“I think she has Down syndrome.”

Let’s talk about our Down syndrome diagnosis experience. Everyone with a child with special needs has their own diagnosis story. Some are very positive, some are heartbreakingly negative, and most are filled with a slurry of emotions. We had a good experience, but due to some of the horrific stories I have heard from friends in the Down syndrome community and an amazing organization called Down Syndrome Diagnosis Network (DSDN), I have become very passionate about helping to improve the Down syndrome diagnosis conversation. (You will probably hear me talk about DSDN a lot because it is amazing. The work they are doing is TRULY life changing.)

We planned to have Jade at home with a group of midwives, which I know some of you probably think is crazy, but it’s what I wanted to do, so I did it (which is very much in line with how I live my life). The labor and delivery went extremely well. It was exactly what I wanted. Maybe someday I’ll write about my three different birth stories… all three were COMPLETELY different. Like, so drastically different.

So… Jade was born at 1:00 in the morning screaming (good sign!) and as soon as I looked at her beautiful blue almond shaped eyes, I knew that she had Down Syndrome. I don’t really know how I knew (mother’s intuition?), but I’ve never been more sure of anything. For me, in that initial realization, there was not one moment of grief or anger or disappointment. I just loved her fiercely and set my mind to convincing others that she was perfect, albeit a little bit different. I’ll be honest with you, though… I was scared. What scared me most, was not knowing how everyone else was going to react to Jade’s diagnosis.  My sister was there for the birth (which was SO cool) and I told her first… “I think she has Down syndrome.” …then I told Peter, and then the midwife. Jade was surrounded by love as soon as she entered this world. The midwife checked her out and confirmed that she had some common characteristics of Down syndrome, but couldn’t say for sure (because the only way to diagnosis Down syndrome for sure is to look at chromosomes), so she recommended that we make an appointment with our pediatrician once the office opened in the morning.

Very long story somewhat short, that morning the pediatrician recommended we bring Jade to the hospital for some tests, and got us all set up with the NICU at the hospital near our house. We were in the NICU for four days. It felt like forever (especially since we were trying to avoid the hospital completely!), but so many babies with Down syndrome spend a lot more time than that in the hospital, so we considered ourselves lucky. In those four days, Jade was on oxygen for two days, had a feeding tube for about a day, and got lots of tests done. When we left the hospital, we had confirmed that she did not have congenital heart disease (about 50% of people with Down Syndrome do, so we counted our blessings on that one!), she was breathing on her own like a champ, and she was eating enough to gain weight. Basically, she was perfect. About two weeks later, we got the lab results from the chromosome test back confirming that she had Trisomy 21, Down Syndrome.

So, that’s the story…

I have a huge extended family and what you read above is how I told them all via email about my Jadey girl. Here is how the email ended: “But the most important takeaway and the reason I decided to write this email (so you all could “hear” it from me) is that we are absolutely ecstatic to have Jade in our family. Her Down syndrome diagnosis does not define her and is not at all a negative thing to us, therefore, we do not want or need any sympathy whatsoever. It’s not what we planned, but it’s what was meant to happen and I feel very blessed that it happened to us. We have a lot to learn and we know that, but it will be a continuous learning process throughout Jade’s whole life. We’ll figure it out and we’ll do the best we can for her. We plan to raise her just like we’re raising Elyse and give her all the love and opportunities possible. And don’t worry, Gramma… we still plan to have more kids. 🙂

Also, in case you’re wondering how we didn’t know before she was born, Peter and I chose not to do any of the genetic testing when I was pregnant because we knew that it wouldn’t change the outcome for us. Looking back and knowing all that I know now, I’m still very glad we made that decision.”

And then I went on to tell them how much I love them and that I am more than happy to answer any questions they have.

My family is incredible. Like, unbelievably incredible. We. Are. So. Lucky!

Jade has been accepted and loved for the entirety of her life. No one treats her differently, no one stares, no one shies away from interacting with her, no one whispers (unless they’re trying to get her to whisper back… which she does and it is ADORABLE).

I do not take for granted how lucky we are. This is the way it should be for everyone– diagnosis or not! Treat people kindly, smile instead of staring, and just love. It really is that simple… just love.