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We are here to guide, support, and be a shoulder to lean on.
All of our stories are unique in our own way.
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My name is Chelsea Cardona.
I was born and raised in Florida and am currently in Jacksonville. Prior to 2018, I was living what I thought was the ultimate dream. Married to my high school sweetheart who is still super dreamy. We have a daughter (Sloane, now age 8) and a son Maddox (now age 6) that are 21 months apart and the best of friends. We taught them to travel as toddlers and took them everywhere. Then one day in early March of 2018, I found out I was expecting again. I was not happy. I didn't want a 3rd baby. My life was literally perfect (for me). I tried to not be too negative. My kids were excited and my husband as well. I was pretty intense when it came to testing for any abnormalities through blood(I paid for 2 rounds of extra testing for any possible issue.) Everything came back fine.. same with the ultrasounds. I still had trouble bonding with this pregnancy though. However, I knew the birth would bond me to my new daughter and I held onto that.
Her birthday came on December 11, 2018. Labor was easy enough. They laid her on my chest and I knew instantly that she had Down Syndrome and I spoke it loud and clear. They started to check her out while I howled and wailed, completely devastated. All of the worst thoughts went through my mind. I didn't think I'd be able to bond with her. After what I remember as complete trauma, I slept some, and then woke up at 4am with a burning desire to share our story with the world. I was going to face this, head on. I was going to love and protect my daughter and my family by learning everything there was to know about Down Syndrome, and then I was going to educate the world. And slowly but surely, I have been doing that. I have found my voice through her. She has changed me and my life for the better a million times over. By day 3, I was so in love with her I didn't shed another tear for almost a year. Kids like her simply don't make you feel anything but joy.
How does this affect her siblings? IN ALL THE BEST WAYS POSSIBLE! Now that we are involved with the community, they are around lots of people with Down Syndrome, not just babies. And they are completely comfortable talking with them and even being overly hugged. They are patient and they are accepting. They have also softened to other people with different abilities, not just people with Down Syndrome. They stop and talk to people in wheelchairs, people woth autism who may behave differently than them.. really anyone. They just love people! They are fierce advocates and will always be. They stand up to bullies. They include the new kid. These kinds of things you just can't teach. That good character we all want our kids to have, it comes standard to siblings of kids with Down Syndrome. A major perk!
Please contact me in any way.
Chelsea Schwarz Cardona on Facebook
Anna Dos Santos
Hi there! My name is Anna.
In December of 2018, my (now) husband and I found out that we were expecting our first child. My pregnancy went smoothly until my 17 week ultrasound, when the doctors discovered two “soft markers” for Down syndrome - my son had a bright spot in his bowel and heart. Despite my age (22), my doctors recommended that I have genetic testing done. In a twist of fate, the testing failed, and the lab was unable to test for any genetic abnormalities. My husband and I decided that we didn’t want any further testing. At just after 38 weeks, a routine checkup led to concern, as my son wasn’t moving as much as he was supposed to. I went to the hospital, where I was induced, however, fetal intolerance of labor led to an emergency C-section. When Daniel was born, doctors immediately noticed his low tone and advised us that they suspected he had Down syndrome. My son was soon brought to the NICU at Golisano Children’s Hospital in Fort Myers, FL, where he stayed for five weeks, due to being unable to feed and breathe simultaneously. While he was there, some mild and moderate sized holes were found in his heart, along with some other concerns. After coming home, he was hospitalized twice at 2 months old for failure to thrive, as we did not know of his intolerance to dairy and soy based formula. Daniel was briefly hospitalized once more at 4 months old for a viral infection, and had been out of the hospital since. He is now a happy and healthy 13 month old! For a brief time after his birth, we considered putting him up for adoption due to our fears. We even spoke with an amazing adoption agency, who showed us profiles of loving families wanting to bring a special baby home. We ultimately decided to parent, and it’s been an incredible journey since!
My name is Allison Leone, I grew up in a small town in Upstate NY, just outside Syracuse, called Rome. I have been living in Cape Coral, Florida, with my husband Rick, since 2006.
We welcomed our son, Maxwell James Leone, into this world on April 5, 2013. His birth was super easy and quick, after about 45 minutes of labor and 6-8 pushes Max arrived. We did not know about his diagnosis before his birth. He was 3 weeks early and had some trouble with regulating his breathing, so he ended up with a 15-day NICU stay. Once in the NICU he had great difficulty with eating, I tried desperately to nurse him but his latch and suck was so weak we had to switch to a bottle, and even that was a big challenge for him. I ended up exclusively pumping for 13 months and Max eventually learned to take a bottle, but it never was his favorite thing.
When I think back on my pregnancy, although there wasn’t any official signs of his diagnosis in the ultrasounds (he has a nasal bone, not extra fold of the skin in the back of his neck) we did have a few ultrasounds where we saw a few concerns. He had echogenic foci (bright spots on his heart) but we went back a week later, and they were gone. I went in twice to monitor his movement because he was not very active, and his kick counts were hard to detect sometimes. Everything always came back fine. Then around 26-30 weeks (I can’t really remember the exact time) his femur bone was measuring “outside the percentile of growth”.
Again, this could have been taken as a sign of Down syndrome, but when we spoke to the doctor, he said it wasn’t a concern because my husband wasn’t a very tall male and that Max most likely would be “shorter statue like my husband”.
I want to be clear that I don’t blame our doctor for not finding out he would have Down syndrome. I actually thanked him that he didn’t push us to do testing. We opted out of testing, and opted out of testing for his little sister too. I am glad I didn’t know. Yes, it was a shock to hear those words “officially” but once I processed the emotions, and gave myself space AND grace to feel all the feelings, good and bad. We healed together and began our amazing journey, a journey I am so so grateful for and would NEVER EVER change! I am one of the “LUCKY FEW” thank you God!
Max is now 7 and defied so many odds. He is an amazingly active and athletic little boy with a heart of gold. We call him the “major” because he meets and greets everyone and always commands the room.
Max has a fierce and sassy, sweet and compassionate little sister named Mila. Mila just turned 5. She and Max are the best and worst of friends. Just like all siblings… 😊
We have a busy life of therapy and homeschooling and adventures…and I love every minute of it. It isn’t to say that I had days of fear and hardships and struggles and worries. I had days so filled with sadness and guilt, fear and anxiety. Our path was harder, it was different, it was not what I imagined when I saw myself becoming a mother for the first time. The bad days, the days where I felt I was barely keeping my head above the water… those days are the days that forged me. I was shaped and forged and made stronger and wiser and kinder and gentler (with myself as well as others). I am a better me because I have learned to celebrate and make space for all days and all the emotions and lessons that come with this life.
My contact information is:
(I am not huge on social media but I do post from time to time) Please feel free to follow me but the best way to get in touch with me is via email or phone.
Jennifer Hogan Jones
When my husband, Ryan, and I got the news that our unborn baby had a 97% chance of having Down syndrome, we were devastated. The pregnancy was already unplanned, so a diagnosis such as this was even more shocking.
Ryan and I were both in our mid 40s, raising teenage daughters and felt completely unequipped to raise a “special needs” child. We didn’t know a lot about Down syndrome, but we thought it was horrible. It felt like a death sentence to our family. We thought we would never travel again or have any fun. We thought our life was going to be so much more difficult. We thought this child was going to be a burden to us and an embarrassment to his sisters. We thought we would lose friends and people would feel sorry for us. We thought the stress of it all would be too much on our marriage and we wouldn’t be able to survive it.
We thought wrong.
On July 19, 2018 Hudson Chambers Jones was born, and our lives have never been the same. All the fears we had vanished. One look into his beautiful almond shaped eyes and we knew we had just been given an extraordinary blessing. A gift straight from heaven that we absolutely did not deserve, but one we would treasure forever.
And all those things we thought were going to happen, didn’t happen. In fact, it was the exact opposite. We have traveled all over the country and even Europe with our boy. He is so much fun and has enhanced our lives in so many ways. He has not for one second been a burden, but instead a beautiful, joy-filled blessing! We have made so many new friends and our long-time friends are absolutely crazy about him. Trust me, no one feels sorry for us! Our girls adore their brother and love showing him off. And my marriage has never been stronger.
I thought this life was going to break us, but instead it made us! We all see the world in a new way. We have so much more understanding and empathy for others and we find joy and happiness in the little things. We have a new appreciation for the world around us and we would never go back to our life before Hudson. There is magic in that extra chromosome. Yes, Huddie and his extra chromie have taught us more in 2 years than we had learned in all our previous years.
We thank God every day for choosing us to be Hudson’s parents. We have made it our mission to help other parents, who find themselves in our shoes, look past the diagnosis and see the potential. The possibilities are endless!
You can contact Jennifer at email@example.com or on Instagram
Hi, I’m Maddie.
I was born in the suburbs of Philadelphia but I've been in Florida since 2006. I just graduated with my Associates Degree in the summer of 2020 in general studies and will be going for my Bachelors degree in Child & Youth Studies in Spring 2021. I've always loved working with children. I was a nanny for two years, and have worked in daycares and schools. I knew when I found out I was pregnant I would be a loving and caring mother to Myles, but had no idea how rewarding and magical it would be to raise a child with Down syndrome. Just when I was getting comfortable with the fact that I was pregnant, I found out at 12 weeks prenatally that my blood test (NIPT) came back high for Trisomy 21. With soft markers showing up on my ultrasounds throughout my pregnancy I decided not to go forth with any further testing. I knew deep down from these markers that Myles had DS. I wasn't willing to take the small amount of risk for the amnio test. The delivery of his diagnosis wasn't a positive one so I really had to put on my advocacy pants from day one, this is why I was inspired to start Myles Message.
I love talking to new moms and parents. If you're expecting and looking for support, first and foremost, congratulations. Your baby is going to bring you so much happiness.
You may reach out to me with any questions or advice. No question is silly. I'm available to chat whenever.