Tag Archives: acceptance

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.

This Christmas

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Birthdays and Christmases are always difficult for our family. We love that people want to shower Bridget will gifts but there are a few things that are difficult to explain. For example, Bridget has never “play” with toys. For years she would receive very generous gifts of dolls, coloring books, puzzles, etc… that would become my next year’s donation to Toys for Tots. Not that we did not appreciate the efforts or that we are ungrateful.

Well except for the Play-doh, that was going into the donation bin no matter if Bridget was typical or unique.

There is just something depressing when you look at a play kitchen someone gave your child that they do not have the interest or capacity to play with or the book they cannot read.

Thankfully, our relatives began to listen to us a few years ago and really got inventive with ways to show their love for Bridget in gifts. Just not toys.

This Christmas, if you are struggling on what to get a child you adore something special, I have the following suggestions that have worked for Bridget.

Experiences that their parent cannot afford to take them to or think about purchasing before they are all sold out. One year a friend gifted Bridget with tickets to the Nutcracker. It did not matter that Bridget did not realize it was a present. Nor did it matter that it was not on her birthday. But I did, this friend gave Bridget a wonderful gift that I was able to witness her awe and joy.

Gift cards to their favorite place. In Bridget’s case that is the 99 Restaurant and Dunkin’s. She doesn’t go at that moment, but she is overjoyed when she gets them and so proud of herself when she pays for her donuts.

Bridget “paying” for her lunch at the 99

Therapy equipment. When Bridget was younger and our lives revolved around PT & OT, I was telling a friend how therapy did not just happen in the therapy center but every moment at home. When Bridget jumped for the first time, this friend sent an indoor trampoline. It was something I could not afford at the time; it was something Bridget needed but more it was something she enjoyed.

Clothes, I know you are thinking to yourself but I want to get this child TOYS not clothes how boring. This might only be a girl thing, but from the time she was young Bridget loves nothing more than to receive sparkly shoes and dresses.

Snacks. This sounds like a crazy idea, but one year Bridget’s aunt randomly asked me what she liked to snack on. That Christmas she created a tower of presents of Bridget to unwrap with her favorite snacks. It was a double win: Bridget was so excited each time she opened up another snack, and I did not have to shop for them for quite some time!

The gift of lessons or memberships. Does the child love to swim? Give the gift of swim lessons. Loves mini golf or gymnastics. Ask your friend if they would like the gift of lessons.

Safety equipment. Not a shiny toy but helping your friend afford a safety device or monitoring system is so much more appreciated than the toy they will then regift to a child that will enjoy it.

I understand that these suggestions are not always fun, or immediately rewarding for you the giver of the gift. The child? They may never know it was from you, but the joy they will receive is priceless.

But this Holiday Season, give the gift the child will enjoy and that toy you saw to Toys for Tots.

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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    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?

    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

    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.

    Mirror, Mirror on my wall

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    I am not a fan of the mirror.

    When I look into at the image the mirror, I see Rosannadanna hair and a face only Cher would love in the movie Mask. I see the long front teeth that got me nicknamed “bucky” by a vengeful cousin in JR High. I used to hate going into the bathroom that said “Bucky was here” where a chunk of the counter was chipped. Continue reading →