Back when I was told I had cancer and then informed that I would lose my hair during chemo, I didn’t care. I mean, I was fighting for my life. I was willing to sacrifice my hair in order to live. It was a no-brainer, right?
Right.
So during treatment and my subsequent baldness, I didn’t let it bother me.
Though, honestly, what the hell, cancer treatments? It’s bad enough to hear that you have cancer but do we have to lose our hair too? It’s just adding insult to injury, you know?
Now, though, I’m almost four years out from when I got my diagnosis. My hair has been growing out for over three years. It’s back to the texture it was before treatment, though to be honest, it’s a little thinner/finer than it was before. At least it seems that way to me.
But it grew. It came back and for the past few months, I’ve hated it. I wore it in a ponytail every single day. It was past my shoulders and felt limp and thin and stringy; not pretty, nothing to be proud of.
So, one recent Wednesday (how’s that for bringing it full circle?) I took a quick shower after screaming at Olivia for making a mess during her own shower (OMG, that is a post for another day…) and after my shower, I grabbed the scissors and made that first irreversible chop. I cut a good four inches off my hair.
Then I went to Alyssa’s room and handed her the scissors with the request, “Please make the left side look like the right side.”
And she did. She did a great job. She snipped and cut and did that angled thing around my face and you know what? I finally, FINALLY like my air again. It falls somewhere between my chin and my shoulders. It’s pretty much all one length and it looks so much fuller and healthier. I stand in the front of my fan for maybe two minutes each morning and flip it over to get it kind of dry and then I go. I don’t use product, I don’t scrunch it, I don’t straighten it or blow it dry. I just wash it, comb it, use the fan to dry it a little and I go. And it’s so freeing.
I haven’t felt this free about my stupid hair since the say my mom and girls shaved my head on the sixteenth day after my first chemo.
I just realized that I no longer had to grow my hair out just because I could. I didn’t have anything to prove anymore. I don’t have to let it keep growing just because I’ve been bald. I can cut it and enjoy it and still be grateful for it. I can stop fighting with it and let it be a little shorter and a lot cuter.
Cancer took a lot from me. It took my health, it took my freedom, it took my hair. But I’ve come so far since those days of fighting cancer…and so has my hair.
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.
Wednesday, July 21, 2021
Wednesday, July 14, 2021
14 Years of 5p-
Although Olivia was two years old when finally diagnosed with 5p- syndrome, obviously, she’s been living with it her whole life.
At the time of her diagnosis, her doctor, the lovely, wonderful Dr. S told us that when Olivia is older, she will get to decide who knows she has 5p- and who doesn’t.
At the time, I was torn. I mean, yes, I want her to be able to pick and choose who knows what about her. But I also kind of wanted the world to be able to see her struggles so that people would be kinder and maybe more patient. Yeah, we all know how that works, right?
I learned early on that having an ‘invisible disability’ is a double-edged sword. There are benefits and drawbacks. Isn’t that how it is with most things in life, though?
We’ve always been open with family about O’s diagnosis. There was no reason to keep it a secret. She is who she is and she’s perfectly awesome even with her diagnosis. Yes, yes, I would STILL give her back that missing part of her chromosome, even these fourteen years later. I would take away that struggle because the world is hard enough to fit into without extra complications.
Anyway!
While at my aunt’s house over the 4th of July weekend, we were all sitting around a table, just doing what families do. My aunt said something about O’s syndrome as she was talking about my cousin H’s daughter and her struggles and my nephew stopped my aunt.
“Wait,” J said. “There’s something wrong with Olivia?”
Olivia looked at him and said casually, “I have 5p- syndrome.”
He looked confused and asked, “What does that mean?”
I explained about the missing chromosome and told him about how things are sometimes harder for Olivia and take her longer to figure out. Olivia is 357 days older than J (to save everyone from doing dreaded math, that’s 8 days short of being a full year older.) I told J that when he started walking when he was 13 months old, Olivia, at just over two years old, saw him doing that and figured if he could do it she could too, which is about when she started walking.
He grinned at that and the subject was dropped.
But it made me think. J hadn’t known that Olivia has a syndrome. To J, she’s just Olivia. A little quirky, maybe a little different but not ‘wrong.’ Sure, she has some weird habits (flapping, stimming, being immature for her age) but again, to him, that was just Olivia.
And that warmed my heart. It reminded me of that day in the doctor’s office all those years ago. It made me thankful for ‘invisible’ disabilities, and how because of them, my daughter is just Olivia, all her idiosyncrasies just adding to what makes her special and loved by family and friends alike.
At the time of her diagnosis, her doctor, the lovely, wonderful Dr. S told us that when Olivia is older, she will get to decide who knows she has 5p- and who doesn’t.
At the time, I was torn. I mean, yes, I want her to be able to pick and choose who knows what about her. But I also kind of wanted the world to be able to see her struggles so that people would be kinder and maybe more patient. Yeah, we all know how that works, right?
I learned early on that having an ‘invisible disability’ is a double-edged sword. There are benefits and drawbacks. Isn’t that how it is with most things in life, though?
We’ve always been open with family about O’s diagnosis. There was no reason to keep it a secret. She is who she is and she’s perfectly awesome even with her diagnosis. Yes, yes, I would STILL give her back that missing part of her chromosome, even these fourteen years later. I would take away that struggle because the world is hard enough to fit into without extra complications.
Anyway!
While at my aunt’s house over the 4th of July weekend, we were all sitting around a table, just doing what families do. My aunt said something about O’s syndrome as she was talking about my cousin H’s daughter and her struggles and my nephew stopped my aunt.
“Wait,” J said. “There’s something wrong with Olivia?”
Olivia looked at him and said casually, “I have 5p- syndrome.”
He looked confused and asked, “What does that mean?”
I explained about the missing chromosome and told him about how things are sometimes harder for Olivia and take her longer to figure out. Olivia is 357 days older than J (to save everyone from doing dreaded math, that’s 8 days short of being a full year older.) I told J that when he started walking when he was 13 months old, Olivia, at just over two years old, saw him doing that and figured if he could do it she could too, which is about when she started walking.
He grinned at that and the subject was dropped.
But it made me think. J hadn’t known that Olivia has a syndrome. To J, she’s just Olivia. A little quirky, maybe a little different but not ‘wrong.’ Sure, she has some weird habits (flapping, stimming, being immature for her age) but again, to him, that was just Olivia.
And that warmed my heart. It reminded me of that day in the doctor’s office all those years ago. It made me thankful for ‘invisible’ disabilities, and how because of them, my daughter is just Olivia, all her idiosyncrasies just adding to what makes her special and loved by family and friends alike.
Tuesday, July 13, 2021
An Ordinary Reunion
As always (except in 2020, which, how many times have we all said that in the past year?) we attended the Ordinary family reunion. This year was the 95th Annual Ordinary Reunion. Last year would have been the 95th, had we had the reunion last year.
Alas, Covid.
Anyway! Things are getting better, people are vaccinated, and we gathered, hugged and probably passed all kinds of germs back and forth. Olivia and I both have some sort of cold, so take that for what’s it’s worth.
The reunion is A Thing to Tom’s family. I mean, it’s fine and fun and I’m glad it’s just once a year. But the Ordinarys take it pretty seriously. They have a committee and everything. For several years (like…seven? Twelve? I don’t even know.) Tom was the president of the reunion committee. His youngest sister is the hospitality crew. Okay, she’s not the entire crew. That would be weird. No, her husband (who once ‘not all men’d me on FB and I almost unfriended him but instead just unfollowed and all is well because of that) is the rest of her crew.
Tom’s other sister, the one with terminal cancer, is the secretary of the reunion committee. Her daughter is the treasurer. At the reunion, L, the current secretary said we needed to vote in a new secretary because she might not be at the next reunion. Sigh. I mean, talk about sad thoughts.
But the reunion must go on and so names were tossed around. L tried to suggest I take on the secretarial role.
I meekly declined, saying softly that I thought that perhaps the job should go to someone who had not married into the Ordinary family. I mean, hell, I’ll use any excuse I can to get out of it.
One of the oldest Ordinary sisters suggested another woman, and that woman declared, “I’m very unreliable.”
And that, folks, is going to be my new go to when someone asks me to do something I don’t want to do. I will simply state, “I’m very unreliable.”
And I will leave it at that. No further explanations necessary.
Okay, unreliable lady did further explain that she suffers from chronic pain and so spends about 18 hours in bed. Which is sad and I’m sorry for her. But I kind of wish she’d just left it at, “I’m very unreliable.”
The treasurer ended up taking the job of secretary, which is very big of her. I’m proud of her as she navigates the world right now. I mean, she lost her wife last August, her mom is currently considered terminal, life just kind of sucks and she’s keeping her head up and trying to find joy in the world. We should all be more like her instead of bitching about corn on the cob.
Late that evening I asked Tom what all the secretary has to do because he was talking about how the treasurer doesn’t actually have a lot of responsibility except, you know, money, which?!?
The secretary’s responsibilities are: -Take notes during the reunion meeting (have I mentioned that after everyone eats, they (we) all sit around and everyone shares what’s happened in their family over the previous year. Yeah, so taking notes during that would be fun, right? -Keep a book of addresses each year, passing around a notebook for everyone to sign in and write down if their address or phone number has changed. Sure, that’s great fun too, nagging everyone to sign the book, since people are awful about that kind of thing. -Reserve the pavilion in which the reunion is held. You know how much I love calling people and doing shit like that? Yeah, not at all, right? -Create the yearly letter that goes out sometime in late May or early June reminding everyone that the reunion is the second Sunday in July, like it has been for 95 years. -Mail out said letter to everyone in the address book you keep.
Yeah, I’m taking a hard pass at all of the above. I don’t do that for my family of origin, why would I do it for the family I married into? Just because I spawned a couple of Ordinarys doesn’t mean I want to take on the responsibility of them seeing their extended family every July. Nope. Leave that to the next generation, is what I suggested. I told Alyssa her time as president is coming.
She deadpanned, “I’m very unreliable.”
Alas, Covid.
Anyway! Things are getting better, people are vaccinated, and we gathered, hugged and probably passed all kinds of germs back and forth. Olivia and I both have some sort of cold, so take that for what’s it’s worth.
The reunion is A Thing to Tom’s family. I mean, it’s fine and fun and I’m glad it’s just once a year. But the Ordinarys take it pretty seriously. They have a committee and everything. For several years (like…seven? Twelve? I don’t even know.) Tom was the president of the reunion committee. His youngest sister is the hospitality crew. Okay, she’s not the entire crew. That would be weird. No, her husband (who once ‘not all men’d me on FB and I almost unfriended him but instead just unfollowed and all is well because of that) is the rest of her crew.
Tom’s other sister, the one with terminal cancer, is the secretary of the reunion committee. Her daughter is the treasurer. At the reunion, L, the current secretary said we needed to vote in a new secretary because she might not be at the next reunion. Sigh. I mean, talk about sad thoughts.
But the reunion must go on and so names were tossed around. L tried to suggest I take on the secretarial role.
I meekly declined, saying softly that I thought that perhaps the job should go to someone who had not married into the Ordinary family. I mean, hell, I’ll use any excuse I can to get out of it.
One of the oldest Ordinary sisters suggested another woman, and that woman declared, “I’m very unreliable.”
And that, folks, is going to be my new go to when someone asks me to do something I don’t want to do. I will simply state, “I’m very unreliable.”
And I will leave it at that. No further explanations necessary.
Okay, unreliable lady did further explain that she suffers from chronic pain and so spends about 18 hours in bed. Which is sad and I’m sorry for her. But I kind of wish she’d just left it at, “I’m very unreliable.”
The treasurer ended up taking the job of secretary, which is very big of her. I’m proud of her as she navigates the world right now. I mean, she lost her wife last August, her mom is currently considered terminal, life just kind of sucks and she’s keeping her head up and trying to find joy in the world. We should all be more like her instead of bitching about corn on the cob.
Late that evening I asked Tom what all the secretary has to do because he was talking about how the treasurer doesn’t actually have a lot of responsibility except, you know, money, which?!?
The secretary’s responsibilities are: -Take notes during the reunion meeting (have I mentioned that after everyone eats, they (we) all sit around and everyone shares what’s happened in their family over the previous year. Yeah, so taking notes during that would be fun, right? -Keep a book of addresses each year, passing around a notebook for everyone to sign in and write down if their address or phone number has changed. Sure, that’s great fun too, nagging everyone to sign the book, since people are awful about that kind of thing. -Reserve the pavilion in which the reunion is held. You know how much I love calling people and doing shit like that? Yeah, not at all, right? -Create the yearly letter that goes out sometime in late May or early June reminding everyone that the reunion is the second Sunday in July, like it has been for 95 years. -Mail out said letter to everyone in the address book you keep.
Yeah, I’m taking a hard pass at all of the above. I don’t do that for my family of origin, why would I do it for the family I married into? Just because I spawned a couple of Ordinarys doesn’t mean I want to take on the responsibility of them seeing their extended family every July. Nope. Leave that to the next generation, is what I suggested. I told Alyssa her time as president is coming.
She deadpanned, “I’m very unreliable.”
Friday, July 9, 2021
My Apologies
I apologize for everything. If the weather isn’t what you’d hoped it would, I will tell you I’m sorry. If the fan I bought shakes when put together, even if I took it apart three time and then put it back to gether and it STILL shakes due to an unbalanced blade, I will apologize.
Obviously, none of this is my fault. Duh. But I can’t help it.
Growing up, my dad apologized for everything. He was always sorry. I remember wondering why he was apologizing for something that wasn’t his fault.
Yes, I see the irony of that sentence up there. I also know that I come by it naturally. But knowing that doesn’t stop me from being annoyed by it.
And then, recently, I’ve noticed that Olivia is telling me sorry for things that are very much not her fault and it…it breaks my heart.
I’m perpetuating the cycle and it makes me crazy. It makes me sad and mad and sick to my stomach.
I don’t want her to apologize for the traffic or the weather or the sunburn you got yesterday because YOU forgot to put on sunscreen. Heck, to be honest, I don’t want to apologize for those things either. I want us to be able to go about our day not feeling like every little thing is our fault.
I have to nip this in the bud. I have to stop saying I’m sorry for everything so that I can help her NOT get into the habit of doing it to the point that she can’t stop herself. I hate it and I don’t want her to get to this point to.
So…I’m trying to figure out how to stop. I need to be more deliberate in what I’m saying and how I’m saying it and, yes, even WHY I’m saying things. That’s the only way I know to start.
Wish me luck?
Obviously, none of this is my fault. Duh. But I can’t help it.
Growing up, my dad apologized for everything. He was always sorry. I remember wondering why he was apologizing for something that wasn’t his fault.
Yes, I see the irony of that sentence up there. I also know that I come by it naturally. But knowing that doesn’t stop me from being annoyed by it.
And then, recently, I’ve noticed that Olivia is telling me sorry for things that are very much not her fault and it…it breaks my heart.
I’m perpetuating the cycle and it makes me crazy. It makes me sad and mad and sick to my stomach.
I don’t want her to apologize for the traffic or the weather or the sunburn you got yesterday because YOU forgot to put on sunscreen. Heck, to be honest, I don’t want to apologize for those things either. I want us to be able to go about our day not feeling like every little thing is our fault.
I have to nip this in the bud. I have to stop saying I’m sorry for everything so that I can help her NOT get into the habit of doing it to the point that she can’t stop herself. I hate it and I don’t want her to get to this point to.
So…I’m trying to figure out how to stop. I need to be more deliberate in what I’m saying and how I’m saying it and, yes, even WHY I’m saying things. That’s the only way I know to start.
Wish me luck?
Thursday, July 8, 2021
Anticipating the New Normal
Alyssa told me recently that her last day at her current job is July 30th. She’s planning to move to her college town in the days following her last day at work.
Yes, I have FEELINGS about this. However, I understand her reasoning for moving to College Town three-ish weeks before classes start. She wants to find a job (she plans to work about 15 hours a week) and just get settled in before school starts.
I get it. But yes, there are those FEELINGS. Those FEELINGS though, are mine to deal with, not hers. I want her to fly free and enjoy this time. I want her to embrace her freedom and her youth and wring the joy out of it all.
Her best friend is going to the same College Town and I’m so happy for them to be there together.
We’re going to miss her but remember, College Town is only an hour away. And even if she doesn’t come home often, just knowing she CAN come home will be enough.
So Olivia and I went away for the long 4th of July weekend. I took Friday, July 2nd off work and we went with my mom and my nephews to Battle Creek, Michigan for the weekend. We had great fun (though, seven year old nephew is a raging brat) and it was nice to just be for a bit.
But Lyss wasn’t there. She had to work that Friday and then planned to spend the weekend hanging out with friends. She was missed.
I felt like that weekend was a precursor to the coming months when she’s away at college. She will be missed.
Life will go on. Olivia and I will continue to do things together and Alyssa will come home and seamlessly fit back into our lives while she’s home but things will never, ever be as they were even a few months ago.
And yes, there are my FEELINGS again. They bubble up and threaten to erupt. I feel them and let them simmer and they calm down to manageable proportions.
We’ll be fine. It may be rough here and there but life is about change and embracing the new and exciting things that come your way. We’ll miss her but we’re so happy for her and there you have the push and pull of growing up.
Yes, I have FEELINGS about this. However, I understand her reasoning for moving to College Town three-ish weeks before classes start. She wants to find a job (she plans to work about 15 hours a week) and just get settled in before school starts.
I get it. But yes, there are those FEELINGS. Those FEELINGS though, are mine to deal with, not hers. I want her to fly free and enjoy this time. I want her to embrace her freedom and her youth and wring the joy out of it all.
Her best friend is going to the same College Town and I’m so happy for them to be there together.
We’re going to miss her but remember, College Town is only an hour away. And even if she doesn’t come home often, just knowing she CAN come home will be enough.
So Olivia and I went away for the long 4th of July weekend. I took Friday, July 2nd off work and we went with my mom and my nephews to Battle Creek, Michigan for the weekend. We had great fun (though, seven year old nephew is a raging brat) and it was nice to just be for a bit.
But Lyss wasn’t there. She had to work that Friday and then planned to spend the weekend hanging out with friends. She was missed.
I felt like that weekend was a precursor to the coming months when she’s away at college. She will be missed.
Life will go on. Olivia and I will continue to do things together and Alyssa will come home and seamlessly fit back into our lives while she’s home but things will never, ever be as they were even a few months ago.
And yes, there are my FEELINGS again. They bubble up and threaten to erupt. I feel them and let them simmer and they calm down to manageable proportions.
We’ll be fine. It may be rough here and there but life is about change and embracing the new and exciting things that come your way. We’ll miss her but we’re so happy for her and there you have the push and pull of growing up.
Wednesday, July 7, 2021
You Know What I Hate?
Corn on the fucking cob.
I hate it so much. The only good thing about corn on the cob is eating it.
The rest...sucks. It sucks so, so much.
My mom called me one random Tuesday and asked if I'd been to Wal-Mart that day. I had. She asked if I'd bought any corn on the cob. I hadn't.
She was surprised because it was on sale. 20 ears for a dollar. OMG! Really? Like wow.
But, I surmised, it wasn't shucked was it?
She confirmed that it was not shucked.
Big surprise.
Guess what? I HATE shucking corn. I hate it so much. I hate it with the passion of a thousand suns. All the unshucked corn in the entire world could disappear and I wouldn't be sad.
I hate it.
I also hate cooking corn on the cob.
But it's so easy, you say.
I know! I know how easy it is to boil the stupid stuff. But I still hate it. I hate it almost as much as I hate shucking the stupid ears.
Guess what else I hate. I hate cutting the corn off the cob. Gues who my kids prefer to eat their corn on the cob. Yep, they prefer to eat it OFF the cob. Guess who always has to cut the fucking corn off the cob. It's not Tom who usually does the cutting, is all I'm saying.
So after telling me about the Walmart sale of unshucked corn on the cob, my mom offered me some of the corn she'd purchased.
I declined that day, saying it was Tom's birthday and so I already had dinner planned.
So she suggested I go to her house the next day and get the corn.
FINE, I'll get some stupid corn from her.
But no, lovely woman that she is, she BROUGHT IT TO US, that very night. Because she loves my daughters and hates me.
So the next day, today, in fact, I shucked that fucking corn (Alyssa helped because she loves me and I bitched the entire time and she thought it was funny that I was bitching about how much I HATE SHUCKING CORN.)
Then I boiled those stupid ears.
After boiling them, I cut the stupid corn of the fucking cobs and my girls had a feast.
You know what? It would be hard to eat corn on the cob with no fucking teeth.
The rest...sucks. It sucks so, so much.
My mom called me one random Tuesday and asked if I'd been to Wal-Mart that day. I had. She asked if I'd bought any corn on the cob. I hadn't.
She was surprised because it was on sale. 20 ears for a dollar. OMG! Really? Like wow.
But, I surmised, it wasn't shucked was it?
She confirmed that it was not shucked.
Big surprise.
Guess what? I HATE shucking corn. I hate it so much. I hate it with the passion of a thousand suns. All the unshucked corn in the entire world could disappear and I wouldn't be sad.
I hate it.
I also hate cooking corn on the cob.
But it's so easy, you say.
I know! I know how easy it is to boil the stupid stuff. But I still hate it. I hate it almost as much as I hate shucking the stupid ears.
Guess what else I hate. I hate cutting the corn off the cob. Gues who my kids prefer to eat their corn on the cob. Yep, they prefer to eat it OFF the cob. Guess who always has to cut the fucking corn off the cob. It's not Tom who usually does the cutting, is all I'm saying.
So after telling me about the Walmart sale of unshucked corn on the cob, my mom offered me some of the corn she'd purchased.
I declined that day, saying it was Tom's birthday and so I already had dinner planned.
So she suggested I go to her house the next day and get the corn.
FINE, I'll get some stupid corn from her.
But no, lovely woman that she is, she BROUGHT IT TO US, that very night. Because she loves my daughters and hates me.
So the next day, today, in fact, I shucked that fucking corn (Alyssa helped because she loves me and I bitched the entire time and she thought it was funny that I was bitching about how much I HATE SHUCKING CORN.)
Then I boiled those stupid ears.
After boiling them, I cut the stupid corn of the fucking cobs and my girls had a feast.
You know what? It would be hard to eat corn on the cob with no fucking teeth.
Thursday, July 1, 2021
It Was Fine
All that worry about my family being dicks was for naught. Everything was fine.
In fact, the graduation party was an unmitigated success. There was plenty of food, there were gifts and decorations. People showed up and stayed for hours.
My mom’s heart even seemed to thaw a bit. Miracle never cease.
We had scheduled the party for 1 to 4. We met the trustee (one of Lyss’s teachers) at 10. He unlocked the building for us and we got started on the set up.
Tom thought it was ridiculous for us to start setting up that early. Ha! Showed him. We were still getting the food out when people started arriving at 12:55.
Yes, of course someone arrived five minutes early. Why wouldn’t they? And obviously it was someone from my dad’s side of the family. Phil is just That Guy.
But whatever. It was fine.
Everything was fine. I think people had fun. I know they ate and talked and laughed and balloons were tossed and children sweated outside on the playground.
Alyssa smiled and greeted her guests and sat with her friends. She ate macaroni and cheese and mingled and Olivia irritated her to no end.
It was fine. It was great even.
In fact, the graduation party was an unmitigated success. There was plenty of food, there were gifts and decorations. People showed up and stayed for hours.
My mom’s heart even seemed to thaw a bit. Miracle never cease.
We had scheduled the party for 1 to 4. We met the trustee (one of Lyss’s teachers) at 10. He unlocked the building for us and we got started on the set up.
Tom thought it was ridiculous for us to start setting up that early. Ha! Showed him. We were still getting the food out when people started arriving at 12:55.
Yes, of course someone arrived five minutes early. Why wouldn’t they? And obviously it was someone from my dad’s side of the family. Phil is just That Guy.
But whatever. It was fine.
Everything was fine. I think people had fun. I know they ate and talked and laughed and balloons were tossed and children sweated outside on the playground.
Alyssa smiled and greeted her guests and sat with her friends. She ate macaroni and cheese and mingled and Olivia irritated her to no end.
It was fine. It was great even.
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