Tag: Disabilities

Happy World Downs Syndrome Day

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It is World Downs Syndrome Day and I couldn’t not write today! My favorite person with Downs Syndrome is my sister! Anyone who has read the blog so far has started to hear the story of my sister. I was her younger sister so I didn’t know the world any different without Annie in it. She was my older sister and that was how life was. She has a personality as large as it gets and she has an opinion that she will let you know exactly what she is thinking. She is a lot of fun to be around and she was a great sister to grow up with.

Growing up with Annie was always an adventure and it led me to have to navigate a world that I didn’t realize I was navigating through. I had to be bigger for her. I had to make sure she got what she needed when she needed it. I was twelve and we participated in Special Olympics together. I was the volunteer that walked her from event to event. I made sure she was taken care of, that she drank her water, that we found all the events, and that we found my mother when it was time to take her medications. It was all a part of growing up and I am grateful for it. It made me have a completely different outlook on life. One that was bigger then myself.

Annie showed me the world through her eyes. I saw her work hard for everything she got. She was determined to do everything all her siblings were doing. She didn’t let her handicap slow her down. She had two congenital hips when she was born and my mother was told she probably wouldn’t walk but she walked. My mother pushed her and she in turn didn’t let life slow her down all growing up. It was amazing to watch her grow and learn throughout our childhood.

One of my favorite stories of Natalie happened on her birthday. My husband and I were poor college students and we picked her up to take her to dinner and a movie. After we picked her up we told her we would take her to wherever she wanted to eat dinner (thinking she would pick Chilies, or a fast food restaurant) . Without skipping a beat she said Red Lobster. WHAT!?! We were poor college students we couldn’t afford red lobster. My husband talked her into wingers and we got there and she wanted the largest plate of wings on the menu. I think the wings were just as expensive as Red Lobster would have been! It was a great night but we learned to give her select options after that! 🙂

Anyway, I love her so much and am grateful that I grew up with her! Happy World Downs Syndrome Day, the world is a better place with you in it!

-Rachel

The Start of our Fight

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Freshly home from the hospital I was on a mission to help my daughters Jaundice as much as possible.  Our doctors appointment for the test was Monday.  Throughout the weekend we sat by the window so she could get some sun but to no avail the Jaundice became more and more apparent. Monday morning came and we left for the doctors appointment.  They took her blood and then we waited for the results.  During her appointment I mentioned a few things I had noticed during the weekend.  The doctor took note and sent us home to await the news of the test.

Later that day the doctor called with her results.  The count was high, really high, and we needed to take her to the children’s hospital and have them do a more accurate test.  If the results were similar to the test performed at the doctors office she would be hospitalized.  A danger of having a high bilirubin level is brain damage.  My mind was in overdrive as I went to the children’s hospital to see what the accurate test said.  We arrived at the hospital and had her tested.  The doctor at the children’s hospital arrived, examined my little girl, and explained that the test results were high. That meant we were going to be here for a while.  He further explained that she would be under the bilirubin lights, an IV, bottle fed, and countless lab tests. When she was born the Thursday before she had a hole in her heart but when the doctor checked again today it was closed.  That lifted my spirits a bit. That was one problem I could cross of my list.

As we waited to be admitted to the hospital I was dealing with a torrent of emotions.  I felt helpless, guilty, sad, and alone. I felt I was walking a path I knew nothing about and was trying desperately to learn.  I saw mom’s who looked like they were very comfortable at the children’s hospital as if it were second nature.  I held my baby and wondered if I was every going to get to that point.  My husband and I were trying to juggle all we had going on with a small family and I felt like I already wasn’t keeping up. We were four days into this and she had landed back in the hospital. I tried to do everything I could to keep her out of the hospital but she had still ended up there.  I had failed! I had tried and I had failed!  I wondered if this is what the rest of my life was going to look like.  Trying and failing!?!

After a four hour wait we were finally admitted to the hospital. As the nurses took her to get her settled in her room and under the lights, it was late at night. I had to leave her in the care of her nurses so that my husband and I could pick up my boys from the sitters.  As I left I was numb, I had a headache from crying. We put the boys to bed and waited for the morning to come.  At breakfast my little boys asked where their sister was.  I had to explain that she had to go back to the hospital.  As I said the words I still felt like I had failed her.

As I arrived at the hospital the next morning I walked in and her head was half shaved so they could place the IV. As I saw her I was overcome with emotion and started to cry.  I wish that she didn’t have to be here! All of a sudden a nurse looked over at me and said, “Your baby is handicapped, what are you crying for?”  I was appalled at the callus way the world looked at her.

In the last 4 days I was told by multiple people not to care or worry about this child because she was handicap. I was presented with multiple options on how to “deal” with her. I knew I didn’t know what I was doing and I was not experienced, but I also knew that no little baby needed someone to give up on them right from the start. I didn’t feel like that was fair for her. She needed the love and help of all those around her.  I felt a strong need to fight for this little girl.  Three days into the hospital stay she was so mad at the nurses and the IV cords that she turned over in her bed.  I saw the fight and the stubborn streak she had and my heart grew! Yes, she was handicapped, and yes, she would have her limits, but I was going to push her to those limits. As hard as she was willing to fight, I was too!

-Gail

The Scramble

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As we meet our little girl, the doctors started talking to us a mile a minute. I felt like I was walking into the woods at dusk with fog rolling in. I can see a few steps in front of me and then quickly I can’t see anything at all. I am guessing what I am doing. I am guessing the path but never before had the path been so important. I hear what they are saying but I feel completely inadequate to be the one making decisions for this precious baby. Each decision I made at this point mattered. It wasn’t a choice about the outfit I would take her home in, these were choices that would affect my little baby for the rest of her life. As the doctor’s continued to talk they asked me if I had any questions.

Questions?!?

I screamed in my head. I don’t know enough to have any questions. I am looking at my little girl and I don’t know what to ask, I don’t know how to help, I don’t know what to do. All I know is she is mine and I have to make these decisions for her. My daughter’s pediatrician said we would start with an X-Ray to determine if her heart was on the right side of her chest. The X-Ray would also help determine if she had congenital hips, and any other physical issue we would be dealing with. She also reminded me that I needed to make sure to call her office and order the test for Jaundice as soon as we left the hospital. As she mentioned this I reminded her that both my boys had Jaundice. I was pretty sure she would have it as well. We were off and running and I was holding on for dear life, as I tried to wrap my head around it all.

If dealing with my new baby and her needs and making sure our two boys were taken care of wasn’t enough we started getting the families opinion on the matter. My husbands parents didn’t want us to keep the baby. We were a young couple and they didn’t want us to have to carry the “burden” that this child would bring. They wanted my baby to be institutionalized. My husband firmly let them know there was no way that was going to happen. Our little girl would not be thrown to the waste side before she had a chance to be anything. We would figure this out, the best we could.

As I was dealing with all the immediate needs my daughter had my children’s pediatrician was setting up the beginning of a support system for me. She called the different state agency’s involved in handicap children and parents to get the ball rolling. They called me while we were still in the hospital. We set up a home visit in three weeks and a parent group that would start teaching me how to work with my handicap child. Both the state worker and I were impressed at how fast my pediatrician got the ball rolling. As I got off the phone I was grateful for my pediatrician and the help that she had given me. I didn’t feel as alone knowing she was setting up a way to give me help. I just had to make it three weeks.

After all the tests were done and we were told what we were dealing with it was time to take my daughter home. Her heart was on the correct side of her chest but she did have congenital hips. With this information and a promise of more information to come we were ready. As we were preparing to take her home they asked me again if I had any questions… again, I didn’t know what to say. I hadn’t had time to think of any questions. I am sure I had some but what were they? I told them I didn’t have any questions at this time but I knew the second I left the hospital a million questions would flood my mind. As I buckled her into her car seat I was on full survival mode. I didn’t know what else to do but go home and introduce her to her two older brothers.

-Gail