October

Today is October 3rd. This day has always had significance to me because it is my dad’s birthday. My dad is one of the absolute greatest guys I have come across in my entire existence. As I grow up and grow older, I notice things about him that I didn’t notice as a kid– like how much he loves his siblings, how he listens to the TV way too loud, and how much cream he likes in his coffee. I also continue to notice things that I have been noticing my whole life– like how he gives the greatest hugs, how much I love having deep one-on-one conversations with him about really thought-provoking topics (whether we have the same opinion or not), and how he treats EVERYONE around him with dignity, respect, and kindness (example: he taught me to notice cashier’s name tags at places like coffee shops and grocery stores and use their first name to thank them. It often catches people off guard but makes them feel appreciated.) If you’ve never had the opportunity to meet my dad, you are seriously missing out. He is a phenomenal human being.

AND, this post is twofold! For the past 3 years, the entire month of October has had a new significance to me. Almost three years ago, my little Jadey bug was born and I was forever changed. I learned soon after she was born that October is Down Syndrome Awareness Month! It is fitting because I was hardly aware of Down syndrome before October 2017. I knew what Down syndrome was and I had come across a few people with Down syndrome in my life, but I did not know much about what having Down syndrome meant or what a person with Down syndrome’s life was really like. I never asked questions because it never felt right. (I also never had a negative impression of Down syndrome, but that is a beautiful story for another time.)

So, friends… October is Down Syndrome Awareness Month and I am here to spread awareness. I am here to talk about Down syndrome, to share anecdotes and lessons I’ve learned from Jade, and to answer your questions about Down syndrome. Let me be your outlet. Let me be your researcher. I don’t have all the answers, but if you ask me a question about Down syndrome that I don’t know the answer to, I will do my very best to find the right answer– because I am still learning, too, and I want to know all there is to know! After Jade was born, I told everyone that this was our “new normal” and Peter and I just had to learn, talk to anyone we could, and ask questions about what we didn’t know. Even in those early days, I knew that we were on a lifelong journey of learning with Jade. I wanted (and still want!) to learn everything we needed to know in order to support Jade in the best way possible. I wanted to learn anything we could so that we could give Jade every single opportunity there is to be successful in this life. And let me tell you right now… this little girl WILL be successful in life.

Let me be your guide this October. Ask me anything. Don’t worry about phrasing or feelings or being too naive or too bold. No question is off limits; no subject is too raw. I do not get offended easily, so if you are coming from a place of love (which I know that most, if not all, of you are), I am happy to answer any question you have.

So, that’s my plan this month– to answer your questions and thus, share information about Down syndrome and my incredible life with Jade! I see so many people posting facts about Down syndrome every day and I think that is AWESOME. But, I know myself and I know that I will not keep up with that. Rather than setting myself up for failure, I’m just going to say that I will post as often as I can and that I will answer every question I receive… eventually. 🙂

And here are a few pictures of my little firecracker and her “Tito” to bring it all together.

A Ray of Sunshine

My writing started via Facebook posts. Once, I wrote a post inviting my friends to ask any questions they may have about Down syndrome. I know that people have a lot of questions that many are probably afraid to ask because they don’t want to be intrusive or offensive. I was there once– I get it. Before I had Jade, I knew so little about Down syndrome. In fact, I knew next to nothing about any disability. I asked my friends to put those concerns aside and ask their questions! I don’t get offended easily and I love sharing information that people truly want to know.

On that post, I received a lot of really great questions like, “How can we best interact with her and her awesome parents?” (Their words, not mine!) “What specific toys are helpful for babies with Down syndrome?” “Is there a Down syndrome spectrum similar to Autism? Or do all people with Down syndrome share similar characteristics and capacities?” “What do you want professionals to know about the language and terminology they use when talking to parents?” “Are there storybooks or children’s literature with characters who have Down syndrome?” “My best friend just had a baby with Down syndrome… is there anything I should be aware of or conscious about while visiting and hanging out with him?”

Those are all FANTASTIC questions. But, there was one specific question that multiple people asked and it was this– “How could anyone NOT love Jade?”

The answer to this question, for me, is a simple one…

I have no idea.

Jade is an absolute ray of sunshine. Her smile lights up her whole face, along with the faces of those around her. Everyone she interacts with walks away happier than they were before seeing her. She is joy in the purest form.

Don’t get me wrong—she has her moments. She is a two-year-old kid just like the rest. She gets frustrated and sad and she screams and cries. This is normal.

But her happiness is different than others. In fact, it is different than anything I had ever experienced before knowing her. Her joy is all-consuming. I am over two years into this journey and sometimes, it still takes my breath away. If I think too hard about it, it makes me weepy.

I feel so incredibly lucky to have Jade in my life. If you read my diagnosis story, you know that there was never overwhelming fear or grief for me. There was worry, and there still is. But I think I knew from the very start that something extra beautiful had just entered my life. And so far, I have not been disappointed. There is a spark in Jade that is waiting to ignite. There is a fire in that little girl which I am certain will grow and grow. And with all of that, I am reminded that I am the lucky one… I am the whole who gets to have a front row seat to see how she changes the world in huge and positive ways. Because she will.

I just know it.