Two years ago, when Paige was 18 months I wrote a post sharing a bit of my experience with Down syndrome. We were in the thick of early childhood intervention therapies & I was still working through our surprise diagnosis.
This time last year I found myself at a coffee shop writing with unexpected tears streaming down my face as I wrote a post about the abortion rates of pregnant women who get the news that their baby may be born with Down syndrome.
And now I’m 3 ½ years into what still feels like my new life with a kiddo with Down syndrome & I feel like a sprinter who is realizing she’s running a marathon.
Life with any kid, in my experience, is high highs & low lows and life with Paige is extreme highs & extreme lows.
When you work hard for every little thing, every little thing is celebrated!
And while it is certainly teaching me so very much about being a human who slows down & pays attention, it’s also exhausting.
We watch Paige bravely tackle new things: gymnastics where Paige is the only kid presenting with a disability, potty training (which so far is more “sitting on the potty singing loudly It’s Potty Time” training!), & learning how to express those big feelings that she’s beginning to recognize.
But each new thing comes with a mountain of emotions. Another slew of energy needed to chase my adorable child who demands to run into the busy street & can’t understand why her mom doesn’t let her do what she wants.
Yes - I do deeply feel like I am one of The Lucky Few. A term coined by parents of kids with DS who genuinely count themselves lucky to get to parent their kid with DS. And if you’ve had the pleasure of meeting Paige, you know she lights up any room with her uncanny ability to truly see each person as a loved individual.
But I think I’m feeling tired by the messaging that raising a kid with special needs is a dream because it makes me feel like my exhaustion with waiting rooms, with having to be a specialist in a hundred medical situations when talking with actual Specialists, with getting my hair pulled out when Paige decides that she doesn’t want to get in her car seat isn't justified. But I’m also exhausted by being on alert for leukemia symptoms, by finding the right balance of friendship to encourage between my daughters knowing my oldest daughter will most likely be Paige’s caregiver once my husband & I die.
It’s sweet & lovely & wonderful BECAUSE it’s hard. But y’all. It’s hard.
As I reflect on this journey with Paige, I'm filled with gratitude for the resilience she has shown & the lessons we’re learning along the way. While it's undeniably tough, it's also a journey filled with love & growth, reminding me of the incredible strength within us all.