Did you know 80% of babies with Down syndrome are born to moms less than 35 years old! The myth that it only happens to older moms is FALSE.⁣ ⁣

I turned 28 a few weeks before we got married. We never really thought that we’d have issues having kids. Once we began trying, it seemed as if all we did was fail. The reality was the plan for us, was just different than we expected. Through infertility treatments I conceived at the ages of almost 33, 35 and 37. ⁣ ⁣

When we were trying to conceive Story, our doctor said the odds of us having a baby with Down syndrome increased a small percentage from when I was 35. I didn’t really thinking anything of it. I’m not sure if it was because I thought I was exempt from those odds or if it was because it didn’t matter.

Crazy enough our first treatment was a success. In the past it took round after round to conceive, so we were totally shocked with a positive pregnancy test. I’ve always declined prenatal testing in the past, just because I didn’t have any reason to do it. I chose to have it done this last time, because I wanted to know the sex of the baby. When the results came back we had no idea how lucky we were! I thank god every day for you, Story!⁣ ⁣

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Click here to read Part 1 of Emberley’s story.
Click here to read Part 2 of Emberley’s story.

As the pregnancy went by I had more appointments than I ever thought were possible. It was like we lived at the high risk clinic. The day came to be induced. She came out into the world beautiful and more or less healthy. We named her Emberley, after the campfires that my husband and I fell in love at over the previous summer. Emberley, because she was a tiny little burning flame. A fighter.

They whisked her away to the NICU where she lived for 31 days for feeding difficulties, and congestive heart failure. We stayed at Ronald McDonald house for that whole month and finally took her home, on medications and a strict feeding schedule. When we got home there was more trouble. During our absence, our trailer had been destroyed by storms and some little critters that had decided to move in. We couldn’t stay there. We were homeless, with nowhere to go so we went to the county for help.

We had a rough several months, bouncing from hotels to Air BNB’s. Covid hit and we were basically stranded, with nowhere to go. No one wanted to rent to us and we couldn’t afford to keep renting Air BNB’s and hotels and also have money to rent a house.

Call after call got us nowhere. There were no rentals available. By some miracle, our social worker found someone willing to rent to us. I still don’t know how she did it, but she did. We were able to move into a beautiful 3 bedroom home with a nice backyard. It was even in the neighborhood for our older children’s school so they wouldn’t have to change schools, which was great. And we could actually afford it. It was definitely a miracle.

We hadn’t even been moved in for a week when we discovered Emberley needed emergency open heart surgery. Nothing could prepare us for the whirlwind, life would be. She ended up being in the hospital for another month of her little life. It was hard watching my tiny, precious baby be in pain. It was hard to process all of it and she had some complications from her surgery. One of them resulted in her needing an NG tube and eventually a G-tube.

Before her G-tube surgery it was discovered that she had malrotation of her intestines and would need another surgery. And of course another hospital stay. I feel like her first year of life she spent more time in a hospital than at home. That wasn’t the case but it is definitely what it felt like.

Fast forward a year, and our little Emberley is thriving. She survived open heart surgery, abdominal surgeries, failure to thrive, congestive heart failure, covid, feeding tubes, and multiple illnesses.

Emberley loves music and farm animals and cuddling. She is whip smart, and has so much personality. Emberley is the glue to our little family and we all love her so much. Everything changed for the better with her existence and I can’t imagine a life without her in it. It is as if everything we have ever experienced was preparing us for her.

Click here to read Part 1 of Emberleys story.

A few weeks later I was at a new friend’s house, when I got a call from my doctor’s office. It was the nurse and she asked me, “is it a good time to talk and go over the results?” I didn’t even think it could be anything other than “your results are fine, have a nice day!”

But instead, she started throwing numbers and statistics at me and I heard her say Down syndrome. It was like on Charlie Brown when all the adults just make the “Wah, Wah, Wah” noise. All I heard was “Wah, Wah, Wah, Down syndrome. Wah, Wah, Wah, genetic counselor, Wah, Wah, Wah, high risk.” I felt like someone ripped the carpet out from under me.

I excused myself and drove home on auto pilot, not even remembering how I got there. As soon as I walked through the door my husband new there was something wrong. I couldn’t even get the words out before collapsing into his arms and sobbing. I ugly cried. I sputtered and spat to try and get the words out. I felt like I was being punished. Life was already so hard and now this? What did I do wrong? Why was this all happening to us?

The next few weeks were a blur. We saw a genetic counselor and had an amniocentesis. It was discovered that our baby had a congenital heart defect that would require open heart surgery. That was the most terrifying of all. I seriously think I cried for 3 weeks straight. Once all my tears had been cried and I had no more left, we got the call that confirmed it. Our baby definitely had Down syndrome, Trisomy 21 in all of her cells. Her! It was a girl! We were having a baby girl! For some reason the diagnosis of Down syndrome and heart defect turned me completely around. I did a 180. I no longer laid around depressed and hopeless. I was on a mission.

My only objective was to get this baby here and in our arms safely. To change our situation and get it together, so we could give her a good life. A friend found a woman that wanted to pay it forward and give a Ford Explorer to a family in need and that was the first step up we had. With a reliable vehicle we were able to improve our situation just a bit.

Read the rest of Emberley’s story tomorrow!

My husband and I come from toxic marriages and found friendship, understanding and love with each other. We each have children from those marriages, and at the time we got married, all together we had an 11 year old, 8 year old and a 4 year old.

The five of us all lived together crammed into a 25 foot dilapidated 5th wheel trailer. We were very poor but somehow we always made it work. Sometimes we just barely made it, by the skin of our teeth.

We shared my beat up Toyota Camry that was constantly falling apart. To say it wasn’t the time to be bringing a baby into the world would be an understatement. There was no place to even put a baby!

I remember feeling generally icky and I thought that I had bronchitis, so my husband took me to the doctor. They had me take a pregnancy test as a standard protocol for new patients. I was quite surprised when the doctor came back and told me “Congratulations! You don’t have bronchitis!” My head was spinning as I left the clinic.

What were we going to do? How in the world were we going to make this work!? I felt so stupid. There were times we didn’t even have warm water! My husband and I would live on peanut butter from the jar so that our kids could eat real food. I was devastated and quickly spun into a depression.

I was in an ugly custody battle with my children’s father and could barely keep it together. I just couldn’t wrap my head around bringing a baby into all that. My husband and I are resilient though, and we always made it work no matter what we were faced with. He assured me this would be no different. We needed to stick together, be strong and have faith. Faith can be a hard thing to have in your darkest moments.

The beginning of my pregnancy was rough. I was so sick all the time. I missed the first round of genetic testing and didn’t think much of it. I almost missed the second trimester generic screening but my husband had me go back and do it. I didn’t think it was necessary but he did, so we had it done.

Read more about Emberley’s story tomorrow!

When we got our son Grayson’s prenatal diagnosis of Down syndrome around this time 2 years ago, we were so scared. The hopes and dreams for our future child seemed to die with the news.

What we came to understand though, is that we were learning a very important lesson about raising a child. Most parents will agree that at some point, you realize everything you hoped your child would “be” is really just that, hopes. No matter what you do, your child is still going to turn into whatever they want to be, not what you want.

They’re going to like what they like, not because you like it. They’ll play sports or not, because they choose to, not because you want them to. When you start out with your first pregnancy, you envision everything you’re life is going to be when your baby gets here. And then when they get here… it’s nothing like you envisioned. Some of its better, some of its worse, and some is just plain different.

The beauty of Grayson’s prenatal diagnosis is that we got to this very conclusion before our son was even born. We realized very quickly that he was going to be different from what we had imagined. But different isn’t bad!

Grayson got to enter this world with no expectations placed on him, no pressure, no “plan.” He gets to follow whatever path he chooses and get there on his own timeline.

Most importantly, we’ve seen over time that there was nothing for us to be so afraid of. Grayson has a level of determination I’ve never experienced before. Whatever path he decides to take, I have no doubt he’ll not only succeed, but exceed any expectations someone may place on him.

I mean realistically, do we still have hopes and dreams for him? Of course! But I think we have much more of a “we’ll see what Grayson decides” perspective. It’s his world after all, we’re just living in it!

So here’s to Grayson, for teaching us early that we have no control, and that is perfectly ok!

In September of 2019, our family was surprised with news that at 39, I was expecting our third child. We were nervous and excited to reopen this chapter of our lives, that we thought was closed.  We brought our older two kids to the anatomy scan and we were so excited to share this with them. It seemed as though everything was fine.

I had to go back to capture a few more images because our little boy was so active. I returned alone on my birthday and when they were done they told me I had a phone call from a doctor. This had never happened before, so I knew something was up. I heard words like heart defect, genetic abnormality, and high risk.  I was rushed off for blood work. A few long weeks later, I received another phone call letting me know that our baby had a high chance of having Down syndrome.

The next few months were hard and I was just plain sad.  I tried my best to enjoy being pregnant because I knew this was the last time. Even though I’m absolutely miserable, I love being pregnant.  We shared his diagnosis pretty openly because we didn’t want to walk through this alone.  Every appointment was extremely stressful as they measured movements and unexplained fluid accumulation in baby and me.

Reid was born in April of 2020, during the time pandemic when most things were shut down here in PA.  There was a definite learning curve in helping to care for him in the NICU.  He took some time learning to eat and required oxygen.  Sometimes you don’t know how strong and capable you are until you are faced with the unexpected.

Reid is absolute sunshine and our family’s biggest blessing. My other two kids would wholeheartedly agree.  He makes us laugh ALL the time and he gives the best snuggles. He works so hard to accomplish what we took for granted with our other kids.  He has opened up our eyes to a whole new world.  I am convinced that all three of my kids are going to be world changers in their own way.