School should be the safest and most rewarding place you go too. You should be able to walk into a classroom, be greeted by a teacher who loves her students unconditionally, respects them as individuals, and keeps them from harms way. They are for the next 6 hours at least a parent, a confidant, a doctor, a referee....I could go on and on the daily giving a teacher shows her students each day they walk into her classroom. However, my story isn't quiet the sunshine and roses I wish I could write about.
I loved school, at least from what my mom would tell me. I adored my kindergarten teacher. Loved going to school, my sister and I went together. I was five and she was four. At that time, kindergarten accepted kids who were four years old. We had a great time. I remember painting, coloring, learning my ABC's. Enjoying the ride on the bus. I have great and happy memories of my first year at "big school."
When 1st grade rolled around I was excited for all the FIRSTS. Bringing lunch to school, staying all day and not coming home, taking the bus with the bigger kids. Learning to read bigger books, do hard math. I would be in the same class as my very best friend Seth. I was stoked.
My teacher, we will call her Miss. "A" was dressed in a pretty orange dress. She had short hair and was in her mid 30's. She greeted us all at the door. Excited to start her first day of school with all of her new students. I was ready to go.
The first few weeks of school went fantastic. I have no real memories of me thinking my year wasn't going to be a great one. Until the day things started to change....
My first memory of things going bad was at Christmas time. We were all sitting in class learning Math. She was trying to help a student understand how to do a problem. He just couldn't seem to grasp what he was learning and she clearly had enough of trying to help him. She said "I am going to hit you if you don't figure this out on your own." He started to tear up and asked if he could go to the bathroom (we had bathrooms in our classroom) to wipes his face. She let him go. But on his way back, when he was walking to his seat, she took the roll from the wrapping paper and whacked him on his butt. Hard. Hard enough we all heard it and looked up at the boy she hit. He started crying again. I felt bad. So I told her that it wasn't nice to hit people. Especially kids. That got me into trouble and my name on the board. Strike one.
After Christmas I thought maybe with time off she would be the teacher we all had in the beginning of the year. She wasn't exactly the person you wanted to sit on their lap and give hugs too. I am not sure what we were doing that brought on her anger this time around. All I can remember is we were doing spelling or reading and this other little boy couldn't read a particular word. Clearly she was frustrated beyond belief and decided that hitting him over the head with the thickest and hardest book she could find was more appropriate. I didn't say anything this time around, but I cried. Uncontrollably. She went over to the blackboard and immediately wrote my name on it. She told me I was being "disruptive" REALLY , ME? Your the one hurting all of us and I am being disruptive. I wanted to punch her.
We now come to STRIKE THREE. My turn. It was spring time. The snow was melting off, the playground was now in use. Snowbanks still covered some of the school grounds, so it was nice to be able to play in the sun, but still throw snow balls too.
I walked in school like any other day. By springtime, I dreaded going to school. Begged my mom to let me stay home. Did everything I could. It didn't work as much as I hoped. Despite my efforts to try to tell my parents what was going on at school, they didn't really believe me. They thought I was mistaken by what was going on and that I was making things bigger then they actually were. Its your "imagination" Kiley, they would say.
Until this day. This day was different. This day the bad things happened to me. This day she just went too far. It was break time. During this time we were able to use the bathrooms, go to the water fountain for some water. Talk to our friends for a few minutes. I needed to use the bathroom so I walked in like I had done everyday since August. The girls bathroom didn't have locks on the stall doors. I remember hating to use the bathroom as I was always afraid someone would walk in on me. So when this little girl walked in to use the bathroom she asked me if I would hold the door closed for her while she went. "SURE." I said. I don't mind. About a minute later, my teacher had come into the bathroom looking for me. This is what happened and what was said that morning:
Miss. "A": "WHAT ARE YOU DOING IN HERE?"
Me: (I think she thought I was fooling around.) "I am holding this door for the little girl."
Miss. "A":"OH NO YOUR NOT, I TOLD YOU TO GET INTO THE CLASSROOM."
Me:(She is actually screaming at me.) "she is almost done."
She then proceeds me to grab me by my shoulders with a grip I have never known. She took my entire body, picked it up and slammed my head against the tile bathroom walls.
Miss. "A": You will "NOT" disobey me again. I don't care that your holding the door for her. When its time to go into the classroom, you go."
She then proceeds to push me out of the bathroom and into the hall. Which was a HUGE mistake.
Me: "Don't push me." While yelling at the top of my lungs.
Miss. "A": "Get into that classroom right now and sit down. You will be staying after school."
Me: "Your a B!@$*!" I said. With full furry and as loud I could. Which she then proceeds to grab me by my arm.
Me: "Let go of my arm, your hurting me, Let go, let go."
Miss. "A": I will be calling your parents about this today. You will not be going home after school. They will be coming to get you.
Me: "Go ahead. They wont believe anything you tell them. Your a bad teacher and a B!@#$." (Of course my language for a 1st grader probably wasn't very appropriate. But I was so angry I just wanted her to hurt the way I did. And my seven year old thinking thought it was the only way.)
By this point there are teachers out in the hallway. Kids coming out of there classrooms trying to figure out what was going on. She of course told them it was all my fault, that I "hit" her and I wasn't listening. I didn't know this until later down the road that she had said that. Of course she would blame a 7 year old.
I sad at my table and cried. Cried because she hurt my head. Cried because I had to stay after school. Cried because I wasn't going home. Cried because I wanted my Mom and Dad. Seth (my close friend, who probably does not remember this, came over and asked if I was ok)
My next memory is the kids lining up in the hallway to go home. The older kids asking if I was ok. They knew I wasn't a kid who EVER got into trouble, so to see me in detention was shocking.
My dad finally came in. Which felt like an eternity to me. I just cried. I told him EVERYTHING that happened, but I felt as though he didn't believe me. As a seven year old, the only thing I wanted to do was be good. You automatically have this fear of having your name on the board, getting sent to the principals office, getting in trouble with your teacher. I am not sure how this comes about. How does a child know this can happen before they even step foot in school? I didn't really have older siblings, or older friends that told me this. I just knew.
After my dad arrived, it was myself, my teacher, and the principal all meeting in the classroom to talk about the incident. The principal immediately asked what had happened and the teacher of course told her side of the story. Which was all but a lie. I immediately spoke up.
Me: She is lying. That didn't happen at all.
Principal: Then please tell me your side of the story.
Me: I went through the entire story again. Telling it bit by bit. I even threw in the foul language I used. I wasn't about to lie to the principal. I am crying the entire time, just wishing I could go home at this point.
Principal: What do you think should happen? How should we work on this situation. You cannot go around saying things like that to an adult. Especially your teacher.
Me: I want her sorry ass fired. She is a horrible teacher. (at this point, I also mentioned all the other things that were going on with her in the classroom. That I wasn't the first she had hurt.)
Dad: This is been going on all year?
Principal: Kiley, maybe it would be best if you left the room.
Dad: Why don't you go outside and play on the playground?
Me: I want her fired. If I see her back here tomorrow when I come to school. I will never come back.
From that point on I don't remember much. I remember going outside to play. I don't know what was said after I left. I just remember hating her so much I wanted her to just go away.
The following day she was there at the school. I cried going into the classroom, cried sitting at my table. That first day was just horrible. I ended up having an accident because I was too afraid to go to the bathroom. Though I don't even know if my parents knew that.
The following day was just as bad. By then my parents told me that she had gotten a five year probation period. Which means, if she did anything at all to another student her licensed would be revoked and she would loose her job. Seems to me she got the better end of the deal and I was the one being punished. I trusted NO ONE at that point. Not the teachers, not the principal. When it came to school, not my parents. I felt they needed to protect me, and I wasn't getting that going to school with that crazy lady. I even ran away a few times. Left the school completely and ran to my Nana's house. I hated being at that school. Hated it. Things got slightly better. I had two fantastic teachers for 2nd and 3rd grade. I felt safe. But still worried all the time about her.
Years down the road. I am graduating from high school. I am at an event in my town for younger kiddos. I was asked to help out. Of course. Love too. Never thinking that Miss. "A" would be there. I started to feel a little sick, finding ways to walk out of the room. Keep busy without making eye contact.
She walks over, looks at me and says straight in my eyes "I am really sorry for what happened to you that day long ago. I hope you can forgive me someday." To which I say, "I forgave you a long time. I forgive you now. I am going to college to become a teacher. I hope someday, that I am 3x's the teacher you weren't. I hope that no one ever has to go through what I went through. I hope you learned your lesson and that you will never harm a kid again." She told me how proud she was of me, that I have a lot of fight in me and too keep that attitude. She gave me a hug.
I walked away. Smiling. Smiling ear to ear.
Showing posts with label What I want you to know?. Show all posts
Showing posts with label What I want you to know?. Show all posts
Wednesday, June 1, 2011
Wednesday, May 25, 2011
WHAT I WANT YOU TO KNOW: MISCARRIAGE
In the spring of 2006 we went on a vacation with my entire family to Florida. I told my husband while on our flight that I knew in my heart we would be blessed with a new addition to our family. From past experiences he has known that my gut is almost always right and was excited for our growing family.
We had a fantastic time in Florida. The girls enjoyed the rides, the water, and spending time with there grandparents, Auntie and Uncle and of course there cousin. It was a great 14 days for all.
When we arrived home, we immediately got involved with the baptism of Emma-James who was 3 months old when we returned. It was a wonderful afternoon. We released butterflies in Anabelle's honor. The weather was beautiful, the sky's a bright blue. Great friends and family joined us in celebrating Emma-James arrival and the memory of our daughter Anabelle. It was truly a blessing.
A few days after the chaos had ended. I took a test. I was elated to see that it was positive. That God had given us another blessing to celebrate. 2006 was beginning to be a fantastic year for us. After so much hurt and pain, it was really nice to have all the positive things finally happen in our lives. It was nice to see that 2006 was going to have a great start with a wonderful happy ending. I was due December 31st.
I wanted to tell Jason in a wonderful and romantic way. I went and purchased white, pink and blue balloons at the store and while everyone was sleeping, I blew up over 100 balloons (by mouth mind you) slipped a piece of paper in each balloon that said "Boy or Girl, December 31st 2006" and filled our bathroom full! I was so excited that I couldn't fall asleep the rest of the night. At 6:30am Jason's alarm went off. I could hear him get out of bed, walk down the stairs, and open the bathroom door. I sat there, wondering what his face looked like. Wondering if he figured out what was going on. Wondering if he was even awake enough to understand. I heard him puttering around the kitchen. My patience for him to walk upstairs was growing on me. Plus I really had to use the potty. Finally, after which seemed like an eternity, he came upstairs. Smiling ear to ear. He was excited and of course said "does this mean your pregnant" and I said yes. We went through the rest of the day walking on air.
The next few weeks went by without issue. I told my family. Called my doctor I had for Emma to schedule an early appt. with him. Only to find out he had left the practice. The other doctor refused to see me any earlier then 8 weeks. Even after telling him my past history and that I am to be seen right away, they wouldn't listen. I called up a good friend of mine in Providence, and they too couldn't help me. I felt trapped, worried and angry.
Mother's day was right around the corner. I was excited to spend the day with my "girls" and the new little one. We were planning on stopping in to see my husbands family, then drive to the Ocean for the rest of the day.
A few days before Mother's Day, I started spotting. I felt anxious and worried. I couldn't shake this feeling from me. I spend every moment looking up information on the computer. What to expect. What to look for. What to worry about. The bleeding slowed down. And about two days before Mother's Day had disappeared. I tried hard not to worry. But I did. Every moment I went to the bathroom, which was about every 20 minutes. I had to check. Had to see. What should I do. Should I call someone. Tell someone.
We decided to go out the day before Mother's day for a nice lunch. We knew Mother's Day would be packed everywhere, so we got dressed up, and took a few pictures of my and the girls outside in our backyard. Something I cherish always, as it was the last and only picture I have of being pregnant.
Mother's Day arrived. I woke up to a wonderful breakfast in bed complete with cards and flowers. I was excited to get my day started. I got up out of bed, started my trek to the shower and experienced the worse pain ever in my lower abdomen. I screamed for Jason to help me down the stairs and immediately went into the bathroom. I was bleeding very heavy and knew right away that something was not right. I was loosing our baby. This baby that we wanted so much. Another child gone from our hearts. I tried to be accepting and happy knowing our little one would be with the angels in heaven. Know that this little one would be welcomed with arms wide open by his or her big sister. Know that him or her would be greeted by his Grandma and God and Jesus and all the wonderful people in our lives that were no longer with us. He or she would be happy, and loved. But I couldn't, wouldn't, didn't want too.
I stayed at home for a good part of the afternoon. The bleeding had slowed down. Jason thought it would be good to try to get out of the house. Jason's family had called to ask why we hadn't made it to lunch. He tried very hard to make excuses without telling them the real reason. But my future SIL would not let it go. Finally I got on the phone and told her flat out what was happening. Her response was "you could have least showed up for a few minutes." I was a mess after that. I didn't want to show up anywhere. I didn't want to see faces, be happy. Greet anyone. I wanted to hide under my covers. Ask why? And never come out. I had to start making phone calls. Tell people I had just told a few weeks prior that we had lost our little one. I was devastated, angry and sad.
Jason was so wonderful. He tried really hard to cheer me up. He took the girls shopping and brought home a T.V. for our bedroom. He wanted me to be comfortable. I told him that it didn't change the fact of what was going on. He said he knew that, but felt helpless. My husband deals with sadness a different way then me. He takes apart things, builds things or tries to put things back together. The T.V. was just as much of a distraction for him, as it would be for me. After he got it set up, I fell asleep. Crying. Lonely. Heartbroken.
The next day I scheduled an appt. in Boston for an ultrasound and blood draw. They wanted to make sure that my numbers were dropping and that I was "miscarrying" properly. Really, those are the words your going to say to me. Properly? I just wanted to scream.
Things went well. The nurse was gracious and sweet. He was sorry to hear that this was my second loss. She tried to comfort me, but really didn't know the words to say. She was young, Maybe 21. She tired to "be in my shoes" so to speak, but couldn't. I give her credit though.
Days, weeks, months went by. Very little of my friends or family know what happened. My heart hurts that we didn't know if our little one was a little boy or little girl.
The hurt and sadness of loosing our little one will always be a part of me. Though my days are new spend knowing that Anabelle has a sibling in heaven with her. She isn't alone anymore. She now has a sibling to keep her company. I am comforted to know that they are together in Heaven. Singing songs, making friends, telling secrets to each other. Until the day that we all can be together again as a family, I know in my heart that she or he is exactly where they belong.
My "three" Angels
We had a fantastic time in Florida. The girls enjoyed the rides, the water, and spending time with there grandparents, Auntie and Uncle and of course there cousin. It was a great 14 days for all.
When we arrived home, we immediately got involved with the baptism of Emma-James who was 3 months old when we returned. It was a wonderful afternoon. We released butterflies in Anabelle's honor. The weather was beautiful, the sky's a bright blue. Great friends and family joined us in celebrating Emma-James arrival and the memory of our daughter Anabelle. It was truly a blessing.
A few days after the chaos had ended. I took a test. I was elated to see that it was positive. That God had given us another blessing to celebrate. 2006 was beginning to be a fantastic year for us. After so much hurt and pain, it was really nice to have all the positive things finally happen in our lives. It was nice to see that 2006 was going to have a great start with a wonderful happy ending. I was due December 31st.
I wanted to tell Jason in a wonderful and romantic way. I went and purchased white, pink and blue balloons at the store and while everyone was sleeping, I blew up over 100 balloons (by mouth mind you) slipped a piece of paper in each balloon that said "Boy or Girl, December 31st 2006" and filled our bathroom full! I was so excited that I couldn't fall asleep the rest of the night. At 6:30am Jason's alarm went off. I could hear him get out of bed, walk down the stairs, and open the bathroom door. I sat there, wondering what his face looked like. Wondering if he figured out what was going on. Wondering if he was even awake enough to understand. I heard him puttering around the kitchen. My patience for him to walk upstairs was growing on me. Plus I really had to use the potty. Finally, after which seemed like an eternity, he came upstairs. Smiling ear to ear. He was excited and of course said "does this mean your pregnant" and I said yes. We went through the rest of the day walking on air.
The next few weeks went by without issue. I told my family. Called my doctor I had for Emma to schedule an early appt. with him. Only to find out he had left the practice. The other doctor refused to see me any earlier then 8 weeks. Even after telling him my past history and that I am to be seen right away, they wouldn't listen. I called up a good friend of mine in Providence, and they too couldn't help me. I felt trapped, worried and angry.
Mother's day was right around the corner. I was excited to spend the day with my "girls" and the new little one. We were planning on stopping in to see my husbands family, then drive to the Ocean for the rest of the day.
A few days before Mother's Day, I started spotting. I felt anxious and worried. I couldn't shake this feeling from me. I spend every moment looking up information on the computer. What to expect. What to look for. What to worry about. The bleeding slowed down. And about two days before Mother's Day had disappeared. I tried hard not to worry. But I did. Every moment I went to the bathroom, which was about every 20 minutes. I had to check. Had to see. What should I do. Should I call someone. Tell someone.
We decided to go out the day before Mother's day for a nice lunch. We knew Mother's Day would be packed everywhere, so we got dressed up, and took a few pictures of my and the girls outside in our backyard. Something I cherish always, as it was the last and only picture I have of being pregnant.
Mother's Day arrived. I woke up to a wonderful breakfast in bed complete with cards and flowers. I was excited to get my day started. I got up out of bed, started my trek to the shower and experienced the worse pain ever in my lower abdomen. I screamed for Jason to help me down the stairs and immediately went into the bathroom. I was bleeding very heavy and knew right away that something was not right. I was loosing our baby. This baby that we wanted so much. Another child gone from our hearts. I tried to be accepting and happy knowing our little one would be with the angels in heaven. Know that this little one would be welcomed with arms wide open by his or her big sister. Know that him or her would be greeted by his Grandma and God and Jesus and all the wonderful people in our lives that were no longer with us. He or she would be happy, and loved. But I couldn't, wouldn't, didn't want too.
I stayed at home for a good part of the afternoon. The bleeding had slowed down. Jason thought it would be good to try to get out of the house. Jason's family had called to ask why we hadn't made it to lunch. He tried very hard to make excuses without telling them the real reason. But my future SIL would not let it go. Finally I got on the phone and told her flat out what was happening. Her response was "you could have least showed up for a few minutes." I was a mess after that. I didn't want to show up anywhere. I didn't want to see faces, be happy. Greet anyone. I wanted to hide under my covers. Ask why? And never come out. I had to start making phone calls. Tell people I had just told a few weeks prior that we had lost our little one. I was devastated, angry and sad.
Jason was so wonderful. He tried really hard to cheer me up. He took the girls shopping and brought home a T.V. for our bedroom. He wanted me to be comfortable. I told him that it didn't change the fact of what was going on. He said he knew that, but felt helpless. My husband deals with sadness a different way then me. He takes apart things, builds things or tries to put things back together. The T.V. was just as much of a distraction for him, as it would be for me. After he got it set up, I fell asleep. Crying. Lonely. Heartbroken.
The next day I scheduled an appt. in Boston for an ultrasound and blood draw. They wanted to make sure that my numbers were dropping and that I was "miscarrying" properly. Really, those are the words your going to say to me. Properly? I just wanted to scream.
Things went well. The nurse was gracious and sweet. He was sorry to hear that this was my second loss. She tried to comfort me, but really didn't know the words to say. She was young, Maybe 21. She tired to "be in my shoes" so to speak, but couldn't. I give her credit though.
Days, weeks, months went by. Very little of my friends or family know what happened. My heart hurts that we didn't know if our little one was a little boy or little girl.
The hurt and sadness of loosing our little one will always be a part of me. Though my days are new spend knowing that Anabelle has a sibling in heaven with her. She isn't alone anymore. She now has a sibling to keep her company. I am comforted to know that they are together in Heaven. Singing songs, making friends, telling secrets to each other. Until the day that we all can be together again as a family, I know in my heart that she or he is exactly where they belong.
My "three" Angels
Wednesday, May 11, 2011
WHAT I WANT YOU TO KNOW: TRISOMY 18
Today marks a special day. Today Anabelle would be 6 1/2 years old. Here is the full story of our daughter and how we struggled with her diagnosis, doctors and the medical professionals during our year journey.
Christmas Photo 2004 (This was taken the day before she passed away)
Her story began like all new pregnancies do. With the announcement of "I am pregnant". I was excited, shocked, nervous. This pregnancy was nothing like finding out about my first. I knew in my gut the moment I took that test that something wasn't right. The severity of how badly things were to become were to unfold in ways you only see on soaps.
The first ultrasound appointment would marked the roller coaster ride of our journey. A missed heartbeat at my 8 week appointment would only show a tiny little thing measuring 5 weeks gestation. I knew how far along I was. I fought with the doctors, waited 3 hours to be see. The whole situation was a nightmare. Only to get worse.
I had horrible care from the Doctors. Many who just didn't seem to care that I was carrying a living, breathing baby. They would not let my husband in with me at any of the appointments. At my 19 week growth scan I was excited to confirm my suspicions that we were indeed having another little girl. A little girl we would name Anabelle. After loosing my mother-in-law only a few short months before, Anabelle would be the start of something happy to finally look forward too. A happy welcome to the dreaded start of the new year. She was to be named after Ana, her Vovo.
I went into the appointment alone. Scared. Worried. The ultrasound tech was cruel, cold, and had no heart. She would scream at me to move a certain way, to stop talking. I asked to see the monitor and she refused. Another doctor came in, and I knew that moment something wasn't right. I saw a glimpse on the screen. She didn't look like a healthy 19 week little one. Her face was shaped differently and her belly just seemed small to me. I left the appointment feeling confused, worried and needing answers. My husband chalked it up to the office staff and their unwillingness to have a heart.
The following day after my appointment I left to visit family in Maine. Its then I got that call that would change my life FOREVER. I can still recall the words of the nurse on the other line, calling from the Rhode Island prenatal diagnosis center. "Miss. Martin, I am calling to let you know that we received your blood work and your daughter's (congratulations by the way on your little girl) recent ultrasound pictures and your blood AFP test. I just want to let you know that we have noticed that she has some chorid plexis cysts on her brain. This could possibly be the result of a chromosomal defect, but in 90% of the cases, they go away on their own and its nothing to worry about." This is when I asked her what kind of defects could it be. and she told me "Trisomy 18 is one of them, but please don't put yourself in a panic and by all means, don't go on the internet to look it up, it will only worry you more." The rest of the conversation was a blur. I remember making a new appointment with her for the end of the week. Jason wasn't with me visiting family, so I called him on the phone and told him the news. Immediately I went searching on the internet. What I found was devastating. Death and "Failure to Thrive" were pretty much the theme of any articles I read. I told myself I would wait until further testing, but still continued to find out all I could on this subject. Calling, researching, talking with anyone who would listen.
I finally returned back from Maine and barely had anytime to really grasp what was going on. We were immediately seen by a high risk doctor and prenatal genetic counselor. Both whom I immediately disliked. I found myself growing a *VERY* thick skin and immediately spoke up and said that I wanted someone different. Thankfully, they were accommodating and I had very little issue getting both a new doctor and new counselor. To this day, I am so grateful I made that switch. Our genetic counselor Caroline was amazing. We fell right in love and she really listened to everything I had to say. She never once made me feel like I was crazy for trying so hard. She did everything she could to look into all the current information I had for Trisomy 18 and was always available anytime I called. I just loved her.
She of course went over the statistics, let us know what "COULD" be the outcome, but because of my age and testing numbers, it just didn't all add up. Many of the Doctors begged us for an amnio but I refused. I knew that if the outcome wasn't good, and she was born alive, they would not do any life saving measures even if we requested it. I did NOT want this for my daughter. So we said no. The risk of the amino far outweighed our options to find out her genetic makeup.
We went through our pregnancy as "normal" as possible. Normal for us was now coupled with NST's (Non Stress Tests) Ultrasounds, and growth checks three times a week. Depending on how Anabelle was feeling on a particular day, we could be anywhere from 20 minutes in the office to 3 hours. So it made the last 12 weeks very long. Babies with Trisomy 18 typically don't move around a lot in utero, and if they do, because of their small size would make it harder for you to feel them moving. I spend many evenings worrying and wondering if she would still be alive. I think it was the hardest time for me. I just couldn't come to terms if she was to pass away before she even had a moment to live. I accepted the fact that there was a 99.9% chance she was not going to be with us, I just wasn't willing to accept the fact that she could pass away before being born. And I didn't.
Her arrival was a stressful one. Not even a happy joyful one. I spend a good 2 hours in the Delivery Triage of the hospital. My first time at Woman and Infants (as I had my first child in Boston) I was expecting a warm atmosphere, with nurses and doctors their to help you anyway they can. That didn't happen. Instead, I found myself arguing with a doctor that wanted me to have an amnio. I was only 37 weeks at the time, and he felt that it was just too early to deliver her, not knowing if her lungs were mature. I flat out told him, under no circumstances would I have an amnio. She had stopped growing 2 weeks ago, and it was time to deliver her that day. I told him if he wanted an amnio done so badly, go do it on himself. I was angry, livid and tired of doctors thinking that they always new best because they had the piece of paper hanging on some dingy wall saying they did. He wasn't happy with me and spoke to my husband saying "Are you going to let her speak to me like that." My husband, looked him right in the eye and said, YES I AM. Your on your own buddy. He left the room and didn't return. About 30 minutes later, a nurse came in the room, in a very rude tone and said I got my wish. Looked right at me and said that my husband and then 22 month old daughter had to leave, that they weren't allowed upstairs. I was livid by then. Jason quickly made arrangements for our daughter to stay with a friend until my mom and sister arrived later that night/early morning. They brought me upstairs at 8pm and things began pretty quickly.
I told them that if she came out breathing, I wanted to see her before they whisked her away, that they were to help her based on her being a child, not a child with possibly having Trisomy 18, and that my husband was to go with her after delivery to the NICU.
From the moment I was hooked up to the monitors and settled in with the nurse, its the last thing I remember before Anabelle was born. After she was delivered I remember them working on her, bringing her downstairs, and Jason going with them. That's all. I struggle everyday with this, because I don't have the memories I want to have. Only the ones people tell me, or I see in small video segments that Jason was able to capture.
Anabelle Eileen Martin Rodrigues was born on November 11, 2004 at 6:19am. Weighing in at 4lbs 6 oz and was 17 inches long. She was beautiful, she was tiny, she was ALIVE!
The next few days were an emotional roller coaster. From hearing doctors and nurses tell you she would not survive the night to others telling you that I had to just let her go and stop dreaming a life that she would never have. I knew the outcome, and I knew the statistics. The difference between myself and all those people around me, was that I had hope. Hope for her, hope for myself. Hope for other parents dealing with this now and in the future. I didn't want Anabelle to be just a number in a book. I wanted her to do as well as SHE could do. And that was the most important to me. I would fight for her and with her as much as she needed me too. She was my child, my daughter. I didn't see her disability, I saw her as a beautiful baby who just needed the extra love and support to get through each day.
Yes Anabelle had Trisomy 18, later confirmed by blood work two days after her birth. Yes she showed all the signs of a baby with Trisomy 18. Small weight, strawberry shaped head, fingers that were crossed and wouldn't open up, small eyes, nose and mouth. Ears that were shaped as if she were a little elf. I loved her just the same.
We spend the first 19 days of her life in the NICU at WOMAN AND INFANTS HOSPITAL. I loved her nurses. They were caring, warm and friendly. They took their job very seriously and loved the babies as if they were there own. We found out one of Anabelle's nurses had gone to school with two of my classmates from high school. Which was very comforting. She called all the time, took pictures when she could and kept up with Anabelle's day to day health. She truly did fantastic. She was on a breathing machine, but was only on room air, she was being fed by a tube through her nose and overall was very healthy.
When the day arrived for her to come home. My heart must have been beating out of my chest. I was worried she wouldn't make it off the machine. That she would pass away minutes or hours after they took the tubes out. I was a wreck, but didn't show it. I wanted her to prove to the doctors that Trisomy 18 isn't a text book case. Its something you have to handle based upon your understanding of that particular child. Not as a whole, but individually. I remember her doctor from the NICU wanting to be there. A mean souled man who I truly found myself hating more and more with each passing day. After she came off the machine, he wanted to hold her before we left. I reluctantly gave him the ok. The minute he picked her up, she not only threw up all over him, but had a very large accident as well. I told him it served him right speaking ill about her next to her bed. Putting her in the grave before she was even there. I didn't know how long she would have with us. But that moment made me feel like my choice of carrying her to term and helping her live was truly the best one.
Anabelle left the hospital on November 29th 2004 weighing in at 3 lbs 15 oz.
When we took her home, we wanted it to just be the family. Myself, Jason and Olivia. A family of four. We spend that day enjoying each other. Watching movies, eating lots of take out. Making memories. The next two weeks before her passing was a whirlwind. We took trips to the mall, saw Santa, visited family. Tried to make as many memories as possible.
The last day of her life was hard but beautiful. She passed away peacefully in my arms at exactly one month of age on December 11, 2004. She was the sweetest little girl. She taught me to fight for what I believe in, that no one person knows all the answers, and that I can do anything that I put my mind too. I learned so much that year carrying her, giving birth to her, watching her here on earth and then loosing her. It's never easy to loose a child, but I don't look at it as loosing her, I look at it as though I gained much more then her passing.
Anabelle Eileen Martin Rodrigues
If you or someone you know has had or is currently going through a diagnosis of Trisomy 18 please feel free to contact me at kiley@walkingalready.com or visit my blog at www.kileyandjason.blogspot.com. I am happy to help anyway possible. Any and all questions can be asked and nothing is too personal.
Christmas Photo 2004 (This was taken the day before she passed away)
Her story began like all new pregnancies do. With the announcement of "I am pregnant". I was excited, shocked, nervous. This pregnancy was nothing like finding out about my first. I knew in my gut the moment I took that test that something wasn't right. The severity of how badly things were to become were to unfold in ways you only see on soaps.
The first ultrasound appointment would marked the roller coaster ride of our journey. A missed heartbeat at my 8 week appointment would only show a tiny little thing measuring 5 weeks gestation. I knew how far along I was. I fought with the doctors, waited 3 hours to be see. The whole situation was a nightmare. Only to get worse.
I had horrible care from the Doctors. Many who just didn't seem to care that I was carrying a living, breathing baby. They would not let my husband in with me at any of the appointments. At my 19 week growth scan I was excited to confirm my suspicions that we were indeed having another little girl. A little girl we would name Anabelle. After loosing my mother-in-law only a few short months before, Anabelle would be the start of something happy to finally look forward too. A happy welcome to the dreaded start of the new year. She was to be named after Ana, her Vovo.
I went into the appointment alone. Scared. Worried. The ultrasound tech was cruel, cold, and had no heart. She would scream at me to move a certain way, to stop talking. I asked to see the monitor and she refused. Another doctor came in, and I knew that moment something wasn't right. I saw a glimpse on the screen. She didn't look like a healthy 19 week little one. Her face was shaped differently and her belly just seemed small to me. I left the appointment feeling confused, worried and needing answers. My husband chalked it up to the office staff and their unwillingness to have a heart.
The following day after my appointment I left to visit family in Maine. Its then I got that call that would change my life FOREVER. I can still recall the words of the nurse on the other line, calling from the Rhode Island prenatal diagnosis center. "Miss. Martin, I am calling to let you know that we received your blood work and your daughter's (congratulations by the way on your little girl) recent ultrasound pictures and your blood AFP test. I just want to let you know that we have noticed that she has some chorid plexis cysts on her brain. This could possibly be the result of a chromosomal defect, but in 90% of the cases, they go away on their own and its nothing to worry about." This is when I asked her what kind of defects could it be. and she told me "Trisomy 18 is one of them, but please don't put yourself in a panic and by all means, don't go on the internet to look it up, it will only worry you more." The rest of the conversation was a blur. I remember making a new appointment with her for the end of the week. Jason wasn't with me visiting family, so I called him on the phone and told him the news. Immediately I went searching on the internet. What I found was devastating. Death and "Failure to Thrive" were pretty much the theme of any articles I read. I told myself I would wait until further testing, but still continued to find out all I could on this subject. Calling, researching, talking with anyone who would listen.
I finally returned back from Maine and barely had anytime to really grasp what was going on. We were immediately seen by a high risk doctor and prenatal genetic counselor. Both whom I immediately disliked. I found myself growing a *VERY* thick skin and immediately spoke up and said that I wanted someone different. Thankfully, they were accommodating and I had very little issue getting both a new doctor and new counselor. To this day, I am so grateful I made that switch. Our genetic counselor Caroline was amazing. We fell right in love and she really listened to everything I had to say. She never once made me feel like I was crazy for trying so hard. She did everything she could to look into all the current information I had for Trisomy 18 and was always available anytime I called. I just loved her.
She of course went over the statistics, let us know what "COULD" be the outcome, but because of my age and testing numbers, it just didn't all add up. Many of the Doctors begged us for an amnio but I refused. I knew that if the outcome wasn't good, and she was born alive, they would not do any life saving measures even if we requested it. I did NOT want this for my daughter. So we said no. The risk of the amino far outweighed our options to find out her genetic makeup.
We went through our pregnancy as "normal" as possible. Normal for us was now coupled with NST's (Non Stress Tests) Ultrasounds, and growth checks three times a week. Depending on how Anabelle was feeling on a particular day, we could be anywhere from 20 minutes in the office to 3 hours. So it made the last 12 weeks very long. Babies with Trisomy 18 typically don't move around a lot in utero, and if they do, because of their small size would make it harder for you to feel them moving. I spend many evenings worrying and wondering if she would still be alive. I think it was the hardest time for me. I just couldn't come to terms if she was to pass away before she even had a moment to live. I accepted the fact that there was a 99.9% chance she was not going to be with us, I just wasn't willing to accept the fact that she could pass away before being born. And I didn't.
Her arrival was a stressful one. Not even a happy joyful one. I spend a good 2 hours in the Delivery Triage of the hospital. My first time at Woman and Infants (as I had my first child in Boston) I was expecting a warm atmosphere, with nurses and doctors their to help you anyway they can. That didn't happen. Instead, I found myself arguing with a doctor that wanted me to have an amnio. I was only 37 weeks at the time, and he felt that it was just too early to deliver her, not knowing if her lungs were mature. I flat out told him, under no circumstances would I have an amnio. She had stopped growing 2 weeks ago, and it was time to deliver her that day. I told him if he wanted an amnio done so badly, go do it on himself. I was angry, livid and tired of doctors thinking that they always new best because they had the piece of paper hanging on some dingy wall saying they did. He wasn't happy with me and spoke to my husband saying "Are you going to let her speak to me like that." My husband, looked him right in the eye and said, YES I AM. Your on your own buddy. He left the room and didn't return. About 30 minutes later, a nurse came in the room, in a very rude tone and said I got my wish. Looked right at me and said that my husband and then 22 month old daughter had to leave, that they weren't allowed upstairs. I was livid by then. Jason quickly made arrangements for our daughter to stay with a friend until my mom and sister arrived later that night/early morning. They brought me upstairs at 8pm and things began pretty quickly.
I told them that if she came out breathing, I wanted to see her before they whisked her away, that they were to help her based on her being a child, not a child with possibly having Trisomy 18, and that my husband was to go with her after delivery to the NICU.
From the moment I was hooked up to the monitors and settled in with the nurse, its the last thing I remember before Anabelle was born. After she was delivered I remember them working on her, bringing her downstairs, and Jason going with them. That's all. I struggle everyday with this, because I don't have the memories I want to have. Only the ones people tell me, or I see in small video segments that Jason was able to capture.
Anabelle Eileen Martin Rodrigues was born on November 11, 2004 at 6:19am. Weighing in at 4lbs 6 oz and was 17 inches long. She was beautiful, she was tiny, she was ALIVE!
The next few days were an emotional roller coaster. From hearing doctors and nurses tell you she would not survive the night to others telling you that I had to just let her go and stop dreaming a life that she would never have. I knew the outcome, and I knew the statistics. The difference between myself and all those people around me, was that I had hope. Hope for her, hope for myself. Hope for other parents dealing with this now and in the future. I didn't want Anabelle to be just a number in a book. I wanted her to do as well as SHE could do. And that was the most important to me. I would fight for her and with her as much as she needed me too. She was my child, my daughter. I didn't see her disability, I saw her as a beautiful baby who just needed the extra love and support to get through each day.
Yes Anabelle had Trisomy 18, later confirmed by blood work two days after her birth. Yes she showed all the signs of a baby with Trisomy 18. Small weight, strawberry shaped head, fingers that were crossed and wouldn't open up, small eyes, nose and mouth. Ears that were shaped as if she were a little elf. I loved her just the same.
We spend the first 19 days of her life in the NICU at WOMAN AND INFANTS HOSPITAL. I loved her nurses. They were caring, warm and friendly. They took their job very seriously and loved the babies as if they were there own. We found out one of Anabelle's nurses had gone to school with two of my classmates from high school. Which was very comforting. She called all the time, took pictures when she could and kept up with Anabelle's day to day health. She truly did fantastic. She was on a breathing machine, but was only on room air, she was being fed by a tube through her nose and overall was very healthy.
When the day arrived for her to come home. My heart must have been beating out of my chest. I was worried she wouldn't make it off the machine. That she would pass away minutes or hours after they took the tubes out. I was a wreck, but didn't show it. I wanted her to prove to the doctors that Trisomy 18 isn't a text book case. Its something you have to handle based upon your understanding of that particular child. Not as a whole, but individually. I remember her doctor from the NICU wanting to be there. A mean souled man who I truly found myself hating more and more with each passing day. After she came off the machine, he wanted to hold her before we left. I reluctantly gave him the ok. The minute he picked her up, she not only threw up all over him, but had a very large accident as well. I told him it served him right speaking ill about her next to her bed. Putting her in the grave before she was even there. I didn't know how long she would have with us. But that moment made me feel like my choice of carrying her to term and helping her live was truly the best one.
Anabelle left the hospital on November 29th 2004 weighing in at 3 lbs 15 oz.
When we took her home, we wanted it to just be the family. Myself, Jason and Olivia. A family of four. We spend that day enjoying each other. Watching movies, eating lots of take out. Making memories. The next two weeks before her passing was a whirlwind. We took trips to the mall, saw Santa, visited family. Tried to make as many memories as possible.
The last day of her life was hard but beautiful. She passed away peacefully in my arms at exactly one month of age on December 11, 2004. She was the sweetest little girl. She taught me to fight for what I believe in, that no one person knows all the answers, and that I can do anything that I put my mind too. I learned so much that year carrying her, giving birth to her, watching her here on earth and then loosing her. It's never easy to loose a child, but I don't look at it as loosing her, I look at it as though I gained much more then her passing.
Anabelle Eileen Martin Rodrigues
If you or someone you know has had or is currently going through a diagnosis of Trisomy 18 please feel free to contact me at kiley@walkingalready.com or visit my blog at www.kileyandjason.blogspot.com. I am happy to help anyway possible. Any and all questions can be asked and nothing is too personal.
Subscribe to:
Posts (Atom)