Say not in grief “she is no more”, but live in thankfulness that she was.
After four months of living in the NICU, we’ve all come to terms with the fact that life isn’t fair, and that “life is what happens when you’re busy making other plans”. We’ve had our moments of frustration and of impatience, and I’ve spent many nights mourning what was supposed to be but never was—the healthy pregnancy, the lack of medical intervention, the breastfeeding, the late night crying and inconsolable baby—telling myself that this is all OK, that life still has a way of finding the same finish line even if a different route was taken to get there. This journey through the NICU, no matter how drastically different from what we imagined when we set out to start a family, is all OK in the long run because when all is said and done, we get to bring her home.
Baby Neema lost her fight this morning and I’m absolutely beside myself. I’m shocked and I’m heartbroken and I’m angry at the world for letting this happen. It’s not fair that she fought for five long months and in the end just couldn’t keep up. It’s not fair that her parents walked a longer, rougher road than Don and I have walked, and have to leave this awful place with nothing but a heavy heart full of sadness and memories that will ache for years to come. What are they do to with the cute little outfits she once wore, and with the nursery at home that’s been meticulously set up and anxiously awaiting an arrival that will never come? How are they supposed to pray this evening to a God who decided that their perfect little angel needed to return to heaven far too soon? None of this was in the script.
Nyana is passed out on my lap in her CPAP hat that usually I hate but today I’m so thankful for. She’s finally asleep after spending the better part of an hour screaming hysterically, giving those severely damaged lungs of hers an excellent workout and maintaining healthy stats all the while. I feel so guilty for feeling so appreciative of what I have right now—ironically, appreciative of everything that just days ago I completely melted down over having to put up with.
It’s just not fair. I haven’t seen Neema’s parents today, and I don’t know what I’m supposed to say to them when I do see them. I’m sorry hardly seems appropriate and anything else just seems inconsequential. I can’t even imagine not bringing my babygirl home after all the hell and heartache I’ve endured within these walls. I’ve seen parents walk out of here without their babes before, but after such a long and valiant battle, it wasn’t supposed to end this way for Neema. It’s just not fair.
Sweet dreams, babygirl Neema. You were loved by many.