Monthly Archives: August 2025

My Mother-in-law’s Curse

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Do you remember when you were a teenager and your mom cursed you with: I hope one day you have a child just like you?

When my mom said that she meant perfect like me, it was more of a hope than a curse. Especially when I was a teenager. I never caused problems, there was never any drama, and I was a perfect student. Really, she had no idea how lucky she had it.

My mother-in-law on the other hand raised a bunch of hellions. I don’t know how she survived them. When she said her curse, she meant all the voodoo type of future grandchildren that would cause her children more gray hairs and sleepless nights. It’s true, my sister-in-law was gifted boys just like her brothers. It wasn’t her husband’s fault at all that the boys were wild.

Of course, my mother-in-law never mentioned the curse she bestowed on her son. And to this day, she will probably deny it.

With my eldest, I understood the curse was real. While she wasn’t a total hellion, oh man the teenage girl drama was real.

For some reason, I thought with Bridget that I was spared by my mother-in-law’s curse. Since Bridget has always been behind her peers and has a mind of a 4-year-old, I thought puberty would either never happen (yes, I was swimming in the river of the de-Nile) or would just be something she would not realize was happening.

Then catatonia happened. Then depression happened. Then PACS1 remained the gift that kept on giving. And now puberty and all the fun that goes along with it.

This Saturday was a perfect example of wondering what the hell is going on. Refusing to get dressed and wanting a PJ Day on a perfect end of summer day. Not leaving her room, on her device all freaking day. Now I remember my eldest at 16 doing this, spending the weekend in her PJs and the odors that go along with that. The just hanging out in her room, only to come out for food and water.

Because of the way this year is going, of course I have to grapple with is it PACS1? Is it catatonia? Is it anxiety because she doesn’t know what to wear or what the day is bringing? Is she depressed because she isn’t in her routine?

Or is she just being a pain in the ass teenager?

After being in her room for an hour, she comes out buck ass naked like the 4-year-old she is, asking me to help her get a dress of a hanger.

It again reminded me of my eldest at 16y, ranting at me one moment and being sweet as the young child I remembered.

Sigh.

All I know is just like typical moms, this mom will be doing a happy dance when the van picks Bridget up for the first day of school tomorrow. Hoping the battle to get her out of the PJs is a short one.

Just like I used to with her sister.

********

Disclaimer: if my mom denies that I was a perfect teenager, remind her that she is old and I am in charge of whatever nursing home she ends up in!

Deep Breath, there is so much to be thankful for

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It would be easy and probably forgivable if I allowed myself to stay in the pity party mode with all that has been going on with Bridget lately.

Those that know me, know that I set a timer on those moments, because there is way too much to celebrate. Even on the days when what I may be celebrating is that I realized my shirt was on inside out before I left the house and not midway through the workday (true story).

With the end of Summer this weekend (where did summer go!), instead of remembering that this summer was full of really hard moments, I am going to celebrate the best moments that happened in between all the crap ones.

  1. My eldest used us as a pit stop on her way to India and a trip of her lifetime to start the summer off. We hadn’t seen her since Christmas and let’s just say someone was very happy to see her.
  2. In all the craziness of catatonia, we found a new team of Doctors who meet with us once a week via video and explains things in a way that makes sense. They don’t talk at us but with us and truly care about improving Bridget’s quality of life.
  3. An unexpected phone call from a researcher who is studying effect of PACS1 on the brain and learning that not only has he not stopped studying PACS one, but research is also continuing by others across the States.
  4. That my office has been supportive and helpful with all the expected and unexpected time off for Bridget appointments. Bonus: they never judged when I took a “me day”
  5. Friends that check in, friends that have been there when they can and accept when I cannot be there.
  6. That my mom still goes to Barry Manilow concerts and dances like a teenager.
  7. Pinot Grigio.
  8. Our annual camping trip in the land without WIFI or Cell Service. I was so nervous about how Bridget would do. There were low moments, there were moments where she was not herself balanced with moments in the pool (her happy place) and the campfire where she was the girl I remembered from summers past. That we were surrounded by friends that said there are no words, but they are always here for us.
  9. While we have not been able to do date nights, we have a firepit. Our backyard escape has been where we can reconnect and remember that throughout it all, we are a couple first and Bridget’s parents second.
  10. That while summer might be ending this weekend, there is still time for moments like this:

What are you happy for this Summer?

When you feel defeated….

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I was sent this meme the other day and it really put this unexpected life in perspective.

As much as I hate, and I mean HATE in JC CAPS, how much Bridget has suffered in her 16 years, she not only survives she triumphs.

While Bridget battles, I admit to faltering when she has to survive the shit storm. Tethered Spinal Cord just after she came off a pediatric walker? Cue the ugly tears and emergency phone call to my BFF. Going to a pre-K all school playdate where she was knocked over on the playground and I lost it and said she was going to be homeschooled. Thankfully, this was a very brief moment until sanity restored regarding my homeschooling lack of patience which was reinforced when Covid shut down the education system.

Every 12-18m the PACS1 gift that keeps on giving creates some other storm that Bridget (and her family) will need to weather. In the past five years, Bridget has triumphed over relocating schools, Achillies tendon surgery, oral surgery and is now fighting catatonia.

Since 2008, Bridget’s battle average is currently 100% kicking PACS1’s ass.

My bet is on my tiny but mighty warrior.

Not to tempt fate or anything!

I’ll tell you a secret…

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Shh…I want to tell all the special parents out there a secret:

It is okay to feel guilty.

It is okay to not always love this life we lead.

It is okay to wish your child was typical.

I have this friend, Jenn. Jenn is usually right. She has been since high school. A few months ago, Jenn said “Kerri it is okay to resent this life you are living.”

Typical me, I argued that I don’t have the right to ever be upset with Bridget or this life we lead. I chose this life. I chose to save Bridget in the NICU when we lost her, then multiple admissions that first year of her life and almost every year since.

2009

I am the one who has subjected her to procedures and testing, both invasive and non-invasive. Trying to find a diagnosis, a cure, a treatment plan.

2023

Not knowing at the time, how much more I would be subjecting Bridget to in her fight against PACS1.

2025
2017

This child has had more MRIs, EEGs, lab work and testing than any other person I have ever met. She has triumphed in therapies from learning to eat, to learning how to walk up the stairs. She has conquered everything PACS1 has thrown at her.

From 2014
To 2024

How dare I, for one moment, even brief, resent this life she has fought so hard to live?

Jenn said: Because you have fought alongside her every step of the way. That is why you are allowed to say fuck this, this is hard, this is unfair. Because you think it and fight anyway.

This, my readers, is true friendship. When your friend cries alongside of you. When your friend fights alongside of you. And more importantly, when your friend calls you on your bullshit. When she lets you have the pity party, but tells you when it is time to stop feeling sorry for yourself and start admiring how far you’ve come in 16-years.

Yes. I feel guilty all the time. I feel sad. I feel some days that I punishing Bridget not helping her.

I think that’s normal. As long as those feelings are balanced with: I’ve got this, I will fight for her. I will never give up

So, to you, my fellow warrior parent…listen to Jenn. It is okay to feel everything you are feeling. It does not diminish your love for your child. If anything, it proves that a parent’s love is stronger than whatever disease they are fighting.

2025

Because we love these children despite their difficulties, not because of them.

So, feel whatever you are feeling. Lean on your friends and listen to them.

As Jenn said….it makes this life so much easier.

Milestone Envy

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When Bridget was younger, it was so easy to celebrate the milestones that she worked so hard to achieve. She might not have walked, rolled over or jumped on the developmental scale like her more typical peers…eventually she mastered them.

Bridget at field day around age 7. When we never thought she would be able to walk, she hoola-hooped!

When your child is disabled, you start celebrating the tiniest milestones (she ate without choking!) and overcoming at one time seemed like a skill we would have to give up on. And then later once again, her proving us wrong. It would just take more time and be done in a way that we never expected.

With Bridget’s sister, I have always been laid back when it came to transitions. Going from pre-k to kindergarten? That is supposed to happen. No tears. Turning 16 and getting her license. That is the natural progression. I would have been more upset if she did not get her license. When she graduated high school, she had four options: college, a job with an apartment, the military or not my house. And yes, I not only had that conversation with her but with her high school guidance counselor.

With Bridget, her obtaining those “smaller” milestones that were celebrated seem so far away.

Because at some point, you realize this child is never “catching up”.

Bridget will do many things, but she won’t ever get a driver’s license. She will never go to college, and she will never get married or have a family of her own.

She will never get that “first job” that teaches her how to be a member of a productive workforce. She will one day get a job, but it will be more of a life skill and not a lifestyle choice.

Bridget will never get married or have a family. She will always be a part of a family. Living either with us or her sister. But Bridget will never know the joy of seeing her child’s first steps to them graduating college.

Bridget will not go to college. Now with her sister, no one was more surprised that I was when she decided to go to college. I didn’t expect it to be on an iceberg. I didn’t expect this child who wanted to quit school in third grade, become a student on the Dean’s list. Bridget will never get to shock me that way. She will stay in her special ed program until the day before her 22nd birthday. She will not live in a dorm, have a first love or find her career.

This isn’t anyone putting limits on Bridget. It is the reality when your child is forever 4-years-old. That reality keeps getting closer, the older Bridget gets.

Most days that’s okay with her dad and me. Because we do truly know who this child is, she is our forever child who will do great things and bring tremendous joy to not only our lives but to just about everyone she meets.

Then there are those days when you see her classmates from when she was in a typical public school go to prom, get their learners permits and start touring colleges. When we see the photos of homecoming, dances and sporting events. When we are at a restaurant and our hostess or waitress used to be in kindergarten with Bridget.

And in those moments, it hurts just a bit that I cannot tell her IEP team that her choices at graduation are college, the military or not my couch.

Even though we don’t really mind her being there.

Small moments, big results to keep myself sane

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The beach is my happy place.

It is not Bridget’s. Yes, I can get her there, but she wants to leave as soon as possible. Between this trait and her not enjoying M&Ms, I sometimes question if she is really my child.

Then she cracks a sarcastic one-liner, and yup there is the proof!

With everything going on lately, some have asked how I keep a positive attitude (full disclosure, it is not always sunshine and glitter over here) and/or I hear “I don’t know how you do it”.

Here is the thing, I don’t have a choice. I rechecked the hospital records and there is not only a non-return policy, but apparently children also don’t come with warranties. This may have been helpful information prior to deciding to have children. It’s like a super-secret detail no one tells you when you are young and want to start a family.

My advice to anyone who is overwhelmed by whatever crisis their child is facing is to find small snippets of “me time”. I know, it is not easy. It’s not like you can just escape for a weekend getaway with your spouse. You can’t afford to even go to dinner because it will cost you not only the cost of dinner, but at least $100 in childcare costs if you are gone more than a few hours. That is even if you can find someone you trust to care for your child. We do not qualify for respite care (well, Bridget qualified for 1.25 hours per week–not worth the paperwork!).

The times I miss my eldest child the most is when I want to run to the grocery store and it’s raining. Kidding, I miss her all the time! But those moments that I took for granted when she was here and I could go for a walk with my husband are probably when I realize how lucky we were when she lived at home.

This is how I carve out a few minutes each week (I wish each day!) to just refresh and check out for bit.

When the pharmacy says Bridget’s prescription will be ready in about an hour, I send this text to my husband:

When driving home from work, I take the long way. I added 15 minutes to my commute. I listen to a podcast or the radio. Sometimes rapping along to Enimem if you are ever next to me in traffic, don’t judge my throwing hands. Sometimes rocking out to Adele or Toby Keith. I take those extra 15 minutes to transition from “work Kerri” to “mom Kerri”.

On the nights my husband works, I put Bridget to bed at 7p and watch the Real Trashwives and realize while yes, this life is difficult, it is not as dramatic as whatever crisis a Trashwife is facing this episode.

I put my earbuds in to drown out the sound of whatever video snippet Bridget is watching on repeat as I escape into a book.

I sleep in on the weekends. I get up at 6am, give Bridget her medication and then escape back to bed until 9am. Yes, I can hear her on the monitor on those mornings she does not go back to sleep. But I am not up and facing whatever she going to challenge me on today.

These are all small moments, I know. I know my typical friends with typical children try to understand when Bridget has to attend whatever they have invited me to. They also understand that when I say I cannot attend. There are days I really wish that Bridget was the typical 16-year-old, that my husband and I could escape for a weekend to remember why we’ve been together almost 30 years. That I didn’t have to bow out of invites or have my sidekick with me.

Thankfully those moments don’t happen too often. Because after I take the long way home, this beautiful girl is waiting for me on the front porch.

And that makes every accomodation for her worth it.

Ten Things of Thankful

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There has been a lot going wrong in our lives this year, but there is so much more going on to be thankful for this week.

  1. That Bridget has a team of Doctors that care about her as a person and are not treating a disease but how that disease impacts every aspect of her life.
  2. That I have a job, a boss and a team at work that understands Bridget has to come first and allows me to work not only a flexible schedule but a remote and sometimes from the PACU schedule.
  3. That there are friends I have not kept in contact with or up to date with Bridget’s recent struggles understand that it is a me not them thing.
  4. That Jenn doesn’t need chemo.
  5. That even though I am a people pleaser and it is incredibly difficult for me to say “no” to an invite, I have become more comfortable with answering: I would love to but Bridget is having a really good day so I am going to stick with our plans for the day. And that my friends and family understand that response.
  6. That I have friends that let me ugly cry, but not wallow in self-pity.
  7. That my eldest is living her best life and while I miss her not coming home this summer, this is how it is supposed to be.
  8. That through this really difficult time, when we have to put Bridget first our marriage isn’t perfect, but it has not imploded.
  9. That when I had to remove Bridget from a retirement party, our friends didn’t judge but were compassionate and understanding
  10. That this happened for the first time in months

Keeping Score

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One of the most difficult things I am learning in this time of Bridget’s life is discerning what is behavioral versus what aspects of this newest disease is a mental health issue. Looking back (because it is always easier to see what I did wrong than to predict future mistakes), Catatonia began infiltrating our lives last summer.

As with all things Bridget-itis, the small things I either missed or decided were not important or they were becoming a part of her quirky and cute nature. What I thought was behaviors over time became the tools Catatonia used to try to keep my girl in her head and take her out of our world.

Read more: Keeping Score

Bridget started refusing to leave the house. Going to the grocery store (one of her favorite places) became a negotiation if there wasn’t someone to stay in the car with her. Thinking it was behavioral, I made her push through when there was no other option. I didn’t realize she was having anxiety, and it was mentally painful for her to walk through those doors. Score 1 to Catatonia.

Bridget started talking only to me at home. I thought (at first) it was funny that she would “hide” her face from her dad and whisper to me the answer to whatever he was asking. Instead of being a new behavior, she was having mental anxiety that led to select mutism. Score 2 to Catatonia.

Bridget, while camping, refused to come to the campfire. Spent most of her time not only in the camper, but in her bunk. Bad mom moment, I kind of enjoyed the peace and quiet of camping, reading my book by the fire not having to listen to freaking Doc McStuffins on repeat. Instead, Bridget was showing the first signs of depression. Score 3 to Catatonia.

I asked the Doctor about all of these new diagnoses. If developmentally, Bridget’s brain is 4 years old, what the freak does she have to be depressed or anxious about? Okay, honestly there was a different “f” word in there.

Instead of reprimanding my use of adult language (perks of talking to her psychologist, they’re probably used to much worse), he gently explained that while Bridget’s mind might be 4 years-old, her body is not. Not only is her brain continuing to adapt and fight PACS1, but it is also having to deal with all the other hormonal, body and insert your teenage angst issue here concerns. Since her brain does not know how to deal with all that onslaught, it retreated into a state of catatonia.

Taking a minute here to remind all of you that I am not a doctor and may have misunderstood or misinterpreted all the information the Doctors have thrown at us over the past 4 months. If you have any of these issues or concerns, don’t trust me. Seek medical advice from a medical professional.

Carrying on after that short PSA. The Doctor tried to explain to me that with catatonia, depression, anxiety, select mutism and PACS1 (plus every other diagnosis Bridget has) what I am / have been afraid were behaviors I needed to help her correct, where actual mental health issues that we need to treat.

I asked how to I make sure that I don’t inadvertently create a behavior during this time?

I totally stumped the medical team with that one!

Here is the dilemma, the medical team is treating Bridget the patient. They are treating all the symptoms associated with her new diseases. They are also trying to be caring and cognizant of how her illnesses now affect our lives. (FYI getting up at 6am every day to give her a med SUCKS in JC CAPS, especially on the weekends). Yet they never thought of what behaviors we might create while treating her medical issues.

For example, what if I let Bridget not participate in grocery shopping now, while she is in crisis. What happens when she is no longer in crisis but has a learned behavior of staying in the car with dad? I guess that is okay, if he is home. But what if he is not and I have to run to the pharmacy?

What happens if we isolate ourselves now, to protect her from all her illnesses but that leads to us never leaving the house? (Self-serving PSA–if I am stuck in this house for more than 3 days, not allowed to leave, send Pinot Grigio).

Thankfully, this new cohort of Doctors listen and care. The advice is that if a behavior is not impacting Bridget’s life (like her increased stimming) then it is not a problem. For me not to sweat the small stuff (they are obviously new to the team). The behaviors that do impact her life (not leaving the house) is something we need to focus on. First with medication, then when she is no longer in this crisis “flight” mode, with therapy and baby steps.

And we have begun seeing small wins. Last weekend, Bridget walked to the beach. Score 1 to Bridget.

Today she got off the van very upset because her favorite teacher was not in school today. She verbalized it, and let me hold her until the tears were dry. Score 2 to Bridget

Keeping score, right now catatonia is up 3-2.

I know with time Bridget is going to kick catatonia’s ass. I am just going to have to be vigilant that once she does, there is not another behavior she has to overcome.

If I was a betting person, I would bet on my girl. She has never let me down before.

The Difference Between a Doctor and a doctor

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Bridget has outlasted most physicians, therapists and teachers in her short life. With her most recent health struggles, I have begun to observe there is a difference between a Doctor and a doctor.

A doctor sees the diagnosis. A doctor treats the disease, not the patient. A doctor is on a schedule, barely knows your history and rushes through your appointment to the next patient.

Bridget has had a few of those. I call them the “Harvard Docs” who think their degree trumps her will or my momma-warrior gut. The ones that do not take the time to even look at her medical history or when they do they stop at a few years. They treat the body part they specialize in, not the whole child.

There was that one doctor who I will never forgive, who told us Bridget would never.

There is that one neurosurgeon who I had to remind without patients like Bridget, he would not be able to afford that ski vacation depicted in the photos all over his office so he could give me a freaking minute to digest the fact that my 3yo (at the time) would need spinal surgery after just learning to freaking walk. (Okay, 13 years later I should probably let that one go!)

Then there are the Doctors and Nurse Practitioners.

The Doctor/NP truly cares about the patient. Not that they are facing a disease, but how that disease impacts their entire quality of life. The Doctor/NP tells this mom that Bridget has fought too hard to walk, talk and be a part of her community to let PACS1 and catatonia take that from her. The Doctor/NP doesn’t look at behavior and judge your child (or your parenting skills) but does truly investigative work to find out what changes are happening and why.

With Bridget’s most recent diagnosis, I was already overwhelmed and worried does not fully capture the roller coaster of emotions. She now has three new doctors, and this is how I came to realize the true difference.

The new Doctor answers emails within 15 minutes of me sending them, even if it is at 8pm. The new Doctor calls to “check in”. He emails me and will say “our next appointment isn’t for a week, but remember to contact me if you need me before then” or “how did Bridget’s spinal tap go today? Did she have any anxiety going back to the hospital?”

Bridget’s primary-NP sat with us for over 45 minutes to strategize how to help our family through her struggles. She questioned why we did not have a complex care nurse from her practice in contact with us, and the next day arranged a phone call to see what additional support they could help arrange for Bridget. She admits that she does not know enough about this newest diagnosis but starts researching it to be a resource for us.

Bridget’s Doctor of all Doctors, her neurologist never disregarded my concerns, found time in her schedule to see Bridget with just a few days’ notice (anyone who has tried to schedule a Children’s Hospital follow-up knows that you are lucky to get back in within six months. So, to be seen within 3 days is a freaking miracle. Then during her inpatient admission, found us in the MRI suite to make sure we were doing okay. Then this Doctor attends one of Bridget’s appointments with the new specialist to provide not only her insight but her institutional knowledge of all things Bridget. She works with this new team, without ego or compensation.

The Anesthesiologist who never gets repeat patients, remembered Bridget from her Achillies tendon surgery a few years back, then her MRI last month. Last week when Bridget returned for a spinal tap, this Doctor remembered Bridget and that she gets upset as they wheel her out of the pre-op pr post op when they wake her without me. This Doctor not only made sure to talk to Bridget (like a person!) but then turned to her assistant and explained that Bridget needed help to relax before leaving me and what she would need when they begin to wake her.

Then I think back to when Bridget was only 3 years old and her GI Doctor happened to be at a conference and whatever session she was attending made her think of Bridget. We were not scheduled to see her for another 4 months, but she called and told me about this new idea that constipation could be caused by a tethered spinal cord. Thanks to her due diligence, Bridget’s cord issue was found early and not years later when significant damage would have been done.

What I have found, especially after the past few months, is that this world needs more Doctors/NPs and not just doctors who have let the healthcare system change them from idealists to paperwork-driven/cover-my-ass so insurance companies pay driven.

Bridget has been beyond lucky to Doctors and Nurse Practitioners that truly care for her as a person. This team of Specialists that but the person first, the diagnosis second are truly special. They look at the whole child, not the body part they specialize in.

Thankfully these Doctors/NPs outnumber those that have lost the reason why they entered this profession.

If I could ever attend an M&M rounds/Physician seminar this is what I would like to impart:

There are days that work sucks. You are understaffed. You are beholden to the Insurance companies and healthcare system that have monetized your profession. Instead of treating patients, you are working to justify their treatment to someone without your knowledge, education or experience. You are dealing with sick patients and family members that are probably overwhelmed and financially strained. You are working with a class of people at their lowest and most vulnerable times.

You have a choice, heal with compassion or treat with your medical degree.

They both pay the same, but only one will reward you.

For every bad day

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After my vent-post the other day, I received so much compassion that is simply overwhelming. As I said to one friend, I am a much better caregiver than caretaker. One person did reply (sweetly) that Bridget and I make this life seem easy. Not in the way people who have perfect Facebook/social media lives, but you know their real life is a hot mess.

In our case, whether you see us online or in the supermarket, we live Bridget’s life out loud. The good, the fun, the ugly cry moments and the ones that bring me to my knees.

The reason I am so open, is that if I can make one parent (or sibling) feel like they are not the only one living this life, that there is one person on this Earth that might not exactly what they are going through, I do know that feeling of what the actual fuck! I know how it feels that we cannot seem to have a “quiet day” but maybe not exactly what brought you to that moment.

We are also so very lucky. For every single bad day (or moment or month) we have 50 really great ones.

This past weekend was full of those little great moments that make it easier to get through the really tough days. I know they are little moments, and the bad moments have felt insurmountable lately. But for me, these moments allow me to remember the girl who would never…

After months of trial, we got to the beach!

….walked two miles this weekend and got to the beach. She could not stay but look how close she got to the water!

Then to make life a little sweeter, our girl managed to go to the grocery store (another win this month) and made the cake that she had purchased.

Everything is better with cake

And that, my friends, is how I keep the light in our lives. How as hard as this life can be; by celebrating these little wins, it makes the battles easier to fight.

My advice is to keep enjoying those little moments in your life, my fellow warrior parents. Celebrate them. Because if you do, I swear it will make the moments when you are in your driveway screaming at the trees how pissed off you are at this unfair life you’ve been given happen a little less often.

And for the times that you need more than good memories, I recommend calling a really good friend and sharing a glass of the adult beverage of your choice as they listen to how much you love your child but kind of wish there was a warranty given in the delivery room.