Tag Archives: friendship

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

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

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

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

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

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

Just like all siblings.

The struggle is real…. Possible tissue warning ahead

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I’ve been so focused on all the signs I have missed when catatonia slowly took over Bridget’s life and then battling it to get my girl back to where she was a year ago, I did not recognize the signs that catatonia was taking over my life as well.

Or maybe it is menopausal madness.

Maybe it is both?

Maybe it is that I am just tired of battling PACS1. Every time I think I have a handle on this life, every 12 to 18m BAM another diagnosis is obtained by Bridget. And while this is difficult to admit, some days I get tired of fighting.

It would be easier, honestly, just to let PACS1 take over. Let Bridget retreat into her own world, instead of battling this fucking disease that never stops trying to take my girl from me. It is also difficult to realize that Bridget is happy, in that world I cannot reach. Who am I to keep battling her to join mine?

Then there are moments like this…. where I know she wants to be with me, in the real world. As she snuggles on the couch (yes, with her IPad) and make sure that not only is she as close as humanly possible to me but makes sure that I am under the blanket with her.

It is these little moments, that I know the fight against PACS1 is worth it.

But over the past year, as I made inadvertent concessions as catatonia slowly took over my girl’s heart and brain, I was losing myself. I started to not make Bridget go out into the world, because she was so unhappy. I started not talking on speaker phone with her sister, because it was too difficult for Bridget to hear her voice but have her not be home. I stopped going for walks, because I was afraid to leave her alone for even 15 minutes. I stopped cooking healthy meals because she was happier eating plain pasta and if her dad wasn’t home popcorn for dinner is just vegetables and dairy so that counts, right? And wine is grapes so that is like an extra helping of fruit. (Kidding! Okay kind of true)

Unknowingly, for the first time PACS1 started affecting my mental and physical health.

I stopped checking in on friends, which again I know I don’t have to, but my happy place is caring for others. I have this friend that literally email and/or text multiple times a day. I stopped doing that because I felt like I was too needy and she had a lot going on in her life. I felt like I was taking advantage of her, and others, by always being in distress. Another friend group chat, I stopped posting and only responded. I pulled away from important support systems. Isolating myself because I hated that I could not get off the pity party.

Yet I know, those who know me are screaming at the screen right now that I am an idiot. That they want to be there for me, and I am not the needy friend.

But I’m tired of crying. I am tired. I am tired of having to struggle to find 10 things to remind me that my life is awesome. That I know how important to find those 10 things, so I remain invested in this life, yet I let that slide.

Then I think back, and I realize it isn’t just this past year that I have let myself go. That I haven’t been there for others as much as I should. That I have been selfish and wallowing. It was not any one thing, but a culmination of fighting for 16 years to make sure that Bridget did not just survive but thrive.

Every parent does this. Even if your child is Facebook life perfect, you have fought for them to be perceived this way. You have put your child first, always. You have supported them financially, socially and with love.

I know that my life with Bridget is no different than yours. So why am I struggling so much?

Is it that I am almost 55-years old and wondering how much more fight I have in me? Knowing that this is a rhetorical question, because I will fight one week longer than Bridget lives.

Is it menopausal madness? Like the fact that my husband makes so much freaking noise, even when he sleeps! Is my threshold lower dealing with Bridget’s ongoing issues because my hormones are all done?

Or do I just need to do what I do best and create a plan of action to get out of this seemingly never ending funk?

Spoiler alert…. I’m going with a plan of action.

I know I need to be as dedicated to myself as I am to Bridget (and yes, her dad and sister).

I just need to reset my priorities and make sure that I make sure I put myself on the list of things to take care of.

Ten Things

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Time goes by so quickly, it has been a few weeks since I took a moment to pause and remember with all the craziness going on in my life it is important to remember all the good that has happened that balances out the feelings of my life is a dumpster fire.

Bridget loved her cheerleading season, that capped off with an exhibition at Gillette Stadium with the Patriots Cheerleaders. She not only picked the song her team danced to but insisted on doing the “Lift”.

Taking some “me” time and doing some much overdue self-care

That at work we have successfully opened a second location, expanding my role in a way that keeps me not only challenged but fulfilled

That a friend who spent a year in NYC, came home and we were able to have snacks for dinner for the first time in over a year.

That Bridget went bowling with a friend and while she has the funniest and slowest technique it doesn’t matter how the ball gets down the lane, we are just thankful for the gutter guards

That there were more smiles than tears this week

That when doing a deep clean in preparation for holiday visitors, I found little pieces of my eldest and her imagination that I had forgotten about. And the amazement that even though she has been away at college for over 3 years, I am still finding the hiding places of her “treasures”.

That while I was completely unsuccessful in recreating Wing Dings from Bobby Byrnes Pub, I didn’t poison us. While they were not wing dings, they were still edible, and the onion rings came out fantastic!

That I recognized that I am in a rut, personally, may have some menopausal madness going on and have started to strategize how to get me back to where I was a year ago. I have realized that Bridget’s latest health trauma has impacted me in a way the previous one had not. I could blame that menopausal madness, but those who know me know I don’t like a pity party or to shift blame. It is up to me to put myself back together. It will take some growth, some accountability and most of all my village. Thank you for not letting me slide, for not letting me fail and for never giving up on me.

    And that is what I am most thankful for, the friendships new and old that continue to be the reason I survive this unexpected life.

    Ten Things

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

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

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

    Ten Things

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

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

    Which brings me to the first thing to be grateful for

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

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

    What are you thankful for this week?

    Milestone Envy

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    When Bridget was younger, it was so easy to celebrate the milestones that she worked so hard to achieve. She might not have walked, rolled over or jumped on the developmental scale like her more typical peers…eventually she mastered them.

    Bridget at field day around age 7. When we never thought she would be able to walk, she hoola-hooped!

    When your child is disabled, you start celebrating the tiniest milestones (she ate without choking!) and overcoming at one time seemed like a skill we would have to give up on. And then later once again, her proving us wrong. It would just take more time and be done in a way that we never expected.

    With Bridget’s sister, I have always been laid back when it came to transitions. Going from pre-k to kindergarten? That is supposed to happen. No tears. Turning 16 and getting her license. That is the natural progression. I would have been more upset if she did not get her license. When she graduated high school, she had four options: college, a job with an apartment, the military or not my house. And yes, I not only had that conversation with her but with her high school guidance counselor.

    With Bridget, her obtaining those “smaller” milestones that were celebrated seem so far away.

    Because at some point, you realize this child is never “catching up”.

    Bridget will do many things, but she won’t ever get a driver’s license. She will never go to college, and she will never get married or have a family of her own.

    She will never get that “first job” that teaches her how to be a member of a productive workforce. She will one day get a job, but it will be more of a life skill and not a lifestyle choice.

    Bridget will never get married or have a family. She will always be a part of a family. Living either with us or her sister. But Bridget will never know the joy of seeing her child’s first steps to them graduating college.

    Bridget will not go to college. Now with her sister, no one was more surprised that I was when she decided to go to college. I didn’t expect it to be on an iceberg. I didn’t expect this child who wanted to quit school in third grade, become a student on the Dean’s list. Bridget will never get to shock me that way. She will stay in her special ed program until the day before her 22nd birthday. She will not live in a dorm, have a first love or find her career.

    This isn’t anyone putting limits on Bridget. It is the reality when your child is forever 4-years-old. That reality keeps getting closer, the older Bridget gets.

    Most days that’s okay with her dad and me. Because we do truly know who this child is, she is our forever child who will do great things and bring tremendous joy to not only our lives but to just about everyone she meets.

    Then there are those days when you see her classmates from when she was in a typical public school go to prom, get their learners permits and start touring colleges. When we see the photos of homecoming, dances and sporting events. When we are at a restaurant and our hostess or waitress used to be in kindergarten with Bridget.

    And in those moments, it hurts just a bit that I cannot tell her IEP team that her choices at graduation are college, the military or not my couch.

    Even though we don’t really mind her being there.

    Small moments, big results to keep myself sane

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    The beach is my happy place.

    It is not Bridget’s. Yes, I can get her there, but she wants to leave as soon as possible. Between this trait and her not enjoying M&Ms, I sometimes question if she is really my child.

    Then she cracks a sarcastic one-liner, and yup there is the proof!

    With everything going on lately, some have asked how I keep a positive attitude (full disclosure, it is not always sunshine and glitter over here) and/or I hear “I don’t know how you do it”.

    Here is the thing, I don’t have a choice. I rechecked the hospital records and there is not only a non-return policy, but apparently children also don’t come with warranties. This may have been helpful information prior to deciding to have children. It’s like a super-secret detail no one tells you when you are young and want to start a family.

    My advice to anyone who is overwhelmed by whatever crisis their child is facing is to find small snippets of “me time”. I know, it is not easy. It’s not like you can just escape for a weekend getaway with your spouse. You can’t afford to even go to dinner because it will cost you not only the cost of dinner, but at least $100 in childcare costs if you are gone more than a few hours. That is even if you can find someone you trust to care for your child. We do not qualify for respite care (well, Bridget qualified for 1.25 hours per week–not worth the paperwork!).

    The times I miss my eldest child the most is when I want to run to the grocery store and it’s raining. Kidding, I miss her all the time! But those moments that I took for granted when she was here and I could go for a walk with my husband are probably when I realize how lucky we were when she lived at home.

    This is how I carve out a few minutes each week (I wish each day!) to just refresh and check out for bit.

    When the pharmacy says Bridget’s prescription will be ready in about an hour, I send this text to my husband:

    When driving home from work, I take the long way. I added 15 minutes to my commute. I listen to a podcast or the radio. Sometimes rapping along to Enimem if you are ever next to me in traffic, don’t judge my throwing hands. Sometimes rocking out to Adele or Toby Keith. I take those extra 15 minutes to transition from “work Kerri” to “mom Kerri”.

    On the nights my husband works, I put Bridget to bed at 7p and watch the Real Trashwives and realize while yes, this life is difficult, it is not as dramatic as whatever crisis a Trashwife is facing this episode.

    I put my earbuds in to drown out the sound of whatever video snippet Bridget is watching on repeat as I escape into a book.

    I sleep in on the weekends. I get up at 6am, give Bridget her medication and then escape back to bed until 9am. Yes, I can hear her on the monitor on those mornings she does not go back to sleep. But I am not up and facing whatever she going to challenge me on today.

    These are all small moments, I know. I know my typical friends with typical children try to understand when Bridget has to attend whatever they have invited me to. They also understand that when I say I cannot attend. There are days I really wish that Bridget was the typical 16-year-old, that my husband and I could escape for a weekend to remember why we’ve been together almost 30 years. That I didn’t have to bow out of invites or have my sidekick with me.

    Thankfully those moments don’t happen too often. Because after I take the long way home, this beautiful girl is waiting for me on the front porch.

    And that makes every accomodation for her worth it.

    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.

    I wish….

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    I wish I could always protect Bridget from the mean people in this world.

    I live in a bubble, to be honest.  I have a tremendous village.  Bridget has incredible people in her life that accept her for the person she is, with love. The acceptance she receives has allowed her to attend summer camps, be an active member of  the general education classroom, ride the big yellow bus like a normal kid.  I truly believe that our village has allowed Bridget to be an important part of our town, of our society and allow her a sense of being a normal kid.

    Not a different one. Continue reading →

    I had another post planned…

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    Today I was going to participate in the Finish The Sentence Prompt hosted by the fabulous Kristi of Finding Ninee and her friends Mardra  and Kenya. Instead I am sitting here with goosebumps, sick to my stomach.

    We lost another person to Suicide, Anthony Bourdain. Continue reading →