 |         |  |
 | ||
| | |
| ||
If You Wish To Turn This Off While You Read, Just Right Click On The Icon.
I can't tell you how many times I have sang that song... and meant every word of the verse above. It still makes me cry.
This is the story of a very small, very weak young lady named Valkyrie Elizabeth Osborne who was born July 10, 1992. Her story is all true, and very sad. But I hope that you will be able to gain a better insight on children like her.
Valkyrie was born July 10, 1992 in a small town hospital in upstate N.Y. over looking the Hudson River. It was a beautiful summer night, with a wonderful breeze which was unusual for that time of the year. She was 3 days past her due date, and was still very small, but she had decided to plop herself on my sciatic nerve and I was unable to walk, so the doctor decided that it was time to induce labor. I had had this done before with my first daughter, so i wasn't too worried about it. What did worry me was that she was so small, and I was worried about her being ok. You see, while I was pregnant with her, alot of really bad things happened.
My mom and dad were elderly (oops... older) people. I was 26 when I was pregnant with her, and my father was 72 and my mom was 65. In December of '91, my mother fell and broke her hip, which meant that I had to move my husband and 2 kids in and take care of her. That wasn't a big deal, but being 4 months pregnant didn't make it any easier.
In January of '92, my father took very ill with psirrhosis of the liver and needed hospitalization. He decided that I should be the one to have his power of attorney, which now made me responsible for all of his affairs, including the bills, and stuff. The day after he signed the power of attorney, Dad went into a coma. The doctors did not expect him to live, so we began preparing for the worst. It was February 20, 1992 when he came out of the coma... weak and fragile, and not like the tall strong father I remembered. Two days after his remarkable recovery, My mothers' house burned down with every stitch of clothing that my family owned along with it. With this came the task of going into that smoke filled house and clearing out all the valuable stuff so that no one would run off with it.
I had a doctors appointment the next day, and he told me that if I didn't slow down and relax, that I was going to lose this precious life inside me. But how could I? My parents needed me so desperatly... how could I turn my back on them? So I kept on doing what I had been doing... taking care of two homes at once, and trying to keep everyone happy. (And TRUST me... keeping MOM happy was impossible)
Dad was sent to Spaulding Rehab in Boston where he recieved alcohol and physical rehabilitation. The alcohol rehab was in my opinion a waste of time for a 72 year old man. He said he was never going to take another drink and I believed him. But his counsellor (who incidentally was younger than me) said that he needed it desperatly and that he had new rules that he had to live by. One of which was that he had to give up all of his friends that he had known for all of his 72 years. I thought this was ridiculous and refused to make him do that. Needless to say, the counsellor was not pleased. But Dad eventually came home, and my job of taking care of him became full time again. It was at this point that Valkyrie decided to settle on my sciatic nerve and make my life miserable. But, I trudged onward and took care of all of my duties.
Well, I was told that I had one special child inside me because most babies wouldn't have lasted through all that stress. Little did we know at that time how much she would need that resolve of hers to live.
Valkyrie entered this world at 10:38 pm with out much trouble. She was a small baby, but that didn't matter to me. She was alive. She weighed in at 5 lbs. 4 ounces and was 17 inches long. But what I didn't know at that time was that she was born blue. That means that she was not breathing when she was born. It was soon after that that the problems really began. While we were in the hospital, she could not regulate her body temperature, which meant that she had to stay in an incubator and was only allowed to come out for short periods of time. She also had difficulty drinking from a bottle, and only ate about half an ounce at a feeding... and it took her almost half an hour to eat that much. The doctors tried different nipple sizes and formula, and that helped some. We went home together 2 days after she was born. It was then that I began to realize that something was wrong.
When she came home, she was not a happy baby. She slept very little, (about 3 hours out of 24) and when she did sleep it was in 20 minute intervals. She could not sleep lying down, so she spent most of her time in her car seat. She ate very little and was at the doctors almost every day. All she did was cry... but it wasn't a normal baby cry. It was a very soft, very high pitched squeal... almost like the cry of a wounded rabbit. This went on constantly, there was no consoling her, no calming her down, no nothing. So I cried right along with her. I was not sleeping, not eating, not doing much of anything except wondering what I was doing wrong, and beating myself up over it.
It wasn't until she was hospitalized just before Christmas of '92, that we began to get some answers. She had been having alot of trouble breathing, and every time she went outside with us to the car, she would stop breathing. Yes... you read right.. she would stop breathing. The cold air from outside "froze" her tiny little lungs and they would no longer pump air. I cannot tell you how many times I had to perform infant CPR on her. I know.. you are saying "well.. why didn't you just keep her inside?" Well, that is a good question, but not a very practical one. I have 2 other children who were 4 and 2 when she was born, and the oldest was enrolled in nursery school. I would drop her off at school, and then take Valkyrie to the doctor for her daily check-up. It was at these appointments that both her doctor and I would cry together because we had no idea what was wrong. Then just before Christmas I took her to the hospital because she was not breathing well at all. It was -10 degrees out side, but I had to go. So I loaded her up into the car and off we went as fast as I could drive. We got there and spent 5 hours while they did test after test after test, and then the doctor there said there was nothing wrong with her and sent us home. So... back home I went. I wasn't home 30 minutes, and she stopped breathing all together. My husband called the ambulance while I once again did CPR on her. The ambulance driver said since the roads were so bad it would be about 45 minutes before they could get there. It was at that moment that Ron and I decided that WE would drive her. We called his mom and dropped off the other two and raced to the hospital. AGAIN. But this time, I had called her pediatrician who was going to meet us there. (Bless her heart) As we pulled into the E.R. parking lot, there she was waiting on us. She almost cried when she saw me getting out of the car still doing rescue breathing on this very tiny angel. We got into the hospital and the heads began to roll. She was throwing orders and cuss words left and right. We got her stablized, and it was determined that she had a severe case of the croup. When they suctioned her, out came a ball of phlegm the size of a golf ball. She spent 4 days in the hospital, and I never left her side. The nurses begged me to go home and get some rest, as did her doctor, but I refused to leave my tiny 14 pound 5 month old baby alone.
It was also decided that Valkyrie had severe athsma. Severe athsma is different from athsma in the sense that severe athsmatics don't ever breathe right. They don't have "athsma attacks" they just can't breathe... period. There is no relief for them. They just adapt. So because of this, she did not speak, she did not "play" she only watched and cried.
Emotionally.. I was drained to the point where I had nothing left. My father had passed away December 1, 1992, and I was holding his hand when he died. It was 2 and a half weeks later that Valkyrie almost lost her life. I wasn't sure how much more I could handle. I felt as though I was falling to pieces, but I couldn't because my baby and her brother and sister needed me. So... I trudged ever forward.
Valkyrie now had "the machine" as we call it.. a nebulizer is the correct name, that we used every 4 hours and sometimes more. She was not improving at all.
My mother had stopped speaking to me after dad died, so I had no support from my family (except my husband who God, bless him, is the most wonderful thing that has ever happened to me). I was on my own for the most part.
And then came the news... Valkyries' doctor had tried everything she knew how to do, and told us that "Either we move south, or bury our Baby". She gave Valkyrie 1 month to live if we stayed in N.Y. So needless to say, we moved in a real hurry.
We moved to South Carolina 2 weeks later. Ron had no job, but we were determined to make sure that our baby would live. And she did improve once we got there. She was 8 months old, and still didn't weigh 20 pounds, and had never said a word, but she was breathing... and eating... and playing. It was also the first time that she had EVER slept through the night. The first time she did I was scared to death to walk into her room, because I was afraid that my worst fear had come true...I was afraid that I would walk into the room and see my baby dead. But when I got there to check, she was peacefully, angelically, and so sweetly snoring...Yes... snoring. That was the most wonderful sound that I had ever heard. Ron and I just stood there watching the tiny sweet little baby sleep for the first time in her life. And that made all the sacrifices and the heartache worth it.
Things were real rough for us for awhile. Ron couldn't find a job, so I went to work, and he was the stay at home dad. Not a role he was accustomed to, but he handled it really well. I got hurt at work, actually, I blew out my knee... much the same injury that has sidelined many football players, and had to quit working. I was on crutches for 8 weeks. Ron went to school to become a truck driver. I hated the idea, but it was something he wanted, so I went along with it. He did really well in school, and got a job working for Builders Transport.
On Fathers day, 1993, my mother called to say happy Fathers day and catch up on all that was happening. That was the last time we spoke to her. She died of a massive heart attack in the back yard 4 days later.
I had to pack up my kids and take a bus back to New York to bury my mother next to my father a little more than 6 months after I buried dad.
Ron couldn't come with us, because he had to start work the day after I left for N.Y. So the kids and I went to say goodbye to my mother. We arrived in New York, and immediatly, Valkyrie started having trouble again. She started wheezing, and coughing, and having a rough time. She was to be one year old in two weeks. The time spent in New York was bad for all of us. We missed Ron horribly and I felt like I was all alone, I was an orphan. I know that you are probably thinking, well you were 26 years old... how could you feel like an orphan? Well, I don't care how old you are.. three or fifty three... losing both of your parents so close together is a very hard thing to deal with. But I kept my head held high and always remembered what my father said about me. Dad had told me long ago that I was a fighter... a rebel in the truest sense of the word. He meant that I could handle whatever strange twist that fate handed me... and that I was stronger than most people he had ever known. And I guess he was right. We stayed in New York until August that year, Valkyrie celebrated her first birthday away from her father, and her only present was one that my mother had bought and wrapped just before she died. Valkyrie was not growing, or speaking, but she was walking. She was very weak, and very frail, but she was still alive and that is all that mattered.
When we got home, it was a wonderful time. I cried for three days. Not because mom was gone, but because I was so happy to be home. Ron was now driving for Builders transport, and bringing home a good pay check, but he was NEVER home. He might come home for 3 days out of 21, and that was taking it's toll on me. But the thing that really hurt both of us was that when he did come home, Valkyrie ran away from him because she didn't recognize him. So Ron quit driving truck, and began working for the shcool district. It was alot less money, but he was home and we were a family again and that is all that mattered. He had enough love to get us through not having the money to do things. And LOVE is much more important than money.
Valkyrie was finally beginning to grow, and at 19 months finally said mama. That was music to my ears. She had begun to gain some weight, not as much as we would like, but she was up to 25 pounds, which she stayed at for the next year. In March of '94 we moved to North Georgia to be close to Ron's mother and her family.
It was truly a beautiful place, nestled in the mountains, alot like the place I grew up in in New York. But the climate did not agree with Valkyrie. The winters were a bit too cold for her, and thus began the first of many hospitalizations for pneumonia and bronchitis.
Fortunatly, I had found a wonderful doctor by the name of Robert Bond. He was not a pediatrician, but he understood that I knew more about her than anyone else did, and that when I said there was something wrong, I meant it. He understood that she did not get sick gradually, and we discovered together that she did not get a "cold" or the "sniffles". You see, she would be fine went she went to bed. No fever, no coughing, nothing. BUT by about 6 am her lungs were so full of mucous that she couldn't breathe. So he got used to seeing me parked in front of his office at 8 am waiting on him to arrive. He knew that when I showed up that early, and didn't call, the she was very sick. He saw her at about 9:30 am and by the time we got all the paper work together to admit her and got to the hospital to get her settled, she was so sick she couldn't hold her head up anymore. And by 11 am, she was so dehydrated, that they had a very difficult time getting an IV into her.
This is when Pooh bear became a very important person in Valkyrie's life. I say person, because he comforted her in ways that none of us could. When she went into the hospital, Winnie the pooh came too. Her pillow with the pooh pillowcase, her pooh crib sheet, her pooh blanket and slippers all came too. She was still drinking a bottle and in diapers at two years old. We tried to take her bottle, and substitute it with cups, but she stopped eating, and drank very little. After only 3 days without her bottle, she became dehydrated and lost 5 pounds. It was then decided that she was to have her bottle until SHE was ready to give it up and not before. She recently (June of '97) gave up her precious "bobby" and began to suffer the same problems. But she was determined to be a big girl. And she has. We stayed in Georgia, not wishing to leave Ron's family, (which was the only family my kids had left) so we learned to deal with Valkyrie going into the hospital every time the wind changed. She was in the hospital, a total of 14 times in less than 2 years. She had IV's, and lived in an oxygen tent for about 2 weeks each time. She stopped crying when they came to give her shots, she held her tiny arm out when she saw the IV pole coming, and she knew that that little red box with all the needles in it meant that it was time to roll up her sleeve and get ready for "the butterfly to bite her". She was alot stronger than any of us. She took her breathing treatments with a smile, while the 12 year old boy next door screamed so loud you thought someone was giving him a shot.
All the nurses, and Lab techs and Respiratory therapists knew her as "peanut". They all loved her as if she was their own child. They cried along with me when I stepped outside to smoke and regain some composure, they rejoiced when she gained a pound, and fretted when she lost it again. They all became our extended family. One of the last times she was in the hospital in Georgia, she gained a pound, which brought her up to 30 pounds. The nurses all chipped in and bought her a cake and we had a party to celebrate. She was 4 years old and in the hospital for pneumonia which had been brought on by the chicken pox. She got presents, and candy, all of which she adored to no end. Doctor Bond was very happy to see that she was finally making some progress.
In August of '96, she became ill again, this time it was one of the worst bouts she had had. They had to suction the mucous from her lungs, and she had a real hard time getting over it. Ron had just been told that his job was being shipped to Mexico, and his position would end the last part of the month. While Valkyrie was in the hospital, Ron and I discussed moving the family (the kids and his mother and her boyfriend) to Florida. The plan was that it would help Valkyrie get stronger because of the warmer climate and He could work at Disney. He wasn't sure about the idea until we ran it by Dr. Bond. Dr. Bond agreed that Florida would be the best move that we could make for her, so, we made plans to do it. At this time, Valkyrie was now speaking in very broken sentences and barely audible words. I, of course knew what she was saying, but had to constanly translate for those who did not know her.
So, in December of '96, 3 days before Christmas, we packed up the truck yet again, and moved our life to a town where we knew no one. And here we are. But Ron is working at Walt Disney World, and Valkyrie is doing very well. She is now speaking in relatively unbroken sentences, and is doing much better. Her athsma is still a problem, but at least she doesn't have pneumonia every other week, and she is getting stronger and more active by the hour. She is still a failure to thrive child, and is still speech and language delayed, but she is alive and kicking harder than any mule ever could. There are a few misconceptions that I would like to clear up tho'. Failure to thrive (FTT) is a disease where for some reason, sometimes it is unknown, a child cannot gain weight. This is generally thought to be caused by neglect by the parents, and is therefore thought to be a crime. But I can assure you that that is not always the case. Some causes of FTT are; a hyperactive thyroid gland, (this is what we believe may be Valkyries problem, along with the athsma that causes her to suffocate when she eats), The child has an illness, such as athsma or severe deformity, that restricts their ability to eat properly. If you don't think that athsma can cause this kind of problem, do this test on yourself: plug your nose, take a mouthful of food, and clasp your hand over your mouth, and chew. Can't breathe can you? Can't taste anything either can you? Now imagine that every time you eat, you get that same feeling. You can't breathe, and you can't taste a thing. Now if that happened everytime that you sat down to eat, would you really want to? Well those feelings are ones that thousands of children feel every time they sit down to a meal, or drink from a glass, and Valkyrie is one of them. FTT is a disease, not a sign of bad parenting. Trust me on this. I know.
So think about this the next the next time to take a deep breath of fresh spring air... there is a child out there that only dreams about being able to do that... and be greatful. And the next time that you hear one of those telethons for Muscular dystophy, or Cystic Fibrosis... remember that that could very easliy have been your child sitting there on that tv show, and you could be the parent who has sat up nights crying. Just think that your child might be the one who is in need of a lung transplant to live another year, or desperatly in need of a new wheelchair, but you can't afford it. I'm not saying that you have to give alot. If every family member in America donated just $1 to the Muscular Dystrophy Association, almost every child who needed help would be able to recieve it. If you can only donate $1 a year... that will help out more than you will ever know. Just think about it.
If You Would Like To Check and see how my Little bit is doing today, and how things are going now, please stop by her brand new update page.
Thank you for taking the time to read Valkyrie's story... I know that it did my troubled heart alot of good to write it. Thank you for stopping by, and please... let us know what you thought about this page... please?
Speech and language delay is another disease that is often misdiagnosed. Speech and language delay is most commonly associated with some form of retardation. Well, this is not the case with Valkyrie. She has been tested and retested, but her mental ability is above her age level. (provided the Doctors listen to me. They seem to believe that since she can't talk that she is unable to think. *DUH*) Her speech on the other hand is below her age level. Why you ask? Well, you remember the test I told you to do right? The one where you plug your nose and put your hand over your mouth? Well, do it again, only this time just breathe like you normally would. Isn't working is it? Well imagine if that was the most air you had taken in at any time in your life. Would you waste even one precious breath of that? I don't think so. And this is exactly why Valkyrie has not begun to speak until now. It isn't that she didn't know how, it is because she didn't want to waste any of the one thing she needed more than anything on this earth... oxygen. We take breathing for granted, we figure that we will always be able to do it, but for a child like Valkyrie, a breath of air is the most precious thing on the earth. She has NEVER been able to take a good deep breath and probably never will.
|
Read
my Dreambook! Sign my Dreambook! |
|
Links to other sites on the Web
