Monthly Archives: November 2025

One hour

There are 24 hours in a day, I recently did some math and realized that I am awake for 18 of those hours. Doing a quick debrief of a recent workday, I realized that I spend about 11 hours of that day either commuting to/from work, actually working at the office and then following up at home with employees, customers, answering emails and or phone calls.

During the week, another chunk of my time is spent caring for Bridget. When I deducted the times before and after school, Bridget during the week takes about 5 hours of my time. Not dedicated 5 hours, I am not her 1:1. But during those 5 hours, between getting on/off the van and out of/into bed, Bridget is the priority.

Now a lot of these hours overlap. For example, in the last hour I have showered Bridget, made her dinner, answered 5 texts from work and an “urgent” phone call (that was not that urgent.

Yet even if I said these hours spent between just work and Bridget were concurrent, that still leaves 3 hours left in the day.

And yet I, like many working parents, feel that there is no time left for “me”. We have sold ourselves this bad mantra where we have to be taking care of everyone all the time. We feel guilty sitting on the couch eating bon bons, even though we have already put in a full day and it might only be 4pm.

We parents are up in the middle of the night, when our child cries out. Even if they do not really awaken. Even though Bridget is 16yo, I think the last night I did not awaken (even briefly) to a sound from her bedroom since she was born. This is not because Bridget is not neuro typical. This is something all parents face, especially when they are waiting for their teen to get home and hoping it is before curfew.

I am not someone who has to have the cleanliest house in town. After a long day, I refuse to company clean or even do laundry. But I find other ways to fill that time between Bridget going to bed and getting out of it the next morning.

And not one of those things include self-care.

A friend of mine recently said that anyone can be physically fit, they just have to commit to themselves. They have to put exercise on the schedule on the calendar and make it non-negotiable. It could be a 30-minute walk, a yoga class or a cross-fit hour of torture. The way to success is to make exercise as important as getting your child on the bus every morning. No one, after all, wants to get up and go to the bus stop at the ass-crack of dawn, making sure their child goes to school. In this example, if you want to become more active and fit, make it as important as getting your child to school.

It does not have to be exercise; it could be setting a goal of learning a musical instrument or learning to play chess.

My friend’s point was this: find something that engages you and make it a commitment.

This conversation got me thinking, because of course I immediately thought I don’t have time to do (insert whatever I am avoiding here). There is no time left in my day! I then had that rare moment of self-awareness, where I realized it is just as easy to make an excuse as it is to make a commitment.

Thinking back, I have made the effort and commitment to things that mattered. For example, being an elected member of our local school committee. The schools were important to me, so I found the time to commit. I considered it a second, albeit unpaid, job. I put the time in and was rewarded personally, when I saw this work mattered not just to me but to those I served.

So why am I not putting the time into me?

I think this is something every parent suffers from. We have this feeling that we are selfish, or that the children matter or our spouse needs us to do something important or work is calling. It is not purposeful, it is just we blinked and not only has the day gone by, but it was just March yesterday and now we are having people for Thanksgiving. Where did summer go? The days pass by so quickly, we forget those minutes and hours that are lost if we don’t pay attention.

I have decided to build on this idea that by finding one hour a day to keep my mind and body active, it will become easier to maintain the commitment. It will just become a part of my day. Just as putting Bridget on the van every morning is a part of the routine.

I also know that this hour does not have to be a full hour dedicated to Kerri. It can be in 15-minute increments. As simple as taking a 15-minute walk in the morning and repeating it at night. Some days it might be a full hour of writing, to keep my mind engaged and my pessimism in check. Just as every hour is really multi-tasking, a hybrid between work, Bridget, household chores and being a wife, this “hour” I am carving out for myself will not be etched in stone, but fluid. Until I create the routine I so desperately need.

Today was day one. I carved one hour of my 18 hours to give, to walk and write.

I did not blink and lose an hour, I found one.

And I promise, to myself, to find another hour tomorrow.

Ten Things

Have you ever had a week that was full of Mondays? As in no matter what you did, each day was either Groundhog Day or the longest hour of your life. Then when you talk to someone, it turns out it isn’t just you but something in the universe?

Last week was one of those weeks, that no matter what I did it was a Monday from hell.

And this is why it is so important, to me, that I find the silver lining in each week. In my case, 10 of them.

That last weekend I decided my house was kind of depressing, I haven’t been taking care of it as I should. Purged both girls rooms and found this hiding in the back of my eldest’s desk.

That my eldest refuses to read my blog, so she will have no idea that I posted this drawing from when she was in kindergarten!

That Bridget’s doctor listened to my worries that Catatonia is making a comeback. We did not change the meds, but he scheduled a follow up appointment so we can assess if we need to go back up on the med, I’ve been trying to wean her off. That if we do have to go higher on the dose, I know it isn’t a failure but a remedy.

That when I got hacked on my Facebook account, I was able to recover it but not my blog page. While devasting to lose those memories, I have this website that I can go back to whenever I need to remember the good times and how far Bridget has come in her life.

That losing the Blog Facebook page, means I have an excuse to look at older blog posts and repost them on social media.

That my 93yo mother-in-law made it back to bingo this week. And won, again.

That when I posted a poor-me post, which probably led to the Facebook hack, I got to read the support and care from those who do read (unlike that eldest child) my writings and never mind holding me up when I fall down.

That my BFF since we were 12yo is visiting this weekend. That she understands why I cannot visit her, and even though she is exhausted she doesn’t mind traveling to see me.

That while at the grocery store I ran into a friend I haven’t seen in forever. And while we may have caused a backup in aisle 7 as we caught up, we got more smiles from passing shoppers as they saw us reconnecting and not caring if anyone overheard our conversation.

That this week of Monday’s is over and next week is a short week!

The rules keep changing

When your child is diagnosed for the first 5 years of their life with “we know there is something genetically wrong, but not what.” Then you finally get a diagnosis, and you are told it is a genetic disease so rare they don’t know what PACS1 is, but she has it! You learn that parents are your best go-to for information.

Even before Bridget was diagnosed, her therapies were trial and error. I found more information from sharing with other parents in the waiting room what worked for their child and what might benefit my own.

Bridget does not age out of the school system, but already I am learning that I need to be aware of how things change, even before I am ready. For example, we were always that a child of Children’s Hospital is always a patient there. Yet across the country that is changing.

I never imaged that she would age out of her healthcare system.

Which makes sense when I think logically about it. A pediatric cardiologist knows the pediatric heart. They are not trained in the heart conditions and complications of a 40-year-old. This is devastating to the parent who has been cocooned in the bubble wrap of a children’s hospital where their child has been a patient since the NICU. While the adult physician might be the best to diagnose and treat her non-pediatric body, that doctor has no idea how to interact with her 4-year-old mind. This has proven true any time I have taken Bridget to a local doctor, be it an optometrist or an emergency room doctor and nurse.

The adult provider is just not trained in the pediatric mind. Just as the pediatric gastroenterologist is not trained in the adult digestive system.

Even the waiting rooms are not equipped to treat children soon to be adults like Bridget. For example, last month we were in the waiting room at Children’s Hospital. Bridget was having a VERY difficult time. She was in full meltdown mode. Hitting me, while alternatively hugging me. Crying and sobbing after spending almost 4 hours in traffic trying to get to a 15-minute appointment with her favorite GI.

Bridget after 3.5 hours in Boston Traffic

The team at Children’s did not embarrass us, they did not judge us. Instead, they quietly approached and said, “Bridget’s mom, we opened up an exam room for you. We can do her vitals in a quiet space for her to wait for Dr. Rosen”.

Over the summer, when Bridget was adjusting to the catatonia medications, there was an issue obtaining her Ativan. The pharmacy told me “She could not miss the medication without serious complications”. Told me to go to our local ER and explain the medication need. Bridget was having such a difficult time anyway, now we were entering a crowded ER with a triage nurse that was all done with her day. Instead of seeing a child in crisis, she saw a 16-year-old out of control and basically told us they could not help.

There was no empathy (yes, I lodged a complaint with the hospital). There was no understanding that this is not just a teenager who was abusing her mom but was having a serious medical issue that her 4-year-old brain could not understand.

On a less serious note, about 3 years ago we took Bridget to a local ophthalmologist for a routine eye exam. The waiting room was fine. The exam room? Not so much. The doctor is great with teens; we had taken Bridget’s older sister to this same doctor.

But the doctor, while trained on the eyes has never encountered a child with Bridget’s profile before.

Quite simply, adult doctors have not been trained or exposed to those with intellectual disabilities (to my knowledge and recent experiences).

Whereas those of us lucky enough to have been cared for by Boston Children’s Hospital have been spoiled. We have had doctors since birth, or in the most recent case of Bridget’s latest PACS1 complication treated by physicians, nurse practitioners, fellows, lab techs, nurses and even cafeteria workers who look at our children as persons in need of empathy and care.

From janitors to doctors, we have been treated humanely.

I think I speak for all parents whose children have intellectual disabilities and complex care issues that we are terrified of this relatively new change in our children’s healthcare.

This is not simply leaving a pediatrician for an adult primary care provider.

This is leaving home and ending up in a country where no one speaks your language.

Thankfully we have 5 more years, but as every doctor Bridget has seen this fall has already started the conversation about transitioning to adult care, I am not confident that we have those 5 years.

As I talk with parents around the country, I know this is not just happening in Boston but nationwide.

And that is frightening for all of us

From one week old to 16 years old, Children’s has been our safe place, my hope is that in the next 5 years, whomever started this trend realizes the impact on our families and truly designs a plan for our families.

The struggle is real…. Possible tissue warning ahead

I’ve been so focused on all the signs I have missed when catatonia slowly took over Bridget’s life and then battling it to get my girl back to where she was a year ago, I did not recognize the signs that catatonia was taking over my life as well.

Or maybe it is menopausal madness.

Maybe it is both?

Maybe it is that I am just tired of battling PACS1. Every time I think I have a handle on this life, every 12 to 18m BAM another diagnosis is obtained by Bridget. And while this is difficult to admit, some days I get tired of fighting.

It would be easier, honestly, just to let PACS1 take over. Let Bridget retreat into her own world, instead of battling this fucking disease that never stops trying to take my girl from me. It is also difficult to realize that Bridget is happy, in that world I cannot reach. Who am I to keep battling her to join mine?

Then there are moments like this…. where I know she wants to be with me, in the real world. As she snuggles on the couch (yes, with her IPad) and make sure that not only is she as close as humanly possible to me but makes sure that I am under the blanket with her.

It is these little moments, that I know the fight against PACS1 is worth it.

But over the past year, as I made inadvertent concessions as catatonia slowly took over my girl’s heart and brain, I was losing myself. I started to not make Bridget go out into the world, because she was so unhappy. I started not talking on speaker phone with her sister, because it was too difficult for Bridget to hear her voice but have her not be home. I stopped going for walks, because I was afraid to leave her alone for even 15 minutes. I stopped cooking healthy meals because she was happier eating plain pasta and if her dad wasn’t home popcorn for dinner is just vegetables and dairy so that counts, right? And wine is grapes so that is like an extra helping of fruit. (Kidding! Okay kind of true)

Unknowingly, for the first time PACS1 started affecting my mental and physical health.

I stopped checking in on friends, which again I know I don’t have to, but my happy place is caring for others. I have this friend that literally email and/or text multiple times a day. I stopped doing that because I felt like I was too needy and she had a lot going on in her life. I felt like I was taking advantage of her, and others, by always being in distress. Another friend group chat, I stopped posting and only responded. I pulled away from important support systems. Isolating myself because I hated that I could not get off the pity party.

Yet I know, those who know me are screaming at the screen right now that I am an idiot. That they want to be there for me, and I am not the needy friend.

But I’m tired of crying. I am tired. I am tired of having to struggle to find 10 things to remind me that my life is awesome. That I know how important to find those 10 things, so I remain invested in this life, yet I let that slide.

Then I think back, and I realize it isn’t just this past year that I have let myself go. That I haven’t been there for others as much as I should. That I have been selfish and wallowing. It was not any one thing, but a culmination of fighting for 16 years to make sure that Bridget did not just survive but thrive.

Every parent does this. Even if your child is Facebook life perfect, you have fought for them to be perceived this way. You have put your child first, always. You have supported them financially, socially and with love.

I know that my life with Bridget is no different than yours. So why am I struggling so much?

Is it that I am almost 55-years old and wondering how much more fight I have in me? Knowing that this is a rhetorical question, because I will fight one week longer than Bridget lives.

Is it menopausal madness? Like the fact that my husband makes so much freaking noise, even when he sleeps! Is my threshold lower dealing with Bridget’s ongoing issues because my hormones are all done?

Or do I just need to do what I do best and create a plan of action to get out of this seemingly never ending funk?

Spoiler alert…. I’m going with a plan of action.

I know I need to be as dedicated to myself as I am to Bridget (and yes, her dad and sister).

I just need to reset my priorities and make sure that I make sure I put myself on the list of things to take care of.

Ten Things

Time goes by so quickly, it has been a few weeks since I took a moment to pause and remember with all the craziness going on in my life it is important to remember all the good that has happened that balances out the feelings of my life is a dumpster fire.

Bridget loved her cheerleading season, that capped off with an exhibition at Gillette Stadium with the Patriots Cheerleaders. She not only picked the song her team danced to but insisted on doing the “Lift”.

Taking some “me” time and doing some much overdue self-care

That at work we have successfully opened a second location, expanding my role in a way that keeps me not only challenged but fulfilled

That a friend who spent a year in NYC, came home and we were able to have snacks for dinner for the first time in over a year.

That Bridget went bowling with a friend and while she has the funniest and slowest technique it doesn’t matter how the ball gets down the lane, we are just thankful for the gutter guards

That there were more smiles than tears this week

That when doing a deep clean in preparation for holiday visitors, I found little pieces of my eldest and her imagination that I had forgotten about. And the amazement that even though she has been away at college for over 3 years, I am still finding the hiding places of her “treasures”.

That while I was completely unsuccessful in recreating Wing Dings from Bobby Byrnes Pub, I didn’t poison us. While they were not wing dings, they were still edible, and the onion rings came out fantastic!

That I recognized that I am in a rut, personally, may have some menopausal madness going on and have started to strategize how to get me back to where I was a year ago. I have realized that Bridget’s latest health trauma has impacted me in a way the previous one had not. I could blame that menopausal madness, but those who know me know I don’t like a pity party or to shift blame. It is up to me to put myself back together. It will take some growth, some accountability and most of all my village. Thank you for not letting me slide, for not letting me fail and for never giving up on me.

    And that is what I am most thankful for, the friendships new and old that continue to be the reason I survive this unexpected life.

    A little self-care goes a long way

    I am horrible at self-care.

    With my eldest away at college, I am very aware of how much I took advantage of her being here. Wait, that sounds bad. I did not really take advantage, more I was spoiled by her willingness to hang out with Bridget while I went for a walk, a night out or even just running to the grocery store without Bridget tagging along.

    I am extraordinarily lucky that while my friend’s children are grown and have either left the nest or are fully independent, my friends understand that 99% of the time, if they see me that I will have Bridget with me.

    I am also lucky that while her dad is as joined at my hip as Bridget is, he does get that once in a while I need a mommy-time-out.

    It is my own fault that I have self-isolated…which brings me to how I have also neglected my own self-care. Not just by putting family and work first. Not by not prioritizing myself. But I think I might have had a little (gasp) depression over the past year. Those who know me, know I just threw up in my mouth a little bit by not only writing it out but acknowledging I may not always be able to pick myself up by my big girl panties and suck it the fuck up.

    If not depressed, I definitely allowed myself to get “old” over the past year. I’ve gained weight. I am not maintaining my nutrition and balancing the snacks like a 50+ woman should. Instead, I am acting still maintaining the diet of my 16-year-old self with access to my parent’s liquor cabinet! I have not truly exercised (other than walks that become shorter and shorter) this past year. Me, the woman in her 40’s that was running obstacle races probably could not jump rope in her 50’s.

    Somewhere along the way, I decided my gray hair was fine. That it was natural. After all, I haven’t worn makeup since it was forced upon me at my wedding 29 years ago. I have historically been a woman that is low maintenance, just some wet hair and some hair gel and I am ready to go. I even started cutting my own hair over the last year (something those of us with curls can get away with!).

    Then I saw this photo of me.

    Holy crap, I got old.

    And not in a graceful, Betty White way.

    So the other night, I took some time for some long overdue self-care. I went to an adult salon, not a chain.

    Thankfully the stylist not only took mercy on me but guided me away from looking like Elvira and inadvertently signing up to a hair commitment I could never keep. Three hours later I went from this to that.

    Photo courtesy of Michelle @ Color Me Crazy Hair Salon

    Thank you, Michelle at Color Me Crazy for rejuvenating this tired, overworked special needs mom. It was just what I needed.

    The same…yet so different

    We are at a strange time. A time when most of Bridget’s typical peers are doing typical things. It is some days difficult to see my friend’s social media posts about their children, balanced by how happy I am for their child’s accomplishments.

    Homecoming, for instance. My friend’s daughters are gearing up for homecoming, with dress decisions, boy decisions, deciding what events to go to. Bridget’s homecoming was a walk around her school and a bounce house. There might be a homecoming dance, but she will not get asked by a boy. She will not drive with friends or be dropped off by a parent. My friend’s daughters will get dressed and do their glam together. There will be laughter and oh my gosh moments. A typical father will wrestle with his little girl in a too short dress going to an unsupervised dance with a boy he thinks he could probably still arm wrestle, but not for much longer. A special needs father will dance with his daughter and make sure no one asks his little girl to dance.

    The typical parent and the special needs parent will repeat this process in the Spring during Prom season.

    The same, homecoming. But yet so different.

    In our area, in Junior High students can begin making choices for where they will spend their high school years. This is usually when a special needs parent makes the most difficult choice between inclusion or a dedicated special needs school. For the typical student there is a process. Do they meet X criteria? Did they win the lottery for the most desired school in the district? For the special needs student it is a similar, but more convoluted process. First, unlike the typical student who can do school choice the special needs child needs permission to even begin looking at alternatives. Once the district is in agreement, the district not the parent has the ultimate decision on where this child will attend school. The schools that are dedicated to special needs also have criteria before even interviewing the student. They look at medical records (are they too fragile?). They look at IEP accommodations and how independent they are. They look at academic testing and IQ results. Yes, believe it or not in the special needs school there are IQ thresholds that may determine where this child can even apply. Each parent, the special needs one and the typical one will go through moments of heart-crushing disappointment and hope to have that moment of YES this is where my child will succeed.

    Then the process is repeated, for the typical parent at graduation and the special needs parent when their child ages out of the school system the day before their 22nd birthday.

    The same, yet different.

    The typical teenager will get their first job. The special needs teen will work vocationally within their school day.

    The typical teenager will play school sports. The special needs teen will participate in Special Olympics.

    The same, yet different.

    From there, as these teens age, the difference between that typical child and special needs child becomes greater.

    The typical child will get their driver’s license. The special needs child will ride in the front seat.

    The typical child will go into the workforce, the military or higher education. The special needs child will remain in their high school building.

    The typical child leaves the nest. The special needs child will not.

    Both children will be celebrated for their success and supported in their missteps.

    The same, but just in different ways.