I think most moms of medically complex children have selective amnesia. Similar to that moment after you give birth where you forget that for the past 27 hours a being inside your stomach has been trying to break free from the smallest orifice in your body, made you have a cesarean (or worse, according to some moms stitches in places that were not meant to be stitched!). Before that this being spent the first nine months taking away your caffeine, your favorite wine and for some unknown reason all of a sudden the smell of bacon meant you were headfirst over the nearest receptacle as what little you have managed to eat made a resurgence.

Let’s not even talk about how you lost your waistline, grew breasts that freaking hurt and could only wear on slip on shoes!

Yet all those memories immediately go away when they place this screaming newborn on your chest.

You forget about the previous nine months of how this being tortured you and make a vow to love them forever.

Well, apparently most parents forget. Me? I still tell my oldest that I didn’t have failure to bond…I had a restraining order after she tried to kill me during child birth.

She says I’m a bit dramatic.

With Bridget, I did not have the chance not to bond. We went from the c-section, to home, to the NICU within 5 days. While I remember snippets of that first year, I remember the fear most of all. That I would lose her, that I would not be smart enough (or caring enough) for her to thrive.

The first five years of Bridget’s life were consumed with those thoughts. We went from one health crisis to another. When her health somewhat stabilized, we then began the education crisis. How did we educate a child, that no one knew what disease she had.

Over her 17 years, there were many moments that broke me. Some just exhaustion. Some moments of foolish fears. Too many IEP meetings and the second guessing if we were making the right educational choices. Watching the Covid pandemic decimate her access to the education system and watching her regress until there was no choice but to put her in a special education school.

More than a few days of wondering if she would survive whatever PACS1 had thrown at her this year. Tethered spinal cord, survived.

Sepsis, survived. Countless hospitalizations and procedures, survived. Three years ago, bilateral Achilles tendon surgery, survived.

All of these memories fade. They become funny stories, like the time I told one surgeon he could give me 5 more minutes since after all, if it wasn’t for Bridget his kids could not afford his kid’s private ski lessons. Or the countless times Bridget hit the emergency button in the elevator (or any bathroom) at Children’s. The creation of the waiting room game. Bridget’s team getting used to my sense of humor and not being shocked when I said she could be special needs but not an asshole.

Then a year ago, PACS1 struck again and more diagnoses entered her life: Catatonia, anxiety and depression. Once again I broke. I thought of all the signs I had missed. I struggled with not only feeling that I once again failed Bridget, but what would have happened if I hadn’t been here to advocate for her.

Treatment started, and honestly in all the years of her life, I have never doubted my chosen course of action more. The first three months were full of emotional breakdowns (not just hers), medication adjustments and looking for any sign that treatment was better than catatonia. If I had not trusted her neurologist, I would have faltered. I would have stopped the treatment. I would not have agreed to patience. Six months in, there was improvement but it was so minimal yet at the same time inspiring to see how hard she was working to come back to us. It was slow, achingly slow progress. Thanks to PACS1, Bridget’s treatment course was not the normal for catatonia (shocker). It was not treat and we are done. It has become one more diagnosis that will not be just her medical history, but something that we will have to treat and monitor for the rest of her life.

There were sudden signs that Bridget was not only coming back to us, but coming back to the life we fought so hard for. We went to her sister’s graduation and for two weeks Bridget was not hiding in her IPad but going out for meatball subs with her sister and friends. She was not clinging to me, but playing balloon volleyball in a room full of family and new friends. Instead of hiding in the car, Bridget was enjoying the attractions. Bridget was in the center and being her bossy self. She was talking to everyone, not just me.

Last month we started my favorite time of year: camping season. It was then I noticed that Bridget and her team were winning the battle. She was around the campfire, telling stories. Out for dinner and talking to complete strangers.

Catatonia will be a part of Bridget’s life, just as her PACS1, Autism, Intellectually disability and 20 other diagnoses are.

Parenting amnesia, I have discovered is real. It allows us to love our children even when they bring us to our knees. When they inadvertently make us wonder why we ever thought having children was a good idea. Like during Covid when my eldest decided to make candles and almost burned our house down. Or when I questioned why I had Bridget in so much speech therapy if I knew I would be answering the same question of what happens if Sofia wears her shoes to bed, 87 times an hour.

When I look back, the thing that allows me to hope is that Bridget has had a lot of hard moments, but triumphed each time. She has always managed to regain her smile. I know that PACS1 will continue to impact Bridget. A year after this latest scare, I am already succumbing to the amnesia that allows us to love our children no matter what they put us through. I am looking forward to when this becomes a funny anecdote of Bridget’s life story and not the hardest year of my life.

While equally hoping this is Bridget’s last hard year.