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Summer Swims

16 Jul

Summer break means relaxing in the sun, floating in the pool, and sitting with my feet propped up with a book in my backyard while my kids play on the swingset and I sip Diet Coke. I have a perfect swimsuit tan, sunkissed hair and Tom Petty croons on my radio.

Then I snap my unmanicured fingers and respray myself with bug spray as I fan the mosquitos off my face, adjust my workout clothes and head off to the elementary school for the second time that day, run inside and settle one girl with a cup of orange juice and a bowl of festive potato chips while the youngest slips into one of her five Disney Princess swimsuits and we go straight to the aquatic center for swim lessons.

While I love that she is learning to be comfortable in the water, can submerge herself now and get some wobbly kicks in with support I can’t lie.  I hate sitting in a ninety degree room on bleachers with at least sixty other parents and kids while six sessions of swim lessons all go on in front of us.  The air is too thick for my lungs and I can’t follow conversations with other parents well as between the splashing and staff shouting orders and kids yelling my sensory overload kicks in and I game on my phone.

The minute these kids are done there is a mad dash off to the showers to change and head off to the next camp or pool outing or in our case, home briefly until I dress my other daughter in her handmade (certainly not by me) pool-approved reusable swim diaper and swimsuit to shuffle slowly to the Adapted Program.  


This program may be a bit smaller.  Fewer students and all a one-one ratio of teacher to student.  Fewer parents, but the heavy blanket of air suffocates you still and it is, in fact, warmer an hour later.  But here I can hear and actually have a conversation.  Somehow it’s still the same even though our kids have different needs and swim at a different level.  While it’s easier in some ways, this is still hard.

My youngest took a couple weeks to complete a Red Cross level.  From only wading pools to floating with assistance, not hesitating to hold her breath and go underwater.  My other girl has mastered moving away from the security of the ledge and will walk in the water in the same amount of time.  


The thing is: both of them are learning.  They both are gaining comfort in the water, they are working on their listening skills (even though I had to spend one day of swim sitting backwards in class two when my one girl continued to try to splash her teacher in the face for the laugh.  I reminded her twice it wasn’t ok, but quite frankly her giggle is contagious so I sat backwards so she couldn’t see me bite a smile back.)

This is vital.  They love it.  I love it most days.  Even when I rinse the chlorinated swimsuits and bathe my girls.  But we also like the simplicity of our bug infested back yard.  Excuse me, I’m about to go light some citronella candles and fill up our plastic pool.  Before another round of lessons.  Because I might get to finish that library book before book club meets and I have cold Diet  Pepsis in my fridge.

Thank You Red-Haired Girl

8 Jul

A year ago we met her. And, yes, I can still picture her freckled face and frizzy ginger hair.  To those wondering, no we never met again, but I’m guessing she is making friends with other children that need a smile.

We have yet to go to a new splash pad in the area, but every day when I bring my girls to summer school we are welcomed.  My girl has an entire third grade class (now fourth graders!) that have claimed her as a friend.

How do I know they are her friends?  And not just saying they are her friends?  I see pieces of that love daily.

 On the school’s track and field day she and I stayed late at lunch to finish the Popsicle she patiently devoured even though the bell had rang.  While her class was waiting for the first station we walked down the field and she was motivated by the sound of more than a dozen kids chanting her name and cheering as she giggled and joined her friends.  I half expected a red carpet to be rolled out for her with the star treatment she got.  

Her special helpers introduced themselves to me.  They automatically pair up with her without needing to be asked and just covered their eyes when she became overzealous with the spray bottle.  

And when curiousity struck in the bouncy house, but fear won I could hear gentle encouragement and giggles saying “you can do it!  You’re almost there!” When she didn’t want to leave the cheery yellow air filled room I heard her helpers shout for backup as there was a “Crisis situation” even though all I heard was thumping and laughter.  Another friend asked me if I had one of her favorite snacks as she might come out for that.  And I smiled as they really “get” my girl and upon the promise of mom’s leftover potato chips she came sliding right out.


A trip to Culver’s once meant she was tackle hugged by a friend of hers.  And while my girl is stingy with hugs and has an introvert personal bubble like her mom, that hug didn’t pop it.  She giggled and hugged back.  And his parents told me how much their boy talks about her and how funny she is.  While he took her straight to the soda machine to pick out her drink.

I’ve had a few occasions now where parents have said hello to us and told us their son/daughter has lunch with my girl sometimes. And that that’s their favorite day of the week.  To know her friends talk about her that often their parents reach out to me, just makes me smile.  

So while she might not tell me about her friends, I know they are there.  The little girl at the splash pad reminded me to look for the beauty and love in others.  It’s there.  We need to keep advocating for our kids and allowing them to be who they are.  The friends worth keeping see the beauty in differences.  

And for those of you lucky enough to hear giggles and hug this girl or high five with her when she says her words-enjoy.  She can give you a friendship that has no ulterior motives.  However, you need to know you’ll take second place to Lotso, you know which swing is hers so don’t claim that one, and you must enjoy music and laughter.  I suggest not drinking milk before she does something goofy as it might come out your nose.  I learned that the hard way.

Some Days are Feels

25 Apr

I woke up early today for a medical appointment for my kiddo I knew I dreaded.  As we have been transferring medical care to new providers in our new(ish) house we are revisiting all of their diagnoses.  So every doctor visit requires me to go through a shortened draft of nearly ten years of medical care for my middle daughter and remembering when symptoms started.  It is emotionally and physically draining.  I have to mentally revisit some of my worst memories every time I have to explain her NICU stay, hospital stays, her brother’s diagnosis, surgeries, while I am not only being evaluated as a mother but I am evaluating this new provider.  So today was specialist number five (?) visit of the year where we saw the ENT and confirmed our kiddo needs a tonsillectomy.

We have known this for years.  Her old ENT wanted to wait until she was about nine (and almost ten now) that visit was coming up.  But, no parent wants to prepare for surgery no matter how big or small it is.

She also had an audiology exam as her hearing is monitored with Trisomy 21.  She’s had a small loss, not really symptomatic as I believe she chooses when she wants to listen to us instead of not being able to hear us.  Because it’s her and she has this attitude of “if I don’t want to I won’t” halfway into her hearing exam she chose not to participate.  In all fairness, they examined her by having her repeat instructions and play a game with the student audiologist.  She is nine.  There’s only so many times you can enter an item into Elmo upon command.  The audiologist asked me the dreaded question? “Would it help if you went in the room and helped encourage her?”  Here is where I was stuck.  First, if my girl doesn’t want to do something, there is nothing that will get her to move.  Not the promise of potato chips (her favorite food), not even asking her bear to help.  Nothing.  You could move a mountain next to her and she would sit cross legged on the carpet staring at you with this face.


I had her sister with me as well.  A girl who does not like strangers, who takes the dog to another level of the house if none of us are there so she isn’t left alone.  The girl who I had to sleep next to for the first three years of her life or she would wake up screaming.  The option to bring her in there was futile.  She would be kind enough to help her sister and there would no longer be any listening to the headphones as they would either have a grand time entering toys in Elmo or start throwing them at each other in anger while the student ducked.  Leaving her in the room alone with the audiologist wasn’t an option as I know she would sob hysterically as she couldn’t come with.  So…we left it incomplete and I can reschedule for another time when her siblings are in school and my girl only has me (and I only have one kid to think about).

So I came home from that impending appointment frustrated from the five thousand questions her curious sister asked me as I was driving in downtown Madison (Why is that man not wearing his bike helmet?  Can we get a milkshake? Can we go to Target and get a toy, we were good during the appointment?  Why do we need to go back to school now, why can’t we stay home?  Why is that orange cone there?”  Not to mention my anxiety ridden brain is considering every stage of doom that could happen from a tonsillectomy.  (Logically I understand it’s really okay.  But tell my emotions that).

Then the mail truck came and I got a preordered book from my favorite author.  It made me smile.  And when I turned my phone on to play some music and possibly get some freelancing done one of my favorite songs came on.  And I texted some lovely people who listened to my craziness and assured me, I’m really not crazy, I’m a mom.  We tend to overreact at times.  I might push that to the limits, but I get over it.

And I wrote and was able to accept a phone call from my son’s previous medical supply company and tell them where to go in a polite manner.  They took three months stringing me along for my son’s continuous glucose meter authorization not bothering to tell me what was needed until it was too late to get that information.  When they finally explained what I needed today (what I already knew from reaching out to his doctor’s office and the insurance company) and suggested I call my insurance company to request special circumstances I was able to say “I did.  And you may cancel that order and any future orders as we are now working with another company based on their recommendations.” It was a satisfactory middle finger to my cellphone and left me smiling when I hung up.


So while, I may not always have this balancing thing figured out.  While I may still have my anxiety patterns I also have learned to enjoy the good along with the scary.  My dog and I sat outside and stared at the flowers in my back yard for awhile.  My kids are safe at home, we have food and shelter.  We have medical care.  We have fresh water.  And I have my family.  My husband who after a long day of work is willing to take a walk around the neighborhood with me, my son who will occasionally hug me goodnight, and my girls who climb in my lap all the time for hugs and kisses.  I am freaking blessed.  Not to mention I have this amazing group of followers who share their thoughts and feels with me sometimes too.  I am grateful for all of you as well.  If I can make you feel less alone, then I have done my job.

When She Thinks I’m Not Watching

17 Apr

A fenced-in backyard is my version of heaven when it comes to our outside time.  We used to have a long, thin backyard that faced my neighbor’s driveway.  Without a fence.  Or any feeling of privacy.  And safety?  Forget about it as I had to watch my girl like a hawk.  She loves to explore and swing and thought nothing of walking through the yards to get to someone else’s swingset.  Our front yard had a sidewalk, but it was directly connected to a busy street.  That she had started walking down a few times when I was out walking solo.  She can sneak out a door as silent as an ant.  As much as I love the outdoors I hated outside time.  I couldn’t relax in my own yard.  

At nine most parents can let their child play solo in a yard and not be worried.  When you have a child with a cognitive disability you cannot.  While I think she understands much more than she leads on, she’s also incredibly stubborn and headstrong.  (I have no idea where she could have inherited those traits, by the way.  It certainly could NOT be from me.)

So when it came to the house replacement a fence and a quiet yard was priority.  If we didn’t have it already we made a pact to budget for one put in immediately.  Luckily the house we fell in love with had a huge yard with a privacy fence.

It is amazing.  Either one of my daughters can go outside and swing or build sand castles any time they want.  They now realize they can go even if I don’t want to. I can sit in my indoor screened porch and read.  Without needing to keep an eye on their every move.  We wrapped bungee cords around the gates so it is still easy enough to open the gate, but will slow her down if she tried to wander off. 

So she puts on her outdoor shoes and goes outside to swing daily.  If her sister is with they sometimes play together.  Often they swing in tandem, each facing opposite directions on the swings they decided were there own.  Unless there’s a moment like this where my sassy one chooses both.


Or I’ll see my youngest sitting smack dab in the middle of the sandbox.  And when her sister protests it’s by throwing a shovelful of sand at her head.  Bear in mind, while Mom ducked in the house to use the restroom I walked out and caught her sister dumping a pail of the same sand over her head.  Fair is square.  In reality I am reminding them this is not behavior that is okay.  Internally I have the giggles, because I love that they retaliate secretly and evenly.

However, the sassy one has discovered Mom and Dad periodically go inside when they are outside.  What she doesn’t realize is that we are STILL watching.  Within thirty seconds of being left alone outside my spunky girl will be over in the area where our previous house owners had an above ground pool surrounded by landscaping rocks.  Apparently, she believes these rocks need to be in front of our shed as she plops herself on the ground and starts throwing them one by one towards the shed.  If she’s the first one out the door she aims for the rocks, but quickly does a ninety degree turn to the swingset  when she hears the screen door open and knows she’s no longer alone.  She knows she isn’t supposed to.  But the instant she thinks we don’t see her… to the rocks she goes!

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.

 

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.

Mom Dresses

20 Feb

I have an occasion I need to dress up for coming up.  

I don’t dress up.  I’m a stay at home mom/writer.  My version of dressing up is a sundress in summer sunshine or a pretty tunic with my LuLaRoes.  And no, I’m not going to buy a Carly and call it good.  I’ll admit, I briefly considered a solid Nicole as formal enough, but came to my senses quickly.

My last formal dress was worn at a wedding when I was pregnant with my youngest.  I do believe I still have it, but I doubt it fits.

I have three kids.  And I never lost all the pounds I gained with my fourteen year old, so that leaves me in the challenging department called Plus Sized.  There are considerably fewer options for us larger ladies.  

I’d be set if I wanted to dress up as WonderWoman for this event.  While Store A didn’t carry the formal cosplay dress in my size Store 3 did.  Noted for when the movie comes out this summer.  I could play dress-up with my youngest.

However, while lovely, Wonder Woman’s dress isn’t suitable for a gala.  And while I’m not in my twenties anymore, I also found myself horrified to see another store claiming these are good options.


No.  Absolutely not.  Nothing with a jeweled jacket or a giant flower pattern is appropriate for my age.

I learned that in the entire mall I could not find a single thing.  The dresses felt too young for me or too old for me.  For the love of Pete where are the pretty dresses in my size?  One without a cartoon character, giant flowers or attached beaded jacket?  Where?

And I know I’m not alone.  Statistics say most women are a size 16.  SOME dresses are made in that size.  But it’s a smaller size 16 because it’s not cut for a “mom belly.”  

So off I trudge to try again or (eek) try an online dress and hope their measurements match up or pray for a good return policy.  On the brighter side my FitBit congratulated me on a job well done.  Maybe I need to find the shoes before the dress.

Or raid my kid’s closet?