Down Syndrome | The Mango Memoirs

Wesley

Posted on October 29, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Wesley

Today’s first post comes from Wesley’s mama, Amy. Amy and I have been Instagram friends since our boys were very little. Wesley and Sam are only a few weeks apart. I have loved following their journey the last three years and am thrilled to have them on the blog today! You can find Amy on Instagram at @TheThomps, on her blog, and on Twitter.

How did you find out Wesley had Down syndrome?

We didn’t find out that Wesley had Down syndrome until 4 days after he was born. There were suspicions post-birth, but he didn’t have any heart defects, aside from a tiny hole (PFO) that the doctors were sure would close on its own. He didn’t have a palmar crease, he was able to breastfeed immediately, he didn’t have any glaringly obvious “signs” aside from mild hypotonia. Wesley was in the NICU for jaundice and we would have one neonatologist come in and say, “I think he has Down syndrome.” Then the next neonatologist would come in and say, “No, I don’t think he has Down syndrome.” It was a roller coaster with my postpartum hormones and getting mixed messages. The results from the genetic testing came in when I was at the hospital by myself with Wesley. A doctor I had never seen before came in and blurted out, “We have the results from the test and your son has Down syndrome. Of course, that doesn’t change anything about him from when I came into this room, he’s still the same little boy.” I was devastated. I called my husband, weeping. Of course it changed things – all my hopes and dreams for my son were dashed by that random doctor. After I called my husband, I called my sister. I’ll never forget her response. She told me, “Aim, I already loved him, but I love him 500 times more now that I know he has Down syndrome.” My sister is a Child Life Specialist and has worked with so many people with Down syndrome and knew how blessed we would be.

If you knew someone who was told their baby would be born with Down syndrome, what would you tell them?

It’s ok to grieve for the child you thought you were going to have, it’s ok to feel loss. Your life will look different than you imagined. Just know that people with Down syndrome can play sports, sing in choirs, go to college, live independently, get married, and be productive members of society. I think those were my biggest fears – the future and what it would hold. Take advantage of Early Intervention services as soon as you can! It seems overwhelming sometimes, but looking back now I see how much they helped Wesley get to where he is today. And it’s ok to take a break from therapies, too. Your child needs to be a child sometimes and go to the museum, or go visit Santa, or go to lunch with mom and dad and then ride the train at the mall. You will become your child’s biggest cheerleader and advocate. You will find a voice you didn’t know you had. You will meet amazing families on this journey. You will be touched in so many ways by Down syndrome. I have people randomly stop me and tell me about their amazing uncle/cousin/sibling with Down syndrome all the time. Your child with Down syndrome will light up a room, will become your greatest teacher, and will help you see the value of life that the world deems unnecessary or unworthy. Don’t fear what is ahead. The journey is beautiful.

Last month, while in Indiana for The Influence Conference, I got to spend a little time with Amy, Wesley, and Wesley’s new little brother, Louis. This was actually our second play date in the last year. I love getting to spend time with my Instagram friends in real life!

Click below to read all the stories from Down Syndrome Awareness Month!

Filed Under: Down Syndrome

Emerson

Posted on October 28, 2015 by Angela @ The Mango Memoirs • 6 Comments

DSAM Emerson

I have been looking forward to sharing this post all month! Today, Susan writes about the day she met her granddaughter, Emerson, and how their relationship has blossomed through the last seven years. Susan can be found on Instagram as @stforster.

My grandmother story is one of love and pride. Emerson Leigh Frosch was loved and planned for when she was conceived in 2008. Her mother (my daughter) had many regular scans during her pregnancy and nothing out of the ordinary was detected. She was 26 years old and declined any testing.

Shortly after her birth (within 30 minutes) a pediatrician informed us that a heart murmur was observed and they believed Emerson had Down syndrome. At that point I needed to sit down because I had no idea what that entailed. I was closest to Emerson in the delivery room as the nurses checked her out and noticed that the nurses were looking at each other; all I noticed was that she didn’t seem to look like her mom or dad. We all loved her instantly! Since none of us had any experience with Down syndrome, we didn’t see any of the characteristics (almond eyes, thick neck, low muscle tone) that we would grow to love.

with the Rollins College Women’s basketball team

Emerson spent the night with her parents in the hospital (breastfed like a champ) but was whisked away in the morning for many cardiac tests. She was found to have Tetrology of Fallot and AV Canal Defects. She remained asymptomatic (apparently the two defects counteracted each other) until her successful surgery at 5 months. She now only has an echocardiogram once a year.

Emerson spent 39 days in NICU with a tear in her lymphatic system. She retained her birth weight even after being on IV feeds only for 2 weeks in order to heal the tear. Her mom pumped breastmilk during those 2 weeks and Emerson went right back to breast milk until she turned one. During the NICU time, her parents concentrated on surviving and treating her like a baby. The Down syndrome diagnosis was certainly dealt with but as NICU parents know, the goal is to be released.

A month after Emerson was born, the local Down Syndrome Association of Central Florida had its annual Step Up for Down Syndrome Buddy Walk. My daughter’s teacher friends (the entire school!) as well as our friends and relatives formed Emerson’s Entourage. It was their way to support this family … they had hundreds of people show up and won Second Place for Number of Walkers … all for a baby still in NICU.

Emerson’s Entourage Buddy Walk Team

During this time, I lived four hours away in North Florida. My husband had died five years before and I was content where I was. God had other plans. One day on the way to the hospital to visit Emerson, God spoke to me clearly about moving back to Orlando. My house sold in 2 weeks (this was 2008!), I bought a smaller house in Orlando and moved. I wanted to see what Emerson could become and be a help to her parents.

The blessing has been all mine. I volunteered in the office at DSACF as well as a few other places to acclimate to my new city; I was hired a few years ago as a part-time office coordinator.

Emerson is the light of my life. She just turned seven. We are the best of friends. We both love reading and traveling. She is more athletic than I am – plays soccer, waterboards, goes to gymnastics. She loves Jesus and singing in the choir. She reads above grade level, is in a general public first grade class. She has been a flower girl in two weddings. We attended the NYC Buddy Walk in 2013 where her photo was on the big screen in Times Square. We (she and I) traveled back to NYC last month to see the Statue of Liberty, see more Today Show anchors and the Broadway show, Matilda.

Emerson with Today Show anchor, Savannah Guthrie

Having a child/grandchild with Ds is not without its challenges. Emerson is very nearsighted and developed hypothyroidism when she was 6. She will probably have speech therapy her entire life. But, in the grand scheme of things, she is a delight. She is the big sister/big cousin to Shelby and Bryn, who are both 2-1/2. She is my first granddaughter and my introduction to a big beautiful world that I never knew was out there.

seeing a show in NYC

Click below to read all the stories from Down Syndrome Awareness Month!

Filed Under: Down Syndrome

Gracie

Posted on October 27, 2015 by Angela @ The Mango Memoirs • 1 Comment

DSAM Gracie

This beautiful little girl is one-year-old Gracie. I can’t help but smile every time I see her photos come up in my Instagram feed! Today her mama, Jamie, talks about how she first responded to the news of her daughter’s diagnosis and what she has learned since Gracie’s arrival. You can find Jamie and Gracie on Instagram at @jme027 and on their blog Normal As We Know It.

When did you find out Gracie had Down syndrome?
When I was 16 weeks pregnant, we found out Gracie would be born with Down syndrome. A few weeks after that, we found out she had a pretty big heart defect that would require open heart surgery within the first few months of being born!

What were some of the emotions you had when you got the news?
I’d love to tell you that I immediately accepted it and was excited to meet our baby girl and didn’t care about the diagnosis. But I did care – mostly because I just didn’t know. I was naive and had not been around a lot of people with Down syndrome. I made the mistake of googling some information. Horrible idea. We went to a high-risk doctor to follow up. Terrible experience. Smart doctors are sometimes really bad with their words and their bedside manner can be excruciating.

Weeks went by and I was sad. Why was this God’s plan for our lives? This isn’t what I had pictured. I did not plan on this. Ever. But it was our future and as upset as I was, I still wholeheartedly believed all life was so precious, made by God, with no mistakes – nothing but His plan A for our lives.

So we began reaching out, meeting some families in the Down syndrome community and talking to friends. I began to thaw. I met a super cool mommy with a one-year-old baby girl with Down syndrome (@mollieglasgow). I just stared at her and saw how beautiful she was and how happy her mommy was. I thawed a lot more.

I began to be quiet and listen to God. His comfort was always there and His promises were always true and I began to feel better. Still a little fearful of how different our new normal would be, but better.

What is something you want everyone to know about Gracie?
She’s perfect. She is not a mistake, and there is no reason to feel sorry for us that she was born with Down syndrome. I can assure you, we feel nothing but gratitude to God for blessing us with Gracie.

What is one of the most challenging things about having a child with Down syndrome?
Balancing therapies and appointments, and reminding myself that Gracie will develop in her own time, when she’s ready!

If you knew someone who was told their baby would be born with Down syndrome, what would you tell them?
However you are feeling right now is OK, but I promise you, the fear and uncertainty is fleeting.

Filed Under: Down Syndrome

Keagen

Posted on October 26, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Keagen

Meet six-year-old Keagen. A Minnesota boy! Sam and I got to meet Keagen, his mama, and his little brother a few months ago at the Minnesota State Fair. Such a treat to give them hugs in real life. Today, Jess shares about her journey so far as Keagen’s mom and the very real challenges that are a part of life while parenting a child with Down syndrome. You can follow Jess on Instagram at @chanceleevy.emmanuel and by clicking here to reach her blog.

I was 19 and had just returned home after finishing my first year of college the summer I got pregnant by my then 18-year-old boyfriend, one month post his high school graduation. We always said Keagen was planned, he just came five years early. We didn’t know our son had Down syndrome until after he was born. I’m not sure I could even tell you how long after his full-term, 5 pound 8.5 ounce body was laid on mine, minutes I would guess. The emotion I remember feeling the strongest was embarrassment. This makes my cheeks flush today. I remember thinking that not only do I have to do this (the “special needs” thing), but I have to do it alone, because what 19-year-old would stick around for this? The embarrassment hung around for all of maybe an hour. It was a quick acceptance. Maybe it was because I was young. It was my first baby. I didn’t know any different and I had zero expectations. I think my mom had a more difficult time with my baby having Down syndrome. Difficult time not in acceptance, but in the guilt she felt that it was me and not her. She had her last baby, my sweet sister, at age 41. A perfectly healthy, Down-syndrome-free-despite-all-the-risks, baby girl.

We had a short name list by this point, and we were leaning toward Tucker. Tuck! My mom asked one thing of me, “Please don’t name him Tucker. Because he might not be able to say Tuck, he might, people might call him…” I’ll let you use your imagination to finish that conversation. I was flipping through a baby name book someone had brought to the hospital and spotted Keagen. Keagen: little, fiery. I pointed at the name, the meaning, and we knew we had it. Chance was on our list. Chance became more of just a name we liked, because what are the chances of all of this? Lee, a family name, had to be in it. I wanted the baby to have my last name, being as we weren’t married and if I had to change his last name, I wanted it to be because of a good thing.

Keagen Chance Leevy Triplett

It was in that moment, the moment Baby Boy Triplett became Keagen Chance Leevy Triplett, that all of the beautiful pieces of our crazy backwards life started to fit together just as seamlessly as could be.

Today, Keagen is Keagen Chance Leevy Paulson. He is a little 36 pound, 6 year old ball of fire, just like we knew he would be. Jon, now my husband, is the best father I could ever have imagined he would be. It’s as if the moment Keagen was born, Jon was too. Keagen is the biggest daddy’s boy. He is also a big brother and oh, is it his proudest role! Keagen loves to play outside most and has to be doing anything sports related. Reading is one of his favorite things. He also loves school.

Our life with Keagen isn’t without challenges. There is a popular phrase in the Down syndrome community and one I cannot stand with one ounce of my being: more alike than different. Everything was the same when Keagen was a baby (or so I thought, definitely different now having a typical baby). I would even go as far as saying everything was the same (you know, despite the open heart surgery at six months, the epilepsy blip around one year, the weekly therapies since days after we brought him home…) up until around age four. Keagen started some behaviors around that age and life has gotten progressively harder as a result. I know it will get better. I also know that before it gets better, it will probably get worse. I know a big part of our behavior problem today is related to communication and Keagen not being able to express himself as he needs and desires to be heard. He’s a runner and he is sneaky, smart, and FAST. He doesn’t (appear to) understand what can happen as a result of his running. He is defiant and though sometimes a wonderful listener, it’s not a strong point this season. I often have to turn down invitations to go do this and that with friends if I know I will be alone with both kids, because keeping Keagen safe and in line is too much while giving his brother everything he needs and deserves as well. At least, it’s too much without completely losing my crap. I can’t run upstairs and switch the laundry without him doing (whatever) downstairs. We aren’t even seven years deep into parenthood and thoughts of us maybe never getting to have an empty nest creeps into mind and weighs on my heart. The inflexibility we will have then, the inflexibility we have now (as far as who is capable of caring for him and what we will miss out on then/what we don’t get to do today). I worry about where he will be when he is of age and who will take care of him and what if someone is hurting his vulnerable adult self and what will happen when mom and dad die if he outlives us and gosh, what if he goes before us? Because we know their life expectancy is shorter than ours. I could go on forever. Just as I could with his brother, Dashen. But with Keagen, it is different. It is so incredibly different and when people, MY PEOPLE- people like us- say it is more alike than different I want to cry. The difference is immeasurable. And powerful.

But so are we. Life is uncertain. We all know that. Our future is uncertain, Down syndrome or not. If someone I knew was told their baby would be born with Down syndrome, I would tell them that life with a child with Down syndrome is wild and it’s bumpy. Hang on like heck, but don’t you try and drive. Just go with it. Every bright and shiny, dark and twisty season. Be the you your child needs that day, not the parent you always thought you would be. Enjoy the ride. It’s all crazy kinds of perfect and it’s everything you never knew you needed. You’re not alone.

“Deciding everything is falling into place perfectly as long as you don’t get too picky about what you mean by place… or perfectly.” Brian Andreas.

Our State Fair meet up in August. Two blonde Minnesota boys!

Click below to read all the stories from Down Syndrome Awareness Month!

Filed Under: Down Syndrome

Serio

Posted on October 25, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Serio

Meet 17-month-old Serio! His mom, Griselda, writes today about the moment her doctor told her that her son had Down syndrome. You can find Griselda on Instagram at @frizzy_xoxo.

When did you find out your son had Down syndrome?

To be honest I don’t remember the exact date when I was told about his diagnosis. I had Serio on February 21, 2014 though c section because of a medical condition. I went home from the hospital to get as much rest as I possibly could. I would call to check on him as soon as I got home, before I went to bed, and I’d wake up in the middle of the night and call to make sure he was fine. I was away, trying to rest but all I could do was think about my son. That day early in the morning I walked into the ICU room and they were doing an echocardiogram on him. I didn’t think anything of it. He was my only son and did not see the red light. To me it was just another routine procedure they were doing to make sure he was doing well. My mom, sister-in-law and nephew had flown in from California a few days before. They had gone out with my husband to get something to eat and to give my little nephew a break from being in the hospital all day. I was sitting there, admiring my precious angel in the incubator, when one of the female doctors who had been seeing him came in and said there was something she had to tell me. She knelt down next to my chair, held my hand, and said, “Your baby has Down Syndrome.” Just like that she dropped the bomb and asked if I had any questions. Of course I did! I had a million and one questions, but I just said no. She said if I had any questions to let the nurse know and she would personally come in and talk to me. Before she even left the room I was crying. I picked up my phone and texted my husband. I remember writing something like, please come, but come alone. I just didn’t want anyone else there at the time, not even my own mother. Within minutes he came back to the hospital and I told him the news. I am so thankful he is a faith filled man and took the news better than I did. He held me, and as I cried he reassured me that it would all be okay, that he was our precious son, our baby, our gift from God!

If someone I knew were told their baby would be born with Down syndrome, I would tell them…

I would quote Mercedes mother of @hooray4sunny. Why? Because her message is so powerful. I wish that somehow I would have read it during those difficult days that followed after my son’s diagnosis. It goes straight into the heart and it could save many babies from being aborted.

“Dear scared and nervous mama, this news about your precious baby is scary. I know it hurts. But please don’t walk away. Don’t let the fear of the unknown cloud your judgment. Or intellectual and physical imperfections be the reason you walk away. Be bold! Be strong! Have grace. But most of all hold on to life! Hold on to that feeling you first had when you found out you were pregnant. When your baby was just your baby in your belly. Don’t walk away. Don’t’ walk away from your miracle. Love you and I’m praying for you.”

I would also tell them to just love their precious child. To not waste time dreading over their diagnosis. They grow so quickly and in less time then they know they’ll be laughing and enjoying their lil angel so much that the initial diagnosis and all those negative feelings will seem so distant.

Click below to read all the stories from Down Syndrome Awareness Month!

Filed Under: Down Syndrome

Aiden

Posted on October 24, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Aiden

Today, Crystal shares beautiful words about about her adorable little Aiden (who is 28 months old), the day she met him, and the emotions that followed. You can follow Crystal and Aiden on Instagram as @bigbrotherbesos.

When did you find out your son had Down syndrome?
My husband and I found out at birth that Aiden had Down syndrome. It was a complete surprise! I was actually still lying on the operating table (from an emergency caesarean) when a NP approached us and told us that Aiden showed characteristics of Down syndrome. We were in shock. Complete shock.

What were some of the emotions you had when you got the news?
All I could think of at the time we received the news was how society would perceive Aiden. In fact, I cried the exact words, “I just do not want him to be made fun of,” to my husband. I felt sad. I even felt afraid. But at that moment what mattered to me the most, as his mama, was that he was alive.

Over the twelve days following his birth I grieved hard. I grieved for the life that my son might have because of what was being said to us. Instead of congratulating us nurses would say, “I’m sorry.” Lactation consultants would say, “Down syndrome babies can’t breastfeed.” My OB even said that Aiden may never go to college or marry. I refused to believe those things because I did not appreciate that these limitations were being placed upon my newborn son. I knew deep down in my heart that Aiden was all a part of God’s plan for our family. God orchestrated his birth so perfectly. When Aiden was born (three weeks early) our parents, our siblings, and even our pastors were out of town. We had each other. We had our time alone to process it all. It still amazes me to this day. Thankfully, after seeking God for strength and guidance, both my husband and I agreed that all we needed to do was to be the best mom and the best dad we could be to Aiden.

Aiden praising Jesus 2013

The most wonderful part of knowing Aiden is…
Knowing he was made in the image of God. Aiden has taught us how to love with a deeper love. He has taught us how to be more compassionate about others, especially those with special needs. He has taught us how to advocate respectfully on his behalf. He has taught us how to celebrate his accomplishments, big or small, and to appreciate the determination it took to get there. He has taught us more than we realize and continues to teach us new things every day.

Click below to read all the stories from Down Syndrome Awareness Month!

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Photo Friday

Filed Under: Down Syndrome, Photo Friday

Category Archives: Down Syndrome

Wesley

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Keagen

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Serio

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