Dandelion Wishes

12 May

I happen to celebrate my anniversary right around the same weekend as Mother’s Day.  This year being our fifteenth my husband sent me a beautiful arrangement of flowers, a total surprise as often if there are flowers in my house it’s because my youngest, the lover of all things she finds pretty, usually asks him to buy some for Mommy.  

While my bouquet sits on my dining room table and I smile when I read the note he sent, or stop to smell the daisies, she notices.  And then I continue doing my mom duties.  I pack the school lunches, trying to create something more exciting in the new gluten-free way along with trying to estimate how much food my middle girl eats.  I know she always seems ravenous here, so clearly the amount of food I pack is not quite enough.  We need breakfast, lunch one and lunch two.  

I look at my growing pile of laundry as I skipped two days while running a garage sale solo and daring to have dinner out with my husband while my oldest babysat.  Somehow laundry multiplies faster than bunnies in my house and I walk past the clutter that is driving me crazy to go set up the sale again.

And my youngest joins me in the free spirited play only a child can manage running up to me with a bouquet of dandelions.  Some are still yellow flowers, some white feathery seedlings ready to blow away in the wind.  I genuinely smile as one must do with a fistful of dandelions as I have every single time I have filled a plastic cup of water to host those dandelions on my table.  

I ask her to make a wish.  “What?” She asks, blue eyes questioning me.  After all, wishes are for shooting stars and birthday cakes.  And I remind her they are for dandelion seeds that transport fairies to the dwelling where Tinkerbell and the others wait for a baby’s first laugh and a fairy to be born.

I put my finger to her lips as she’s about to tell me her wish and say “It’s a secret.  Only you know what you wish for,” and she runs off in her muddy rain boots to blow her magical dandelion dust onto our recently fertilized lawn.  

She comes back and tackles me in one of her hugs and says proudly “I made my wish, Mommy!  I wish for you to always be happy.”

As selfless as this wish seems I wonder how much she sees.  And I vow to remember every time I see a dandelion what one little girl wishes for her mommy.  And to remember to stop adulting once in awhile, to stop worrying and just smile and love.

After all, that’s what dandelion wishes are for.

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!

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.