Tag Archives: empathy

17 Things

Throughout Bridget’s life, while I may not always be Kerri-Sunshine, it has been actually easy to be Bridget’s mom. There have been well documented posts when that has not been the case, but in reality, those moments are blips within her life time.

When I look back over her 17 years, the moments that have brought me to my knees have been far less than the moments that have allowed me to let her live this best life. In honor of Bridget’s 17th birthday, I am sharing the 17 best things about being Bridget’s mom.

On her 17th birthday all she wanted was dinner at the 99 restaurants, with her strawberry daiquiri and Doc McStuffins Cake.

The joy she has working in her school’s greenhouse. Since her dad and I are not green thumbs, nor do we enjoy yard work, we have no idea why she loves this vocational site so much. We are just thankful it exists in her world.

When in the public school, she learned how to ride big yellow school bus with her friends.

Her love of camping and kayaking.

The bond she has with her sister.

She learned to jump and swing.

No matter how many times she has had to go to Children’s for painful procedures, she has always walked in with a smile. Also, that she has stopped pushing the emergency stop buttons in the elevator.

She talks! Sometimes we need context or she needs us to help her translate to someone what she is talking about, but the girl who would never, frequently convinces strangers in Market Basket that they need PINK pop tarts

The girl would never has rolled over and jumped, she swims and climbs!

After spending her toddler years in feeding therapy, she not only loves to eat but to bake and cook.

Her sense of fashion. For a time, it was dresses, then sparkly shoes and now as a girl after my own heart: wearing her Bruins jersey. Everywhere!

Bridget is the best travel companion. She is up for any road trip, brings a bag of snacks and has hardly any bathroom breaks. She offers random hugs and notices things like the sunset or that there is a Dunkin coming up. She doesn’t even mind sleeping in the car or a random parking lot if we are arriving before our reservation time. Though you do have to convince her that she cannot be in the drivers seat!

 The girl loves to camp. She would spend her year camping, if we let her. I hope it is because we are all together. But if I were being honest, it would probably be because there is usually a pool nearby.

Bridget is so kind and funny. She has, since pre-k, developed friendships both with her peers and her educational/therapeutic team. Her friendships look different from those her numerological age and those her developmental age. Yet, they are so similar. The joy they have within those friendships remains the same. The friends she left behind when we transferred her out of the traditional school system will still greet her with a smile and a hug.  She makes people laugh.

Bridget is not perfect, and I am not talking about her health issues. She is stubborn. She is sometimes disrespectful. She will try to avoid hard things. She will slam doors and refuse to do chores. She cheats at Candy Land and tries to at Uno. How awesome is it that she is a typical teenager in all the best ways possible.

Bridget has so many moments where I am wondering how she did that?   I know it is sheer determination. For example, the day she took over her sister’s bedroom. She not only moved everything she did not want into another room, but she also moved all of her bedding and special things into Abbey’s room. When she was younger, she used to move all of our furniture into different rooms in some kind of fen shui.   She has such determination and a way to make things work, for her (not always for anyone else).

Just months before her first birthday, we were told Bridget would never amount to anything. She would never roll over, have a quality of life, speak or walk. I don’t know how much she heard or understood, but she seems to have taken on that challenge and has decided to tell the world just let me show you what I can do next.  She has climbed mountains, both figuratively and literally since that prognosis.

She has amazed me every single day of her 17 years. I know the next 17 years there will be moments that bring me to my knees, send a WTF I CANNOT DO THIS ANYMORE text to my village. And they will remind me that not only can I do this, but Bridget will also triumph over any obstacle PACS1 puts in her way.

Happy 17th birthday, my sweet Bridget. Thank you for choosing me to be your mom. Thank you for teaching me every day, that yes there are hard moments but there are so many moments of joy.

Even if we are climbing the mountain, you are always holding my hand.

The struggle is real…. Possible tissue warning ahead

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

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 of Thankful

    There has been a lot going wrong in our lives this year, but there is so much more going on to be thankful for this week.

    1. That Bridget has a team of Doctors that care about her as a person and are not treating a disease but how that disease impacts every aspect of her life.
    2. That I have a job, a boss and a team at work that understands Bridget has to come first and allows me to work not only a flexible schedule but a remote and sometimes from the PACU schedule.
    3. That there are friends I have not kept in contact with or up to date with Bridget’s recent struggles understand that it is a me not them thing.
    4. That Jenn doesn’t need chemo.
    5. That even though I am a people pleaser and it is incredibly difficult for me to say “no” to an invite, I have become more comfortable with answering: I would love to but Bridget is having a really good day so I am going to stick with our plans for the day. And that my friends and family understand that response.
    6. That I have friends that let me ugly cry, but not wallow in self-pity.
    7. That my eldest is living her best life and while I miss her not coming home this summer, this is how it is supposed to be.
    8. That through this really difficult time, when we have to put Bridget first our marriage isn’t perfect, but it has not imploded.
    9. That when I had to remove Bridget from a retirement party, our friends didn’t judge but were compassionate and understanding
    10. That this happened for the first time in months

    For every bad day

    After my vent-post the other day, I received so much compassion that is simply overwhelming. As I said to one friend, I am a much better caregiver than caretaker. One person did reply (sweetly) that Bridget and I make this life seem easy. Not in the way people who have perfect Facebook/social media lives, but you know their real life is a hot mess.

    In our case, whether you see us online or in the supermarket, we live Bridget’s life out loud. The good, the fun, the ugly cry moments and the ones that bring me to my knees.

    The reason I am so open, is that if I can make one parent (or sibling) feel like they are not the only one living this life, that there is one person on this Earth that might not exactly what they are going through, I do know that feeling of what the actual fuck! I know how it feels that we cannot seem to have a “quiet day” but maybe not exactly what brought you to that moment.

    We are also so very lucky. For every single bad day (or moment or month) we have 50 really great ones.

    This past weekend was full of those little great moments that make it easier to get through the really tough days. I know they are little moments, and the bad moments have felt insurmountable lately. But for me, these moments allow me to remember the girl who would never…

    After months of trial, we got to the beach!

    ….walked two miles this weekend and got to the beach. She could not stay but look how close she got to the water!

    Then to make life a little sweeter, our girl managed to go to the grocery store (another win this month) and made the cake that she had purchased.

    Everything is better with cake

    And that, my friends, is how I keep the light in our lives. How as hard as this life can be; by celebrating these little wins, it makes the battles easier to fight.

    My advice is to keep enjoying those little moments in your life, my fellow warrior parents. Celebrate them. Because if you do, I swear it will make the moments when you are in your driveway screaming at the trees how pissed off you are at this unfair life you’ve been given happen a little less often.

    And for the times that you need more than good memories, I recommend calling a really good friend and sharing a glass of the adult beverage of your choice as they listen to how much you love your child but kind of wish there was a warranty given in the delivery room.

    Mirror, Mirror on my wall

    I am not a fan of the mirror.

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

    TBT–Kaylee is determined to Pay It Forward

    Today’s Throw Back Post is about my friend Kaylee. A girl who is an incredible hero. Once again she is participating in the Polar Plunge to support Comfort Zone. The camp that allowed her a safe place to grieve and to grow. Please consider to once again donating to her cause. No child should lose a parent, but if they do then they need places like Comfort Camps. Her plunge is coming soon, Feb 28, 2015. Given the current arctic winter we are having, I am hoping she doesn’t have blizzard conditions!

    I am in awe of children. Children who want to make a difference in other’s lives. Whether it is a huge movement like Malala or providing comfort for another child. I would like to introduce you to a beautiful seventh-grader named Kaylee.

    Continue reading

    Be kind

    Kind “wanting and liking to do good things and to bring happiness to others”

    I want both of my girls to be kind. I want to be kind yet find myself struggling to bring happiness to others. Anyone who heard me screaming at Abby over the weekend for just once to do something I ask without asking why can attest that I am rarely kind. I am not a model of behavior that I want my children to possess. Continue reading

    My Challenge: ADHD

    Untitled

    With the holiday craziness (that freaking ELF), we took a short break from the Challenge series. I am so happy that for our first Challenge of the New Year a friend from my real life is willing to share her challenge.

    I’ve said it before, but I am always amazed when a friend in real life will share their challenge with the world.  Today I would like to introduce you to my friend who has really taught me a lot about finding my voice. As we live in a small town, she prefers to remain anonymous. Please welcome my Beautiful Friend whose extraordinary child presented her with an unexpected challenge.

    Continue reading