motherhood

The Magic of Listen To Your Mother

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A fellow childhood cancer/Shave for the Brave momma introduced me to Listen to Your Mother in 2011. She participated in a show (I think it might have even been the first one in her area) and was always posting about it. I kept seeing it in her facebook and instagram feeds so one day I asked about it. She told me what it was and knew that I was beginning to blog, so she encouraged me to submit a piece. Yeah, right!

My #oneword for 2014 was risk. I took a huge one and “auditioned” for the first-ever Listen to Your Mother show in Metro Detroit. I was accepted. I read in front of 400 strangers. For five blissful and completely uninterrupted minutes I got to share my story, Luke’s story. There was a literal and figurative spotlight on childhood cancer. And, I was held. Part of the magic of LTYM is that there’s no judgement. No judgement if you ugly cry (I did in rehearsal), no judgement if you curse, no judgement over content, delivery or tone. You get to own a stage and share your story. It is completely invigorating and uplifting. LTYM helped me heal a little and it gave me more confidence as a writer.

LTYM is also scary as hell. Although blogging is very public, our words and thoughts are very private. Sharing them with the world is risky and deep down, most writers are deeply insecure.

Yesterday was the second annual LTYM show. It.was.awesome. St. Andrew’s Hall was jumping! That place was electric. And the readers and their stories were amazing. They ranged from humorous to dark, gut-wrenching to hopeful. It is an honor to bear witness to such raw emotion. I remember how absolutely terrified I was last year. I was glad that there was a full audience to support me. I am grateful that I was able to go yesterday to support this year’s group. That’s part of the magic, too. All of a sudden you are in a vulnerability/motherhood/writing/performing group that you never knew you always wanted to be in. And it’s not like the clique of plastics in high school. It’s real people. It’s your people. And, you are a member for life.

This morning I commented on the facebook page of one of this year’s performers. I said “Your piece was raw and powerful. Thank you for sharing.” She wrote back to me that my piece from last year was the one that she kept going back to for inspiration.

Wait. What? What the heck? Holy bananas!

First, what a compliment.

Second, that is very humbling and gratifying. That is why I write (I think it’s why most people write) I hope that what I put out there resonates with others. Writing also helps me feel less alone. In LTYM-speak, it’s called the “me, too” moment. Someone shares something from deep within themselves that takes your breath away and you say, “yeah, me too.” This year’s show gave me many of those moments. Very grateful.

Third, thank you for sharing that. That is something else about LTYM. You connect with other writers, bloggers, and artists, and your shared risky experience makes you feel like you know each other and then you take care of each other. She did not have to say anything back to me. I certainly wasn’t expecting her to.

Fourth, let’s spread some of that love around! Writing is risky. Auditioning for something (whether it’s LTYM or something else) is incredibly risky. It’s putting your heart and soul out there hoping and praying that it will be cared for. If there is a writer in your life, support them. Read their stuff. Don’t be stingy with love and praise. All the feels people! ALL the feels!

There are two more weekends of LTYM performances. Do yourself a favor. See if there is one in a city near you. Then, go and listen. Be moved. Be inspired. And then, call your mother.

This is my 39

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I am 39 years old. The big 4-0 is coming in April and I feel…excited, nervous, proud, grateful, nervous. I’ve already started thinking about what I want to do to celebrate the big day- Vegas? Key West, Pentwater, Atlantic City, Traverse City?

And yes, I will celebrate. 40 doesn’t scare me. Many are denied the privilege of growing old. I’m here, so I am going to make the most of it.

Inspired by some friends who have recently posted about their big days, I give you “My 39.” In no particular order.

  1. I have a bite guard. Good thing Justin Timberlake already brought sexy back, otherwise I would give him a run for his money. It helps me sleep and I no longer have a popping jaw. So, turns out that rotten dentist was right, I needed it. Knowing how much it costs, I guard it like the crown jewels. I even use that retainer case they gave me. Cause, you know, I’m really 8.
  2. Reading glasses. I’ve had these for 4 years now actually, courtesy of being a doctoral student for five years. But I need a stronger prescription for up close reading and I think I might benefit from bifocals. I wear my glasses all day at work. When someone comes into my office and I look up at them I can’t see them because they are far away. When I get up out of my chair and walk around the office or building (need to do that more. I am 39 after all) and forget to take my glasses off, I run into things. The alternative is one of those chains that hangs around your neck. I’m 39 not 79!
  3. My cardio for the week is walking to the other section of our building to get chocolate to wake me up at 230pm.
  4. My husband and I need to make a will. And, I want to do it. I have the name of a lawyer all ready to go. Just need to call.
  5. When the quarterly reports from my 403b retirement plan come in, I read them.
  6. I voted yesterday. I always vote.
  7. I am seriously considering botox or some sort of filler for my crow’s feet. 40th treat to myself?
  8. My hair is about 80% gray. I am too young to have as many grays as I do, so I dye it myself.
  9. Because I have two children, a mortgage, car payments, blah blah blah, I dye my hair myself. I don’t have the time or money to get all over color and low lights every six weeks. Thanks, Garnier Nutrisse!
  10. Related to above, I saved all of my Aveda Pure Privilege points to cover my most recent haircut so I could use cash to buy products.
  11. Also related to above, I have needed conditioner and control paste for two weeks. But I went through every travel size bottle of stuff I had and squeezed out the old hair goop from the pump before I bit the bullet and paid $80 in product.
  12. I haven’t had a functional umbrella in over two years. My husband just bought me one to use because it was snowing/sleeting on Halloween.
  13. I want a tattoo. Have the font, color, location all picked out. Don’t think I can do it without passing out though.
  14. My grandmother is 94. I know she will not live forever. When the phone rings, I fear that it is my mom telling me to come home because she died.
  15. Ch-acne. Blerg. (if you don’t what that is, look for Tina Fey’s AmEx commercial.)
  16. Mammograms. There is a correlation between my son’s cancer diagnosis and my increased risk of breast cancer. I have had three mammos already. They are not that bad. Although, I am guessing that the machine was invented by a man.
  17. Red wine. I prefer red wine over beer. Beer makes me too full and then you can’t drink as much.
  18. My feet and hands are always cold. I wear socks to bed and I tuck the bottom of my pjs into my socks so there is no skin exposed.
  19. I never carry cash. In an emergency, I “borrow” it from my son’s piggy-bank.
  20. I am turning into my mother and I am ok with that. It is a 12 hr car ride home to NJ. When we take rest stops, I actually make my sons run around to “get the willies out.” It helps them stop “acting all rammy.” These are things she said to us growing up. They are true and the best words to describe these feelings/actions.

What’s your 39 look like? I’d love to hear!

The Limbo of Maybe

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Last week L came to us and told us that he had a painful bump on his jaw. It was a hard, pea-sized bump on the right side of his face. My first thought was “It’s back. It’s back. He’s relapsed. We have to do it all again.” This is always my first thought when something happens with him. It will always be my first thought.

Maybe it’s nothing. It’s probably nothing. But given L’s history, we no longer have the luxury of nothing. We live in the maybes. Maybe it’s back. Maybe it’s a secondary cancer. And so, it must be checked out.

I called our pediatrician and requested an appointment. Our doctor was on vacation. Oof. Our back-up doctor was also on vacation. Double oof. If I wanted someone to see him that week, it would have to be with a new person. Great. I get to tell the whole story to a stranger and answer questions I have answered 1,000 times before. I get to explain, again, why it is so important that s/he examines him thoroughly, that s/he looks everywhere, for everything and if there are concerns they need to tell me. Now. If I wanted L to be seen that week, the new doc was my only option. I made the appointment.

Then, later that morning, in the back of my mind I remembered that our babysitter took the boys to their dentist appointments in July (best babysitter ever) and that L had a cavity that needed to be filled. It’s like in the cartoons when the word bubbles are floating around people’s heads. And he has a huge canker sore. On the same side as the pea-sized bump. I call the dentist. What side is that cavity on? (Poor dental health is just one of the side effects of all the chemo he got, but that’s minor compared to the alternatives, right?) And now my mind is in overdrive. Spinning with possibilities, holding on to the prayer that it’s not cancer, again. YES! The cavity is on the same side as the bump and the canker sore. So, odds are it’s just a swollen lymph node or an abscessed tooth. Wahoo! I’ll take it.

 

It's JUST an abscessed tooth!

It’s JUST an abscessed tooth!

We go to the dentist a few days later. Thank goodness for our dentist. I really like him. He is thorough and kind. He is also a parent and he knows L’s history, so he gives us a lot of latitude. He lasers the canker sore (very cool, didn’t know they could do that. And we got to wear sunglasses while he was cauterizing L’s gums) but he thinks the bump should be checked out. Our eyes meet over L’s bony body that barely fills the reclining dentist’s chair. His mouth is covered by his mask so I can’t see his lips moving. But my eyes are searching, pleading and he knows what I am really asking. “I think it’s nothing. Odds are it’s the lymph node doing it’s job. But, this is not my area of expertise and given his history, I think you should keep the doctor’s appointment and get it checked out.” My stomach drops to the floor. Given. his. history.

We go to the new pediatrician the next day. She is ah-mazing (thank goodness!). Not sure if the triage nurse who made the appointment told her about L’s history, but the Dr. had read his chart. I didn’t have to tell the story, again. She knew most of it. And, she was very, very thorough. “I think it’s nothing. It’s not hot, red, he doesn’t have a fever. If you want to do bloodwork we can, but I don’t think it’s necessary. If it gets bigger and/or doesn’t resolve in two weeks, come back.”

wwwwhhhhhheeeeewwwwww. How does the world not hear the air decompressing from the balloon that has filled my chest for 48 hours?

Scare over. It’s not cancer. It’s a lymph node. He’s fine. (Almost a week later now and the bump is almost gone.)

Maudlin? Dramatic? Over-the-top? Yes. Yes. And Yes. And, completely exhausting. But that doesn’t make it any less real.

This is our life. We live in the limbo of maybe. Equally ripe with potential and dread, freedom and fear, reality and worst-case scenario.

This spring I read Lily Koppel’s book The Astronaut Wives Club about the Mercury and Apollo astronauts and the Space Race. Buzz Aldrin was chosen to be part of the crew that would make the first moon landing. In speaking about the months leading up to the actual launch, his first wife Joan said, “It was normalcy tinged with hysteria.” Yes! This! This is what I feel like as parent to a childhood cancer survivor. It is vigilance and paranoia. On the outside, everything is fine. Normal. He survived. We survived. We are…unscathed. But just beneath the surface is maybe.

Some days are better than others. Some minutes are easier than others. Most of the time, the duration of my freakouts is short. But, other days, not so much. I know too much. In the week that I waited to post this, a fellow Rhabdo mother posted that her daughter relapsed. The cancer is everywhere. The odds are not in her favor. Some of my 46 Mommas friends have children who are still in treatment, while trying to go to school. They have missed the first day of school because of fevers and low counts. Others have orthotic leg braces ordered & ready to go, but cannot pay for them because insurance won’t cover it.

It’s never over. The maybe lingers.

As September approaches and the childhood cancer community asks for your support, I hope that you will be moved. Moved to do something. Paint your nails gold, make your facebook profile picture a gold ribbon, donate to a childhood cancer charity, make a meal for a family, pray for families who are grieving. We need you. Help us turn “maybes” into true “nothings.”

Thank you.

Gold Ribbon

September is Childhood Cancer Awareness Month