Monthly Archives: October 2025

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

One more week

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Most parents want their child to outlive them.

There is a common refrain with parents whose child has special needs:

I want to live one day longer than my child.

One more way this life with Bridget is different than my life with her sister.

With Bridget’s latest PACS1 hurdle this year, one of my biggest struggles was knowing that if she was in a residential program, if I was not in her life every day was knowing in my soul that the catatonia would have gone unreported and untreated.

That is not saying I am perfect or the only one that cares for Bridget. But I am her natural historian. I am the keeper of the medical record. I am the one that has developed a relationship with her team (medical, therapeutic and educational) that when I had concerns about her stimming listened to me and kept searching for an answer.

While I have been struggling with the guilt of the treatment course, the larger battle for sanity was going down the rabbit hole of if I was not willing to advocate for her, if I was not so in-tune with Bridget, what would have happened?

And that is why each and every special needs parent hopes to live one day longer than their child.

Because while we have a village, we have support and people who love our child they are not in the day-to-day, they don’t know the medical history or treatments that have been tried and/or adapted for success.

I am lucky, I am not a single parent. Yet as awesome as Bridget’s dad is…I am the primary caregiver and knowledge base. Some days it is a heavy burden, being the keeper of Bridget. I am lucky that I have a husband who does his best to share the load. I have friendships that do whatever I need, in the moment I need it.

Bridget is lucky, because she has a sibling and cousins that have promised to care for her long after I am gone. And as much I am grateful for that, I know it won’t be the same for Bridget. Not because they cannot but because no one really knows what life with Bridget is like and I don’t ever wish her to be a burden.

This summer, we almost lost Bridget again and I realized that I do not want to live one more day than Bridget.

I want to live a week before the grief is too much to bear, living without her.

I want to celebrate Bridget. I want the world to know that the girl who was told she would never did so much more than we ever imagined.

She rolled over

She walked.

She jumped

She talked and convinced an elderly lady at Market Basket that she “needed” the pop-tarts Bridget put in her basket.

She has made friends and an impact.

She has redefined my expectations, once again.

She has battled and is doing her best to win another fight against PACS1

Bridget will always be fighting PACS1.

And that I why I need to live one week longer than she does.

To tell her story, so that her life is not about her struggles but about her impact.

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

I’d be lost

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Recently, WordPress informed me that I have published 1,000 blog posts. What started as a way for me to journal (though admittedly publicly) but also find a community where I might, just might, find a cure for Bridgetitis or heck an answer of what Bridgetitis was, transitioned into a way to not only keep my sanity but create a village of support.

I know, in my heart, I would be lost if I hadn’t started this blog. Not only because we discovered PACS1 but because it brought all of you into the conversations that otherwise would be stuck in my head. I know that it would have taken years longer to find a diagnosis. I know that I would never have gained the emotional support to survive the ups and downs of this life.

This weekend is a perfect example.

I had written a post recently about losing hope. Because I hit “publish” and a friend read it, she called me on my bullshit and brought me back to reality. She asked:

“Have you truly lost hope or did you lose hope for a moment?”

What was left unsaid was, did you put your big girl panties on and get over your pity party?

It was just what I needed, in that moment. A friend to remind me not to give up. Not to give up hope or any dreams I might have for Bridget.

Bridget’s future might not be what I imagined two-, five- or ten-years ago.

Since birth, she has been redefining my life, my expectations and dreams.

So, no. I have not given up hope.

I’m just restructuring my dream for her future to the reality that makes Bridget the best and happiness she can be.

10 Things

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This week has been probably the easiest of the Month. Wait, it is only the first week of October. But if this week sets the tone for the rest of the month, we will finally be (as I told a friend earlier) on the lighter side of hell.

  1. That when Sunday plans to meet friends out get changed at the last minute for them to sit around my kitchen instead. Not only is the response, of course! But being told this is so much better than going out.
  2. On Saturday walking with my favorite cancer survivor in the Boston breast cancer walk. There were mimosas made in the parking garage (is it still a mimosa when there isn’t enough OJ?), walking along the Charles as we laughed our tatas off, followed by breakfast in the City. Adulting at its finest for a great cause.
  3. Laughing over a friend not to tag her on social, then she ends up in the news!
  4. Running into a friend at the grocery store, us both laughing as we said we have five minutes to catch up. Then wondering why we only see one another at the market, when we live less than a block from one another.
  5. The Bruins are back. Enough said.
  6. Getting a call out of the blue from a friend about her son’s IEP and being there to bounce ideas off one another.
  7. All packed for our last camping weekend and remembering Bridget’s diapers this time.
  8. Being able to laugh at my MIL who walked her 93-year-old self to bingo this week when her ride cancelled at the last minute. Yes, we are concerned that she walked along a road with no sidewalks but am also in awe at her stubbornness and fortitude. Hmm…that’s where Bridget gets it from!
  9. Earlier this week, when I posted a blog post I realized that I have shared snippets of Bridget’s story in 1,000 posts. That people still read, people care to learn about the struggles and the times when things are all sunshine. To have a reader this week message me that my words matter and give their family hope. That it doesn’t always have to be funny, but it always has to be real.
  10. That while it is the first weekend in October, it is still warm enough for moments like this, where I recharge at my happy place and leave the world behind for an hour.

With children, you have to be ready to change your opinion

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When Bridget was born, I knew something was wrong. I thought it was a “normal” medical condition and begged the nurses to save her. That first year, I was so in the trenches that I did not realize this would be her life. I thought that she would be cured. I did not know that we would be facing a lifetime of therapies, medical treatments and intervention.

I remember when she was a newborn, just wanting her to live and saying I would be okay with however she turned out, as long as she lived.

Over the past 16 years, my outlook on life with Bridget has evolved.

I remember thinking all those years ago, that I was okay with Bridget being my forever toddler. That she fought so hard for every milestone, I would not change her for anything.

Then I began to wonder who Bridget would be if it was not for PACS1.

Now I live with that forever 4-year-old and there are days I would change her into a typical 16-year-old in a freaking heartbeat.

There was a time, when I swore Bridget would never be in a contained classroom, or a special school. My daughter was going to graduate with her class and be a valuable member of her community.

Then she slowly stopped going into the mainstream classroom, spent most of her day in a contained one and we moved her to a school that specializes in children with significant special needs. Where she is a member of her community, just not the one I ever imagined.

At the moment I cannot imagine Bridget ever being in a residential program, but I have learned throughout this life that something can be true yesterday and false tomorrow. I no longer talk in absolutes with Bridget. What works for now (being home) might not be best for her in the future.

Recently another parent told me that they wouldn’t change their child with special needs for anything in the world. That they loved their child just the way they were.

I smiled and said of course.

Because I was that mom 10 years ago. I know that there is a certain taboo in thinking that we want our kids to be typical. There is something in us that makes us feel if we wanted to them to be “normal” we don’t love them.

We love our children, the way they are. And it is 100% okay to say we love this child but not this life. It is 100% okay to wonder what they would be like if they were typical. It is 100% okay to feel frustration, or down, or hopeful for a cure.

The truth is, we feel this way about our typical children, too. Name me one parent that doesn’t wish their child was an all-star on the baseball team, a future Olympian or a Rhodes Scholar.

That is parenting, wanting your child to be the best they can be.

As their needs change, as they get older, so does our outlook. We need to be patient with each other and ourselves. We need to be able to look back and say, yes, I wanted Bridget to walk at high school graduation in her cap and gown, with the friends she had been with since kindergarten. And it hurts to see those friends getting their licenses, looking at colleges, insert whatever dream just died a little.

And give yourself grace in those moments.

Because when these moments happen, you always made the right choice for your child based on their needs, not your dream.