Tuesday, October 9, 2012

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.  


  1. Oh man, I know how you feel! We didn't have to have heart surgery, but we did spend the first 6 weeks in the NICU, and I know what you mean about feeling like you are waiting for life to really begin. So good to see where you have come so far on your journey though, and I am excited for you to just continue to watch that trajectory. Love your blog!!

  2. It is crazy how our little girls' lives already seem divided into parts when they are so young! The intensity of the first year was so extreme that it is hard transitioning into the other parts!

  3. I love this post! I feel like my life is split into Before Lauren and After OHS. I agree with settling into the groove of just being a parent to a child.

  4. I love Cora's expression in this pix! It is funny how when normal routine things start fitting in...and the big stuff is not so much there it is a wonder of where it went! it just seems normal good almost a WOW! We did this! Ever since we got off the every 3 week surgery rotation Maddie is just another 3 year old! Good to hear everything is good for Cora! Smiles

  5. I absolutely love that picture. She is adorable!

  6. Completely agree with you on life pre & post OHS. It feels a bit like having a split personality. Btw, you're doing the blog hop, right? How does it work exactly? I made it on the list but don't have a clue what to do now. Thanks!

  7. For me the divide comes on the day of that 20 week ultrasound. It is almost as if we lived a different life before then. I do have to tell you that your writing this month has been excellent. Your words read like poetry. You have a true gift!


Thank you for sharing your thoughts with me!