Archive | March, 2017

My curvy girl 

30 Mar

Today I took my daughter to the 5/12 doctor visits we have scheduled within a three month time span.  She went straight to the scale and pulled off her shoes, backed right up to check her height and picked up the crummy hospital gown and shorts and put them on, though she refused to let me tie them.  That resulted in giggles as she walked across the room and her drawers went straight to the floor.

But I also love this expression as she waited for this specialist to see her.  Even Lotso slumps over like “again?  Really?” 

Having a kiddo with Down Syndrome means you often have some medical issues to go with it.  We have seen cardiology, orthopedics, endocrinology, audiology, ENT, opthomology, geneticists and many, many visits to her pediatrician, not to mention horrendous labs and X-rays.

But recently we moved.  Well, six months ago, but we didn’t get established with this medical facility until 2017.  Once she met her new pediatrician we got the list of referrals.  

New clinic means new specialists.  And it means that I tell her story to a new doctor every time.  Sound like fun?  Not unless you’re having a giggling session with the sweet girl who patiently waits to say “hi!” to another doctor.

Today was her scoliosis specialist.  Back when she was five she was diagnosed with a mild-moderate curvature.  And we ended up with…the back brace.  She hated it.  She cried.  She pulled it off.  We duct taped the Velcro straps to keep her from removing it.  We put zippered footie pajamas on backwards over it to keep her from slinking out of it.  Finally, thankfully she outgrew it.  And her dad and I weighed the pros and cons.  We decided it wasn’t worth the torture it put us through (they are NOT designed for a non-potty trained child).  


I felt guilt.  Every day,  hoping that that choice was the right one.  Knowing she was comfortable and playing contentedly made it so much better.  But I still felt guilt.  Because I’m not a medical professional.  And what if my choice was hurting her more.

So today, after a long discussion where my husband and I agreed still we didn’t want to put her through that when she can’t understand WHY we’d put her in that, I braced myself for a new doctor.  I was ready to plead and ask for any other solution.

So, to my relief, this provider said “no.”  He said even if she was a newly diagnosed patient he still wouldn’t.  And I could have cried.  And I laughed saying “Good, because I was prepared to argue against it.”  And we both smiled as he said he’d rarely dispute a mom’s theory.  

So we are still watching it.  We will still do X-rays and see them again soon.  Until then we will continue to meet and explain our girl’s story for the thousandth time.  But…I have providers that work with me, listen to me and have giggling episodes with my kids.  For that, and a million other things, I’m grateful.

Relax…

29 Mar


The sun basking me with warm rays of sunshine, the waves crash gently on shore, my toes buried in the white sand and my pockets full of seashells.

If I try really hard I can see it. If I try harder I can hear it.  A few birds cawing, in the distance the pier crowd squealing.  

Bliss.

If I brush back my hair I can feel is stiff with salt, a gritty texture stuck in curls that my normally straight hair feels.  I could feel the sand stuck on my skin, shining with an almost glittery texture that smells faintly of coconut.  In one hand is a cup cool and sweating to the touch, I rest it on the blanket under me and turn the next page of my paperback in my left.

Alas, I did not vacation on spring break unlike quite a few of my Facebook consorts, but somehow I always manage to convince my friends to take photos or videos of the ocean for me to feed my soul.

I’m a beach girl at heart.  One who ironically lives nowhere near the ocean and will not step foot into any lake that isn’t clear so I can avoid the slithering feel of seagrass or fish touching my legs.  I shudder at the memory of that thought.

Telling a person with anxiety to relax just doesn’t work.  It’s not a switch I can flick and suddenly stop pondering what my children’s next medical specialist might say or something else not worthy of wasting my time thinking of. 

Thankfully I have tools:

1.  I walk.  It’s better without my dog yanking on my arm or him pulling tight because even though he’s 8 years old he acts like a puppy in the excitement department.  However, if I walk without him I then feel bad contributing to his separation anxiety and I feel so awful when I hear the sharp cry of him being stuck alone.  

2. I write.  Sometimes it’s just being able to type notes or story plots or blog post pieces in my phone.  Sometimes it’s a letter thanking someone.  On a good day I might actually be able to concentrate to work on a novel.  

3.  I listen.  Usually spa music will relax me.  I can close my eyes and hear the trickling water of a fountain or picture those ocean waves splashing at my feet.  Sometimes I fall back to a white noise app and listen to rain on a tarp.  That reminds me of camping as a child and listening to the rain fall on the canvas of my parents’ pop up camper.  

4. Sometimes I need touch to relax.  I love textures, especially soft feels and if you’ve never tried a weighted blanket try it.  I wanted to keep pieces of my children’s baby clothes to feel the memories, but not locked away in a plastic tote.  I wanted a quilt.  And bless my mother, she willingly took on that job for me when I asked and completed this amazing quilt that completely wraps me in love.  


Even though we didn’t put weights in it, there is filling and the fabrics are heavy, so it does feel as heavy as a weighted blanket.  It hugs me, I can fidget with buttons, fleece, ribbons, lace, flannel, denim.  And it smells slightly like my parent’s wood burning stove.  I can see my mom in her chair with a pillow under her left arm, a cup of coffee on the table next to her as she pins together these pieces, some of them pieces of clothes she had given my kids as gifts.

So when my brain craves the ocean I know I need to pull out my tools.  I need to turn on the meditation music, wrap a quilt around me and just breathe.  My brain tells me way too often that I need to do everything right.  When I know logically I never can.  And it’s really okay not to be perfect.  Not perfect is beautiful.  The sea knows this and reminds me.

 

Balancing Life

21 Mar

 When my youngest is at gymnastics I sit on a cold metal folding chair and I watch her on the balance beam.  I can see the determination in her face and see her arms out as she wobbles a bit, then catches herself a step in and refocuses.  Now and then she slips.  But most of the time, she catches herself off-balance and continues on.  Her teacher follows a step behind when she is on the high beam, allowing her to find her own strength and balance, but there in case she were to freeze or fall.  

I balance all the time.  I wobble more than she does when I walk.  I haven’t worn heels since I fell in them and cracked my elbow.  I’m still not sure why it’s called the funny bone.  I balance in my running shoes now.  Between keeping my house clean and spending my much-needed free time exercising and writing.  Staying in to watch another episode of Caillou with a five year old on my lap or going to a Yelp Event with a friend.  Going out on a date with my husband, or catching up on the sleep I miss throughout the week.  Between researching more services we need and just going to Culver’s and eating ice cream.

Some days I balance better than others.  Some days I can smile, I can laugh, I can make those phone calls and doctor appointments easily.  Some days all I can picture is a potential hospital visit for a child and my “fight or flight” response kicks in.  I freeze.  I stare at the neon Post It list of “stuff” I need to accomplish and push my chair away from my desk.  I find my blue running shoes and go pound the path with the steady rythym of my steps. Or I put in headphones and go hunting for my favorite feel-good songs and crumple into the feels of those songs.  Or I open the pages of a book and immerse myself in someone else’s life for awhile.  I feel the clinking of my bracelets reminding me of everything.


But then I refocus and I make those phone calls, I schedule visits with specialists, I ask for help and spend six hours in my van to steal a night away with my husband where I can dress up and feel like the fifteen year old girl he asked out years ago.  I can wear a fiery red dress and heels and feel my legs ache from the hill I walked a few hours before.  I can fill my tub with hot water and turn on the jets, closing my eyes for a few minutes just listening to the pounding of the water.  

I might not be graceful always on my walk.  I might sometimes close my own eyes and repeat the Serenity Prayer or look at my bracelets for inspiration.  I might text someone close to me for just a single boost.  But I continue.  And I make it.  I wobble, I catch myself.  I feel my family and friends a step behind, ready to hold their arms up if I need them.  

But just like she does I continue.  Because that’s what I do.  I breathe.  And repeat.

Bring Back Mail

17 Mar

Today I returned from taking my overzealous dog to yank my arm off or choke himself on his leash to sniff and pee in spots, or a “walk” according to my FitBit to pause at the mailbox.  Typically I get a pile of the usual:  local coupons, a credit card offer or a medical bill.  Or on a really good day there’s an Amazon box on the steps.  Granted that holds diapers or Chlorox wipes, but that’s better than a bill.

 But today was magic.  I saw her handwriting first and instantly smiled.  

I knew inside was a letter.

I, like many others depend on email and social media to keep up with friends and family.  I text friends or family and even begrudgingly call now and then (because if you know me you know I don’t do idle chit-chat).

But these letters have a history.  My childhood best friend and I were instantly attached, both being shy bookworms and the only girls on the block. We shared dates with our Cabbage Patch dolls Kelly and Cassandra, we built tipsy sandcastles with rusty Tonka Trucks and plastic shovels in the sandbox .  We laughed often and we were almost always at each other’s house, unless we were spending the day fighting.  Those days we would each sit in our own back yards until dusk, sneaking glances at the other one and pouting until one of our older brothers took pity on us and ended the fued.

And then when I was in second grade I sat on the cement stairs by my front door scratching a scabby knee and cried while watching her family drive away in their wagon, waving until I could no longer see the car.  

While some friendships would end, ours just changed.  We wrote letters.  I’m talking multicolored pens and notebook paper novels about our daily life or challenges or experiments with writing.  We’d mail Christmas and birthday gifts to each other.  When she taught in Japan I would get beautiful origami paper letters sent to my college dorm room.

There was nothing better than seeing her handwriting on an envelope.  This woman has known me since she was born.  We both spoke French at one point, we both spent hours writing novels we (well, I) never finished, we took Creative Writing courses in college, and every time we meet or write we learn new pieces of each other’s lives and sometimes our own.

The letters are not penned as often now.  Sometimes it’s a Facebook post or an email, just a quick message to let the other one know we were thinking of them.  But my entire body sighs in comfort when I sit down with a fresh notebook page, choose my color of ink and write the magic words “Dear Sara.”  Or, even better, seeing my name on an envelope in the mailbox.