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

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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.

The sweet without the bitter

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When my eldest graduated and went to college, it did not bother me. This was what she was supposed to do. I didn’t compare it to Bridget. I never thought, oh her sister will never. I do that more with Bridget’s peers. The ones that she left behind when I decided to pull her from public school. When I see the postings of her former friends getting their licenses, going to homecoming or prom I will be happy for them, but also think if I did not make the decision to put Bridget in a segregated school, she would have been included. I am sure next year, when her peers are going to senior prom, college tours and graduating, this weekend will hit harder. I am sure there will be moments that I wonder…if only. If only I had left her public school. If only she was typical. If only…

There have been moments, where I have done that with my own girls. It is a little different because of the age difference. If they were closer in age (or Bridget was older) those moments of if only might have been more frequent. With my eldest, I’ve tried really hard not to compare their lives. First, it is unfair to Abbey. I never wanted Abbey to feel like she should not because her sister could not. Second, I am human. So of course there were moments when I thought why won’t you play guitar, don’t get your sister will never? Honestly, I tried but I was not always successful at stopping those wayward thoughts of being sad that one child could and another child would not.

Then high school graduation and college came into our lives.

Everything changed again. But it didn’t hurt. It was complicated. Suddenly my nanny was gone. We had to learn how to live our lives without the added support. We thought how lucky we were that we had that time of being able to escape at a minute’s notice because the sisters were together. We began doing trips as a trio not a quad. We began to see what our lives would be for the rest of our lives. Where we are parents to both a fully functioning adult and a forever preschooler. As the college years went by, less summers were spent at home. As it should be, as any typical college kid would do. Their world expands, while ours stayed constant.

The one thing I worried about, the day we left Abbey at the dorm and drove away was would their bond remain? The girls had been devoted to one another since the moment Abbey visited Bridget in the hospital.

I worried what would happen to their relationship. Bridget refuses to talk on the phone or FaceTime. Would her sister be able to understand her language if she was not constantly exposed? Would Abbey sense a freedom that life without a disabled sibling gives you? Would she begin to put distance between them, not because she did not love her sister but because the world is a very big place and she was just beginning to explore it.

Of course, I should have known better. The minute the girls are in the same space, they are just as attached as they were back in the NICU. Abbey has always known that one day her sister will be her full responsibility. She understands that her life will change (again) once that happens. She did not leave Bridget behind. She is living her best life (as she should) balanced with the love of her sister that is her priority, no matter where in the world she happens to be visiting.

It is quite sweet, watching the girls today and seeing how their love has grown yet remain steadfast all these years. There is no bitterness that one child is living their best life and the other is not. The truth is both girls are living the lives they were meant to live.

The life of two sisters who most would think were on different paths, but instead are living their best lives together even when they are not in the same room.

The moment you hear “I hate you”

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I’m not sure if this happens with sons, but when you have a teenage girl at one point in their life you will hear the dreaded phrase “I hate you”.

What I never expected with Bridget was to hear those words. First, because I truly don’t think that she understands hates. Second, she cannot articulate the most basic emotions that she feels.

Yet it hurts

Today was a great day, until it wasn’t

All she wanted for dinner was beans, (FYI B&M Black Beans) until they were cooked and then were too “cold” except they were actually too hot. That turned into her hitting her head on any hard surface (including my shoulder) and words I did not know she knew

And then I thought about my oldest. How there were moments during her teen years age years where I totally loved her but at times did not love her.

And I am sure there were times my eldest loved me but thought I was the stupidest person on earth.

This year has been difficult for Bridget, and us as parents. There is a medication regimen that we are terrified she will not adhere to if it is not

us administering. While we have never had a routine, full disclosure, as awesome as her dad is, if I am not here at night she sobs for hours until I tuck her in.

Quite frankly, we are balancing not creating behaviors with creating an environment where Bridget thrives.

It is a delicate balance. Catatonia continues to keep us humble at the same time it keeps us alert.

To the friends that have offered us respite, know it is a Bridget issue and not a you issue.

We, as a family are doing the best we can

At the moment she is doing incredibly well at school and saving her meltdowns for me, her safe plan to land

And we are okay with that, because we know that this is hard….but not as hard as waiting for her to roll over

Because last week instead of being on her IPad she drew circles and was happy

and I am balancing let her be happy in her world while figuring out how to keep her in mine

So when she says I hate you, I hope she feels the love I feel for her

Ten Things

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What I like most about the Thanksgiving and Holiday season, is that so many of us take a moment to realize how lucky we are, even if we are not having the best of days (or hours). For example:

Being able to send a WTF SHOOT ME NOW text and have a friend respond: Do you need bail money, help hiding the body or just a wine drop off?

Having a house full of company for the Thanksgiving holiday. Yes, it was chaos. Yes, there was a lot of food, laughs and dog hair every freaking where. And my MIL kicking my ass in cribbage, again.

During the Thanksgiving, having my nephew and niece stay with us. That they let me be Kerri the Great to their toddler. This little child who is so typical it does my heart good to be a witness. This is going to sound weird, but it no longer hurts to see a little child who takes for granted how easy it is for them to run, eat and climb. Rather, it makes my hurt burst with pride at how wonderful parents my nephew and niece are. Their toddler has totally stolen my heart, in all the best ways.

Not only can I message my other nephew, who is serving overseas, but he can message me back within minutes. He (like my eldest) has no respect for the time difference, texting me at 2am my time without even realizing it. I am so thankful he does, that even though he has been serving our Country for the entirety of his adult life, and been not local for 100% of it, the connect has not faded but rather grown.

I am so thankful to have this friend, who honestly rebuilt her life from the ashes and is now paying it forward. On Instagram @LisaRisesStrong she is putting herself out there, trying to help others live their best lives. That I have been able to be a witness to her growth and can now share her with the world to showcase how awesome she is something I am so thankful.

It now officially Christmas music season. And that Pandora exists so I can make a playlist of my favorites and more that Bridget seems to know the difference between Christmas music and all other genres.

There is no Elf in my house.

I think we have found the right mix of medications to keep the catatonia at bay and bring Bridget back. During the holidays, the company did notice she was still reserved and not quite as social. However, they noticed a huge improvement from the summer. Thursday when she got off her school van, she actually chatted with the van driver. That is a bigger deal than some of you may realize. She also chatted with a stranger at Market Basket. Okay she was trying to once again explain to a random shopper why they needed the PINK pop tarts. But she engaged and talked to someone that is not me.

That Amazon exists. Okay, I know they are horrible for local small businesses. But having one child in the frozen Tundra, one nephew overseas and countless friends around the world, it is so very helpful to do one stop shopping and shipping.

Last but not least, I am thankful for when there are those times I have to work from home on a weekend, this is my office.

One hour

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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

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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

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    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.

    Ten Things

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    This has been a better week than most. Maybe because I had a long weekend away that was not only made my work week shorter but allowed me to step away from the WIFI and cell phone. And there are at least 10 other things that I am thankful for this week:

    1. Laughing at a picnic table, in 40-degree weather, declaring that guys don’t want to f*ck skunks (if you know you know) among other discussion absurdities at almost 1am. And not apologizing to our other camper friends for keeping them up with our giggles. Instead saying; you should have joined us if you were awake 🙂
    2. Enjoying a bottle of wine (each) in a friend’s camper as we remembered friends lost too soon and deciding that if we were just left in charge of the world, life would be perfect.
    3. That last night after having to leave a retirement party 4.2 minutes after I got there because Bridget was triggered by some unknown something, today I spent almost 3 hours at a Dunkin’ with her as I caught up with another non-typical mom. We laughed; we cried and created a stronger bond with an ally in this unexpected and unasked for life.
    4. That I have a boss that not only encouraged me to take the extra-long weekend, even though I’ve had so many days off this year because in his words: Those were for medical appointments, this is for you.
    5. That a friend called me out for “losing hope” and reminded me that I am not losing hope but reimaging Bridget’s future.
    6. That I spent 2 hours talking on the phone with my PACS1 friend from Australia. What was supposed to be a quick chat turned into a really informative conversation and an agreement that we cannot let another year go by without another one.
    7. That when I text a friend that I haven’t corresponded with in ages asking if she was up for a bit of “snark”, she not only said “hell yes” but then texted me throughout the night as we caught up on one another’s lives.
    8. That #6 & #7 reminded me that I have not done a great job of keeping informed about what has been going on in my friends lives. That this reminded me that I cannot self-isolate but be there for others. And more importantly, that even though times goes by too quickly that does not mean too much time has gone by to reach out to what could be a lost friendship, and instead recenter myself on why these connections are not just a band aid but a vital part of my life.
    9. That Bridget’s latest medication regimen seems to be working. She is having more laughter and less tears in her day. Yes, she is stimming all the time, and we are not back to baseline (yet) but my girls is slowly coming back to me.
    10. That while I mourn the loss of summer, I am so enjoying moments like this.

    Ignore my attempt at trying to keep basil alive HAHAHAHA

    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?