Tag Archives: PACS1Smiles

Not a tough year, but a really long tough moment of time

Just about a year ago, we entered the most difficult summer/fall/winter of Bridget’s life. I won’t say it was the most difficult year.

2025

First, I am not tempting the universe with a hey Kerri you thought that was a hard year? Hold onto your Pinot Grigio.

Second, in the spirit of the waiting room game, there have been a lot of difficult years and moments with Bridget.

The first year that started with a NICU and ended with more time spent in the hospital than at home or work. The first year of her life where she began this journey with more doctors than I knew existed. Where I learned new terminology like laryngomalacia and how using Dr Google when I read her medical reports was a REALLY (JC caps) bad idea.

When my husband came home and (rightfully so) told me our life cannot be about this child. That we, as a couple, would not survive if we did not have a life beside hers. The moment when I needed to hear it (though kind of resented it since I was covered in throw-up at the time). But we listened to one another and have not just survived the past 17 years but are still best friends.

The moment when she threw up all over Frecky’s new kitchen. Her brand new kitchen and dining table. And we were not asked to leave.

There was the year that I thought I have this, I get this, our child is just behind and learned that there was this thing called an IEP. That my child was not just behind her peers but would never ever be like them. The year that she learned to walk and then the minute she was off her walker, she needed spinal surgery.

The moment when she finally said her first word that everyone understood….and it was HOOKER as she sang along to Grease.

The year that all Abbey wanted for Christmas was her sister coming home, once again from the hospital when we almost lost her to sepsis. That wish coming true on Christmas Eve. In her words, “the best gift ever”

There was also that moment when a friend invited her to a birthday party, where she was not only accepted but a part of the group.

There was the year when I thought her heart was perfect, but she had to have a cardiac intervention. That moment when I realized I was the OG of BCH.

There was the year of accepting the autism diagnosis, learning what the freak AFOs were, the tears at those dreaded IEP meetings. Let’s not even talk about the COVID years where when the schools finally reopened I realized that her peers had moved on and the school I loved could not give Bridget what she needed. Putting her on that van, where she was going to a place I knew no one and had no village. That was a hard moment.

But also the moment of realizing this is where she belongs. That it is more about her happiness than my own comfortably.

Then that time when she once again needed surgery, this time on relegating her to a wheelchair for months and relearning (once again) how to walk.

A few years of respite, those moments when I mistakenly thought that the universe would give my girl a break. Only for her to become catatonic. When she would beat me, tell me she hates me, cry (both of us) for not apparent reason.

The moment, when we left a party and I angry/ugly cried to Jenn-Said even though she was without sleep and dealing with her own shit. The moments where friends did not let me down, but were once again there for me. That, I swear, put dates on a calendar to make sure I survived last year.

See, before 2025, all those hard times were moments. Yes, each moment broke me a bit. Anyone who regularly reads this blog knows all the times I’ve lost my shit. When I thought I cannot do this anymore. Friends, my freaking village, has held me strong throughout each moment.

But last year, I honestly thought I wasn’t going to survive it. When my beautiful child would hit and scream at me. When I second guesses her medical team. When I thought I did this to her, she was fine retreating from me but I would not let her. When I gave up wine, because it made me whiny (that sucked!).

When I screamed at the universe to just give us a fucking break because she had already endured and triumphed over so many obstacles. That, as parents, we accepted she was never going to prom, get a job, her license or have a life like her sister. And we have finally become okay with the fact that we have a forever 4yo. So give me a freaking break and not give her catatonia on top of every fucking thing PACS1 has made her fight against.

It was a very long nine months. Then, in March 2026, the medicine regimen began to work. My funny girl was coming back. She no longer said I hate you as she hugged me. She no longer threw a temper fit at a retirement party.

She stopped telling Souke that she didn’t want Pop-Tarts and instead started demanding them.

She began interacting with the world again. Telling stories and being the funny comedian. She worked her ass off to become a part of our world again.

So I won’t say that this was the hardest year of her life.

I will definitely say it was the longest moment we have had to survive.

Thanks to her and my villages, we survived.

From the bottom of my heart, thank you to everyone who made this year survivable.

I could not have done it without you.

Let’s just hope the universe forgets about us for a while.

But I know if the universe does not and decides to throw us another PACS1 freaking moment, we will survive it.

Because of you.