Today, I am leaving Preemie Babies 101 behind. I am reluctantly packing my bags and heading out on a road that I know nothing about, yet everything about. I am heading back into the battlefield of prematurity.
While my daughter is 3-1/2 and you’d think that her prematurity is behind her, you’d soon realize there was something different about her. You’d see her blank stares, hear her repetitive language, and cringe when she started head banging. You’d wonder why my arms were black and blue, my hair disheveled, and my gaze averted.
You see, we’re just over here surviving. Each day walking the egg-shell covered pathway that winds before us. Each day not knowing what, how, or when the next meltdown will occur. Each day counting down the hours – minutes – until relief walks through the door and I’m no longer alone to handle the tiny, but strong, little tornado I’ve grown to love – and fear.
She’s the sweetest little thing, until she’s not. Anyone looking in from the outside might think that she’s just a bad kid – or that I’m a bad parent. They might not realize she was born at 27 weeks, one of the two of my triplets to survive. Or that she had level 3 brain bleeds, has had 6 brain surgeries, has ongoing seizures that we’re still working to control, and who is as spitfire as they come, having willed herself into this world from day 1. They might not realize that she sends up red flag after red flag for autism, has been in some sort of therapy from the day she came home, is borderline not able to attend a normal preschool, and while bubbly as can be and a memory I’d trade my chocolate for, can’t verbalize her feelings, and in turn, acts out in increasingly lengthy bouts of aggression.
The days are long here. There are no more “nap breaks.” No more moments of peace. No more mommy and daddy evenings. She must have one of us with her at all times, and by the time I sneak out after getting her to sleep, my day – my time to work, rest, relax, socialize, whatever – exists between 9 p.m. and however long I can stay awake.
And while I still like to think of myself as superwoman – and many of my friends would say I always seem to be able to juggle so much – I can’t. Not anymore.
Because she needs me more. More than I need my naps, my girl time, my “giving back” by working time. She needs me more than Preemie Babies 101 needs me. And the truth is, these past 3-1/2 years and all the things we’ve experienced because of her prematurity… we never left the battlefield. Unfortunately, some parents don’t. Some kids don’t.
Which is why it’s even more important that I say this:
I can no longer help other parents walk this journey in the way that I want to–to give it the attention it deserves. I am headed back to where I thought was long gone – the battlefield of prematurity. The fellow NICU mama who will be taking the reigns of Preemie Babies 101 is Leigh Ann Torres, and you’ll enjoy getting to know her better when her first post goes live on Monday. I’m confident that she’ll take care of you, this blog and community because it is such a lifeline to so many. Please welcome her with open arms to Preemie Babies 101. I’ve enjoyed my time here, and I am grateful to have been given the opportunity to help make this community what it is today. I hope I’ve made at least a small difference.