I recently asked my friend, Deanna, fellow Down syndrome blogger from Everything and Nothing from Essex, if there is a whole new generation of Down syndrome bloggers who document their babies' journey as we have been doing for almost 7 years now. She said that she believes that the new moms tend to utilize Instagram, Facebook, and other social media to share their stories these days.
Maybe I'm behind the times sitting here typing away on a laptop on this ancient blog but I am kind of partial to it; besides, sometimes I get a little too wordy for an Instagram post. And don't even get me started on Facebook. That's just not my scene. But I digress...I still receive emails from new parents who have stumbled upon our blog and most of them don't even address me by name because they don't know my name. So today, I hope to rectify that by sharing a synopsis of our story and the evolution of this blog. (Gee, I sound like a 5th grader giving a book report).
Hi, I'm Elizabeth. The dark haired baby pictured in the photo above. That adorable blond-haired girl in pigtails holding me is my big sister, Leanne. Yes, she is my biological sister despite what it looks like. And yes, she has Down syndrome. This picture was taken *ahem* thirty-some-odd years ago.
What was it like growing up with a sister with Down syndrome? I don't know. Leanne was the only sibling I had, so she was "normal" to me. When I grew up and moved away for college, I missed my sister a lot. To help fill the void, I started seeking out opportunities to volunteer within the special needs community. After all, this is "normal" to me. This feels like home. These are my people.
In college, I met this total dreamboat named Travis. Travis was the sweetest, kindest, most patient and gentle young man you'll ever meet. He loved me and just as importantly, he loved Leanne. She loved him, too. We decided we better keep him around long-term so when he popped the question, I said "Yes!" Four months later, we skipped college graduation (don't worry - they mailed us our diplomas) and we got hitched! Leanne was my maid of honor (or "Best Woman" as she preferred to call it) because, I mean, who else?
The next 8 years were quite adventurous. Travis' career had us living in 7 different cities within 6 different states. When we ended up back in the Midwest, just 3 hours from my mom and Leanne, and it felt right to settle down and start a family. I worked in financial development for a nonprofit doing grant writing, and I had been volunteering at this organization that provides care and programs for children with special needs. That's where I fell in love with this chunky little baby boy with Down syndrome. I came home and talked about him constantly. I don't remember the exact moment where I declared that I wanted to adopt our own baby with Down syndrome, and Travis doesn't either, but the adoption journey became our next major adventure.
The 3 short months it took to complete our home study was as long as we had to wait for placement. Enter Josie. The most life-altering blessing that had ever been bestowed upon us. But the real magic was seeing the immediate bond between Josie and Leanne.
To see some videos of Josie and Leanne's relationship, click HERE, HERE, and HERE, or check out the hashtag #JosieAndLeanneLoveFest
And this, my friends, is where Confessions of the Chromosomally Enhanced started. From 2010 on, this blog is where we've documented our family's journey. From growing up with a sibling with Down syndrome to Josie's health challenges to milestones...it's all here.
A friend was recently telling me that when you give birth to a baby with Down syndrome, the medical staff gives you a list of every possible challenge you can encounter along your Down syndrome journey. Since adopting Josie, I gave birth to two typically developing kids and no one ever gave me a list of all of the challenges they may encounter. Can you imagine?! Your child may get cancer, they may be in a car accident, they may experience teen pregnancy, drug overdose...If every mother were handed a list like that, leaving the hospital with this newborn would be trepidatious instead of joyous.
That's where Down Syndrome blogs serve the simple purpose of showing glimpses into the daily lives of people who have a family member with Down syndrome. As a Down syndrome blogger, I offer both the sibling (you have to check out Aunt Leanne's Top 5) and the parent perspective.
And while I've documented the challenges that we have faced, I hope the overall tone of Confessions of the Chromosomally Enhanced paints a positive picture of life with Down syndrome. Leanne is the single most influential person in my life and if you ask Josie, she'll tell you that she's my "dream come true." She is!
We welcome feedback of any Down syndrome blogs that our readers recommend. We welcome questions that you would like us to answer. And if you just can't get enough of CCE, check us out on Instagram @CatfishWithKetchup. Updates are more frequent there.
Thanks for reading!
My aunt is Down Syndrome too, and as you say, it is really normal for me: it is the only kind of aunt I know. I would like to ask you: what do you tell people who talk bad about you sister/daughter or about DS people? I'm 16 and I'm not really good at defending myself from other people, but when someone talks bad about my family... They have a big problem! But it is hard when people are so bad...ReplyDelete
Thank you for your time. Kisses from Spain
Lore- I don't have a family member with Down Syndrome but feel so compelled to answer you. I am a teacher and have spent many years working with adults and children with special needs. I have spent the last two years as an educator trying to educate my students on special needs because ignorance IS NOT bliss. Unfortunately all you can do is educate others. Maybe on World Down Syndrome day in March you can ask your teacher if you can give a presentation on Down Syndrome?ReplyDelete
If that isn't an option my other advice is to let the hateful negative comments roll right down your back! In reality YOU are the lucky one to have had the life changing experience of grown up around Down Syndrome. You are one of #theluckyfew.. I feel bad for others who are ignorant and haven't had the opportunity to be changed by something like Downs.
Thanks Elizabeth! I have been reading your blog since before my oldest daughter (with DS) was adopted in 2011. I have since had two babies and my kids love seeing the instagram videos of your kids. I am so happy you keep blogging and I love that my daughter and Josie are so close in age. I have talked to tons of moms with new babies and feel a little sad that there are not blogs for babies born recently since it can be so nice to have someone doing some of the same things at the same time when it comes to babies especially those with special needs.ReplyDelete
My sister in law Adelle keeps a family blog that you might enjoy: www.talesofayummymommy.blogspot.com. Her middle daughter, my niece Elyse, has DS. I agree that the blogosphere is an amazing place for sharing stories and I have loved reading your blog over the years. Thank you!ReplyDelete
LOVE this post, Elizabeth! Like you, I like blogging more than Facebook. And Instagram is fun, too! Our Joshua is 30 years old...almost 31! I WISH blogging had been a "thing" way back then. I would love to have chronicled our lives with him from the very beginning. I found you originally because of Josie, but I kept coming back because of your stories about Leanne! :) Thank you for sharing your life with the world! You encourage me daily!ReplyDelete