Down Syndrome Awareness {Week 1}

I blink and the month is a third of the way over! I really don't know where my days go while I'm stuck in the trenches trying to keep three little people alive. It's all a blur, really. I need to start thinking about getting the girls' Halloween costumes put together because it'll be here quick. I am proud that I've started Christmas shopping, though! Small wins!

But before Christmas gets here, I want to recap week one of October and Down Syndrome Awareness Month (even though we're half way through week 2!). I've been sharing on Facebook and Instagram but I've also been learning sooooo much from other families in the Ds community who are sharing their own pieces of information! Lots to learn and lots to share!

First things first, what is Down syndrome?

• Ds is the most common genetic condition caused by a 3rd copy of the 21st chromosome that occurs in approximately 1 in 700 births. People born with Down syndrome will have Ds their entire life, they cannot give it to others, it cannot be cured. They do not "suffer" from Down syndrome, either. It's not a disease, it's just an extra copy of the 21st chromosome. That's it. :)

• There are 3 types of Down syndrome. Trisomy 21 is the most common; about 95% of all Down syndrome diagnoses are Trisomy 21, meaning all of the cells in the person's body contain the extra copy of chromosome 21. Mosaicism is the least common and occurs when only a portion of cells contain the 3rd copy of the 21st chromosome. Translocation may be hereditary and happens when that sneaky extra copy attaches itself to another chromosome.

• Approximately 50% of kiddos born with Down syndrome also have a congenital heart defect. Some are mild and can be monitored closely without ever requiring surgery. Others are more complex. Baker will undergo open heart surgery to repair his atrioventricular septal defect sometime within the next few months.

• People with Down syndrome often have issues with low muscle tone, known as hypotonia. Baker works extra hard to hold his head up and gain the strength he needs to roll over, push with his legs and develop those core muscles. It might take him a little longer to meet developmental milestones like sitting, crawling and walking but the important thing to remember is that he WILL meet them. 

I'd argue this next little piece of knowledge is one of the most important things we can share. And it doesn't just apply to people with Down syndrome. It applies to everyone, in all walks of life, whether they have special needs or not. It's so important (not to mention, the nice and RIGHT thing to do...) to remember that people with Down syndrome (and any other diagnosis you can think of...) are, above anything else, PEOPLE.

"People first" language.

Baker is not Down or a Down baby. He's not one of those "Down's kids." He's Baker. Baker is a baby who was born with Down syndrome. You've probably noticed by now that we talk about Down syndrome around here... ha! We talk about it a lot. Gracyn talks about it. She asks questions and we have discussions about it in a way a 4-year old can understand. It's important to us that she and eventually Leighton are comfortable talking about it so they can advocate on Baker's behalf some day. The only way to spread awareness and help people learn that this is not scary is to talk about it in a way that is respectful and that starts with not letting any diagnosis define someone.

Let me be the first to admit that I'm not perfect and I probably don't always say things correctly, even now, but words are powerful and I'm trying to do better. Heck, we've even had medical professionals refer to Baker as "Downs" at various appointments. I try not to take offense when I hear something like that but it does make me cringe inside. I don't think people, in general, are speaking with malice in their hearts or trying to be derogatory - maybe they just don't know what to say or how to say it - but statements like that perpetuate outdated stereotypes and negative connotations.

So, we're here to change that. Down syndrome does not define Baker.

Baker is a cute little squish of a baby who has just as much potential as you to grow into an honorable human who lives a fulfilling life and is a productive member of society. Just like me and you.

Continue following along the rest of the month! I promise to throw some good old "regular" life stuff your way, too. ;)