I’ve become an OG of CHB

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.

3 thoughts on “I’ve become an OG of CHB

  1. Sue Holland

    Doesn’t sound like bragging at all and would absolutely not judge you for an indulgement (is that a word?) I would applaud you for nailing the “controlling what you can and letting go of what you can’t” attitude. Love as hard as you possibly can at the moment. Well done. Praying for the best of results and a quick recovery. God Bless!



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