Why I Drink

Sure. We all go through it. The nightly hijacking of our adult time by the terrorists among us: our offspring. Think that I have any more sympathy for mine just because they have medical issues? Think again...

Night Noises: A One Act Play
(inspired by the hit children's story 'Go the F*** to Sleep!')

by: Ashley Fuchs

Dedicated to: my children, without whom, I would have time...and a life...

The Cast:

Mom: Ashley (Me)

Daughter: Eldest Rubber Duck

Son: Youngest Rubber Duck

Dad: Mr. Ashley

The Setting: A typical bedtime routine on a school night, 20 minutes past bedtime and just past the point where my patience has run out…

[In Son’s room]

Mom: “It’s past bedtime, so it’s time to tuck you in. Do you have your wrist braces on?”

Son: “No.”

Mom: Sigh…"The ones you wear every night? That you should know you need to have on by now? Where are they?”

Son: “I dunno.”

Mom: Turns on light. “Well, help me look for them.” Found under the bed with about seven balled up socks. “How did they…? Nevermind. Good night. Sleep well. Do you need anything?”

Son: “No”

Mom: “OK. I love you.”

Son: “See you in the mor-ning!”

Mom: “See you in the mor-ning!” Steps out of room.

Son: “Mom!”

Mom: “What?”

Son: “I need water.”

Mom: “I just asked you that. You need to get it before we get into bed. It’s too late now. Good night…”

Son: “I NEED WATER OR I’M GOING TO GET DEHYDRATED AND GET A MIGRAINE!”

Mom: (Grrrrrrrrrrr): Get.it.yourself. I have to put your sister to bed and sit down for five minutes tonight.

[In Daughter’s room]

Mom: “OK, hon, it’s bedtime, so put down the book and…good LORD how did your room get this messy? Anyway, did you brush your teeth?”

Daughter: “No.”

Mom: “It’s 9:00! I sent you up to do that an hour ago. Get it done…and remember to wash your face and put on night cream so you will have nice skin…”

Son: “Mom?”

Mom: “Go to sleep, Son!”

Son: “How come she gets to stay up later than me?”

Mom: “I’m closing your door…”

Son: “No!!!”

Daughter: “I’m finished!”

Mom: “Great. I was just watching your fish swim around while I waited. Did you remember to feed him?”

Daughter: “No…”

Mom: Gathering chi, counting to three. “If you don’t feed your fish, then it won’t live. Let’s do it now.”

Son: Leaping out of bed “I want to feed mine!”

The children feed their fish, peppered by minor arguments over who gets to go first, etc. Finally, everyone is back into their own beds with the lights out.

Mom: “Goodnight, Daughter. Do you have your wrist braces on?”

Daughter: “No.”

Mom: Losing it…“REALLY? ‘Cause I seem to remember that’s something that you have to do every damn night! Where are they?”

Daughter: Looking at a pile of clothes next to her bed. “Um…”

Mom: “OK, I’m out. I haven’t sat down all day. You find them and turn your own light out. I love you…very much…”

Daughter: teary “How come Son gets a better tuck in than me!”

Mom: Sigh…”Because it’s 9:20 pm, and you should have been asleep 30 min ago.”

[In living room]

Mom sits down with Dad, who has just finished washing the dinner dishes and walking the dog. A television program is on.

Mom: “So, how was your day?”

Dad: “Well, actually…” Footsteps are heard on stairs. Both parents freeze. “Who is it, and what do you want?” Dad says in a not-inviting voice…

Son: (in a small voice) “Mom…?”

Mom: Dropping her head in her hands. “What.”

Son: “My hip hurts. I need tape.

Mom: “Yeah, your hip hurts, Son. You tried to ride your scooter down a hill and fell off, pulling your groin. You probably subluxed it. I offered you ice and you refused. You need ice.”

Son: “Can you tape it?”

Mom: “I will tape it in the morning. Do you want ice? It will make the swelling go down and make you feel better so you can sleep.”

Son: “No.”

Mom: “Then go to bed, and don’t come down again.”

Two minutes later…

Mom: “Son! I said not to come down again!”

Daughter: “It’s me.”

Mom and Dad: “What are you doing out of bed?!”

Daughter: “I need ice. My knees and ankles hurt from ballet.”

Mom: “Why didn't you do it when you came home from ballet like I suggested? It’s 9:40! You need sleep! And I need to have some time with your Dad that doesn’t involve the two of you!”

Daughter: “But Mom, I’m just trying to do what you said to do when I hurt!”

Mom: Walking to the kitchen. “This is why I drink.”

End scene.

Why I Heart Kinesio Tape

Two important takeaways in boosting your child’s self image in the face of chronic medical issues: watch TV and lie.

OK, hear me out.

I lost my dignity a long time ago. I think it was somewhere between being naked in a room of people while I suffered 16-33 hours of pain through two childbirths, walking around for the next 5 years with “questionable” white stains all over my clothes (Spit up! It was spit up…), and then running the gamut of public parenting (I see the judgmental stares…I know they are cute, but they still deserved to get yelled at…). So, when being a “responsible” connective tissue patient meant making even more changes to my life, I was ready. Such as, wearing a fanny pack so I don’t put any pressure on my traps by carrying a purse. Done. I rock it (see skull fanny). Or, wearing flat shoes so I can wear orthotics. Two words: ankle boots. I pull around a wheeley-bag (leopard print), sport circular hickeys from cupping sessions (thanks, Gwenyth, just…stop talking, OK?)

The Big G "Consciously Uncoupling" with reality

My TENS unit is disguised by most cardigans, and when I wear my black wrist brace, I wear a long black sleeved shirt so it looks like an “arm warmer.” Making EDS fashionable has become my personal mission.

I have to admit, that I have been stumped by the phenomenon that is Kinesio tape. If you’re unfamiliar with this product, it is simply a miracle. I don’t know how it works, but here is an awesome article about it. What I do know from my own experience, is that for the myofascial pain of tendonitis, trigger points and other such pains that come with the EDS territory, taping can bring near complete relief in minutes. My children love it, and rather than feeling helpless when they hurt, I can give them a giant muscle band-aid. Once you learn how to put it on, it’s easy to DIY, and it stays on for days, which is great for your paycheck…not always for your wardrobe. I have walked out of the house more than once in a Maxi dress for a night out only to realize that I had bright blue tape on my neck and shoulders. I tried the nude one for a while, but sadly, it stinks. I have crowd sourced my PT office, and the color that lasts the longest is blue, so set your expectations now.

My daughter did not like wearing her tape in public that first time. It was summer, and we were at the pool. Lots of people asked her about it, and she decided that price was too high. One night after that, we were out ordering dinner, and the cashier noticed the tape on my arms. “Cool,” he said. “What sport do you play?” At first I wasn’t sure what he was talking about. “That stuff – I’ve seen it on TV during the Olympics, right? What’s your sport?” Without missing a beat I said, “Beach volleyball.” My kids smirked behind me. “Oh yeah? That’s awesome. I could tell – you look like an athlete. Well, here’s your food.” I look like an athlete? Nice!

Me, right before we creamed Germany in 2012

I’m not sure what lesson I taught them, but after that, she wasn’t as embarrassed to be seen in her tape. Maybe the lesson was that not everyone is looking to hear our sob story, and that she is not obligated to tell it – that it’s OK to go with the white lie from time to time, especially when it helps us focus on the best part of ourselves. My kids are athletic. They will be able to truthfully talk about their own sports: ballet, soccer, horseback riding, hip hop, and wherever else their heart takes them. Even if they were taped from just waking up in pain, they can choose to focus on their inner Olympian. 

I too had been athletic when I was growing up: dancing, swimming, yoga, but not knowing that I have EDS for so long has caused me a lot of injury.  They won’t be like me, I’m doing everything I can to make sure of it. I think life has been better for my children’s generation that it was for mine: back then we picked on the fat kid, the asthmatics, the four-eyes, and God help any child who had to use adaptive equipment: social suicide. Now much of the anti-bullying rhetoric is working. My children have sported glasses, retainers and braces on their teeth, back support pads, orthotics, keyboards for writing, Kinesio tape, ice packs, ankle, knee, and wrist braces, and not one kid has ever teased them for being “weird.” They will grow up in a world where people are learning how to take better care of their body, even if it means you look a little silly sometimes.