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a roller coaster on fire

October 4, 2017

As most of you by now know, Asher was born with a rare birth disorder called agenesis of the corpus callosum aka born missing a pretty important part of his brain and life as I know it got really, really weird pretty quickly. One day I'm complaining about my swollen ankles and the next day I'm sitting in the NICU staring at my tiny human unable to hold him while doctors parade in like clockwork, all rambling on about different conditions and concerns they have for Asher's future. 

 

Fast forward two weeks and I'm sitting here in the surgical family waiting room, switching off between praying the rosary, pacing back and forth and chewing on my finger nails all while waiting for my 16 day old who is in an OR room somewhere hidden on this floor getting his stomach cut open. You can tell the families in the waiting room that have been here before. They give me the knowing, sad half smile. A woman walks by and asks if she can pray with me, an older gentleman who must be someone's grandpa stops to ask if I need anything to eat or drink and I suddenly realize I am now a part of the shittiest club on this planet, the 'my kid is sick’ club. 

 

And all the while I have two thoughts running through my head (obviously aside from the overarching thought of Dear God please let my kid be okay). 1 - this is NOT as cool as it looks in Grey's Anatomy and 2 - why the hell is our roller coaster on fire again and when is this going to stop? The first is pretty self explanatory. The pediatric surgeon I met with does not look like Alex Karev or Arizona Robbins, I haven't picked up an any secret affairs between residents and attendings and (lucky for us on this one) there seem to be no serious disasters that happen here. As for thought #2, that one takes a little bit more explaining and is a good time to start from the beginning. 

Like most couples, I think, this pregnancy has been a roller coaster from day one. Or in my case, week 10 because it took me that long to realize I was actually pregnant. After spending most of the last 8 years hearing that I wouldn't be able to get pregnant on my own, to say it was a shock to see two pink lines on a pregnancy test would be an understatement. After confirming it with 4 more tests (not exaggerating) and a trip to the doctor, Tyler and I were elated to know that we would be meeting our little one in October. With that elation though came a lot of apprehension and anxiety. How would our parents react to us having a baby before getting around to the whole marriage thing? Were we going to be good parents? Are we ready for this? We pretty immediately went into panic mode. The walls on our tiny one bedroom apartment started closing in on us and we realized that we needed to figure our crap out, fast. 

 

The first couple months of pregnancy went along semi-smoothly I would say, like a kiddie roller coaster. A few ups and downs and hiccups here or there, but overall, we came up with a plan and stuck to it. Tyler and I both started picking up extra shifts at work, we began looking for a house and we put Princess Lola into dog training so we could trust her not to smother the baby in kisses when he arrived. I was still pretty sure this baby was coming a little too soon, but we were making lemonade with the most miraculous lemons we had ever been handed and we were ready. 

 

And then it was May 19th and I was nervously hurrying Tyler out the door because we were going to be late for our ultrasound. I was so ready to see our precious baby's face again and they were going to confirm whether or not he was a boy and it was supposed to be a really, really great day. We watched for 45 minutes as our little cutie wiggled around and the tech took a million pictures for us to take home and show family. I remember laying there and thinking "who cares if this timing wasn't ideal, it doesn't get any better than this." And then the tech flipped on the lights, reached over to grab a box of tissues handed them to Tyler and I and said the words that ran like a constant loop in my head from that point forward.

 

"Unfortunately, I have a few concerns and I am going to need to go grab a specialist."

 

The next several hours passed by like a blur. We were moved into this tiny room with one table and three chairs - this was what I would call "the crying room" for the rest of my pregnancy. It's the room they bring you to when they don't want the other normal patients to hear you cry while doctors talk at you about the millions of different things that could go wrong. Honestly, I can't tell you a lot of what anyone said to me that day. The door to the crying room was constantly being opened to a new face - doctor after doctor, a few nurses, a grief counselor, the woman who wanted to draw my blood, the genetic counselor, another few doctors. They all spoke a different form of medical gibberish and it wasn't until the final doctor came in to talk through next steps with me that I realized how serious this was. They wanted to schedule me for an amniocentesis to confirm that my baby had the disease that they were fairly confident that he had and from there I would have to decide what I wanted to do. I'd have to make the decision between terrible and horrific and there was no winning either way. 

 

I had entered the hospital that morning planning for the doctor to tell us the gender so we could decide what color to paint the nursery and instead I went home with information on how to plan my unborn baby's funeral. On our way out that day we were handed two packets of information: the one that all expecting moms get called "The Roller Coaster of Pregnancy" with information about everything that would happen in the remaining 6 months of pregnancy and then the packet that moms like me get, full of information on grief counseling and comfort groups and a notepad to write down all the information that doctors are spewing at you and a booklet to keep all the contact information of the hundreds of people you will have to see on a weekly basis. I remember staring at the two packets so angry because the secon packet didn't have a pretty picture of a smiling mom and baby under a "roller coaster of pregnancy" title because our roller coaster is not only full of ups and downs, our roller coaster is on fire. 

 

Spoiler alert: After two agonizing weeks of testing and waiting for results, we received the most beautiful news that we could have ever received, Asher did not have the disease that they had originally thought and though we had a long road ahead of us, we could expect to bring our baby boy home and we could plan on a long life with him even though that life might be a little more complicated than normal. 

 Asher Robert, 9 days old, looking as calm as can be in the NICU

 

 

 

 

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