From one Mother to another

I am so grateful to be apart of such a strong community of women. They have been nothing short of light to our family since our diagnosis. I couldn’t imagine not having these people to look to for advice with Ren. All of these women have a small child and or children with Down Syndrome. I asked them all the question, “what is something you wish you knew about your child or about Down Syndrome when you first learned about your diagnosis?” At first, I first wanted this for Tommy and I so we could be as prepared as possible for our son’s arrival; but I also thought maybe there’s another mama out there struggling that could use these words of comfort. These women have helped me just by publicly living their lives and showing people that Down Syndrome is nothing to be afraid of. They have shown me that it is something some people are blessed with, something just a little extra special. Please enjoy as we learn more about these amazing mommas and their personal stories. Most of them have their own blogs, websites, or social media. Make sure you check them out! If you know of anyone struggling with their own diagnosis please share!

We didn’t come into our diagnosis aware of the negative connotation attached to having a child with special abilities. We were joyful for our girls with or without having Down syndrome during pregnancy and that joy never faded at their birth, or with their karyotypes. It was hard however coming into conversations blind to the preconceived judgments of medical professionals, family, and friends built on an incorrect and negative stigma. I wish I had known the current state of the world in regards to inclusion barriers and abortions rates, so that I could have been more prepared to solidly and confidently support our positivity and vouch for the beauty of our daughters and their futures. With more information prior, I could have made better use of those first interactions and helped redirect the thoughts of others towards the shift of truth we now feel 100% capable of striving for. –Rachael Prescott

https://www.instagram.com/doublingdownmom/

Tessa surprised us with her extra chromosome. That surprise made me feel like my life was over. I wish I would have known we would find our new normal and that our lives weren’t only not over, but they would be filled with joy and love we’d never experienced before. I didn’t know if my other children would be able to relate to Tessa, so I wish I could have seen their faces light up when they see her, or hear their giggles when they play. I wish I could have known that though I thought Down Syndrome was a terrible surprise, Tessa would surprise me in the most incredible ways. She surprises me with her love, determination, kindness, and ability. That extra chromosome has been one of the best surprises of my life. –Mindy Guymon

https://www.instagram.com/guymontribe/

We first learned Lily might have DS when the nurse started cleaning her up right after she was born. The woman said, loudly, “She looks Downsy” and that’s all she said. I was really upset with how we were told because it all happened so fast and no one was sure and I was so tired and the term “Downsy” felt like the completely wrong word to use as a nurse. Lily then had Jaundice so we stayed in the hospital for 2 more days and when she was out from the light she was blue. They rushed her to the NICU trying to figure out what was wrong. This is where I wish I knew more about the health complications that come with DS. Her heart valves were closing slower than normal due to her low muscle tone causing oxygen to not flow through her body. I had to keep asking if this issue was typical for DS because I knew nothing. So the main thing I wish I knew was what type of complications can be associated with DS.  –Ashley Bowman

https://www.instagram.com/lily_mae_mama/

Two things that I feared the most when we found out about Levi’s Down syndrome was that people weren’t going to love him as much so he’d be treated differently and that I would fail as a mother because I knew little about how to care for a child and knew absolutely nothing about caring for a child with special needs. 

I read other mother’s blogs who have children with DS and saw how wonderful they made it sound and how awesome of a mother they looked. I thought at first, that won’t be me. Those other mothers probably so much more experience and connections to make sure their kids are ok. It’s just not going to happen like that for me. 
Thank God I was wrong!! 🙌🏾……I had prematurely planted seeds of doubt, sadness, self-hate, and failure into the life of my unborn son and in myself. So to answer your question, I wish I had believed in my son and his accomplishments and strength more. I wish I had believed in myself as a strong, loving mother more. Because now that he’s here, I look at my son and see all the strengths I never had and wish I did. I envision the brightest future for him. And ooohhh my goodnesssss the love he receives from everyone, not just family, but from strangers alike is amazing!! How silly of me to fear a lack of love for him. Now that I physically get to mother him, I know with all my heart that the fear of not being an adequate mother was stupid. God has given me Levi and has equipped me with all the tools I need to be the kind of mother that will nurture Levi’s success and always point him towards Christ. It isn’t a burden to have a child with Down syndrome. He’s a gift from God that I definitely don’t deserve. –Audrey Negron

https://www.instagram.com/its_me_audrey_v/

I wish I’d of known how happy Case would make us. That our tears shed in the hospital would turn into tears of laughter and joy in no time. I wish I’d of known that our life really wasn’t going to be that different. Sure we would have things that were part of our lives that weren’t part of others, but genuinely I believe our life has been so much more enriched since Case came! Most importantly I wish I’d of known just how this little boy was going to completely steal my heart and so many others. –Andrea Roberts

https://www.instagram.com/incaseyouredown/

I wish I’d known that the tears really would go away and that my marriage would be stronger. I wish I’d known that all my fears were in vain and I’d fall so head over heels in love with this child that I was initially so sad about that I wouldn’t change him if I could…I mean that I also wish I’d known just how much pure joy he was going to bring our family and that I was going to connect with some of the most amazing people just because we have children with a lil extra something. –Dawn Alsept

https://www.instagram.com/cedarsstory/

I guess I wish I’d known that it’s actually not that much different, I’ve got 2 boys and my little one with DS is much easier than my “typical” one! Health problems are the only negative that we see, but that can happen to anyone and your little one may not have any. Try to enjoy it, it’s no where near as doom and gloom as people expect! 
Really glad to have helped and always on the end of the phone if ur having a wobble! The DS community is the best! –Kim

https://www.instagram.com/downwithrio_zebedee/

I’m so excited for your family, your precious baby is going to bring you so much joy. You’ll love more fiercely than you could ever imagine 💙💛

This is an adventure, parenting a child…and especially parenting a child with Down syndrome. But for every challenge that’s faced, there’s overwhelming goodness and joy that more than makes up for it. Your baby has incredible potential, don’t ever forget that. Don’t put limits on him/her but with that same thought, be patient as every child has their own timeline. You’ll grow to appreciate all the little things about your child because even the tiniest things are of great importance.

Two years ago today we were given the Trisomy 21 prenatal diagnosis. I wish I could tell you that I accepted the news with arms wide open, that I was excited for the goodness that was to follow, that I celebrated that we were having a precious baby girl. But 2 years ago today and for several days after, I sobbed and grieved the ideal vision of a typical, healthy child. I feared our other children would miss out on things and we’d never have an “empty nest”. I was so frightened thinking our family’s lives were going to be turned upside down. And you know what? Our lives have been turned upside down, but not in the way I’d anticipated: I’m much more appreciative of life and all our blessings. I’m more aware of others and better recognize goodness and true beauty in people. And how our hearts have grown! There’s greater depth and purpose to how we live.
Aria’s a child of God, every bit as worthy and wonderful. She’s our family’s perfect bookend (or book start depending on how I look at it). Life with her is an adventure…a FUN one!
–Amanda Lewis

https://www.instagram.com/upsidesofdown/

We knew pretty early on that Maddy had Down syndrome. From the moment my blood test came back at 15 weeks that my HCG was high and I was at an increased risk of having a baby with DS, I knew she was going to be born with DS. So from 15 weeks on, I was seen by the MFM clinic and my regular obgyn and a genetic counselor.  I learned quite a bit about the diagnosis between then and on my own. I am one for questions and boy did I not hold back. I checked out books, joined Facebook groups, spoke to my Girlfriend who also has a little girl who is my daughter’s age who has DS, and just did as much research as I could. So knowledge wise about the diagnosis we were pretty covered. But the one thing that I would have to say that I wish we knew more about was how literally much in love we were going to be. That the moment we saw her, everything we researched, everything we read, everything we discussed, was out the window. Now after birth is where I have a million questions. I go to the program at Virginia Mason with my phone full of notes to ask but something that always lingers in the back of my mind is why does this extra chromosome affect what it does? Why does having this extra one cause delays or increased health problems like leukemia, what does it specifically carry that makes all the difference? Babies that are missing a chromosome have serious health risks as well but to me, that makes a bit more sense to have health concerns because you are literally MISSING something. But to have something extra, has always made me wonder.  –Nichol Hamilton

https://www.instagram.com/hammyfamof5/

My husband and I found out about my sons diagnosis early on in our pregnancy, and I believe because of that our doctors really pushed for his termination at first. In the beginning we received a lot of negative and outdated information. Some doctors would go as far to tell us our baby would have a low quality of life, which couldn’t be further from the truth! Something I wish we knew about down syndrome, was how beautifully different and yet also normal it is. My son is just like any other baby. -Jaymee Cisneros

https://www.instagram.com/jaymeecisneros/

My husband defenitly struggled with Joshua’s diagnosis. I did throughout my pregnancy, but the moment I had him that diagnosis didn’t matter because he was the most precious thing I ever laid my eyes on. If there was one thing I wish I would’ve known about Joshua when I received his diagnosis would be that his giggle is the most beautiful sound I’ve ever hear, he loves to play with us, and just be held by us. That he would have an extremely driven personality. That he would look so much like both of us and genuinely have different parts of both my husband and Is personality. Looks wise- he is my husband’s mini (plus a button nose and almond eyes) and full blown my personality! –Steffi Kerpan

https://www.instagram.com/somethingalittleextra/

Something I wish I would’ve known about down syndrome? Well, I was pretty fortunate because prior to having a Chloe, I taught special ed at a local high school for seven years and knew and loved so many amazing people who happen to have an extra chromosome! I knew a lot about down syndrome from my years in school, my years working in schools, and then my years being friends with my graduated adults who have down syndrome. I think that I would want people to know that life isn’t over after this diagnosis. It’s a different journey than maybe what you had planned but it’s not the end. There are going to be many uncertainties, but isn’t that just life? I also wish that someone would’ve just given me a big old hug and said, it’s ok sister, you can cry. But get ready because those sad tears are going to turn into happy ones the minute she latches, rolls over, uses a spoon, says mama and so much more! –Caitlin Braden

https://www.instagram.com/shesjustsoextra/

Looking back to the moments of fear, and unknowns when I got Tregs diagnosis (at 20 weeks pregnant) is honestly so painful to relive. Mostly because I suffered over nothing. No, I don’t regret grieving his diagnosis, I just wish I could have told myself “hey lady, you are going to be happier than you have EVER been in your life because that little nugget!” I wish I could have told myself that most days, although Treg does have Down syndrome, it isn’t something I think about. I just see Treg for who he is. A bright, sweet, silly boy. I wish I could have told myself that although right now the term “Down syndrome” is stealing all your happiness, there will come a time that Down syndrome will bring your life such pure joy. That I don’t have to be “strong enough” to raise a child with Down syndrome. I just have to be my ordinary self, and let my extraordinary son raise me. –Taylor Johnson

https://www.instagram.com/thehouseofwheeler/

We received a possible Down Syndrome diagnosis a few hours after Baylor was born. (When I say “possible”, I mean that the neonatologist was 99% sure he had DS, but would need further genetic testing to be 100%.) I knew in my heart he did, but over the next few days I went back and forth in my head about whether or not he did or didn’t. I kept worrying about all the possible complications that come with that diagnosis. I kept worrying about him as he’s older and in school. People with Down Syndrome have characteristics that make them look different than others. While I didn’t see them, I knew other people would. I hated the thought of my baby possibly getting made fun of because of those differences.

About 5 days after Baylor was born we received his genetic test results. They showed that he had Trisomy 21. While I was scared for his future, I was also feeling very blessed. I knew everything would be okay and that we would learn to take everything one day at a time.

If I could go back to those few days, I would tell myself to quit worrying. I would tell myself that Baylor would be loved and adored by many. I would tell myself that people would be drawn to him because of the peaceful and playful spirit he brings. I would remind myself that he is perfect.

I worried so much that our lives would never be normal again. So I would also give myself a glimpse of what our life would be like. I would see how normal our lives would still be. I would realize that this diagnosis doesn’t need to be something everyone seems to fear. I would CELEBRATE. Whether you receive a prenatal or birth diagnosis, I wish I could tell all families new to this journey that the life they’ve always imagined is still feasible. I wish I could show them how happy they would be in the future and how normal their lives would be. Time passes much too quickly to be consumed with worry. ENJOY every moment. Celebrate the good times and learn from the tough. Everything will be okay. One day, not far from now, you’ll see. –Ashley Mathews

https://www.instagram.com/betterwithbaylor/