Down Syndrome
- This Or That Mom
- Mar 16, 2019
- 14 min read
With Down Syndrome Awareness Day coming up on March 21st, I thought it’d be the perfect topic for this week. In the US, about 1 in every 700 babies are born with Down Syndrome (about 6,000 a year). We’re fortunate to live in a time where individuals with Down Syndrome are vastly integrated into society, but it wasn’t always this way, and there are still stigmas out there.
I wanted to involve this topic to help raise awareness for the need for inclusion of those with Down Syndrome - not just for their well-being, but to help others realize that even though those with Down Syndrome are different, they might not be as different as many may think, and everyone can learn so much from them. I have a great aunt who is almost 70 years old with Down Syndrome. My grandma was her guardian, so I was lucky that I got to spend time with her at a lot of our family gatherings growing up (and still do). She is so loving and affectionate. She interacts and plays games with everyone, my kids love to see her, and the amount of joy she has always brought everyone is remarkable.
For this post, I asked all of these moms to share their experiences with raising a child with Down Syndrome. They were all so willing to open up and give insight. It didn’t take long for me to realize the Down Syndrome Community is a very active one - & These moms are phenomenal advocates!
I asked them to share their experiences on their initial reaction when they found out their child had Down Syndrome, advice for parents who have/will have a child with Down Syndrome, and other positive insight on Down Syndrome. Their responses… nothing short of incredible. ❤️
“My initial reaction when I found out Bella had Down syndrome was that I was gutted, I cried for 2 days, the fear of the unknown is what gets to people - how silly I feel now for feeling those things. Advice for parents who are going to have a child with Down syndrome - it is just the same as having a typically developing child, you just get to keep them as a baby for that little bit longer, and they aren’t scary (no more so than a typically developing child). Down syndrome is nothing to be feared, Bella lives a happy fulfilled live and she is so very loved by everyone who knows her, if I could turn back time and change Bella having Down syndrome, I wouldn’t because without it she wouldn’t be Bella.”
“Enzo was diagnosed with Down Syndrome at birth. It was scary, terrifying and we grieved the little boy that we had waited months to meet. It felt like our picture perfect life and all we had planned and imagined for this sweet little boy had been taken away from us, all because of two little words, Down Syndrome. If I could go back in time, I would. I would take every ounce of grief away and only celebrate the extra perfect little boy that God handpicked for us. Enzo was given to us to make our lives extra special. It truly makes me upset that we were ever once sad. Enzo is perfect in every way and he’s changed everyones lives for the better. My husband and I wouldn’t change a thing about Enzo and we would choose him and his extra 21st chromosome every time! If you just received a diagnosis whether it be prenatal or postnatal, just know it’s ok and normal to grieve. I promise you won’t grieve forever and one day you’ll Look back and be sad you were ever once sad. You were chosen and you will be an amazing parent to this child. We are only given what we can handle in life. This little gift of life will teach you more than you could have ever imagined about life and I promise it will be the best journey you never knew you needed!”
“My initial reaction was an overwhelming amount of emotions. I don’t remember feeling disappointed or happy I just remember crying and crying. Yet it wasn’t because we were disappointed or didn’t love her. It was just because we didn’t know and the way the diagnosis was given to us wasn’t the best. The pediatrician said “It was just bad luck” that we had a baby with Down Syndrome. Which completely broke our hearts. After a couple days though we stopped crying and we haven’t cried since! It wasn’t bad luck at all! We actually just hit the lottery with our sweet girl!
Let yourself feel ALL of the emotions! It doesn’t mean your a bad parent because you are sad or you need to mourn! It healthy and needed. Also another word of advice focus on the positive and I believe positive things will come! Yes, Down Syndrome has its ups and downs yet so does raising any child!
Down Syndrome is everything I never knew I always wanted! I don’t see Londynn as Down Syndrome I see our Londy who just happens to have Down Syndrome and that’s a beautiful thing!”
"We found out that Caroline had Down Syndrome when I was pregnant. Our initial reaction was complete devastation. We were shocked, terrified, and couldn’t believe this was happening to us. We were a young couple, 28 years old, and couldn’t understand how or why this was happening. Thinking back on it now, it’s so crazy because we had no idea how blessed we would be! But, I think it’s important to have that “grieving” period where you let go of the child you thought you were having, and take time to accept the beautiful and amazing new journey that is in front of you.
Do you have any advice for parents who are going to have a child with Down Syndrome?
Caroline is only a year old, so we are still “new” to this and learning as we go. That being said, my advice to parents who are expecting a baby with Down Syndrome is - let your baby lead the way as you learn about Down Syndrome. Yes, there are things you can prepare for, but not all babies with Down Syndrome are the same. Also, get ready for your heart to explode with love! Caroline has taught us so much about acceptance, patience, living in the moment, and unconditional love. That is why we work hard to share her story and shout her worth - so that others can see how beautiful life can be with Down Syndrome.
I want people to know that we are “just like everyone else” (but, what exactly does that mean because everyone is dealing with something!). I want people to know that Caroline can do anything and to not put limitations on her or anyone with special needs. She is NOT just a diagnosis... not just someone with Down Syndrome. She has her likes, dislikes, interests and talents just like everyone else. She is our daughter and we love her so much!"
https://instagram.com/our_sweet_caroline?utm_source=ig_profile_share&igshid=1p2iekbkzhdya
“The blood test at the first prenatal screening on the twelfth week of pregnancy showed high risk of fetal Down Syndrome 1:21. Of course it shocked me and my husband. But then we decided, that it was mistake, because I didn't prepare for blood test correctly. And we thought so until twenty-fourth week of pregnancy, when next screening showed heart defect, which comes with Down Syndrome in 80% of cases. We made ultrasound of the fetal heart in 4 other medical centers, and as a result were 4 absolutely different diagnosis including the lack of deviations. And we were hoping for a miracle.
Unfortunately on the 36th week of pregnancy the heart defect was confirmed in cardiology. Doctors recommended us to choose maternity with cardiomegaly. Ksusha was born at 38 weeks and 5 days of pregnancy by caesarean section. On the third day of Ksusha's life the Down Syndrome was confirmed. And the heart defect was confirmed on the first day of her life. Of course it was so scary, were so many tears, were many questions to God, the earth moved. But when doctors brought me my baby from ICU to the room, love erased all worries, only happiness left.
If your child has been diagnosed prenatal down syndrome, don't dare to lament! Wait for birth of your baby with joy, don't let prejudices spoil the magic time of your pregnancy and wonderful moment of birth of your child. God gave you an angel! Be sure to diagnos the child for the presence of comorbidities. In Ksusha's case it's heart defect and congenital hypothyroidism. Be sure to join the community of parents raising children with Down Syndrome. You will have someone to consult with, someone to exchange experience with and you can make friends there. But the most important thing is love! Love your child and spend time with him/her. It would be great, if the child with Down Syndrome will have brother or sister, then his/her development will be faster and more fun.
Our daughter is very attentive, caring, kind and loving girl. She is so happy, when she makes her parents smile. She's very tender, she always kisses and hugs her little sister. They are very friendly and play together all the time. Ksusha's very brave, she isn't afraid any animals, water, speed. Children with Down Syndrome are very flexible, they're good at gymnastics and swimming. Children with Down Syndrome are stubborn in a good way, they will strive to do something, until they do it perfect. Ksusha loves music, she likes to sing and to dance. She learned how to use the phone and tablet very quickly. She plays games, watches youtube, takes photos. She has an amazing sense of trust in her parents.”
“It took us four and a half years and a couple miscarriages later and here we were, pregnant with our first baby, a beautiful baby boy via IVF and our fifth and last frozen embryo. We had turned down all genetic testing because what was going to be was going to be one way or the other. The thought of Down syndrome never crossed my mind throughout my entire pregnancy. Arriving 6 weeks earlier than expected and an emergency cesarean section, he was here. Loud healthy cries were heard from behind the curtain and then there he was, placed near my head I saw him for the first time.
The initial look at my beautiful boy sent shivering chills down my entire body and the only thing I could see was Down syndrome. Fear settled into my brand new mama heart as they whisked him away to the NICU. After all the scans were completed it was indicated that he did in fact have specific markers for Down syndrome. Two holes in his heart, herniated bowel, almond shaped eyes, and a thicker neck fold. Official test results came back a week later confirming what had already settled into my heart, Down syndrome. I experienced overwhelming feelings of devastation, fear of the unknown, and mourning the fictitious child I had created in my mind. Still to this day I have never cried as hard and as long as I did after receiving this confirmed diagnosis. “Will he ever feel what true love feels like in an intimate relationship? Will he be made fun of and or laughed at by his peers? He won’t ever learn to ride a bike, play sports, go to college, live on his own.
Advice: It’s ok to mourn the loss of this fictitious child you may have created in your head. It’s important to acknowledge that and set them free. There is an amazing essay by Emily Kingsley called Welcome to Holland. I highly suggest reading it. With the help of support groups and educational materials, you’ll see that it’s not at all as scary and heartbreaking as you initially thought it was. With those tools, the fears I initially had have ALL been proved wrong! Yes, because of hypotonia, their milestones may arrive a little later than the “typical” child however, those little milestones become huge victories and bring so much joy. You’ll see the determination in their eyes and they’ll fill up your heart with more love than ever imaginable.”
“When I was 4 months pregnant I received a prenatal diagnosis. My first initial reaction was sadness and fear of the unknown. I didn’t know if my daughter would have health issues, or live a prosperous life. I also researched Down Syndrome on the internet and found a lot of negative information which didn’t help. Little did I know she would be ok and come out a healthy 5 lb 2.5 oz baby. My daughter Ever Julia is 3 yrs old now and she has pushed through each stage of her development. Learning to walk at 2 years old, and now working hard to pick up speech. I am her biggest cheerleader at each milestone. I got her into modeling hoping to spread the joy of what Down Syndrome truly is. Ever loves music and one of her favorite shows is family feud. I couldn’t imagine life without her, she makes me a better person.
Advice is to find a support group and get connected with the Down Syndrome community. On Instagram or Facebook the support is there. Follow other moms and see their journey firsthand. Also know that your baby is a child first, love and care for them as any other child. Just enjoy being a parent, because your little one is counting on you.
Lastly get your child in therapies as soon as possible. Physical, Occupational, and Speech. Those will really help with development. Be patient as well, know that your little one will do all the things every other child will do. The path may be different but it all leads to the same road.”
“It took almost three weeks after Andy was born before we officially got his diagnosis. I think by that point I already knew in my heart, but hearing it from our pediatrician made it real. I was overwhelmed emotions. I think the biggest thing I had to cope with was realizing that our future might look different than I had planned, but he was already here in my arms and I was absolutely in love with him and this diagnosis was just one piece that would help me know how to support him better.
The best advice I got was “let your child show you what he can do.” It was such a relief to let go of my expectations and let Andy be my guide. He is eager to play and learn and explore and discover. We have so much fun together when I slow down and enjoy the little things and let him lead. Andy has been the best teacher about what’s really important in life. He gives my life more meaning and purpose. I can’t imagine my life without him.”
“Our initial reaction as was uncertainty. We didn't know what to expect. We were afraid about his health and how the world would be with him. It was all because we didn't know better. After we accepted the fact we started searching for information about it. We got rid of the fear, learned the greatness about it and now we enjoy it so much!
The first advice would be to understand that as a different situation in their lives it's ok to feel sad or bad or whatever comes to their minds. It's just a reaction. But then they have to go forward, learn about it and try to change the world even a little bit for their kid. After the initial news and scary moments they will see through the mist and realize this is truly wonderful. You just have to let your heart understand different is not bad. Different is perfect.
As a positive insight we would like to share that there is so much more than people know about this. Usually people think it's a bad condition but c'mon... if you see our IG profile you can realize what it has given us. We are so much happy than we ever thought we could be. Now we understand much more about ourselves, the world, the importance about being different and unique... the importance about letting fear go. We are sure that without DS in our life we wouldn't have this amazing happy and forward looking life. Pablo Emilio is teaching us so much every day. We will change the world in order to give him the chance to change it the way he likes it!”
“My initial reaction was of happiness because my doctor told me that there was the possibility that the genetic disorder that my baby had would not be compatible with life. So when we received the results of the amniocentesis the fact that José María had DS meant that he was going to live and be our baby and we were happy and grateful for that. Advice: I will recommend parents to get informed. To read a lot, to talk to other parents with kids with DS, to talk to therapists and professionals with experience. Knowledge is power! And they will see how happy and blessed these special families are.
We passed 70 very hard days with our baby in the NICU when he was born. But he showed us the warrior he is and we loved and admired him since the first day. Now that a year has passed I can say that I have never been so happy in my life as I am now and José María came to this world making our hearts happy.”
“Initial reaction: We were given the Down Syndrome diagnosis when we were around 11 weeks pregnant. I wish I could say I was instantly ok with it, but I wasn't. I knew I absolutely loved my son, but was grieving for the life I had imagined for him. Previously, I had very little exposure to the Down Syndrome community, and this made it difficult to picture what our new normal would look like. I was concerned about how people would treat him and if I was strong enough to be his advocate. It took about a month of adjusting and letting ourselves feel the emotions to take the next step. We threw ourselves into the Down Syndrome community and started attending local events, meeting families and watching the tv series "Born This Way". We were eager to gobble up anything that could help us prepare to be the best parents possible to our son. To our delight, we were greeted with open arms.
The Down Syndrome community was incredibly supportive and felt like our new home.
Advice to new parents: We anxiously awaited his arrival, even with all of our preparations. Nothing in the world can alleviate that anxiety like meeting your child for the first time. That is when it really starts to hit you how truly fortunate you are to have this amazing person with Down Syndrome in your life. This new path will bring you new beautiful moments in life you would have never experienced without Down Syndrome. Yes there are challenges, but you will meet them with strength you never knew you had. I wish I had known then what I know now. I would have stressed A LOT less!
Down Syndrome is not something to be feared, eliminated or mourned. This education and mentality needs to start with the medical community who delivers the diagnosis to the parents. They hold a powerful position and one of great influence. Final note: My son is absolutely amazing and wouldn't change him. Down syndrome is just one part of who he is. It does not outright define him.
“It was suspected during pregnancy, at the first scan. I was terrified, for my baby. I just wanted them to be safe and healthy. Once she was born and it was confirmed I was much calmer because I’d done a lot of research and met with other families who have children with Down Syndrome. I’d also met my baby at this point and she was perfect in my eyes. Advice: Don’t listen to what the doctors, consultants or leaflets say. We had some absolutely awful comments made to us through our pregnancy, go do your own research, reach out to families who have children with Down Syndrome, meet them and you’ll see for yourself there is nothing to fear. These babies are so magical and they really do fill your heart with so much joy. Also treasure every second it goes by so fast! They are individual little ones, don’t worry about what milestones they’re hitting or when, just take comfort in the fact they will get there eventually. Fill them with as much love as you can. Support them whatever they want to do, raise them to believe they can achieve whatever they set their mind to. And for everyone else who doesn’t have a child with Down syndrome, don’t be afraid to interact with them! They’re amazing people, say ‘Hello!’”
“The very second I found out? Devastated. No one wants to hear their child will have a disability. No one wants to hear their baby is going to have cognitive deficits. And I’ll be honest, all I thought was “mental retardation.” These are normal thoughts and nothing about them make you a bad parent to be.
Advice: It’s not easy. But it’s very different from what you’re imagining. It’s a marathon, not a sprint. The medical concerns will most likely be the hardest part for a couple years. You won’t even notice the physical and cognitive delays at first. And then after you’ve conquered the medical issues, you start working on the delays you imagined when you were pregnant.
But the love - oh the love is more than you can handle! If there is one thing I’ve learned, people love people with Down Syndrome! It’s crazy. These people are magnets for love and affection, and they share the same constant love in return. You will change. Emotionally. Physically. Spiritually. Everything about you will change. You will become the person that is reflective of your soul. You find a purpose in yourself you never knew you had. And it’s so good! Congratulations! And welcome to our giant family!”
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