Author Archives: firebailey

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About firebailey

I possess many titles: wife, mom, advocate, runner, Bruins fan, lover chocolate and Parrot Head. I believe you can conquer any challenge in this world with family, good friends and wine. I write about most of that and more while keeping my sense of humor in this life I never expected.

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.

There should be a what to expect book for your 50’s

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Remember when you were pregnant and there was this “bible” of what to expect in each trimester? While not 100% accurate there was enough details that you were not shocked when all of a sudden you could tell the difference between Braxton-Hicks and holy hell this is the labor the book warned me about. This book was then followed by a book of fiction about your child’s first year and their milestones.

Now knee-deep in my 50’s, I am kind of wishing that in my 20’s or hell even 30’s there was a book of what to expect when I entered second half of this life.

For example, I wish I had known that I once I got married would be answering the question “what’s for dinner” every freaking day for the rest of my life. And that when we then procreated the little monsters would not only ask this question every morning at the ass crack of dawn, but then they would probably refuse to eat whatever I then cooked for dinner twelve hours later.

It would have been helpful to know that in your late 40’s you not only will have a reemergence of acne, but you would also grow grey hairs. Further shocking is that gray hair is not limited to the crown of your head but your chin!

You cannot see the chin hair unless you put your cheaters on. Yet your teenage feral child will point it out to you from 20 feet away.

It would be great to know that while you might never change your diet or activity level from your 20’s all of a sudden in your mid-50’s there is 10 pounds you didn’t even realize you gained because of hello leggings and boobs.

In fact, you are so happy in your 50’s that you finally have boobs, that you do not realize that secretly that is where the 10 pounds have been hiding that all of a sudden you gain another 5 pounds in your ass and belly.

You are still walking and eating the same meals, for example popcorn and pinot for dinner. The portions have not changed. You are still doing the same amount of activity. But BAM all of a sudden you have boobs, an ass and for fucks sake a spare tire around your waist.

In your 20’s you could literally fall off a truck and there wouldn’t be a bruise. Now you trip over a spec of dirt on the floor, and you swear you broke your hip or look like you’ve been beaten by a tire iron.

You now throw your back out and end up in PT from making the bed. The same bed in your 20’s knew wasn’t worth making because after all, you are just going back in later that night.

You can no longer read a menu in a restaurant with good lighting and +1.75 magnifiers. Or for those of us who always wore glasses, suddenly you have to take them OFF to read the menu.

In your 20’s the world was whatever you wanted it to be. For example, you could just decide to move to Maryland. Just pack your car and go to Colorado or Mexico or Japan. Now in your 50’s you have all these children and a spouse and a mortgage.

Which is why you cannot just leave your job. No one wants to pay you the wage to afford the lifestyle you are accustomed to. Not when they can pay someone in their early 30s half of what you deserve for your experience. In your 20’s you could live paycheck to paycheck and now all of a sudden you are once again pinching pennies to make that when that 30-year-old is suddenly your boss you survive their learning that with your age comes experience they should probably listen to.

The doctor you never went to in your 20’s is now telling you about your cholesterol levels, fair skin warnings and making you get those new boobs you grew squashed into the mammogram machine by a perky little 20-year-old that has the coldest hands possible since she hasn’t put on that extra padding yet.

Without warning, you are suddenly getting up at 3am to pee, and there is not a baby in your uterus playing the drums anymore. It’s just your body saying: I know you’re tired but fuck you not only am I going to make you have night sweats that make it look like the roof leaked, I am going to make you run to the bathroom, fall over a spec of dirt and maybe just maybe not pee your pants.

The man you married, the love of your life suddenly breathes so freaking loud. Thanks to menopause (which is missing an “n” it should be MEN-ON-PAUSE), not only is your libido hanging lower than your new boobs but this man that lives in your home has become so annoying. The things you thought were cute are enough to make you go nuclear.

Especially when he asks you what’s for dinner and there is freaking chicken defrosting on the counter. You answer (sarcastically with a side of snark, if you are being honest) “lobster obviously”.

On almost the dark side of my 50’s I realize I am closer to retirement age than I am to being legally old enough drink. How did time go by so quickly?

Yeah, there should have been some warning to our 20-year-old selves that midlife comes a hell of a lot quicker than you think!

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.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

The rules keep changing

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

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

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

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

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

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

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

Bridget after 3.5 hours in Boston Traffic

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

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

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

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

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

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

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

From janitors to doctors, we have been treated humanely.

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

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

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

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

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

And that is frightening for all of us

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

The struggle is real…. Possible tissue warning ahead

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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.