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.

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!