, 2007

Taylor's story

Ok, here it is. It is long and it might be a bit outdated, as this was the letter that I sent out about her last summer. I will try to go and change a few things to get it up to date though......

Thirteen 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 impaired 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 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.

UPDATE: Ok, most of you all know the things going on for Taylor now from reading the blog. In October, I had to take her to the National Institute of Health in Bethesda for a week's worth of testing. Again, we found out some significant things on her medical condition. Most of them negative, the major one being her heart. We are now working with pediatric cardiologist at the University of Michigan.

It is so incredibly scary, not knowing Taylor's outcome. But, we have taken Taylor's cue and we are looking at the positive side of things. Taylor has survived already what most children with her condition don't. She has the compassion of 1,000 people all rolled into one little body, she has a deep understanding that most of us never will.

She loves her country on a level that is almost mind boggling and her desire to be there to help out her troops is like no one we have ever met.

We now believe, Taylor has a purpose in life. She is being shown her path and she is not only following it, she is charging full force and bringing many along for the ride. How many can honestly say they knew at such a young age what they were to do with their life? I am an adult and I still don't know! Taylor has a mission, and it includes healing the many she can reach out and touch. This in turn, helps her get stronger to fight her daily battle. We are very proud of Taylor and are so happy that we have her to share with you all.

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