It’s so hard to listen to the advice I give to each other and apply it to myself.
One of my friends who is a few months behind me in her treatment for breast cancer messaged me yesterday. She’s at the beginning of the end of her treatment and the realization that she will be on her own going forward is setting in.
She’s anxious, depressed, searching for her new normal.
Through several messages back and forth, I reminded her that the most important thing is to be kind to herself, to remember how far she’s come, how strong she really is and that it’s okay that she’s sad, angry, stressed, annoyed with the world and all the while, grateful to be alive.
I need to remember all this when it comes to my own issues.
I can’t be expected to just settle right back into life after all I’ve been through. Not only have I survived cancer and all the treatments that go along with it, I’ve changed jobs after almost 18 years at my previous employer. I’ve had to start over with vacation, job knowledge, co-workers.
No wonder I’m so fucking tired.
It’s also no wonder that the little things irritate the shit out of me.
I want to be better but I need to take the time to feel all the feelings, to process all the stress that I managed to tamp down while I was going through treatment.
I could have died.
I need to let that sink in and then…let it go.
Breathe in.
I’m alive.
Breathe out.
I’m strong.
Breathe in.
It’s okay to be anxious, to worry, to feel lost.
Breathe out.
I don’t always have to be strong.
Breathe in.
I have so many supporters.
Breathe out.
It’s okay to ask for help.
Breathe in.
I’m alive.
Breathe out.
I’m here.
Breathe in.
I deserve all the kindness I put out to others.
Breathe out.
I am as deserving of love and compassion as anyone else.
Breathe in.
I’m alive and I’m grateful and I’m human, with all the strengths and weaknesses that come with that fact.
just keep breathing.
A mom, a dad and two daughters. We're living ordinary lives with a twist of 5p- (Cri du Chat) for spice. But we're about so much more than our younger daughter's genetic diagnosis.
Friday, April 5, 2019
Thursday, April 4, 2019
Toilet Ball
I’m pretty sure I’ve mentioned before that Olivia sleeps with an odd array of items. None of them are soft and cuddly.
No, they’re all hard and leave weird impressions on her body after a night of sleep.
To recap, she currently takes the following items to bed with her every night:
Book light
Small ball (think tennis ball sized) with a mermaid inside, floating about in some kind of liquid
Small ball (same size as mermaid ball) with a light that comes on if you bounce it
Lid to a long empty shampoo bottle
Nightlight shaped like a turtle
Yes. Those are her comfort items for bedtime.
Whatever. They work for her so she doesn’t wake me up several times a night so…yeah.
Well, see, she doesn’t just lovingly place these items beside her bed each morning. No, she carries them all to the bathroom where she gets dressed and then, she takes them all downstairs to place them lovingly on a shelf in the living room from which she retrieves them each night, takes them with her to the bathroom where we do our thing and then carries them all back upstairs to her bed each night.
It’s a process, is what I’m saying.
An annoying process but usually not that big a deal.
Except when one of her balls falls in the toilet.
.
.
.
.
.
Yes.
One of her balls fell in the toilet last night.
It made a big splash and then just settled at the bottom of the toilet bowl, all glittery in the light.
Ick.
I didn’t let myself think about it. I just reached in and pulled that thing right out of the toilet. Then I washed it and my hands in the hottest water that will flow from our taps.
All the while, Liv was standing there with her right hand out from her body.
Apparently, water splashed the back of her hand.
I informed her, “Yeah, I’m not feeling sorry for you for having toilet water on your hand. It splashed in MY EYE.”
She laughed so hard she hit her head on the counter.
It was gross.
And funny.
It was even funnier when she told Alyssa, “One of my balls fell in the toilet.”
That ball, the one that lights up? Will now and forever be called Toilet Ball.
No, they’re all hard and leave weird impressions on her body after a night of sleep.
To recap, she currently takes the following items to bed with her every night:
Book light
Small ball (think tennis ball sized) with a mermaid inside, floating about in some kind of liquid
Small ball (same size as mermaid ball) with a light that comes on if you bounce it
Lid to a long empty shampoo bottle
Nightlight shaped like a turtle
Yes. Those are her comfort items for bedtime.
Whatever. They work for her so she doesn’t wake me up several times a night so…yeah.
Well, see, she doesn’t just lovingly place these items beside her bed each morning. No, she carries them all to the bathroom where she gets dressed and then, she takes them all downstairs to place them lovingly on a shelf in the living room from which she retrieves them each night, takes them with her to the bathroom where we do our thing and then carries them all back upstairs to her bed each night.
It’s a process, is what I’m saying.
An annoying process but usually not that big a deal.
Except when one of her balls falls in the toilet.
.
.
.
.
.
Yes.
One of her balls fell in the toilet last night.
It made a big splash and then just settled at the bottom of the toilet bowl, all glittery in the light.
Ick.
I didn’t let myself think about it. I just reached in and pulled that thing right out of the toilet. Then I washed it and my hands in the hottest water that will flow from our taps.
All the while, Liv was standing there with her right hand out from her body.
Apparently, water splashed the back of her hand.
I informed her, “Yeah, I’m not feeling sorry for you for having toilet water on your hand. It splashed in MY EYE.”
She laughed so hard she hit her head on the counter.
It was gross.
And funny.
It was even funnier when she told Alyssa, “One of my balls fell in the toilet.”
That ball, the one that lights up? Will now and forever be called Toilet Ball.
Wednesday, April 3, 2019
Support
Once upon a time, the lovely, incomparable Julie encouraged me to join a group, to start a blog on a site where other moms gathered to support each other. These moms had all one through unexpected experiences. Some had delivered premature babies who spent months in the NICU. Some lost their babies to chromosome issues, birth defects, still birth, prematurity. Some of us had full term babies who still spent time in the NICU and had ongoing issues even after coming home.
All of us knew what it meant to have dreams dashed, hope washed away with the strong antiseptic soap provided by the hospital.
That site was a Godsend. Julie is an angel.
In case you’re going through the devastation of a premature birth or the diagnosis of birth defect or you’ve lost a child, that side was Shareyourstory.org. It’s a support group provided by the March of Dimes. The ladies (and the few gentlemen) there are amazing.
These days, I’m doing pretty well with my status as a special needs mom. Olivia’s amazing, she’s so very much come into her own as a person, as an individual. I don’t need nearly as much support as I once did, back in the days before her diagnosis, when we were figuring out therapies, failure-to-thrive concerns, reflux, doctors who said she was ‘too pretty’ for there to be anything wrong…
But, a year plus out from chemotherapy and I find I’m floundering in my own doubt, my own status as a ‘cancer survivor.’
Am I?
Of course I’m a survivor, I’m alive, right?
But right now, I am on constant edge, waiting for the other shoe to fall. I wonder if every single pain I have, every twinge, is the cancer coming back.
My index finger hurt for no reason over the weekend. I wondered, “Can you have cancer of the finger?”
That’s so stupid.
And I know it’s normal. I do. But I feel so lost, so alone.
My family is amazing, we all know that.
But they can’t understand the constant low-level worry that buzzes around in my head. They don’t know that I still hurt almost all the time. They don’t know the fear I have each night when I go to sleep, the dread at every doctor’s appointment.
But others do know. People have been where I am, they understand and they’ve felt this too.
I need to find those people. I believe they can bring me down to a level of worry that is manageable. They can tell me that it gets better, that with enough time of being ‘well’ I’ll get past this stage, this worry, this sense of impending doom.
There are a couple of women I know from other areas of my life, one from the above mentioned support site and the other who has a daughter (also Olivia, if you can believe it) who are farther along than I am in their journey of surviving breast cancer but I hate to bother them. I would rather find a group so we can spread out the burden of support. I know, I KNOW, both of those ladies would be more than willing to help, to listen, to give me the benefit of their experience but…again, I have a hard time asking for help from those I know are already giving so much of themselves to the world.
Then again, I would absolutely want anyone who was worried or stressed or just starting their cancer journey nightmare to reach out to me. I’ve heard from quite a few people who feel breast pain or have had an actual diagnosis who are scared and need reassurance. I want to be there for those people.
So…
All of us knew what it meant to have dreams dashed, hope washed away with the strong antiseptic soap provided by the hospital.
That site was a Godsend. Julie is an angel.
In case you’re going through the devastation of a premature birth or the diagnosis of birth defect or you’ve lost a child, that side was Shareyourstory.org. It’s a support group provided by the March of Dimes. The ladies (and the few gentlemen) there are amazing.
These days, I’m doing pretty well with my status as a special needs mom. Olivia’s amazing, she’s so very much come into her own as a person, as an individual. I don’t need nearly as much support as I once did, back in the days before her diagnosis, when we were figuring out therapies, failure-to-thrive concerns, reflux, doctors who said she was ‘too pretty’ for there to be anything wrong…
But, a year plus out from chemotherapy and I find I’m floundering in my own doubt, my own status as a ‘cancer survivor.’
Am I?
Of course I’m a survivor, I’m alive, right?
But right now, I am on constant edge, waiting for the other shoe to fall. I wonder if every single pain I have, every twinge, is the cancer coming back.
My index finger hurt for no reason over the weekend. I wondered, “Can you have cancer of the finger?”
That’s so stupid.
And I know it’s normal. I do. But I feel so lost, so alone.
My family is amazing, we all know that.
But they can’t understand the constant low-level worry that buzzes around in my head. They don’t know that I still hurt almost all the time. They don’t know the fear I have each night when I go to sleep, the dread at every doctor’s appointment.
But others do know. People have been where I am, they understand and they’ve felt this too.
I need to find those people. I believe they can bring me down to a level of worry that is manageable. They can tell me that it gets better, that with enough time of being ‘well’ I’ll get past this stage, this worry, this sense of impending doom.
There are a couple of women I know from other areas of my life, one from the above mentioned support site and the other who has a daughter (also Olivia, if you can believe it) who are farther along than I am in their journey of surviving breast cancer but I hate to bother them. I would rather find a group so we can spread out the burden of support. I know, I KNOW, both of those ladies would be more than willing to help, to listen, to give me the benefit of their experience but…again, I have a hard time asking for help from those I know are already giving so much of themselves to the world.
Then again, I would absolutely want anyone who was worried or stressed or just starting their cancer journey nightmare to reach out to me. I’ve heard from quite a few people who feel breast pain or have had an actual diagnosis who are scared and need reassurance. I want to be there for those people.
So…
Tuesday, April 2, 2019
I Need to Shut Up
Sometimes (most of the time?) I talk to much.
Sometimes I just wish I could shut up.
But there is so much going on in my head, so many conversations, so many recriminations, so much internal dialogue that I can’t stop it from spewing from my mouth like verbal vomit.
It’s annoying, even to me. I can’t imagine how irritating it must be to those around me.
I used to say things like, “I’ll shut up now.” I’d say this to boyfriends and friends alike. I was so desperately hoping they’d reply with something lovely like, “No, I like listening to you.”
Alas, no one ever actually said that.
But to be honest, I don’t blame them. I mean, how annoying is it that I said that? I’m annoyed at my younger (like, I was younger yesterday, right?) self for saying it.
Was I really so desperate for validation that I said something like that?
Yes. Yes, I was.
I still am.
I’m not proud of that, but there you go.
Sometimes I just wish I could shut up.
But there is so much going on in my head, so many conversations, so many recriminations, so much internal dialogue that I can’t stop it from spewing from my mouth like verbal vomit.
It’s annoying, even to me. I can’t imagine how irritating it must be to those around me.
I used to say things like, “I’ll shut up now.” I’d say this to boyfriends and friends alike. I was so desperately hoping they’d reply with something lovely like, “No, I like listening to you.”
Alas, no one ever actually said that.
But to be honest, I don’t blame them. I mean, how annoying is it that I said that? I’m annoyed at my younger (like, I was younger yesterday, right?) self for saying it.
Was I really so desperate for validation that I said something like that?
Yes. Yes, I was.
I still am.
I’m not proud of that, but there you go.
Monday, April 1, 2019
Day of Disappointment
So I couldn’t do anything right the other day.
Wait, work was fine that day. And I made an appointment with a doctor, so that was okay too.
But once I got home, it felt like the whole evening was one big disappointment…in me.
I hadn’t even put my purse down when Olivia accosted me at the door and asked if we could go to Gram’s.
I told her we had to do her homework first.
We did her homework…painfully, and then waited for Alyssa to get home.
Tom was cleaning strawberries for the girls to eat later. He’d gathered most of the garbage that we were going to take to my mom’s house.
Alyssa got home and sat in the driveway with her friend Tessa FOREVER. Apparently, they don’t spend enough time together because they needed that extra eternity to hang out and bond over bitching about some of their other friends.
It’s what we do, right?
So I was tired of waiting, so I told Liv to put her boots and coat on and we’d go out.
Tom tossed the knife he was using to hull the strawberries down and said he’d finish getting all the garbage together.
I sighed and said it was okay, I didn’t realize there was more. He ignored me and went into the garage.
I took over the strawberry project, feeling sad and dejected. Maybe I’m PMSing, who the hell knows.
Finally, he came back in, I finished up with the strawberries and then Olivia and I went out to where Lyss was STILL in Tessa’s car, which was blocking my exit out of the garage. I shot a pointed look at Alyssa and got in my car. Olivia got in the passenger seat.
Alyssa got out of Tessa’s car, Tessa pulled away and Lyss got in the backseat and we headed to my mom’s.
When we got there, my mom off-handedly said, “I’d almost given up on you.”
She had a bunch of food ready for us.
Sigh.
As lovely as it was to have food cooked for us, I felt bad that she’d thought we might be coming after going to all the trouble to cook so much for us.
We ate, we hung out in the toasty sunroom. Olivia asked if she could take off her pants. I denied her request. She asked if she could take off her shirt, I denied that request as well and then we went home.
There I found a bunch of food that Tom had cooked/heated up for us.
Sigh!
Damn it! Why is everyone being so freaking nice on a night when I can’t possibly reciprocate and when all I can do is disappointment every single person in my life?
Olivia ate what her dad had heated up.
Alyssa took a shower.
I packed lunches and put away the other food that Tom had cooked, washed the dishes
Wait, work was fine that day. And I made an appointment with a doctor, so that was okay too.
But once I got home, it felt like the whole evening was one big disappointment…in me.
I hadn’t even put my purse down when Olivia accosted me at the door and asked if we could go to Gram’s.
I told her we had to do her homework first.
We did her homework…painfully, and then waited for Alyssa to get home.
Tom was cleaning strawberries for the girls to eat later. He’d gathered most of the garbage that we were going to take to my mom’s house.
Alyssa got home and sat in the driveway with her friend Tessa FOREVER. Apparently, they don’t spend enough time together because they needed that extra eternity to hang out and bond over bitching about some of their other friends.
It’s what we do, right?
So I was tired of waiting, so I told Liv to put her boots and coat on and we’d go out.
Tom tossed the knife he was using to hull the strawberries down and said he’d finish getting all the garbage together.
I sighed and said it was okay, I didn’t realize there was more. He ignored me and went into the garage.
I took over the strawberry project, feeling sad and dejected. Maybe I’m PMSing, who the hell knows.
Finally, he came back in, I finished up with the strawberries and then Olivia and I went out to where Lyss was STILL in Tessa’s car, which was blocking my exit out of the garage. I shot a pointed look at Alyssa and got in my car. Olivia got in the passenger seat.
Alyssa got out of Tessa’s car, Tessa pulled away and Lyss got in the backseat and we headed to my mom’s.
When we got there, my mom off-handedly said, “I’d almost given up on you.”
She had a bunch of food ready for us.
Sigh.
As lovely as it was to have food cooked for us, I felt bad that she’d thought we might be coming after going to all the trouble to cook so much for us.
We ate, we hung out in the toasty sunroom. Olivia asked if she could take off her pants. I denied her request. She asked if she could take off her shirt, I denied that request as well and then we went home.
There I found a bunch of food that Tom had cooked/heated up for us.
Sigh!
Damn it! Why is everyone being so freaking nice on a night when I can’t possibly reciprocate and when all I can do is disappointment every single person in my life?
Olivia ate what her dad had heated up.
Alyssa took a shower.
I packed lunches and put away the other food that Tom had cooked, washed the dishes
Monday, March 25, 2019
Ahhh, Track Season
Track practice started for Alyssa at the beginning of March. She’s driven herself to school for two whole weeks now. She thinks she’s hot shit.
She even went through the drive-thru at the Dairy Treat the other day and ordered a vanilla shake…BY HERSELF!
You guys! She’s growing up. She talks to people without my interpretation. She can order food at a restaurant, she can go out with friends, she can buy her own vanilla shake!
The other night, I couldn’t sleep. I tossed and turned for a couple of hours. I finally got up at 2 and paid a bill, took a bath and finally, FINALLY, laid back down to try to sleep at 3:15. My alarm goes off at 6:00. Ugh.
It was very reminiscent of my steroid insomnia from last year. Not fun.
So now that track practice has started, that means the meets are right around the corner.
I hope the weather turns warm before the meets start up. Watching a track meet in cold rain sucks.
But we do it. We parents are hearty souls. We go out there, we bundle up and we cheer our kids on because if they can run and jump and throw in crappy weather, we can damn well show up and watch them.
Alyssa complains a little about track practice. Her shins hurt, the tops of her feet hurt, her shouler hurts and she’s tired of running in the cold.
But she shows up each day, she runs and jumps and keeps trying and I couldn’t be prouder of her.
She’s an inspiration to me. I want to be more like her when I grow up.
She even went through the drive-thru at the Dairy Treat the other day and ordered a vanilla shake…BY HERSELF!
You guys! She’s growing up. She talks to people without my interpretation. She can order food at a restaurant, she can go out with friends, she can buy her own vanilla shake!
The other night, I couldn’t sleep. I tossed and turned for a couple of hours. I finally got up at 2 and paid a bill, took a bath and finally, FINALLY, laid back down to try to sleep at 3:15. My alarm goes off at 6:00. Ugh.
It was very reminiscent of my steroid insomnia from last year. Not fun.
So now that track practice has started, that means the meets are right around the corner.
I hope the weather turns warm before the meets start up. Watching a track meet in cold rain sucks.
But we do it. We parents are hearty souls. We go out there, we bundle up and we cheer our kids on because if they can run and jump and throw in crappy weather, we can damn well show up and watch them.
Alyssa complains a little about track practice. Her shins hurt, the tops of her feet hurt, her shouler hurts and she’s tired of running in the cold.
But she shows up each day, she runs and jumps and keeps trying and I couldn’t be prouder of her.
She’s an inspiration to me. I want to be more like her when I grow up.
Thursday, March 21, 2019
Driving
Have I mentioned that Alyssa got her driver’s license in January?
No? How remiss of me. So sorry for that.
She did get it! She failed the first test because, well, the old dude who was testing her didn’t believe her when she told him she was just moving ahead to see if there was traffic coming. He felt she was about to pull into on-coming traffic. Yes.
But a week after the first test, she and the dude became besties and she drove away with her license.
She’s driven herself to school for about two weeks now (yes, it’s March, we had horrible weather in the last half of January and all of February) since track practice started.
She hasn’t yet driving with a passenger other than me and/or Tom with Olivia along for the ride.
Last night it was decided that the girls would spend the day with my mom. Right before bed, Olivia asked who was taking them to Gram’s.
I replied, “Lyssie will.”
Olivia stared at me for a moment and said, “Alone?”
I laughed. “Sure, she’s got her license.”
Olivia looked skeptical. She hasn’t ridden along with Lyss yet. Either Tom or I have always been with them.
I assured her, “It’ll be fine. Gram’s house isn’t too far away.”
“Hmmm,” Liv muttered, definitely thinking we were crazy for trusting Alyssa with Olivia’s precious life.
She did want to know, “But what about Lyssie’s track practice?”
“She’ll drive you guys over in the morning and then leave to go to practice,” I informed her.
“Will I just stay at Gram’s?”
“Yes, I’ll pick you up after I get off work.”
Again, she paused, taking it all in.
“Do you want to stay at Gram’s?” I asked.
“Yes, Gram has good tea,” she declared. “Sometimes, she gives me ice tea and hot tea at the same time. I like it when she does that.”
Well then.
No? How remiss of me. So sorry for that.
She did get it! She failed the first test because, well, the old dude who was testing her didn’t believe her when she told him she was just moving ahead to see if there was traffic coming. He felt she was about to pull into on-coming traffic. Yes.
But a week after the first test, she and the dude became besties and she drove away with her license.
She’s driven herself to school for about two weeks now (yes, it’s March, we had horrible weather in the last half of January and all of February) since track practice started.
She hasn’t yet driving with a passenger other than me and/or Tom with Olivia along for the ride.
Last night it was decided that the girls would spend the day with my mom. Right before bed, Olivia asked who was taking them to Gram’s.
I replied, “Lyssie will.”
Olivia stared at me for a moment and said, “Alone?”
I laughed. “Sure, she’s got her license.”
Olivia looked skeptical. She hasn’t ridden along with Lyss yet. Either Tom or I have always been with them.
I assured her, “It’ll be fine. Gram’s house isn’t too far away.”
“Hmmm,” Liv muttered, definitely thinking we were crazy for trusting Alyssa with Olivia’s precious life.
She did want to know, “But what about Lyssie’s track practice?”
“She’ll drive you guys over in the morning and then leave to go to practice,” I informed her.
“Will I just stay at Gram’s?”
“Yes, I’ll pick you up after I get off work.”
Again, she paused, taking it all in.
“Do you want to stay at Gram’s?” I asked.
“Yes, Gram has good tea,” she declared. “Sometimes, she gives me ice tea and hot tea at the same time. I like it when she does that.”
Well then.
Subscribe to:
Posts (Atom)