Fierce

27 Sep

One particularly hot summer day with the sun spreading its warmth (well, radiating ninety degree sun rays straight from the sky) we headed…to the circus museum.  While I love the history and examining the antique box cars from the traveling days, my favorite part (and my girls’ favorite parts) are the animals.  We happened to arrive just before the tiger show, which is by far our favorite.

My middle daughter was tucked in our jogging stroller she’s outgrown, the canopy up creating her own little bubble where she can watch but feel secure.  If we go anywhere we have to use a stroller.  She can walk.  She can run too, but she can also tire out quickly.  We don’t know if it’s her low muscle tone or if it’s back pain from scoliosis or if she just wants the security of being in the stroller.  We just know if it’s not there unless it’s a short walk we will have a meltdown without it.  She will stop and refuse to move.  At seventy-plus pounds and over four feet tall I can no longer balance her on my hip like a toddler.  The times I do pick her up out of necessity my back pays for it for a few days.

So back to us being tucked in our stroller and me pushing her quickly to try to make the tiger show before it started.  The trainer was seating the beautiful creatures and everyone is looking for seats on the bleacher seats.  Most seats were taken already as we’d had a slower start than we like (the night before had been rough).  But I spotted seats in the front corner.  We sit on an edge where it is easy for me to remove her from a place if it becomes too much for her.  When things are new, when things are loud, when things are overly stimulating, it can go well, or it can become too much for her.  So we try to sit near an exit just in case we need to leave.


And I never know when, so we just prepare for it.  

She sat on the bench in the corner like we always do.  She smiled and giggled and was already glued to watching giant cats sitting just like our geriatric cat does at home.  I know she loves watching animals and with the multiple fences between us and these beautiful, but large animals she feels safe.  I tucked the stroller next to us and walked over her to sit next to her.  We happened to be sitting on the handicapped seats.  I noticed that as an afterthought, but I did not think anything of it.  While Nyssa is legitimately cognitively disabled, I consider her physically disabled at times because of the inability to walk far:  we have a doctor’s note that gave us a state handicapped tag and I never feel bad using it with her.  It took me a long time and many years of trying to manage without it until I swallowed my own PRIDE and asked for it.  Our pediatrician didn’t blink.  I don’t like to play the disability card often, but I will when it is needed.

The entire row of the benches next to us which were not labeled as handicapped, but not by an exit were empty.  There were also available front row and second row seats in different sets of bleachers. A gentleman was assisting people just coming in to find seats.  With barely a glance to my daughter he asked me to move, asking “if we could make an available spot for those that need it.”  I shifted down the seat at first, trying to ask my daughter to move with me.  She wouldn’t.  She didn’t want to.  This was her spot, this is where she was comfortable and she wanted to stay there.

She is more stubborn than I am and that is saying a lot.  If she doesn’t want to do something-good luck.

When he insisted and continued to usher elderly people to their seats (please note nearly this entire first row of seats is STILL empty).  I smiled stiffly while my mother-in-law informed the man “she IS handicapped” as he asked one more time for us to move over to make room for others.  I had to pick my daughter up a bit to get her to shift over a seat with me.  A woman sat in the seat that my daughter had just been sitting in a few minutes ago.


I regret that I didn’t stand up more for us.  But I was still speechless.  I do not think this man was intentionally mean.  I truly believe he was just trying to assist people that struggled to climb up bleacher seats to another seat.  But, to ask us to move out of seats we are legally entitled to sit in bothers me.  I understand it is difficult to climb bleachers even when you are young and spry.  Heck, I’m in my thirties and I am not comfortable weaving through others on heights to sit in a seat.

But the biggest issue I had was being asked to leave.  I could not tell you what any of the other people sitting in those seats looked like.  Whether their disability was obvious (crutches?  Cast? Wheelchair?) or whether it was invisible.  The simple fact is IT DOES NOT MATTER.  It is not my job or your job or his job to determine who is disabled.

There was no reason for us to be shifted over to make room for other people.  One woman sat in that seat.  When my daughter wanted the comfort of her stroller I was no longer next to her and had to lean around to make sure she was safe.

I don’t know how she felt from this incident.  I know after this, after she fell off the playground equipment when she was scared by other children yelling, after when I tried to sit in a seat next to her stroller in an aisle seat at another performance and was told it was saved for someone else-I was done.  And to me it looked like she was as well.


So she and I returned to the tiger’s performance area.  The giant kitties didn’t need to perform now.  So five hundred pound cats sprawled in front of fans and napped.  We watched one pacing.  We watched one climb on another one and lick her gently.  And my girl was calm and just enjoyed their peacefulness too.

And I cried.  Because some days instead of bearing my fangs and growling menacingly I would rather just relax with my family and just be.  As a mama tiger to my own I will be fierce and fight battles when I need to, but sometimes I just don’t want to.  I just want to live life watching big kitties sleep in the quiet, hug my daughter and just enjoy the sunshine.  Just be.

So let me be.  And don’t judge a book by its cover.  Or a girl by her disability.  Or a lack of a disability.  Because, sir, next time you ask me to move you might get my Mama Tiger fierceness.

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Living the Dream

19 Sep

A few years back I remember being mid-shuttle. I don’t remember which trip through town it was, but it was in the middle of the day as I drove past the park.  I’d survived the morning school run (kid one to bus-stop on time.  Get kids 2 and 3 changed, packed and in car to bring kid 3 to the daycare across town to shuttle back and bring kid 2 to the school when her elementary special education staff was there so she could be supervised and then go back to the other side of town to get to work.) And then started my shuffle to my traveling job and the morning’s shuttling in reverse and then dinner.

I was exhausted.  All the time.  I cared for others all day long.  I’d get up with my toddler who had just started sleeping alone after a few really long years of me cosleeping by her in order to keep her calm,  and assisting my son with blood sugar checks in the middle of the night.  Not to mention housework, cooking, trying to schedule appointments and keep a job,  

That particular day I was stuffing a sandwich in my mouth as I had to run to a school and probably drop off diapers or insulin and that took my lunch break and I stopped at a red light.  On this gorgeous fall day I watched a woman jogging.  I was struck with so much jealousy over this simple fact that she had the freedom to just go for a jog in the middle of the day.  She had her headphones on and looked so peaceful as she maintained her pace.

I nearly cried over that jealousy.  I was nowhere near running stage thanks to the extra pounds stress eating and focusing on others had given me.  I was still trying.  I was trying to work out- that was walking as the pressure on my knees was way too high.  I had to schedule workouts with a sitter to watch my younger two or somehow fit my special needs daughter or my toddler in a stroller (usually that was both and nothing could hold both of them anymore as double strollers aren’t made for children over the age of three).  And don’t forget my sweet, but anxiety ridden dog who doesn’t have walking manners.

I watched this woman, casually running and listening to her headphones and wished for a bit of that time.  Just one hour.  One hour for me in silence without needing to worry about anyone else.

Wishing didn’t make it come true.  But it was a turning point for me.  I knew because I wishing that hard on something fairly simple; I needed a change.

It has taken those few years but now I’m running.  My three kids are all at school.  I’m blessed to have a flexible schedule and be able to stay at home as my husband’s job changed.  I lost over forty pounds on my own so my knees no longer hurt when I run my interval jogging.  I’m not where I need to be physically, but I’m running.  And eating well.  And feeling great.  And I am fulfilling that dream.  I have the ability to lace up my Nikes and harness my dog and just go.


Sometimes they’re delayed.  Sometimes they need work to get there.  But dreams can come true.  Maybe not in the way you expect (I didn’t expect my husband’s job to go “poof” or for him to get a job in a different city and our whole family to relocate).  But my dream was modified.  I still shuffle kids.  That morning routine go get out the door to school is still not fun, but then I get time.  To clean, to write, to run. To just be.  I get to throw on my headphones and ignore anyone else’s needs other than practicing my breathing and fine tuning my gait.

I’m living my own dream.  And I don’t want to let it go.

Hellos

28 Jul

I made a Target run today.  I had my kids so I didn’t get to visit my favorite areas (the clearance endcaps) or browse the home section imagining redecorating I could be doing.  Instead it started with the hunt for one of the semi-trailer sized carts.  And we did get one, so I weaved through aisles using the expertise skills I’ve acquired pushing my seventy pound daughter in a stroller with absolutely zero turning power.  (I’m still thankful to have a stroller!)

I managed to remember the Lactaid, cheese, orange juice, Pull-Ups, Popsicles and laminating sheets with only a small stop in the book aisle where one girl dove for a Barbie Gymnastics book and the other giggled after grabbing a Moana book.  Yes, I bought them.  I don’t care if they’re not masterpieces; the fact that my kids are excited to see books is something I encourage the heck out of.  I considered a trip down the best-seller aisle, but the amount of unread books on my Kindle convinced me not to.  

As I started piling our items out of the cart, my son felt the beginning of a low blood sugar right as his Dexcom CGM alerts and my spunky middle child climbs out of the cart even though I asked (okay, begged!) her to stay in it purely to make my life a tad easier. Naturally she didn’t listen, but instead I heard the squeak that means her bear is talking to me and I tucked the not-so-fluffy pink bear under my arm as my RedCard and I paid for our items.

I naturally shift as my other two (bless them) start loading the cart and then my spunky girl hands the cashier the divider that separated our cartful from the laptop behind us.  She giggled when she got a thank you and then she walked a step away from me and I hear her say “Hello.”

A young man smiles back at her and returned her hello.  I struggle not calling him a boy (but to me anyone ten years younger than me feels like a kid).  She smiles and I pause.

She doesn’t talk to strangers.  She’d prefer the comfort of her family and often prefers females to males, but she must have sensed the kindness in him.  So I returned a smile and let him know “she very rarely does this.”  My girl stretches her hands out in what I call her “excited” pose.  When very happy or excited she stretches her limbs but they create a rigid look.  It’s especially fun when she’s barefoot as she manages to stretch her toes, but it’s confusing to people that don’t know what her body language means. This time, since she was standing, she leaned over to giggle.  With a kind smile this “boy” said he felt very honored that he was the object of her affection.

And I smiled back, grabbed the hands of my daughters as we walked out following my teenage helper pushing the semi trailer red cart with a pink bear tucked next to my purple dress. Because it really doesn’t take much to prove there is love and kindness in the world.  A simple “hello” can do the job.

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.

A Day Without His Girl

3 Jun

Even though my daughter has never had a play date, has been to one birthday party other than family members, she has a BFF.  His name is Lotso and he goes everywhere with her.  He’s been to the doctor countless times, goes to school, shopping, and anywhere else she travels.

Today my girl had a field trip and her teacher requested that he didn’t go with to the caves.  I had to pry a stuffed bear out of her arms and left her crying on the bus.  Neither he, nor I were happy about it.  His expression said it all.


So, to make it right, what else can a Mom do?  

We decided Lotso needs to have a great day with us.

He started out cuddling with little sister and watching Sofia the First, which is probably a welcome change from The Odd Squad that he usually listens to on the Kindle.


Then he had a rare treat and enjoyed a cup of coffee with me.


He seemed to like it black just like me.  Or if he wanted creamer, he didn’t ask.  Regardless he needed the caffeine boost.

We had to run some errands to pick up weekend supplies.  His girl is about to have a birthday, so he came with to pick out some supplies and was content riding in his seat, even if it was little sister by him.


He got a little warm in the sunbeams so we unwrapped him when we got there.

He also got to experience his very first car wash!


The noises scared him a bit, so little sister swaddled him back up to soothe him.


We sat with me while little sis went off to school and requested a selfie as usually his girl squishes him in them.  This time he got to experience the true joy of a dual selfie.

Face it, that was pretty exhausting for one bear, but he waited patiently for his girl, who squealed when we met her at the bus. 


He hasn’t left her side since, but we did okay on our own.  At least I’m pretty sure that’s what he told her.  

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.