Tag Archives: life

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!

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.

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.

A little self-care goes a long way

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I am horrible at self-care.

With my eldest away at college, I am very aware of how much I took advantage of her being here. Wait, that sounds bad. I did not really take advantage, more I was spoiled by her willingness to hang out with Bridget while I went for a walk, a night out or even just running to the grocery store without Bridget tagging along.

I am extraordinarily lucky that while my friend’s children are grown and have either left the nest or are fully independent, my friends understand that 99% of the time, if they see me that I will have Bridget with me.

I am also lucky that while her dad is as joined at my hip as Bridget is, he does get that once in a while I need a mommy-time-out.

It is my own fault that I have self-isolated…which brings me to how I have also neglected my own self-care. Not just by putting family and work first. Not by not prioritizing myself. But I think I might have had a little (gasp) depression over the past year. Those who know me, know I just threw up in my mouth a little bit by not only writing it out but acknowledging I may not always be able to pick myself up by my big girl panties and suck it the fuck up.

If not depressed, I definitely allowed myself to get “old” over the past year. I’ve gained weight. I am not maintaining my nutrition and balancing the snacks like a 50+ woman should. Instead, I am acting still maintaining the diet of my 16-year-old self with access to my parent’s liquor cabinet! I have not truly exercised (other than walks that become shorter and shorter) this past year. Me, the woman in her 40’s that was running obstacle races probably could not jump rope in her 50’s.

Somewhere along the way, I decided my gray hair was fine. That it was natural. After all, I haven’t worn makeup since it was forced upon me at my wedding 29 years ago. I have historically been a woman that is low maintenance, just some wet hair and some hair gel and I am ready to go. I even started cutting my own hair over the last year (something those of us with curls can get away with!).

Then I saw this photo of me.

Holy crap, I got old.

And not in a graceful, Betty White way.

So the other night, I took some time for some long overdue self-care. I went to an adult salon, not a chain.

Thankfully the stylist not only took mercy on me but guided me away from looking like Elvira and inadvertently signing up to a hair commitment I could never keep. Three hours later I went from this to that.

Photo courtesy of Michelle @ Color Me Crazy Hair Salon

Thank you, Michelle at Color Me Crazy for rejuvenating this tired, overworked special needs mom. It was just what I needed.

Ten Things

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

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

Ignore my attempt at trying to keep basil alive HAHAHAHA

My Mother-in-law’s Curse

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Do you remember when you were a teenager and your mom cursed you with: I hope one day you have a child just like you?

When my mom said that she meant perfect like me, it was more of a hope than a curse. Especially when I was a teenager. I never caused problems, there was never any drama, and I was a perfect student. Really, she had no idea how lucky she had it.

My mother-in-law on the other hand raised a bunch of hellions. I don’t know how she survived them. When she said her curse, she meant all the voodoo type of future grandchildren that would cause her children more gray hairs and sleepless nights. It’s true, my sister-in-law was gifted boys just like her brothers. It wasn’t her husband’s fault at all that the boys were wild.

Of course, my mother-in-law never mentioned the curse she bestowed on her son. And to this day, she will probably deny it.

With my eldest, I understood the curse was real. While she wasn’t a total hellion, oh man the teenage girl drama was real.

For some reason, I thought with Bridget that I was spared by my mother-in-law’s curse. Since Bridget has always been behind her peers and has a mind of a 4-year-old, I thought puberty would either never happen (yes, I was swimming in the river of the de-Nile) or would just be something she would not realize was happening.

Then catatonia happened. Then depression happened. Then PACS1 remained the gift that kept on giving. And now puberty and all the fun that goes along with it.

This Saturday was a perfect example of wondering what the hell is going on. Refusing to get dressed and wanting a PJ Day on a perfect end of summer day. Not leaving her room, on her device all freaking day. Now I remember my eldest at 16 doing this, spending the weekend in her PJs and the odors that go along with that. The just hanging out in her room, only to come out for food and water.

Because of the way this year is going, of course I have to grapple with is it PACS1? Is it catatonia? Is it anxiety because she doesn’t know what to wear or what the day is bringing? Is she depressed because she isn’t in her routine?

Or is she just being a pain in the ass teenager?

After being in her room for an hour, she comes out buck ass naked like the 4-year-old she is, asking me to help her get a dress of a hanger.

It again reminded me of my eldest at 16y, ranting at me one moment and being sweet as the young child I remembered.

Sigh.

All I know is just like typical moms, this mom will be doing a happy dance when the van picks Bridget up for the first day of school tomorrow. Hoping the battle to get her out of the PJs is a short one.

Just like I used to with her sister.

********

Disclaimer: if my mom denies that I was a perfect teenager, remind her that she is old and I am in charge of whatever nursing home she ends up in!

Deep Breath, there is so much to be thankful for

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It would be easy and probably forgivable if I allowed myself to stay in the pity party mode with all that has been going on with Bridget lately.

Those that know me, know that I set a timer on those moments, because there is way too much to celebrate. Even on the days when what I may be celebrating is that I realized my shirt was on inside out before I left the house and not midway through the workday (true story).

With the end of Summer this weekend (where did summer go!), instead of remembering that this summer was full of really hard moments, I am going to celebrate the best moments that happened in between all the crap ones.

  1. My eldest used us as a pit stop on her way to India and a trip of her lifetime to start the summer off. We hadn’t seen her since Christmas and let’s just say someone was very happy to see her.
  2. In all the craziness of catatonia, we found a new team of Doctors who meet with us once a week via video and explains things in a way that makes sense. They don’t talk at us but with us and truly care about improving Bridget’s quality of life.
  3. An unexpected phone call from a researcher who is studying effect of PACS1 on the brain and learning that not only has he not stopped studying PACS one, but research is also continuing by others across the States.
  4. That my office has been supportive and helpful with all the expected and unexpected time off for Bridget appointments. Bonus: they never judged when I took a “me day”
  5. Friends that check in, friends that have been there when they can and accept when I cannot be there.
  6. That my mom still goes to Barry Manilow concerts and dances like a teenager.
  7. Pinot Grigio.
  8. Our annual camping trip in the land without WIFI or Cell Service. I was so nervous about how Bridget would do. There were low moments, there were moments where she was not herself balanced with moments in the pool (her happy place) and the campfire where she was the girl I remembered from summers past. That we were surrounded by friends that said there are no words, but they are always here for us.
  9. While we have not been able to do date nights, we have a firepit. Our backyard escape has been where we can reconnect and remember that throughout it all, we are a couple first and Bridget’s parents second.
  10. That while summer might be ending this weekend, there is still time for moments like this:

What are you happy for this Summer?

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.

Dear Bridget

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Last week this memory popped up on my Facebook feed and I had no idea what I had written way back in 2013.

I searched and found this post where I was trying to explain to a four-year-old Bridget (Boo back then) why she had to work so hard to make the tiniest progress and how sorry I was that I am the one that causes her the pain, procedures and therapies. Yet I never once in those four years, have I regretted one moment of this unexpected life.

Unfortunately, for Bridget, turning 16 was not sweet. It has been nine months of struggle and after a lot of work, acquiring not one but four more diagnoses and adding more doctors to her list of specialists.

Which brings me to this moment, where that letter to Bridget needs to be updated. *Tissue warning ahead.

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