No matter how frustrated we get, God has not asked us to do the impossible.
~ George Grace
I may have reached my lowest point along our journey to date. I’m frustrated, I’m running out of patience, and I’m done with it all. Done with being told something different with every doctor and every RT who pokes their head in the room. Done with the nursing staff telling me how to handle or not handle my baby. Done with having no option but to sit back and let Nyana figure it out on her own, and being forced to play along with the hospital’s rules while we work on finding the finish line. I’m done with answering the question, “Will she be home soon?” and I’m done watching other babies born after Nyana go home weeks and months before her. I’m done explaining to people why my baby has tubes attached to her and what I did or didn’t do to cause her to come early. I’m done watching her fight to breathe, and I’m done putting on this fake smile and pretending I’m strong enough to enjoy this little adventure we’re on. I’m especially done listening to asinine comments from strangers who have no idea what we’re going through but who think that things like, “it’ll all be worth it in the end” and “stay strong, you’ve made it this far already” are comforting. And I’m done waiting to finally, fully, take on the role of Mum.
In one week we’ll hit the four month mark here in the NICU. Four months. When she was born way back in September, the general target that doctors told us to aim for was “her due date, plus or minus two weeks”. When she was intubated and we were given a clear picture of just how bad her lungs really were, my goal shifted to “extubated by Christmas; home by Valentine’s Day”. All the doctors and RTs smiled and nodded and gave us extra assurances that Valentine’s Day was far enough out that it was a reasonable target to aim for and that we’d certainly given ourselves enough “just in case” room that we wouldn’t disappoint ourselves. Valentine’s Day, after all, is a full two months past our due date of December 17th, and nearly five months after her birth. Surely we’d be home by then.
And now, here I am two weeks into January, face to face with the realization that we won’t hit that target. The date that I had been promised was absolutely, positively, no questions asked realistic to bring our babygirl home, will come and go and see us still here in the hospital. Sure, we’re comfortable here in our room with a view, but our apartment with cats and a stroller and a seawall just down the hill would be much more comfortable.
Believe me, I know that all of this will be worth it in the end. I know that she’s teaching us a wonderful lesson about patience and about valuing life and about being thankful for the simple things. I know Don and I are stronger than we ever imagined and that we’ll both be better for having endured this long road. I don’t care about any of that right now. I don’t care that we have an awesome story to tell in fifteen years, or that just by keeping this blog we may be helping out another family in another time going through the same thing we are now. I really don’t give two shits about any of that right now. I just want my baby home with us. I just want the family I dreamt about when we found out we were pregnant.
I also know that these words aren’t what you want to be reading and that many of you are mentally crafing your “it’ll all be OK” comments, despite my not wanting to hear them. I know you want to hear about big steps forward, and about how Don and I are weathering the storm with our heads held high even in the face of huge steps backwards. But I can’t give you that, not today. I need to be honest to myself, and be honest to Nyana, because really, she’s who this blog is for. Sure, I could tell you we moved backwards to CPAP today, so bottle feeding is off for at least two more weeks, but that’s OK because every step back is followed by a big step forward. I could tell you that and it would be true, but I’d be lying to myself because at this very moment, I’m not OK with it. Tomorrow, I probably will be OK with it, because I have to be OK with it to keep my sanity. Tonight I will dust myself off and I’ll have a good cry, and tomorrow I’ll be back to wearing my smile and plowing ahead, comfortably aware that we’re on Nyana’s time and that, also, is OK. But right now? Right now, I need to be allowed to be frustrated, and angry, and done.