Advocacy.
Education.
Education.
Understanding.
Down Syndrome.
One of my favorite sayings over the past several months has been: "You don't know what you don't know." I didn't know that I was going to have a baby with Down Syndrome. I didn't know that I was going to be ushered into this group of people who have been impacted by something so small as an extra chromosome. I didn't know that I would (whether I wanted to or not) become a walking billboard for what having a child with Down Syndrome would be like. And you know what? I actually didn't know very much about Down Syndrome. And that's okay! You don't know what you don't know until you realize there's a gap in knowledge and understanding that needs to be filled.
Social media plays an important role in that awareness, and it impacted my process of grieving and acceptance in the beginning of our journey (a story I'll tell another time), but today I was reminded of the responsibility I have been given. One of my all time fave IG celebs is a 6 year old girl with Down Syndrome named Chloe (Coco for short) who's life is documented by her mom on the IG account @lilcocobea. She is sassy as all get out, and loves to sing, dance, cook, and shoot her own make-up tutorials (no I'm not joking). This morning's post on her account was dedicated to a couple that had viewed Coco's account while they were in the parking lot of an abortion clinic because they had received a diagnosis of Down Syndrome for their child and they had decided it was the best option for them. Lilcocobea showed them, just by being herself and living her life, that maybe DS wasn't so scary, and gave them the courage to choose life for their baby.
This is profound on many levels, most of which, I am sure, are not lost on you, dear readers. However there is a component to this that I never considered before I was standing where I am now, and that is: relief that there will be one more person in this world who will be like my Mildred Pearl. This is one more step toward allowing Mildred to grow up in a world where she may actually be able to have friends with the same number of chromosomes that she has. There is more to say on this subject, but I'll leave it there for now.
So, here is my opportunity to teach myself (I still am learning EVERY DAY about Down Syndrome), and others, about my daughter, and others in our beloved Trisomy 21 Club.
There is a blogging challenge for the month of October to write (and publish) a post for every day of the month of October. October also happens to be Down Syndrome Awareness month. So I have decided to share something about Down Syndrome every day for the month of October. Now, I have some ideas (and pictures... I'm sure I can scrounge up some pictures ;) to share. And I have some subjects that I've been meaning to research about for my own personal growth (relating specifically to DS and awareness), but that covers about 6 posts. So, although I'm sure only a handful of people would complain about daily Mildred pics ("Millie Mail" as I call it when I send them to the grandparents), I want to know what you have questions about!
What do you want to know?
Are you wondering about anything as you've been following my posts?
Do you have questions about terminology/ability/delays/etc.?
Do you have questions about terminology/ability/delays/etc.?
Have you seen or heard something from somewhere and you're wondering if its true?
I want to know!
Don't be shy. Don't be worried about offending. Don't be embarassed.
Don't be shy. Don't be worried about offending. Don't be embarassed.
We don't know what we don't know, until we do. And how will we know more if we don't have the courage to ask? ASK! You can leave questions in comments, or private message me, or text me, whatever works best for you.
You are Millie's tribe, she needs you too.
-M
Maegan! You are an amazing person (Daughter) who brought an equally amazing Mildred Pearl into my life. Watching you prepare yourself for the uncertainty of her birth and educatating yourself to make decisions that will affect her for the rest of her life has made me proud beyond words. Lastly, having Mildred living with us for the first year of her life has made me a believer that anything Mildred wants to do she will find a way to do it.
ReplyDeleteThanks Papa! We're lucky to have you, and I think you have a lot to do with Mildred's persistence (some call it stubbornness, perhaps? ;) and tenacity.
ReplyDeleteYes! Beautiful post, Thank you! I have had a question, and maybe you don't know the answer yet. I have a little girl, who just turned 4. And already she notices that there is something different (when she was with a group of kids, and one had DS). I wondered at what pain a parent would feel knowing other kids -even so young- don't know how to include their child. What are some good phrases/words/etc. to explain to children why this little girl/boy seems different (in look, behavior, anything). My fear would be describing something in a hurtful way - which might be different for each parent or child. Ex: "Labeling" could be hurtful. Or, would you disagree? "They can't do things like you do" - does not focus on being positive or uplifting. Not saying anything also does not help my child who can see something is not the same, but does not know how to ask about it or maybe cannot even pinpoint what it is. How would you like to hear me describe Mildred to my daughters? What ways can I encourage inclusion when maybe we meet someone at the park, or a gathering? Thanks!
ReplyDeleteThank you for this beautiful and honest question! I'll give you an off the cuff response now and then I'll include this in my posts in October and (hopefully) have something more eloquent and substantial to say. ;)
DeleteKids notice differences as a matter of observation, and not judgement. Those are apples, and this is an orange, etc. They (unlike adults) don't attach value to those things that distinguish objects or people. They don't think, "I like apples, but oranges are weird." They just make an observation.
Please, with all my heart, I ask you: acknowledge with your child the things that are different, but don't stop there! Teach them about the (many) things that are the same! Celebrate differences, celebrate similarities, celebrate the beautiful uniqueness of each person. Encourage your child to ask questions about things they don't know, and not to be afraid.
What parent doesn't love to brag about their son or daughter's uniqueness to people who are genuinely interested to know more about them?
Hope that helps (in the abridged form at least).