Bridget is having a procedure that will close a hole in her heart at Boston Children’s Hospital. The other day we were here for Pre-op, almost 12 years after her first visit when we were rushed into the NICU.
I was able to see how very far we have come in our journey have having PACS1.
Back in 2008 I was so scared. That word does not truly express my feelings back then, in truth I was so terrified I was numb.
Today in 2020 I am okay. I have my villagers checking in on me and when I answer I’m good, I am honestly telling the truth. I know in my soul Bridget is in the best hands and I know to follow my gut in relation to Bridget’s health.
In 2008 I would take any appointment given.
In 2020, for routine appointments, I know that if I schedule between 10 and noon I get in and out around Boston traffic.
In 2008 I wore my hair as normal.
Today in 2020, I know to wear it up in a ponytail or bun to make next day hair easier if we extend our stay.
In 2008 I did not know how to pack for the hospital. Not knowing if I was going home that day or the next week, I would stack that carriage with everything I might need to survive. Blankets, pillows, stuffed animals, a weeks worth of clothing for Bridget, snacks, diapers, books I would not be able to concentrate on to read, etc…
Today in 2020, I have my go bag that stays in the trunk (change of clothes for both of us, toiletries, snacks and extra wipes/pull-ups). I have my hospital backpack. It includes change of undies, deodorant (the two things the hospital does not supply!), Bridget’s “old” iPad, my electronics and cell phone cord.
In 2008 I would sit in the room, afraid to turn on the TV or do anything but watch Bridget.
Today in 2020, I am on my computer writing this blog post, reading a book, answering emails, have Pandora playing in the background while I wait for Bridget to come out of her procedure.
In 2008 I would watch the monitors and freak if any alarm sounded
Today in 2020, I don’t worry about the dings and alarms unless the nurse rushes in.
In 2008 I would be terrified to leave the room.
Today in 2020, I know the OR nurse has my cell phone so I can pop down to the cafe and grab a Diet Coke (yes, breaking my DC Fast but don’t judge).
In 2008 I would have feared traffic, so I would have left at 3 am and been here 2 hours early.
Today in 2020, I know the route and got here a respectable 20 minutes early.
In 2008 I would make sure that both Bridget and I were dressed in Cape Cod Casual.
Today in 2020, she arrived in her comfy clothes. I’m not in PJs but I am comfortable in case her stay gets extended and I cannot get out to the car go-bag. Layers because I know the room will be 60 or 90 degrees.
In 2008 I would not leave the floor she was on, afraid I would not find my way back.
Today in 2020, when we arrived and security gave me a badge I did not have to ask for directions on how to get to the Cath Lab.
In 2008, I would get halfway to the garage before I remembered I didn’t get my parking ticketed validated (the one ugh issue I have with CHB). I would get to the pay station, forget it was the same price every freaking time as I fumbled through my wallet while balancing all the crap I had on top of the carriage.
In 2020, I get my ticket validated the moment I walk in. Put it with the cash needed that is already in my back pocket and am good to go the moment I hit the pay station.
This is not a brag post, more brought on by a conversation I recently had with a newly diagnosed parent who was feeling overwhelmed. As I was telling them to please trust me this life gets easier. I was not lying. Yes there are difficult moments, there are times that some of those villagers get a WFT I cannot take anymore of this life texts. They also get texts like this one at the butt crack of dawn:
Having a child with a rare disease, or any health issues, is a some days scary life to lead. It does get better though. Today is proof of that.
Back in 2008 I wondered how “those moms” did it. How they remained calm. How they seemed to just know where the cafe was and how they could just sit and read a book. I did not realize then that they were taking advantage of a rare hour or two that they could just be.
Today in 2020, I know how they did it back then. Twelve years has taught me so much. I continue to learn tricks to make life just a bit easier.
Now I’ll take what I’ve learned, grab a Diet Coke and enjoy my book while I wait for Bridget.