I asked some of Amy’s family and friends to write about what it is like to have a sister, niece, cousin, or friend with Down syndrome. Here are their stories.
Christie Jergens (Amy’s Sister)
What is it like to have a sister with Down syndrome? I have three younger sisters and each one has a unique personality and unique relationship with me. I love them all equally the same. Amy is very independent, loves music, babies, swimming, and spending the night at my house. A few summers ago we went to the grocery store to buy some chicken. Amy went up to each stranger in the store and giggling said, “Hi my name is Amy. This is Christie. We are going to make chicken.” No one could understand what she was saying so I translated. (I have to do the same thing with my two year old son.) I love how carefree she is, how making chicken and spending time with me is the most fun thing in the world. She appreciates the little things in life.
When we go out in public she will go up to strangers and talk to them or hug them, she will make weird noises to get attention (interestingly, she only does this in public), and of course, she talks to herself a lot. Amy is the one who makes herself stand out, it’s her personality, not Down syndrome. It doesn’t bother me because that is just Amy. If she is acting too silly, I just say “Amy stop acting weird, everyone is looking at you” and then she laughs. My parents live in a small town and everyone knows Amy. And Amy knows everyone. We cannot go anywhere in my parents’ town without someone saying, “Hi Amy.”
I don’t view Amy as having Down syndrome; I view her as my sister Amy. I have the same emotions toward Amy as my other sisters. Amy shows emotion right back. One situation that comes to my mind is when all of her friends got invited to a birthday party except her. She told mom she had a stomach ache and was visibly upset that she wasn’t invited. She just kept repeating over and over that she was supposed to be at the party. I think every little girl would have felt left out whether she had Down syndrome or not.
Five years ago I had a baby named Samuel. I think Amy was the most excited. When I was pregnant she would lay next to me with her hand and face on my belly waiting for the next kick. After he was born, she wanted to do everything to help me with him. At times I was frustrated with her because she would nag me to do every little detail and I had to watch her carefully so she wouldn’t pick him up without me being right there. When I nursed the baby, she would put her face as close as she could to me and just gaze at him. I had to make a rule that she had to sit one couch cushion away from me while I fed the baby! Another thing she did a lot was make baby noises for attention. It was such big changes having someone else get all the attention. But it has been a good change. It has been so fun for me to watch Samuel’s and Amy’s relationship develop. Samuel shrieks with excitement when Amy gets off the school bus. They are like siblings, sometimes they play so well together, other times they tease each other. At times Amy doesn’t want anything to do with him and will say, “No Samuel, Amy watch a show by self” and so we give her space. Samuel teases her by saying, “Amy baby doll crying” and Amy says, “No, baby sleeping!” Samuel says, “No baby crying” and they go back and forth. It is so funny! I make a conscious effort to let Amy take care of Samuel. When Samuel was 1 ½ years old, I let Amy take him around the farm to pick an apple from the tree, watch a show, play with the puppies, or go for ride in the stroller. She does so well with him. When I look at Amy’s life, my most favorite thing has been to watch her interact with Samuel. I think they have a very unique and amazing relationship and I am looking forward to watching their relationship develop more as they both grow older.
Kelly Miller (Amy’s Sister)
As I have sat and thought about Amy, many emotions come over me as I recall the past 16 years with this amazing person. There are so many memories that have changed the person I am today: memories of walking around holding the back of the hula hoop until she was steady enough to let go and walk, lapping the pool endless times until she had enough confidence to take her hand off my arm and swim on her own, reading words over and over again until she is reading sentences by herself, practicing riding bike and now she does it with ease, holding her little fingers as we jumped on the trampoline, and now she jumps for hours. Having to constantly rewind and push play on her CD player and now she dances in her room controlling the volume to her desire. Pushing a little bald baby so carefully in her stroller to her pushing my son with an unexplainable love, taking her to community dance class and then watching her beam at the recital. Showing her how to measure and pour ingredients as we bake together, the never ending joy that comes with eating a ‘burger, fries, ketchup, and diet coke” at McDonalds, cranking the music and singing along to every praise and worship song together, having her introduce me to people at the grocery store because, for some reason, everyone in town knows Amy. Listening to her say, “cute hair” endless times after every haircut, calling on the phone with the endless request of, “Amy come to Kelly’s house tonight….please!” Seeing her cry when she knows she’s done something wrong, watching her laugh with us at the funny things she says and does. The relationship that I have with this person is one that in my heart is more precious and amazing than most relationships in my life. I love you Amy!
Anna Felt (Amy’s Sister)
Amy started out her life being very sick. I was very little at the time. But I remember packing my bag and begging my dad and oldest sister, Christie, to bring me to the hospital to see my mom. As both of us grew older, we would play babies together and most of the times end up arguing. I would want the babies to go for a walk, she would want them to take a nap. We finally agreed on having them take a nap in the stroller as we took them for a walk together. There was always one thing I could count on Amy to do with me; jam out and dance to music. We would make videos together of us dancing. I would try and teach her a routine in a short ten minutes before pressing record on the video camera. It was always hilarious watching us try so hard to make the dance perfect but make tons of mistakes and end up just dancing freely to the music. As we have entered our teens, it surprises me that Amy almost loves jewelry more than I do. She is so into it and loves when I do her makeup and hair. I have so many memories of Amy. Having her as my little sister has been one of the best parts of my life.
Daniel Felt (Amy’s Brother)
When my Mom asked me to write about my experiences growing up with Amy I didn’t know where to start. Growing up with Amy has been an amazing experience. She has changed my life for the better. I remember watching her learn how to walk with a hula hoop. When she was 5 years old, my family would watch in amazement as Amy dove to the bottom of our 9-foot pool and grabbed toys. If you tried to help her she pushed you away. Soon Amy was riding a bike around our farm, going all the way down our ½ mile long driveway. Eventually she learned how to drive our four-wheeler at the age of 13. At the age of 14, my Mom came in from chores one morning to Amy eating an egg that she made for herself. I still have trouble not breaking the yoke as a sophomore in college.
In high school, I was on the swimming team. Some of my greatest memories of all time are having my family come to my meets. I’ll never forget one race of my senior year. I stood behind lane three getting ready for my race. I looked up into the stands to see my family sitting in their regular spots, three rows up and to the left of the stands. Amy was nowhere near them. As I searched the crowd, I found Amy. She was sitting next to one of her friends who also had a brother on the team. There they were, careless as could be sharing a box of popcorn. As the whistle blew, I jumped on the block and got ready to dive in. I heard three words before the next whistle blew, “GO DAN GO!!” It was Amy. The whole race those same words kept going through my head. “GO DAN GO!!” When I finished I went up into the bleachers to talk to my family about a new personal best time. I was met half way there with a bear hug and kiss smelling of popcorn. “Good job Dan, way to swim fast.” Amy has showed me that anything is possible in life.
David Felt (Amy’s Brother)
Growing Up With Amy: I was twelve years old when Amy was born. The memories I have of her early years come from the insight and knowledge of a boy. As the years went by and Amy’s blood disorder was cured the impact she had on our family would show itself not only then but in the years to come. My insight to what it is like growing up with a sibling who has Downs syndrome comes from my memories of the events that happened in her life and how it impacted not only me but the other members of our family, our extended family, and friends of the family.
When Amy was born her face was very red from a difficult birth. I remember holding her at the hospital so excited to have a new baby sister. Shortly after her birth it seemed that there was a problem with her health. I can remember sitting in the basement and Mom telling us that Amy had Down syndrome. I had no idea what that was and she told us it was what Corky had, who was an actor on the sitcom Life Goes On. Corky seemed just fine. He had great communication skills. I really didn’t know what to expect or think. At that time we were also told of the blood disorder. It always seemed that Down syndrome was on the back burner. It was all about Amy living through the treatments to cure her leukemia.
The first couple of years in Amy’s life were hard fought. Mom was at the Children’s Hospital in Minneapolis most of the time and when Amy did come home we had to wear masks and wash our hands due to the fact of how weak her immune system was. I remember the one night Amy’s temperature reached 106 degrees. I was at my aunt and uncle’s, Glenn and Lynne, house. It was the only time of Amy’s life that I felt so much fear. As a boy it never registered in my mind the seriousness of the situation. Amy had a full recovery from her treatments and was cured of cancer. I remember her being so small for her age. When she was four years old she looked like she was only two. This was due to how much she had to go through physically during her fight with leukemia. Being sick had an impact on her life. I remember Amy crying every time we were in an elevator. Even as a small child she related it to pain and fear.
As I entered high school and Amy was getting older I was able to work with her as a Personal Care Attendant (PCA) to help her build her communication and knowledge. I spent only a few hours a week as her PCA, but they were a lot of fun for me. My job was to help her learn the alphabet, new words, and help her get ready for school. I even had to try and “do” her hair. Styling a young girl’s hair was not my strong point! I can remember Amy being able to eat a lot of cereal. As a teenage boy I could hold my own with the cereal. One of Amy’s favorite words when it came to food was “MORE!” We were trying to watch her calorie intake because she has a slower metabolism rate. However, just for fun I wanted to see who could eat more cereal. Amy had four bowls and I had four and half because I wasn’t about to be outdone by my youngest sister. Food was her weakness. If she wasn’t listening very well you could entice her with McDonalds or Pizza Hut.
One thing that a lot of people don’t give Amy credit for is how smart she is. Amy always knows what is right and wrong and always seemed to know what she’s able to get away with. Mom always told us to treat her like anyone else. Amy received some special attention but we always involved her with what we were doing. She didn’t get any special treatment. She was just one of the kids. Amy has her chores to do even when she is reluctant to do them. We will tell Amy go run the dogs. Her response is “FINE!” I think the way she was brought up was very healthy. She was taught responsibility. It always seemed like some authority was telling us Amy can’t do this or won’t be able to do that. In almost every one of those cases Amy did exactly what they said she probably would never do.
When I look back at the past fifteen years growing up with a sibling with special needs I can truly say it has been fun and a blessing. So many people think it’s such a bad thing, and feel bad that you have a special needs child/sibling. That is so far from the truth. Amy has brought so much joy and laughter into our lives. She knows when everyone is watching her and she tries to show off or does something that will make us laugh. She is fearless and loves to be in charge of everything she thinks she has authority over. She tells the animals what to do. A story that makes me laugh every time I think of it was when we lived in the small house at the current farm. We all were sitting at the kitchen table for dinner. Amy went down stairs and brought up Daniel’s hamster. She had the hamster cupped in front of her with both hands, holding it securely. She so was excited to show off holding the hamster that her grasp of it became tighter and tighter. You have never seen a creature have the look of fear of death like that little hamster. We told her not to hold it so tight and the little rodent took a breath of air that could literally be heard.
Amy has such good interaction with her friends and people she doesn’t even know. She remembers so many people and says hi to everyone she knows. It is amazing how one person can bring so many others closer together. She is an amazing person and is so full of love. She is so independent, smart, loyal, carefree, and fun. I can’t imagine what it would have been like without Amy. She makes us all laugh in the things she says and does. Even now I hear stories of what she is doing in school and it makes me laugh. Just recently she had a band concert and was playing the cymbals. She takes it so serious and when it is time for her to clash the cymbals together she does it with so much passion that she puts them together and raises them above her head. I can just picture how dramatic she was trying to deliver her role in the band. Everyone who has had the privilege to get close to Amy is a better person. She has a pure heart and is such a special member to our family.
Kalley Spreiter (Amy’s classmate)
Having Amy in my life has certainly changed not only me but my family, too. I met Amy when I was in 3rd grade and we were in the same class. I hadn’t really connected with Amy before this. But this is the year we became best friends and have been friends ever since. I don’t know how to put it into words but having Amy in my life is great. In the hallways at school it is so nice to see her smile at me especially if I’m not having a good day. One thing I noticed is that she is almost always smiling. She is so happy. I really enjoy having her around. It definitely would be different without her around. I always get a kick out of her because she is the funniest person. One time Amy came to watch our hockey game. She was standing right next to the glass where our team was facing off. It was totally quiet when Amy banged on the glass and yelled KALLEY SPREITER! (She always calls me by my full name!) While trying to stay focused and maintain my game face, I could not help but look over and smile at her. I don’t think of her any more as different, because she really isn’t. I think of her more as just plain her. I feel lucky to have her in my life. I love being around Amy and that’s never going to change.
Joyce Spreiter (Mother of Amy’s classmate Kalley)
We have watched Amy and her friends grow up together and it has been a wonderful experience for Kalley. Amy is a breath of fresh air and a day brightener. We love to see how the kids interact with her. It has given us a new perspective on what individuals like Amy have to offer. When we were in school, kids like Amy were not a part of our classrooms. It was definitely our loss. Amy’s friends…well they get it. I am glad to see our school has opened their minds and hearts to her. We think Kalley is very fortunate to have Amy in her life.
Thank you so much for sharing Amy with us!
Megan Pickert (family friend)
Amy is the Felt’s youngest daughter and one of my favorite people in this world. For those of you who don’t know Amy, you are totally missing out. Amy is 15 and she was born with Down syndrome and beat leukemia when she was just a baby. There are a lot of negative stereotypes of people with Down syndrome but if you met Amy, she would prove you wrong on just about every stereotype. Amy has her strengths and weaknesses just like any other regular 15 year old and she’s definitely got the attitude of a 15 year old. Amy has such a sweet and caring personality and is always happy. She loves God and loves people and she makes it seem so easy to just love God and others. What a great example she is.
Amy got a new bike several weeks ago and it is much higher off the ground than her older one and she has been afraid to ride it, so our mission was to get Amy to ride her bike. Barb made Amy a deal that she could only go on vacation if she learned how to ride her bike. 😉 One morning Amy and I worked on riding for about an hour. The rules were that she wasn’t allowed to touch her brakes and she had to keep pedaling. She kept wanting to stop but after about 30 min she was starting to feel more comfortable and was getting the hang of it. I taught her to “sing” the song from “the little engine that could”.”I think I can, I think I can, I think I can… I KNOW I can, I KNOW I can, I KNOW I can.” As her fear started to lessen, her
confidence on the bike was really increasing. She rode up and down the driveway with me twice. When Amy was riding all on her own she looked at me with a huge smile and said “Amy go on vacation!” It was adorable. She was so proud. The next day we took our bikes into town and rode them to the Dairy Queen with one of Amy’s good friends, Karly. Way to go Amy!
When all the farm work was done we always had time to relax and have fun. Anna got pretty sick in the middle of the week so she had to spend lots of time resting. We went swimming just about every day in their pool. Swimming at night is the best, minus the mosquitoes. Amy and I hung out a lot! We jumped on the tramp, went on four-wheeler rides, rode our bikes, read books together, looked at pictures and made a picture board to hang up in her room, ran errands to town together, went to Wal-Mart, had popcorn parties, and lots of other random fun activities. The second night I was there, I went upstairs to go to bed and Amy was in the middle of my bed. When I asked her what she was doing in my bed she said, “Megan cuddle Amy, now.” Of course, I let her stay and every night there after we slept in the same bed. She would go to bed before me but when I came in to go to bed she was always awake and waiting for me. We would lay in bed and talk and giggle like two little girls. Amy is by-far one of the people who bring the most joy to my life. She is always so happy and she loves God and life so very much. One night I asked Amy why she loved God and she said “Because Jesus lives in my heart. Amy loves God and it makes God happy.” It doesn’t get any simpler and truer than that! Rock on Amy!
Tammy Nelson (Amy’s cousin)
One weekend when Barb went back to Litchfield, Kyle and I went up to the hospital to give Amy her evening bottle and spent some time with her. I was familiar with the hospital and where Amy was. We walked into her room and she was just lying in the crib with this little yellow hospital gown on. She had the biggest eyes and just looked at us;she was weak. I remember calling Barb when we got there to give her a “status” and read the chart as Barb was always in the know and knew exactly where things were at. As I was rocking Amy and feeding her, I remember looking down at her with those big beautiful eyes and praying that I wouldn’t drop her or bump her because at the time her platelets were so low, and we had to be SO careful. I was scared. We prayed over Amy and just rocked her with all these tubes in her, when she fell asleep we left. As we were leaving the hospital I remember thinking and just praying that Amy would live. From that point on I don’t think I ever thought of Amy other than a complete miracle that she’s here today. Downs syndrome isn’t even a factor-it’s such a small thing compared to fighting for her sweet little life. Once I had kids of my own, I think why didn’t I do more for Barb or be there even more then we were-as I just had no clue. You don’t really get it until you have kids of your own. Barb has taught me so much in my life, but during that time I learned that you have to be an advocate for your kids-you have to fight for them, ask the hard questions and do whatever it takes-she’s a HUGE part of why Amy is here today. She’s been an amazing example of strength, wisdom and the true meaning of what it’s like to have faith. So many times when I was rocking my healthy kids and looking down at them, I remembered Amy and that moment in the hospital, and what God has done in her life and all of ours because she’s in it. What is it like to have Amy in our family? For us, it’s no different than any of the other kids, she’s treated the same and sometimes is just a little more “bossy” to the younger kids-you can’t help but laugh and smile at her spunky personality and zest for life, but more than anything she’s a miracle and we are so blessed to have her in our lives.
Jim Jackmann (Amy’s speech therapist)
I have had the opportunity to work with Amy as a preschooler (Age 3 to 6 years) and now as a middle school student (6th grade to present 7th). Amy is truly a spirited young person. I remember her being such a little jabber box when she was four years old. Her energy and upbeat attitude is so enjoyable to see. Socially she has certainly come so far, her ability to interact and have fun with her peers.
She demonstrates the capabilities to use different voice tones- given humor, anger, frustration, happiness and a definite want or need. She has always enjoyed the individual instruction time, the high five and joking around.
Connie Hamm (Amy’s Aunt)
I always thought if you had a Down’s child that would be one of the worst things that could ever happen. But now I see that is not true.
I remember going to the hospital the day after Amy was born. Mom , Joanie and I walked into the room and Barb was sitting in the chair sobbing. We all cried. We didn’t know anything about Down syndrome, so we were scared. From then on, Barb read books and did everything she could do to learn more about it. The Dr. had told them if they just let Amy sit, that would be all she would do. But, if they kept stimulating her, she would learn. Well, there is plenty of stimulation in their home! Amy was taught right from wrong and she knows.
I really don’t know how Barb and Russ did it all when Amy was so sick. Their whole family had to grow up and take over and they did.
When Amy was crabby, Barb would say “Amy be happy” and Amy would get the biggest smile on her face. She knows everyone and remembers where everything is in your home. She can run the remote better that I can.
Amy loves babies and small children and they love her back. She can run like other kids, but not as fast. She reads like others, but not as fast. She can do almost every thing, just not as quick as others.
Its fun seeing her get older with her ears pierced and wearing bracelets and necklaces and she loves it when you notice. For her last birthday, Mike and I gave her some new shirts. She had one on and I said, “Amy, you look so pretty.” She got a big smile on and said, “I know.”
She loves church and greeting everyone and she keeps perfect time when we clap to the happy songs. She has perfect rhythm; not all people do.
It’s amazing to see her swim (self-taught by her family). She’s like a fish.
She’s always so eager to greet you when she sees you and give a hug and huge smile. I think almost everyone in town knows her and the joy she brings to the school. I think it really helps the kids in school when Barb goes in, in the beginning of the year and shares about Amy. The kids understand better and they all want to help. We all try to teach Amy, but I think we have all learned more from her. She loves music and she has put a song in all our hearts for eternity.
Wayne Kalenberg (Amy’s Uncle)
One day years ago, when we were building the hog units, one of the electricians came to me & said his wife had a baby, he got a different look on his face & said “but the baby has Downs.” I said, “CONGRATULATIONS!” He didn’t say anything. He turned and went back to work.
I couldn’t have said that to him without you having the experience with Amy. At that time we were all learning how to react and even what to call Down syndrome. A few weeks later I was working with the same electrician. I asked, “How are things with the new baby?” He said “Fine, you know you were the only one who said congratulations to me, and that meant a lot to me.”
It was because of what I learned from you, I knew what to say to him.
We have had lots of fun with Amy over the years, one experience was when all the little kids were running towards me one at a time, and I would lift them in the air with my legs while lying on my back. Suddenly Amy saw the fun and came running, there was no way I could catch her let alone lift her in the air. You yelled, “AMY! STOP!” just as she hit my legs. You have done a great job of disciplining her, praising her, and treating her like any other kid. Amy is so precious.
I’m so proud of the way you and Russ are raising not only Amy but the rest of your family.
Lisa Kalenberg (Amy’s Cousin)
My favorite memories with Amy have been reading stories together and just talking with her (she has some pretty funny things to say!!). There is something really genuine and honest about her! If she doesn’t want to talk to you, she won’t! 🙂 She likes to do her “own thing” sometimes and she doesn’t seem to mind if everyone else is doing something else all together. She always makes me laugh whenever I’m around her. Amy is Amy; I do not see her as a person with Down syndrome, but just as my cousin Amy!
Darcy Hoff (Mother of Amy’s classmate Mariah)
Having Amy in my daughters life has been nothing but a great experience. Amy has truly touched so many people’s lives, and all of her friends really enjoy having her around, they all treat Amy just like any other friend they have. Amy has taught my daughter many life lessons such as compassion and patients. Mariah has had the pleasure of mentoring Amy this year, and loves to help her go grocery shopping, cooking, class projects, and homework. Watching Amy interact with other kids is so neat, she just wants to be doing what every other “normal” kid is doing, everyone is always saying “Hi AMY” and I truly believe they think of her as just Amy, not Amy with downs syndrome.
Breanna Sittig (Amy’s classmate)
Amy, Amy, Amy. 🙂 She is probably truly one of the greatest people I know. I mentor Amy in school, it is one of the most fun things that I do. When I look at Amy I don’t think of her as a person with a disability, I think of her as one of us, one of my great friends. She has changed me so much, I have learned to have patience and have respect for other people who face daily life challenges. I have a severe cat allergy and asthma that I could die from if untreated. I have to go and get allergy shots in both arms every 2 weeks, I used to hate is so much and think it was the most horrible thing and would always wish I didn’t have to get them, but when I am around Amy I realize my stuff isn’t so bad. I feel so lucky to have Amy in my life! Amy is not just another 15 year old student in a 7th Grade class or a kid with a disability. She is an amazing girl in my 7th grade class; she is that one person who puts a smile on my face every day and one of my best friends. That is what she will always be in my heart!
Always Making You smile!
I love you Amy 🙂
Valrie Sittig (Mother of Amy’s classmate Breanna)
My daughter, Breanna Sittig, has mentored Amy in school for a couple years and it has become so much more than just a one-hour class, I believe they have become life-long friends. I feel Breanna has learned so much from her experiences with Amy and I would like to tell you about just a few of them. The first is Acceptance. Breanna accepts Amy just as she is, and I think because of that she accepts all people as the people they are, and accepts herself as she is. She doesn’t think she has to try to change them or herself to fit in with what others may think and knows that this is the way God has chosen to make you. The second is Patience. The patience that Breanna has amazes me and it certainly didn’t come from me or her father! She told me once that being with Amy takes a lot of patience, but it is so worth it! Another is Determination. Bre has always been determined girl, but I know experiences with Amy has only enhanced and strengthened her determination on things that are challenges for her. These are just a few; I know there are so many more that I could talk about. Breanna comes home and talks about Amy’s fearless attitude and gentle heart and funny, I can’t even tell you how many times Bre has shared a story about Amy and how funny she is and how she just makes her laugh and smile. To me Amy is a Beautiful Person because she has made my daughter a more Beautiful Person! And for that I will always be very thankful that Amy has become an important part of Breanna’s life! So Thank You, Russ & Barb, for raising this beautiful person!
Donna Twite (Amy’s Aunt)
One time when Amy was really sick I was driving to the hospital. As I was praying, I could see a huge stadium and everyone there was crying out “Amy, Amy, Amy,” to God.
When I got to the hospital Amy’s door was closed and I will never forget what I saw when I looked in the window. Barb was holding Amy, rocking back and forth slowly. Amy looked so frail and small, with tubes attached to her. I prayed Amy would live! Needless to say Amy was a fighter and she beat that time in the hospital just like she did other times. Barb and Russ and all the family never gave up on Amy, nor put limits on what she would be able to do.
Now when I see Amy she always has that huge smile and hug to say “Hi Donna.” I love seeing her grow into the beautiful young woman she is becoming. I love what she has taught our whole family. We are all different. I love what she has taught our 11 grandchildren, how to be kind to someone who is different and that being different does not mean that you still do not have feelings. I love hearing any stories that Barb has to share about Amy as we are all so proud of her.
As a sister of Barb I have shared so many times. Maybe some big basketball player, or football player is your hero, but Barb is my hero. Barb and Russ have always thought out of the box when it comes to Amy and have always loved Amy for who she is, a very, very special gift from God.
Jill Nelson (Mother of Amy’s classmate Karly)
Karly has always been a girl with a really good heart and has always been caring. But, I know having Amy in her life has shown her so much more, not just about other people, but also about herself. She comes home from school and talks about the way people baby Amy and how it bugs her. She will tell me things like “Amy is just a regular girl; I don’t know why they treat her like a little kid.” And when she goes to the Felt home, she comes home with such fun stories about how they do chores and how much fun she has with all of them. I see the love in her eyes when she talks about Amy. I know that Karly considers Amy to be one of her best friends and that all the kids love her. We are glad Karly has Amy in her life.
Nycole Pederson (Amy’s Cousin)
I have sat here trying to think of how I could ever put into words all that went on while Amy was in the hospital. All those long days/nights Barb and Amy spent at Minneapolis Children’s hospital. I used to visit the hospital and rock Amy while Barb would go for a run. I would say it wasn’t safe to run in that neighborhood but she would go anyway, anything I think to just release a little stress. At the time, I really didn’t have ANY idea how much pressure and stress Barb was really under. I didn’t have kids, I didn’t know that type of complete unconditional love, that overwhelming feeling you have as a mother to love and protect your baby. One night in particular, I remember being at home and Barb calling me crying, saying Amy’s fever is so high, it is so bad. It was late at night, maybe close to 8 or 9pm. I said a quick prayer with her, told her I was going to call everyone and ask them to pray and then telling her it’s going to be okay, I’m on my way. I hung up, called my mom and dad and asked them to call everyone and start praying. They immediately started spreading the word, everyone in the family was praying. The entire way to the hospital I remember praying and asking God to just cover Barb and Amy with his peace and heal her, to help her fight off whatever was happening in her body. When I got to the hospital, Barb was so strong and yet so scared, she was so quiet, barely said anything. We just sat in Amy’s room rocking her and praying. The music was playing softly in her room. I didn’t really understand it at that time, but when I look back I think what a peaceful presence that God provided even in those extremely stressful moments. I didn’t have any idea how hard it must have been for Barb to sit in that hospital room with doctors telling her Amy was close to death. Only now after having my own children do I understand the true severity and heaviness of that particular moment. Even through all those extremely difficult minutes/hours and days, God was there, helping Amy, holding her tiny body and giving her strength. Barb was a pillar through it all, the amazing strength she showed as she fought so hard each and every day for Amy’s life not just through prayer, but by becoming the advocate that Amy needed. Someone to stand strong, question the treatments, the doctors, finding the very best care for Amy. It is hard to look at Amy now and remember how frail and sick she was when she was little. You would never know that she was so close to death. She has blossomed into this beautiful, smart, funny young teenager. She is a blessing to our family. We love Amy!!!
Joanie Grabow (Amy’s Aunt)
Every child is a gift from God. I am so thankful for all I have learned from Amy. I was Amy’s personal care attendant from a baby until she was 12. I always thought Down’s syndrome meant mentally retarded. Not able to learn. Amy has opened up my eyes to see how wrong I was. She can learn anything. To count, read, tie her shoes. To get her self showered, dressed and ready to go.
Amy has a wonderful sense of humor. So much love inside her to give. She has always loved babies and can take good care of them. I have 6 grandchildren. The oldest is 3 and every one of them loves her. She is such a good helper and so good with them.
Amy doesn’t judge. She loves us all just the way we are. Always happy to see you. I would look forward to getting her off the bus. She would come to my house after school. The door would open up on the bus and she would come running out and say, “Hi Joanie.” I would ask, “how was school today” and without fail her response would be, “Fine. Should we have a snack?”
I think that I learned as much from Amy as she learned from me. She didn’t have a care in the world. She brought so much joy into our family. Yes, she has special needs but she has a beautiful special heart. Strong, loving and caring. Amy is our very special gift from God. I love her so much.
Annie Patten (Amy’s Personal Care Attendant and cousin)
Amy has impacted my life in different ways, as her cousin, as a teacher, and now as a mom.
Before Amy was born, I didn’t pay a lot of attention to children, teens, or adults who had disabilities/special needs. I never really thought about how life would be having a sister, daughter, friend, or cousin with Down syndrome. Once Amy was born, I started paying more attention. I would notice people a lot more and immediately had a compassion for them. The more I learned about Down syndrome and other disabilities, the more I wanted to know…which lead me to become a special education teacher. Amy is one of the reasons I decided to become a teacher.
As a special education teacher, I have experienced and taught many different students with a variety of disabilities. There is something about a student who has Down syndrome that is unique and different than others. They are always happy, each having a unique personality. Although they can be stubborn at times, problems seem to be easily solved. Amy has a great personality. She is easy to get along with and likes to make you laugh. She is sweet and has many wonderful qualities and talents.
And as a mother of a baby girl, I understand even more how you love your child regardless of their disability. God made each and every one of us with a purpose and plan in mind. He made us unique and Amy has brought joy and laughter into many lives. My daughter’s face lights up when Amy comes over to our house. Amy is a joy and a gift. We love her so much.
Dave Whitchurch (Amy’s 5th grade teacher):
This is my second year in a row of having the opportunity to work with a Down syndrome child. Yes, opportunity. I cannot tell you how much a D/S child opens the doors to so many in a school system! The teacher, faculty, office staff, lunchroom, assistants, students, etc, have all benefited. I have had a management assistant to help in the process, but it also created a “twice-as-much” advancement in the child.
Down syndrome kids have been really accepted in our environment here at school. I have seen Great days and Bad days from these children. But, how is that any different than any other child in elementary school? I have come to learn that Down syndrome may limit the child in some aspects, but bring opportunities as well. I find the Down syndrome child as a very happy and determined student. The aspect of trying hard, being stubborn at times, and wanting to “get out of some things” is no way any different than others. I once had the question of: “What was acceptable behavior by these students?” “How do I discipline them?” I have learned that it is not a whole lot different than my other students. The discipline may have to be presented differently, but what is acceptable is about the same.
Prior to having a Down syndrome child in my class, I once thought that I would have to deal with aspects of teasing because of their physical features and motor skills being different. I have never once dealt with that aspect. I do attribute a lot of the success to the education of their classmates through the years. Virtually all the kids really know that the Down syndrome child has some special needs. I honestly believe it is because it can be seen and heard in the child. A lot of special ed. kids do not always show those special need qualities, thus are sometimes placed at the “bottom of the pecking order ladder”. I would highly recommend a session where someone can educate the class on exactly what Down syndrome is. This early education session got our whole group off to an educated start to the year.
As far as distractions go, there are the comings and goings of the student, and their assistants, as they work with physical therapy, speech, language, special ed., motor skills, etc. But the openness of this child and the friendliness of them far outweigh any distractions in the scheduling.
I truly hope that we have reached a crossroads of where these children are completely judged by the content of their character and not by their appearance or motor skill! I have learned more about myself and the acceptance of others through these Down syndrome kids.
A NOTE FROM Kalley Spreiter
Amy felt. 🙂 I just needed to say..you make my day every single day that I see you! My day always brightens up when i see that big smile on your face and when you give me your wonderful hugs! You are THE best hugger in the world! You are the best friend anyone could have! Im glad I have you as one of mine:) ♥ I love you Amy! Call me up during the summer! I would love to hang out with you! Pool party!! 🙂
-Keep working on that trapset! Your an awesome drummer! 🙂
Kalley Spreiter ;