Tag Archives: friendship

The event that matters most

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In 2025 we attended one too many celebrations of lives. With my mother-in-law’s birthday on the horizon, I wondered why do we wait until a person has passed to celebrate their impact? I had this idea to celebrate a life well lived, while she is still with us.

Full disclosure, my mother-in-law is healthier and more independent than most 70-year-olds. She lives mostly-independently, will walk a mile to Bingo if her ride cancels and she “doesn’t want to bother” her boys. Make sure you have made yourself right with your maker if you dare to sit in her bingo seat! She attends mahjong at the senior center, frequently kicks my ass a cribbage and while she has had a few health issues this year, at 94-years-young she is still living her best life.

We wanted to celebrate that life, while she was here to enjoy it. A few weeks ago, we held a surprise party (I know, throwing a “surprise” party might be ill-advised) that was attended by almost 70 of her fans from 2 years-old to 80-something. Those who could not attend, called and sent well wishes. She was beyond happy and could not believe “all the young people” who came to see her for her birthday.

At the end of her evening, as we sat around my kitchen with the last few family members and friends that are family, I asked what the most significant event witnessed in all of her years.

This woman was born just after the depression, was witness to WW2, The Korean War, Vietnam Conflict and the multiple wars in the Middle East. She was here for Pearl Harbor and 9/11, both tragedies.

In addition to hardships, my mother-in-law was witness to extreme technological advances. Most of which children of today take for granted. For example, not just having a telephone in your home but in your hand. The same for TV and computers. The invention of the microwave and a man walking on the moon.

She was here for desegregation, the polio vaccine, the creation of Earth Day and the fall of Communisim.

I truly was expecting her to say the invention of the Bingo Hall to be the most significant. Or meeting the man of her dreams. In all seriousness, I expected her to recall some historical nugget.

Instead, her answer was both simple and eloquent:

“When I was 10 years old I was adopted and that is the day I remember the most”

Most of us present knew she was adopted, her family history is something well known in the family and frequently spoken about.

What resonated with me, was that in 94 years her most significant event came down to family.

I have written frequently about my village. How thankful I am for their support of myself and Bridget. I know this life would be so much more difficult if it wasn’t for all of you who read my words, who meet me for a walk (or glass of wine).

Bridget would not have a diagnosis without all of you.

When I think back to Bridget’s 17-years, I am in marvel of the scientific advances that have occurred just in her lifetime. It took her almost 6 years to be diagnosed with a rare genetic syndrome. Twelve years later, children are diagnosed with PACS1 within months of birth.

Had Bridget been born 94 years ago, she would not have survived. Had she grown up in the 1970’s she would not have been educated. Had she been born in the early 2000’s it would have taken so much longer to be diagnosed. The evolutions in medicine, surgeries, special education and therapies have come so far just in her lifetime and beyond infinity in her grandmother’s lifetime.

My hope is that when I am 94 and someone asks me what the most significant event I was witness to in my lifetime I don’t focus on all Bridget has overcome but rather…

The family we have acquired thanks to her diagnosis.

In the end of our days, yes the advances of medicine, technology and world marvels will be important.

But signficant?

My mother-in-law was so right. The most significant event in our lives, if we are lucky, is the family you decide to make your own. Whether it is the family you are born into (and keep), married into (and keep) and in the very best moments the family you decide to make your own.

If you are very lucky, it will be a mixture of all three.

And for that, I am truly thankful.

The little hits

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I have always admired my PACS1 friends that have twins. I feel like it was easier for me, especially when the girls were younger, to have 5 years between them. When my eldest was out of the princess phase, it never bothered me that Bridget was not entering it. I have always wondered how those with twins, that had a front row seat to the differences within their children coped.

In my case, having five years between my girls has always made it easier. First, I had a built-in nanny (until she abandoned me to be all adult like and got to college HAHA). Second, at any age, I could reason with the eldest. No, I cannot do X because I am dealing with Y. Thankfully my eldest was never jealous but instead had tremendous empathy for her sister.

Then last weekend I was cleaning out the girls’ rooms. Bridget had not so secretly moved into her sister’s room. I decided to make her old room into a true guest room and began organizing her sister’s things. Trying to determine what I wanted to keep for memories, what she might want, what were things to pass on and what was truly trash-worthy.

Then I came across this, and my heart broke a little.

It made me realize that I would never have this with Bridget.

Bridget’s bedroom is just that, a room with a bed in it. A place she sleeps. A place that is not filled with glitter (okay, thank God for that!), dolls or imagination. Bridget has never played; her sister would play independently for hours. Abby had such a vivid imagination, a sense of play and creativity.

Bridget finds joy in other things, mostly Dunkin Donuts, dinner at the 99, strawberry daiquiris and her IPad.

And that is fine, because in each case both of my daughters are happy. Honestly, I love the 99 so that isn’t a hardship.

In moments like these, where I am remembering where Abby was at 12yrs old and how she is now in her 20’s living her very best life that it is so very different than her sister’s will ever be. That she got to not only graduate high school but choose to go to a college so far away that I have to wonder why she chose to leave the sandbar for the iceberg.

There are days where it is so much easier with Bridget, if I am being honest. Unlike with her sister at 16, there is definite teenage odor, but there is no eye roll. My car insurance has not gone up, since Bridget isn’t getting her permit. I won’t have to pay for college or worry about prom night.

But there are days, like when I go down memory lane, that I wish for just a moment that I had to worry about Bridget getting into the college of her choice

17 Things

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Throughout Bridget’s life, while I may not always be Kerri-Sunshine, it has been actually easy to be Bridget’s mom. There have been well documented posts when that has not been the case, but in reality, those moments are blips within her life time.

When I look back over her 17 years, the moments that have brought me to my knees have been far less than the moments that have allowed me to let her live this best life. In honor of Bridget’s 17th birthday, I am sharing the 17 best things about being Bridget’s mom.

On her 17th birthday all she wanted was dinner at the 99 restaurants, with her strawberry daiquiri and Doc McStuffins Cake.

The joy she has working in her school’s greenhouse. Since her dad and I are not green thumbs, nor do we enjoy yard work, we have no idea why she loves this vocational site so much. We are just thankful it exists in her world.

When in the public school, she learned how to ride big yellow school bus with her friends.

Her love of camping and kayaking.

The bond she has with her sister.

She learned to jump and swing.

No matter how many times she has had to go to Children’s for painful procedures, she has always walked in with a smile. Also, that she has stopped pushing the emergency stop buttons in the elevator.

She talks! Sometimes we need context or she needs us to help her translate to someone what she is talking about, but the girl who would never, frequently convinces strangers in Market Basket that they need PINK pop tarts

The girl would never has rolled over and jumped, she swims and climbs!

After spending her toddler years in feeding therapy, she not only loves to eat but to bake and cook.

Her sense of fashion. For a time, it was dresses, then sparkly shoes and now as a girl after my own heart: wearing her Bruins jersey. Everywhere!

Bridget is the best travel companion. She is up for any road trip, brings a bag of snacks and has hardly any bathroom breaks. She offers random hugs and notices things like the sunset or that there is a Dunkin coming up. She doesn’t even mind sleeping in the car or a random parking lot if we are arriving before our reservation time. Though you do have to convince her that she cannot be in the drivers seat!

 The girl loves to camp. She would spend her year camping, if we let her. I hope it is because we are all together. But if I were being honest, it would probably be because there is usually a pool nearby.

Bridget is so kind and funny. She has, since pre-k, developed friendships both with her peers and her educational/therapeutic team. Her friendships look different from those her numerological age and those her developmental age. Yet, they are so similar. The joy they have within those friendships remains the same. The friends she left behind when we transferred her out of the traditional school system will still greet her with a smile and a hug.  She makes people laugh.

Bridget is not perfect, and I am not talking about her health issues. She is stubborn. She is sometimes disrespectful. She will try to avoid hard things. She will slam doors and refuse to do chores. She cheats at Candy Land and tries to at Uno. How awesome is it that she is a typical teenager in all the best ways possible.

Bridget has so many moments where I am wondering how she did that?   I know it is sheer determination. For example, the day she took over her sister’s bedroom. She not only moved everything she did not want into another room, but she also moved all of her bedding and special things into Abbey’s room. When she was younger, she used to move all of our furniture into different rooms in some kind of fen shui.   She has such determination and a way to make things work, for her (not always for anyone else).

Just months before her first birthday, we were told Bridget would never amount to anything. She would never roll over, have a quality of life, speak or walk. I don’t know how much she heard or understood, but she seems to have taken on that challenge and has decided to tell the world just let me show you what I can do next.  She has climbed mountains, both figuratively and literally since that prognosis.

She has amazed me every single day of her 17 years. I know the next 17 years there will be moments that bring me to my knees, send a WTF I CANNOT DO THIS ANYMORE text to my village. And they will remind me that not only can I do this, but Bridget will also triumph over any obstacle PACS1 puts in her way.

Happy 17th birthday, my sweet Bridget. Thank you for choosing me to be your mom. Thank you for teaching me every day, that yes there are hard moments but there are so many moments of joy.

Even if we are climbing the mountain, you are always holding my hand.

The Parenting Network

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One of the things I am most thankful for in this unexpected life is the parents that are willing to share their stories, their IEPs, their tricks, knowledge and experiences. That is part of why I continue to write this blog. Even if it embarrasses my eldest and I’ve been told that “no one blogs anymore.”

Without this blog I never would have found the doctor who after an almost 6-year search, was able to diagnose Bridget with PACS1. Without ingenious therapists who were open to me saying, “a reader told me about this” and trying every therapy possible, Bridget may never have ridden the big yellow school bus.

This is why it is so important that we share our institutional knowledge about this unexpected journey. Just as when parents would share their IEPs in the therapy waiting room, now we are sharing what happens to our adult children as we begin to experience a whole new level of learning.

I always “knew” that before Bridget’s 18th birthday we will have to file for guardianship of her. What I recently learned, thanks to that parenting network, is that there are different types of guardianship and each type has different ramifications.

Mistakenly, I always thought guardianship was kept the status quo. That it was, while legally binding, a foolish piece of paper that just allowed us to keep being Bridget’s caregivers. I did not even realize there are types of guardianship and the implications each one represents.

**Warning I am not a legal professional; this is just information as I have understood/internalized it. If you have a better understanding of this very complicated issue, please let me know! ***

There is the typical guardianship, where I will be appointed ruler of all things Bridget. I will be responsible for her finances, health care, where she will live and every decision big and small. Bridget will technically have no input or ability to counter my decisions. Here is the wrinkle I just learned. Bridget will never be allowed to marry, without Court approval. Now, that is not even something on my radar. Yet I know that a lot of parents hope for this, that their child does have the mental capacity to fall in love.

I recently learned there is another type of guardianship where the parent works with their child in making decisions. Decisions are made to foster independence (which of course, the full guardian wants as well). From my readings, it offers Bridget the choices and input in the decisions her dad and I may make for her. More importantly, she is the driver rather than the passenger. She has the ultimate decision-making power; be it get married or have a procedure. While I am still learning about this type of guardianship, what I know is that for us this is not going to be an option. And not just because I am a control freak.

We also have to consider that we are aging, and most likely Bridget will outlive us. We had to really think about who will care for her in our absence. Her sister has always known that she will one day care for Bridget. Yet we don’t want Abbey to stop living her best life, traveling the world and in her era of saying “yes” to the next adventure.

Until Bridget is 22 years old, she cannot move out of our town, or she jeopardizes her school placement, something else I just learned through the parenting network. Whomever becomes her guardian, must relocate their entire lives to accommodate her needs.

Not only do Bridget’s next caregivers have to rearrange their lives, they have to learn not only all things Bridget but all things in relation to caring for a forever 4-year-old.

My hope is that this fantastic parenting network we have found continues to offer a guiding light to not just to us but to everyone in Bridget’s village.

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.

Sometimes we are not the same

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I write and believe there are a lot of times my life as a special needs mom is the same as my role as a typical mom.

While I believe in those times, there are so many times when my neurotypical mom role with my oldest is so divergent as my role as Bridget’s mom

I’m sitting here at 9pm with a baby monitor next to me because I have to watch her for stimming, check in if she needs the bathroom and when the monitor goes off at 1am to make sure she’s not out of bed getting her iPad

Screenshot

Unlike my eldest, I have full control of Bridget’s medical chart and finances

When my eldest was 16y old she got home after school by herself. With Bridget I rush home from work to meet the SPED van that doesn’t call me when two children are out that day so she will be dropped off 30 minutes ahead if schedule

When my eldest was 16 I left her home with Bridget while I was at a work conference in Vegas. For the weekend. I cannot leave Bridget home long enough to go to the grocery store

When my eldest went to college I should’ve been an empty nester. With Bridget that will never be a phase in my life.

This is all okay, honestly. It is okay that Bridget is living a different life than her sister. As much as I like to focus on the similarities, rather than the differences, I also know that it is important to remember that they are different.

Just like all siblings.

The struggle is real…. Possible tissue warning ahead

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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

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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.

    Ten Things

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    This was a really good week! Which always makes it easier to find ten things to be thankful for, but it important to me not to take the good week for granted.

    1. When I was nervous about bringing Bridget to an event this weekend, not only did the hostess with the mostest immediately call me, she stayed on the phone with me for an hour to discuss different strategies moving forward.
    2. That when my favorite SPT friend saw the emotion board school sent home to help me with discovering why Bridget was upset told me not only was I doing it wrong but I was a dumbass for not talking it over with her in the first place HAHAHA
    3. That Bridget sat for THREE hours in a Dunkin’s while I met with another mom, someone I hadn’t seen in years and we were able to reconnect in such a special way.
    4. That Bridget walked a mile in her school’s fun run/walk. Okay it was a forced march, but she did it.
    5. That when I went to do something drastic with my hair, the stylist not only talked me out of it, but asked (and listened!) to why, came up with a plan and told me to think of it for a few weeks.
    6. That my 93-year-old MIL that can manage to walk a mile and a half to bingo but cannot manage to get out of her own bed without falling, came home from the hospital as feisty as ever.
    7. That event I was worried about attending? Bridget did awesome, chatted with others and had the best time.
    8. That Bridget’s medical team listens to me and works with me.
    9. That I was able to see Bridget at her school, surrounded by her true peers and see their friendship in person.
    10. That I could be there for a friend this week, instead of them always being there for me.

    And one more, that this week there were more moments like this

    Ten Things

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    I am a firm believer that the more I recognize the good that has happened this week, the easier it is to deal with a week full of Mondays.

    And this week has been a Monday. All freaking week. It wasn’t just me, either. Everyone I talked to, from friends, coworkers, customers and Bridget’s team said their week felt like one long freaking Monday.

    Which brings me to the first thing to be grateful for

    1. That others acknowledge bad days. That when I say this has been the longest Monday, and it is Thursday they immediately get me and make me feel less alone.
    2. That my week started with brunch with two of my friends from high school. That we shared, laughed until we cried and shared the hard times. The times that in the grand scheme of things, are less than world hunger but more than noticing the milk has gone sour after your first sip of coffee. That the time went by so fast it wasn’t until we got home that we realized we forgot to take the group selfie. Again.
    3. That I’ve kept this basil plant alive. Those who cannot grow, buy their herbs from the grocery story and the fact that after multiple attempts to grow my own have failed, my Market Basket basil is alive and well.
    4. Wine, because let’s face it life is always better with Pinot Grigio.
    5. When I lost my shit last weekend after Bridget screamed she hated me (while hugging me) my husband didn’t try to fix me. Instead, he held me and said, this really sucks.
    6. That my mom is finally healthy enough to go out to dinner and ate her entire meal.
    7. That my sister-in-law read how I blame her mom for the “mothers curse” post and saw the humor (and agreed with me).
    8. That at Bridget’s IEP this week, her team were kind at keeping my expectations in check and understood my need to make Bridget as independent as possible before she leaves their school.
    9. That I have a village that remember all of Bridget’s appointments and check in to make sure I am okay. That they check in to share their own struggles so that I do not feel like I am always taking from them. That at the brunch on Sunday, they just assumed Bridget would be there and when she was not poured me a really big glass of wine and let me really relax for the first time in too long.
    10. That my week ended with mall pizza with Bridget and another best friend who didn’t care that we were at a food court. She laughed when shoe shopping for Bridget took 2.2 seconds and when we strolled the mall, she engaged with Bridget. Friends that bring Bridget out of her shell and into the world around us is priceless.

    A week full of Mondays could leave me crying in my wine. But as hard as this week was? It was also full of more than ten things that brought a lightness to my week. The friends that make this unexpected life so much easier to navigate the speed bumps life keeps putting in our way.

    What are you thankful for this week?