Sweetheart. Chatterbox. Warrior.


I’ve never met anybody quite like Madeleine.  I had trouble bonding with both of the twins while I was pregnant (I think avoidance of the bonding process is probably a coping mechanism when you don’t know if your babies will live), but I specifically had a hard time with Madeleine.  Reid was Twin B, the one “on top”, and I felt him move and wiggle and I’d poke at the bumps he’d create in my side and chuckle, “oh Reid, you little monkey!”  But I never really felt Madeleine move, never got a chance to envision what her personality might be like.  And, in a way, most of my desperate pleading while on bed rest was directed at her.  My cervix was pretty much useless at that point, membranes ready to burst at any moment, and when I was alone I would whisper, “please don’t come out yet, Madeleine.  Please just try and stay in there as long as you can.”

I spent all 25 weeks of my pregnancy trying and failing to get to know my daughter, and yet, the moment I pushed her little body out of me, it hit me all at once.  Oh, of course!  You are Madeleine!  My incredible, strong-willed, beautiful, warrior girl!  I didn’t get to see it right away – she was sedated, impossibly small, her eyelids were still fused – but somehow I just knew exactly who she was.  I could feel it.

Madeleine’s future is on my mind constantly nowadays – what might her life be like having been born so prematurely, having had brain bleeds and shunts and all of the things that come along with that?  Will she be disabled?  What could that look like?  How will she experience the world around her?  Will she be curious and find the wonder in everyday things?  Use her imagination and be able to communicate with others the unique and profound types of thoughts that only children seem to be able to come up with?

Everyone says that it’s impossible to know, that only time will tell, and yet, lately I’ve started to think that maybe that’s not actually true.  It IS possible to know, I think, because Madeleine already knows, and she shows me everyday.  Every morning when I walk into her room to calm her crying, hungry brother, there she is, bright-eyed, a giant smile on her face, and she knows.  During meal time when she dances in her high chair and insists on feeding herself, she knows.  When she figures out a way to grab the toy that is just out of reach, or when she babbles and shrieks and fake-laughs an exaggerated HAHAHA just to try and get you to giggle, she knows.

I’ve noticed over the past little while that there is a difference in the way Madeleine uses her hand and leg on her left side.  A little slower, a little stiffer, a little not-quite-right.  We’re lucky to have lots of early intervention services available to us, and I know that there are lots of people who will try to help minimize this maybe-problem as much as possible if it turns out to be one.  But what I know – what Madeleine has always been trying to show me – is that if something’s wrong, if her leg is wonky or her hand doesn’t do what it’s supposed to, if she gets a Cerebral Palsy diagnosis, or a diagnosis of something (anything) else, she’ll be the coolest wonky leg, funny hand, Cerebral Palsy kid I’ve ever met.  She’ll figure it out, make it work, not let it hold her back, the same way she’s always handled everything that’s been put in her way.  And I cannot wait to watch her do it.


3 thoughts on “Sweetheart. Chatterbox. Warrior.

  1. I loved this! I feel the same way about my daughter, who was a 26-weeker. She battled the NICU and then at a year was diagnosed with epilepsy, and she is just such a fighter. These preemie girls are warriors, indeed!

    • When did you start noticing the epilepsy? Because of Madeleine’s brain bleed and hydrocephalus, we are always on high alert for seizures, but I’ve been told they are often hard to spot in little ones. Did your daughter have any issues with her brain before that?

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