It has been weeks, over a month even, that we have been thinking through possible scenarios as to what is causing our daughters appetite loss and abnormal pain when eating. I personally went from concerned parent to slightly aggravated- concerned parent, then mama bear mode, ultimately upgrading frantically to - don't EVEN get in my way! All this in the course of 3 weeks. But who was counting (just Nora's parents)? The 3 weeks were how many weeks we have been in and out of Doctor appointments with Nora, not counting the previous weeks monitoring her symptoms from home.
Our great Surgeon finally intervened and got us back to Brenner's Children's hospital and on the right track. Here is our safety net for when momma doesn't know best... Brenner's knows the rest!
Here is my where my wild mind has fallen lately. This is all the "reals", folks. I am sure you have been scrolling my newsfeed on my personal Facebook page, if not I encourage you to here. I am Pro-Awareness. I am a preemie mom always and forever and I advocate for her. She was my 29 weeker born at 3 pounds and 3 oz. A premature birth is something a mother never let's go of.
This month of February, is a month that seems to have branded our families souls so to never forget what snow brings, what "normal" means, and literally a constant yearly reminder of flashbacks, scares, scars, and screams. Absolute Hell, really.
Today marks Nora's twin cousin's 5th birthday in heaven. His name is John Carpenter Vorys. They were both planned with futures filled with baseball and cupcakes. They were both due three weeks apart. They both arrived early in their own horrifying way... still 3 weeks apart. Carpenter arrived stillborn. Nora beat her 38% chance of survival. We believe it was her cousin who told her to keep pushing though.
Trust me there were two similar but completely separate versions of Hell burning through us the year of 2012.
February for the past 5 years, has landed Nora in a children's hospital for pneumonia, dilations, surgeries, sometimes both. This year we just happened to have our neediness to fall the week we usually drop everything to take the time to remember Carpenter. We are a Pro-Awareness family for loss families just the same as preemies. I hope you can follow this rolling ball and all the knots wrapped in this story of our family. This week was marked on the calendar to be for our Godson, Carpenter... his week. My husband and I have instead have sat in a hospital with Nora since Thursday.
Today, is Carpenter's 5th birthday in heaven. We find ourselves surrounded in this hospital room surrounding a child we all love, this is a feeling all to familiar from where we were 5 years ago when Carpenter made his entrance breathless for always. His parents did not get to take him home and watch him grow the past 5 years, neither has the rest of his family.
It is hard to be in a hospital today. It is hard because this date was life changing. It is hard because the preemie who survived, is sitting in a hospital room awaiting surgeries. And it is painful because it shouldn't be painful on a 5th birthday. February is cold (pun intended). Where do we find ourselves in these moments?
Well, at the end of the day we find ourselves.... together. We are all grieving someone today. We are broken people. Our Godson died 5 years ago today and we will always remember. It has been hard to show how we would like to honor him today from a hospital room, the last place anyone of us want to be. The suck-iest part, is Nora is on a non-food, only clear liquids, diet and can't even toast his name with a good piece of cake!
This is what parenthood is like when one child needs close medical care and the other is above us in heaven pulling her though. In moments like this we just stick together. We remember our Carpenter, and we fill in where we can when Nora is back at Brenner's. All to familiar and so strange to feel back at those beginning moments though. It was so good to be together for just the short time today. All we needed was a moment to share together and feel each others presence.
The sun has set and the day is almost over. I feel a little off the charts and wound-up as we are exhausted, and awaiting what tomorrows news holds for Nora. We are sitting here watching her sleep on an IV, feeling grateful and sad. suddenly just now realizing how unprepared we are to explain she will have surgery again. Only this time she will remember it and feel it. What's worse, she was most scared to come in because she may get a shot. Today sucks.
Tomorrow we will wake up, breathe, call each other and see how it goes. This is how we roll. Like Annie and I called it, we are tied together forever, "Like Knotted up in a big mess that not even the most OCD person can fix. "