It was most important and hardest part in my life.
The most important and hard part in my life is when my baby sister (Jaiden Ann Friebolin) passed away because she had a syndrome, called Smith Lemli Opitz syndrome. Its a very rare condition that she was born with. Jaiden was born on June 21, 2011 when she past away she was only 7 months and 9 days she was still a baby. My mother was told that she would only live for 2 months top, because of the rare severe condition she was in. The syndrome Jaiden had was smith lemli opitz, it had a whole lot of affects -very rare. Like small head size, Malformations to the heart, lungs, kidneys, gastrointestinal tract, and genitalia, Infants with the syndrome have weak muscle tone and tend to grow more slowly, most affected individuals have fused second and third toes and some have extra fingers or toes. A little extra about Jaiden; Jaiden had a small head, problems with her kidneys and heart, and she had webbed toes and an extra pinky on each hand.
She had to stay in the hospital -Childrens Hospital very nice and sad- when she was born, because of her syndrome. The only cause of my mom and her ex getting together -at the time- (they were both carriers). The effect of them getting together is when my mom had Jaiden she was born with the syndrome because both of their conditions of being carriers. It was very hard for everyone that help out with jaiden because she had to be on her tubes, and always had to be watched also because she was a baby. Baby jaiden wasn't aloud to walk,hear,or be on her back. My mom would put her on her tummy sometimes just so she didn't have to be on her side laying there. We were aloud to hold her just not away from her electronics and we weren’t aloud to unplug her tubes because she needed help breathing.The most important part of my life with my sister was when she was born she was rushed to children's hospital, I don't think my mom was even allowed to hold her. When my mom was out of the hospital and everything my mom would take turns on visiting with baby Jaiden, coming out to Kenosha to come and get me, my aunt, and my cousins even some times my grandma would come and some of my moms friends. When we went up there to visit baby Jaiden, we would stay at the Ronald McDonald house in Milwaukee. It was right across the street from the hospital so it wasn't bad or far. It was really sad when we went to the hospital because of all the drawing of the little kids there with all different conditions. We would see all these babies and hear crying and it was very sad. There were visiting hours for everyone if you weren't the parent of the child, so that meant me and everyone else had to wait just to see her. If I remember correctly it was 7am-8pm but im not sure I think it was later than that. At the ronald mcdonald house, there were so many rooms and levels it was big. They had a gaming room, four kitchens, a huge play room that had another one connected, art room so many supplies, and so much more. It may seem fun but it really isn't if you have a baby sister thats sick. When me and my mom visited my baby sister, we would walk across the street, go in a elevator, push the number four on the door and I would look out the window waiting to go see my baby sister, and walk thru all the halls and talk to the doctors that worked there, wait in the waiting room, and finally we would see her. She was so cute, she couldn’t really cry but when she was upset she would try to make a little scream it sounded like she was squeaking so cute but sad. We had to be very careful while holding her tho because of her tubes and make sure we wouldn’t hurt her. She was brittle boned because of her condition and because she was still a baby. After we would visit we would go back across the street. Sometimes sense there was nothing to do me and my cousins would walk around and do random fun things. We would go down stairs and look in this box that had the silly rubber bands back when they were popular. After about 2 weeks of my sister being at the hospital, she came home. After my mom had to learn how to take care of her. How to change her tubes and everything. She was okay to come home. Sence she was a baby we had to watch her and she wasn’t aloud to sleep with my mom or anyone. They could of easily rolled over and suffocated her. Jaiden had to stay in her changing table. So since she had to stay there my mom had to sleep in the room with her on a blow up mattress -same room not bed. And every two to four hours my mom had to feed,change, check, burp, and give her medicine. It was very hard but we cared alot. My mom, Jaiden’s dad, and Jaidens grandma & grandpa took turns watching her. Jaiden had to take nine different kinds of medicine. She had to take Morphine, Lorazepam, Tylenol, Metoclopramide, Cholesterol, Captopril, Ursodiol, Codified, and Prilosec. Imagine getting up every four hours to take care of a helpless baby.. It got kinda harder for my mom after we moved here. My mom didn’t want to live in Salem anymore so we moved her. It was also hard on me, being new at a school and having a baby sister that was dieing slowly. I didnt know anyone that was here when I came. I sure did get along with most of them and having the sixth grade teachers help me was great. Im not sure what was going on at home while I was at school. About a month or two not even, almost every day when I got home my mom would tell me about my sister saying she was coughing up blood. I wasn’t really aware of that meaning my sister was gonna pass away soon.On January 30th when I got home, my baby sister was having problems. She was coughing up blood and wouldn’t calm down. Around 5:30pm my mom called almost every one like doctors,family, and friends. Im guessing she knew the time was coming. I still didn’t have the best idea of what was going on but I was still crying so was my mom. When everyone got here I sure did get the message that my baby sister was gonna pass away. Everyone was crying, even my grandmother that didn't get along with my other grandmother were hugging and crying. It was sad and it was horrible. There wasn’t a lot of people in my moms room because its not that big. Every one was kinda rotating and we were all taking turns on holding baby jaiden for the last time. I only got to hold her for about five minutes because her dad just got to the house crying because his baby girl was dieing and he was at work rushing his way to get her to say good bye. It was all heart breaking, just the fact that your baby sister is passing away, and that most of our family is here and we are all crying. Everyone got kicked out a the room right after baby jaiden pass away in her dad’s arms we were all in the living room crying or in the hall. we all had to get out of the way for the police, and guy that took pictures of baby jaiden while she was gone. My mom told me to get out the room but I didn't want to leave my sister. My mom didn’t want me to see my baby sister, because the guy that was taking pictures had to take them to make sure no one killed her or did anything else so pathetic like that. I was pretty mad at him for taking pictures of a baby that just passed away.It was 7:30pm when this all happened, Its just something I can't forget. I was really strong while all that was going on I wasn’t really crying when everyone else was I was just pacing back and forth. When my heart sunk and I started crying is when my mom was by the front door with my baby sisters body. She told me to give her one last hug, and thats when I lost it. I started crying really bad worst than anyone else in the whole room. I was holding her and the lady that was going to take her away was standing outside of the house waiting with her death van I was so upset I didn’t want her to leave I guess me freaking out made my mom and everyone else feel worst.Everyone was just staring at me I couldn’t see anything my eyes were so full of tears, I wouldn't let go of her at all. Once they pulled me off and hugged me. After I was all settled down and all. I was crushed that my mom let them take her, you don’t know how it feels. I still don’t like the fact that they took pictures and took my baby sister away. Even tho they had to.After a week or so we went to a funeral home to see where we would have her funeral at. It was big, had an upstairs and everything. I even got to see my sisters body again but it was very cold and the lady had to put makeup on her so Jaiden didn’t look blue and purple like a dead body. When the funeral came I was so glad to see my best friend and cousin they both got me in a better mood before it all started. We were downstairs eating cookies and making jokes it didn’t really feel like a sad place once you were away and forgot about it all. Once it all started there was a tv at the back of the room it was playing a little disc of pictures of Jaiden one after another. Up front was baby Jaiden’s body and a whole bunch of pictures. On the right in the cornish was a collage poster of pictures of Jaiden and others with her in it that I made.Jaiden’s grandpa went up and said something to everyone there how she was basically suffering being here, and now shes up in heaven walking, talk, laughing, having a blast, and running with the sheep! Something cute and funny like that but he said it way better. Once everything was done I was heart broken that my sister was gone for good. It was one of the hardest days of my life. I dont think I could ever forget about my baby sister. My mom wanted Jaiden to be cremated. Jaiden was cremated her ashes are in a little cute flowered urn on a shelf ,of other things of hers or that we give her in my moms room. I have my poster in my room. I also have a shelf for Jaiden -stuff that reminds me of her or stuff she had-like teddy bears made out of Jaiden’s clothes. Right below the shelf on the wall is my poster. I only have one picture with me and Jaiden. My favorite picture is with my baby sister. Thats why its on my dresser all nice and right in the middle so I can see it. I don’t move it unless I fix it or things around it. My baby sister is very important to me. Thats my story, hope it was good.
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