The Strongest Thread - 31 for 21

When I reflect on my life with Cora, I mentally divide it into three distinct parts.  The first part encompasses her birth, her diagnosis, the NICU stay, heart failure and the petrifying waiting, waiting, waiting for heart surgery to be complete and for life to really begin.

I think of the second phase like the honeymoon.  Surgery was a success, my girlie could breathe, and eat and be and my fear had just been lifted away.  It felt miraculous, glorious.  Like nothing could go wrong.  Despite lack of sleep and concerns that may have still seemed daunting to many, it was pure euphoric bliss. 

The third phase seemed to gradually sift into place, little by little.  It probably started once sleep deprivation began to really wear me down and my crazy hormones started to even out.  It’s then that I started to feel more like a typical parent.  I was finally stressed by typical things.  I was worried about development and whether I was doing enough.  I was exhausted and worn out and finally reeling from the life-changing roller coaster I’d just been on.

My introduction to parenthood has been different than that of most of my friends and family.  Everything seemed so big at the beginning that it took a while for the usual day-to-day difficulties of life as a new parent to sink in.  It was probably close to the end of her first year before I really started to feel that aspect of parenting up close and personal.  Then I could actually join in conversations with the moms at playgroups and story times and relate, rather than finding commonality only in my online Down syndrome groups and blogs and with a handful of families in our local Ds community.

At this point, as we move closer to her second birthday, I am appreciating the perspective that time is bringing.  I can look back and acknowledge how paralyzing and emotionally wrenching those first few months were.  I see now that I was living in a raw survival mode, my love for Cora the only thing propelling me forward.  Feeling the precariousness of your child’s life is a surefire way to show you the strength of that love.  It shows you just how strong you are too, even though I didn’t feel that way at the time.  All the time that my “strength” was being praised by others, I felt like an imposter: weak, frail, and brittle, like I was held together by only a thread.   It just so happens that it was the thread linking me to Cora, and that thread is indeed strong.

And as any parent knows, that thread, that love, shockingly continues to grow.  It’s no longer paralyzing and intense all the time.  It’s no longer constant euphoric bliss.  In truth, it can be a little of both those things, all the while interspersed with the joy and annoyance and worries that are life. 

Sometimes Down syndrome makes me feel very different from many of my peers.  Sometimes I feel like our life is very different and our concerns are very different.  But thankfully I don’t feel that way all the time and thankfully I am in very good company.

My perspective of not quite two years in is still fresh, I know, even if sometimes it already feels like a lifetime.  I look forward to seeing this thread lengthen and grow stronger.