October is Down Syndrome Awareness Month.
I sat down to write this post about Down syndrome four times in the past three days. And during those four times, Brett was watching one of our favorite shows and I chose to sit next to him on the couch, falling asleep five minutes in. And Lainey came crying to me with, “Mom, my mouth tastes like throw-up.” And Dash and Nella built a block tower together so high that Brett came running for me to take a picture. And I forgot about Lainey’s spelling test and had to fit a cram session in of all those tricky apostrophe words. I never got around to my post.
This is exactly what I wish I knew almost five years ago. That the third copy of the twenty-first chromosome that seemed to be a life game-changer would soon be swept up by the bigger things in life that define us. Tucked neatly in the back with playtime and school assignments and couch love in the lead.
My response to Down syndrome—however fortunate or unfortunate it is—has been much like my response to other hard truths in life: Let’s put some balloons on this. I realized just how much this is true recently when Heidi called to tell me that she broke her foot. “I have a foot boot,” she reported, “and I’m supposed to walk with a walker.”
“Dude,” I jumped in. “No big deal. We’ll decorate it. Clip on one of those obnoxious bike horns so you can scare people who walk in front of you. It will be hilarious. Oh and we can yarn bomb the legs. Get some balloons, tie them—” I stopped myself. “Oh my God.”
“What?” Heidi asked.
“I’m doing it again.”
“Doing what?”
“This is what I do, Heidi. I have to take every bad thing and turn it into a party. I don’t think that’s good. I mean, think about it, I do this with everything. I’m glitterfying. I mean, I’m joking but still. I’m silver linifying the shit out of something that sucks. Sorry about your foot, man. I meant to say that. What does this say about my ability to handle hard things?”
Heidi laughed. “Uh—that you have a coping mechanism that so lines up with your personality? Kelle, I swear to God, the day any of us calls you and you don’t do that is the day I worry. This is why you’re you. We need the balloons. Now tell me more, what color yarn should we use?”
I thought about this, specifically in relation to Nella’s Down syndrome. In the beginning, I needed balloons and lots of them. I needed a whole constellation of rainbow-colored balloons like the grouchy old man in Up so I could tie them to my house and sail high and higher, away from the world, up in the clouds where I could peacefully sort things out until I was ready to land. This pissed a lot of people off. Over time, I’ve untied the balloons, no longer needing them, letting them wander off to find someone else; and our house has landed on a sturdy foundation. Raising a child with special needs—although we aren’t defined by it—does take seriousness and proactive thinking and a mission to both equip our children with the tools they’ll need to face the world and prepare the world to accept our children. They’ll need a hell of a lot more than balloons—both our kids and the world.
But I still keep a little cluster of them—especially the yellow ones—because life is hard, and I’ll always need balloons. They’re less about Down syndrome and more about me. And on this blog and in my advocacy, you’ll see those balloons floating from time to time. When you see them, just know they’re there for me. They make me do my job as mom and advocate and person in this world a little better.
This was a beautiful post. Thank you for sharing.
Some of us need your balloons to get through our own hard stuff so please never stop glitterfying. I had my sweet Bella born unbeknownst to us with Down syndrome 5 months after you had nellq and there have been many many many days where your posts are what got me through. Thank to for being true to yourself. ������
What a beautiful post. I love that you glitterfy the crap out of everything. It really is you. And if we were real life friends I would say the same thing Heidi did…..don’t stop it’s awesome. ��
Perfect post for me! Thank you. I stood in line when my little one with DS was just a few months old to see you but backed out and left. Its because I read your book and parts were sad to me and I needed the balloons! I’ve been letting my balloons go this year too but still keep the red ones. I so love red! 🙂
When I read this all I could think of was “99 Luftballons” which really does sum up your post. Your shiny happy balloons are always going to call for some sort of attack. And you always seem to handle the negativity with such grace. Thank you for bringing awareness to Down Syndrome in a way that makes people smile. It’s a tough subject that a lot of people don’t understand, and balloons really do make things better. 🙂
When I got my daughter’s diagnosis 4 years ago (I was 18wks pregnant and had read your article in Parents exactly 2 weeks before) my best friend found your blog. And would email me when you posted new pics of Nella. Because who could be scared of something so cute??? So thank you for sharing Nella with us. She was the bright yellow ballon I needed when I was terrified and sad. I still love seeing her, so I can get a glimpse of what my sweet girl will be up to next!
Kelle, this sentence hit home for me, “I needed a whole constellation of rainbow-colored balloons like the grouchy old man in Up so I could tie them to my house and sail high and higher, away from the world, up in the clouds where I could peacefully sort things out until I was ready to land.”
This was me 6 1/2 years ago. I don’t know how but you always seem to put my feelings into words so easily, thank you for that. Thank you for glitterfying things, I understand glitter.
{{hugs}}
Keep hanging those balloons!!!
Bravo…balloons rule!!
We all need balloons from time to time.
Kelle, I’m so glad you’ve got balloons…seeing you with yours reminds me often, that I need to look for and blow up my own. I appreciate all that you do and share. I appreciate your glitter bombed, yarn covered, baloon floating ideas! Keep on keepin on!
I love this,Kelle! You are a inspiration to many and a wonderful mum to those kiddiewinks of yours. Much love sent over from England to you and yours and hey what’s life without a few balloons every now and then…. xxx
Love.
It’s been a long time since I have commented. I LOVE this post. And Heidi is right. It’s your special power. And maybe it’s good to make sure you add in a “that sucks” every once in a while. But the world has lots of people with that skill. And sometimes it helps us, and the people in our lives, to grab the balloons and decorate the seemingly negative situations in life. Because after we’ve decorated them, and lived with them for a bit we can realize that it’s okay. Maybe, even when a walker is inconvenient, it’s a fun conversation starter.
Love this…Soar high balloons!!!
Simply put and lovely 🙂 Enjoy your weekend, Kelle! Thank you for sharing your life with us 🙂
I love this about you, Kelle. I read Bloom last year when I was nearly dying from crappy circumstances. I love your take on life. You have unique challenges in your home, but if anyone can make it awesome–you can. xo
Aa parent, it is our job and our duty to our children to be their biggest advocate, special chromosome or not. It is important that this advocacy begins and continues their whole lives. I hope that the early childhood therapies that Nella received will continue in her new school and look forward to many more ballon filled journeys.
It’s been a while since I’ve read. I love this post so much! Why have I been away so long?!
This post, like many, made me smile!
LONG LIVE THE BALLOONS!
Think this is what the song Shine on you crazy diamond is about?
Spin some Pink Floyd and balloon on, lady.
It takes all kinds.
I love the balloon idea! And I’m a lot like you, in seeing the bright side of even the awful things, and trying to make whatever bits of them positive that I can. LOL What a beautiful photo of your little girl with the balloons! Nella is beautiful, and such a happy little girl in that photo. I’ll think of you next time I’m glitterfying something unglamorous. samm
You rock, woman! Don’t ever change or life will be dull and listless. We don’t have enough balloons in the world as it is, and you and your inspiring words make it so much better. Thank you for all you do.
Love. Love. Love.
This is so true! It’s funny how something can go from being so significant to just a minor little detail in your life. Our youngest daughter was born with Down syndrome and just turned two. I think back to where I was two years ago and just wish I could tell myself what I know now. Although, I’m sure I wouldn’t have believed it at the time. It’s such a small part of who she is. I am all for balloons! If something can make you feel better and help you get through a rough time, I say bedazzle the crap out of it!
Hello Kelle,
My name is Nathalie and I am an occupational therapy student. I have followed your blog for several years now and have enjoyed every minute of it. I have seen Nella grow into such a beautiful little girl and have been inspired by your family throughout my journey as a student. I recently started my own blog and through my site I hope to spread awareness about occupational therapy. As you might have already noticed, OT is a career that is not often in the spotlight. Many individuals have no idea what we do and how our services can fit in their life. I would like to develop an on-going series on my blog where families talk about their experience with occupational therapy. I would love for you to be the first to tell your story. Would you be interested in writing a guest post?
heartofot.com
It’s easy to judge someone when they don’t operate like us, and ever easier to judge from the sidelines when we know nothing about what the other person is going though. Judging puts up a barrier and for some reason makes us feel safe, and we can hide behind the “I’d never do it like her…I’d do it better.” Well, that’s all bullshit, isn’t it. Our judging is just our own shit that we’re trying to project on to someone else. And the fact that you can be who you are, and not let what anyone thinks or says change what makes you YOU, well friend, that’s why I love you. Your part about “You’ll see those balloons floating from time to time. When you see them, just know they’re there for me.” That’s being raw, and truthful and real about what you need sometimes. I’ll be blowing up some balloons tonight and putting some pretty on my shit week. Love you, Janita xo
As we’ve discussed – we handled our (somewhat similar) situations very differently… You with your balloons and glitter, and me down in my little cave until I was ready to emerge. And your kids – well, they need to see that you can thrive both with and without your balloons, as you’ve shown them you certainly can… So stay strong lady, and hold tight to those balloons when you need them. That’s what they’re there for.
Beautiful post- I went through a phase of being too much of a big deal grownup for balloons. Such a joke.
I love me some balloons when things are tough, but I know that doesn’t mean I don’t have strong foundations. Haters gon- hate etc xxx Nicola
What a beautiful little girl you have. She must be a wonderful blessing in your life. x x
I like that you do that, its who you are. We can only ever do a poor imitation of someone else. Own it Kelle xxx
I think this is one of your best posts yet.
May your balloons never pop Kellie. XXX
Way to go at being authentically you. This was a beautiful post.
Thank you for writing today’s post and artfully capturing something that so many of us need to get through the hard things in life….balloons.
Love the balloons metaphor. As a fellow SN mom, I need balloons in my life. So thank you for flying them!
The thing is…I also need to talk about the boot. I need to sit down and cry about how the boot sucks, and how sometimes – often – I wish it away. I think part of the hard work of parenting is glitterfying difficult circumstances, letting our kids experience the balloons and the horns and the streamers. But another part of the experience, an important part, is confronting the boot. Recognizing the challenges, and as you said, being a lifelong advocate for our kids. I’d really like to talk about that, too. Is there space here to consider the boot? 🙂
Hey, floating balloons is a much better way of coping than drinking too much booze or taking antidepressants or over eating etc. I think it is a very healthy mechanism you have created, don’t let the nay sayers tell you otherwise! And you are right, the extra chromosome does get put int in the background, if only they would tell us that in the beginning, think of all the angst it would spare!
Oh wow, what a powerful post, thank you so much. I saw the link on Rachel Held Evan’s page and came to check it out as i am in the middle of a series within my Taboo Topics series called ‘People Living with Disability or Special Needs’ and so have been sharing stories of different people in all different situations… http://brettfish.wordpress.com/2014/09/15/taboo-topics-living-with-disabilitiesspecial-needs-intro
i would love for you to share some of your story with my readers if guest posting is something you do but either way just wanted to thank you for sharing this inspiring post and for the work you do.
Keep on
The world needs people with balloons
love brett fish
Thank you for sharing! Glitterfying is GREAT expression and quite a good coping mechanism, I dare say 🙂
Great post.
Toward the end it made me think of 2+ years ago when I went online to Goodreads after reading “Bloom” and posted a review. (5 stars by the way. I loved it. My pregnant hormonal self was bawling and then laughing and then sniffling all over again.)
I posted a review and I couldn’t believe all the reviewers that were tearing it (and you) apart because of how “unrealistic” they thought your experience and reactions to your particular situation were.
What happened to trying to understand someone else’s experience without immediately judging it? What happened to the understanding that we are all different and we deal with situations in our own unique ways? The internet/social media makes it so easy for people to spew venom and cast judgement without trying to even imagine walking in their shoes. Just like you said in your post “when you see them, just know they’re there for me.” Your blog is a wonderful example of the beautiful way you live your life – the way you want to and need to – not only for you, but for your family.
LOVE what Heidi told you! -Best definition of Kelle. This post is so simple, to the point, and YOU. God bless you all and have a terrific Sunday 🙂
Tejas hugs,
Melissa
(And, omgosh, the horn part is funny!)
What a great post! When things get bad I turn it into a big joke so I can laugh about th situation. It feels great to be the person that turns a friend from crying to laugh/ crying.
Kelle,
I just finished reading your book Bloom, I loved it!!! couldn’t stop reading- love your photography and your writing style captivates me. I just finished working with Katie on the Mighty Acorn project, was thrilled she let me and my company be a small part of it. I loved your behind the scenes video- I included in our blog on our ideas tab- everyone loves it! http://www.birthdayexpress.com/partyideas/changing-face-beauty/
Hope to read more books you write…and will continue enjoying your blogs!
you inspire me
Jenny
And right there is the beauty of blogging and online communities… we can all be each other’s balloons from time to time.
Downs Side Up
Glitterfy-ers Unite! I too have been known to bring pinwheels and wear pink when everyone else wears black. I even bring party favors and have a theme for our IEP each year (perhaps this year will be glitter and balloons?).
A wise bear once said – Nobody can be uncheered with a balloon
Kelle – I loved this message. As our children get older, our needs change. However, we still need a “balloon”. Thank you for your continued advocacy and support of all of us on this journey. Hugs:)
Loved every word. YES! Keep on doing what YOU need. That’s all you have control of, that is all you can do. Such a powerful lesson that we all need to remember. You can only show up as you. Thank you.
i love you kelle, thats all! thanks for being YOU!
Never understood why the need for balloons would piss anyone off. You always inspire girl. Just keep being you…
I say, WHATEVER IT TAKES! If balloons are what gets you through, DO THE BALLOONS!
I absolutely loved this post. I found myself nodding in agreement. 14 months ago, I felt like my life was over. Now, it’s a little different (aka lots of therapists in my home!), but still so much is the same! A little dose of positivity goes a long way!