More, Please

The sign for “more” was one of the first signs learned when my daughter was young. Starting speech therapy at a few months old and my extra experience in the education for infants and toddlers (yes, it is a thing!) means I knew how important it was to use words and signs often to help little minds absorb how to communicate.

Having a daughter with Down Syndrome also meant language, among other things, would be tougher to learn. So I slowed my speech with her. I labeled everything-mama, dada, dog, cat, shoes, juice, milk. Even as a baby I learned food is a big motivator and where most of her communication started. Hey, food is an important need. And it’s delicious.

She signed and made noises. Soon those noises turned into word-like sounds. By Kindergarten she had a few words. And she would sing along to her favorite songs. If I put Lady Gaga on my playlist in the minivan, there would be a little voice going “Just dance!!!” as she rocked back and forth.

It was so exciting. I was very active on Facebook informing the world of our little successes. My daily “memories” is full of moments like the following where I’m ecstatic over any words I heard. Even if it was a “no!” (The most popular word she has learned) Some days my memories had moments I told the Facebook world I was doing laundry. If you still follow me there I thank you for putting up with that.

It continued. Her words were slow. But they were there. Her progress reports from school or therapy showed her communication skills continuing to improve. Sure, she was behind. And the fact that my girl has a stubborn streak in her that can’t be fought-only matched, still showed she was learning her basic words. We would read Biscuit the Dog books and she would say “woof, woof” with Biscuit.

But then. She stopped. She’d still dance to music. Occasionally she’d throw in a “please” or “cup,” but as she grew and learned how to get her wants and needs met, she stopped asking. She refused to sit with me and read a book out loud. Still, I had faith.

I repeated everything in slower words again, enunciating the sounds. I’d sign “I love you” and “more, please” encouraging her to use whatever form of communication she wanted. Through speech therapy and state assistance we opted to match her with a talking device. Again, I’m open to whatever form of communication she wants to use.

But I miss her voice. I’ve cried over these stupid Facebook memories. While I’m celebrating the many, many things she can do I’m still missing one thing in her life: her thoughts.

I love using her device to try to talk with her. Asking her how her day went. She will use it to tell me she does not want the apple juice I poured, but instead a Mountain Dew I don’t have in the house. She will tell me she wants mashed potatoes with her chicken nuggets. She will tell me Lotso and Mom are in the room.

It’s coming. Her words are coming back. She can request Taylor Swift songs (though, come on, you never really need to ask for me to turn those songs on!) At school one day she was able to use her talker to say she was sick, her head hurt and with my permission and the medication I keep in her school health office she was able to take Ibuprofen and then had a great afternoon.

I don’t know if I’ll hear her counting by song to Britney’s inappropriate, but very fun “Three” again. Or if I’ll hear her say “I luh ooo” like I used to. But she smiles back when I say it. She sometimes returns the sign. And she uses her device to ask “Do you want to take a selfie with me?”

The answer is yes. I’d like to take more, please.

Hellos

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.

A Day Without His Girl

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.  

Some Days are Feels

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.

My curvy girl

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…

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

 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.

The Secret to Happiness

is simple.

Actually in winter that is the secret.  Yesterday our sidewalks were clear and so were the roads.  My dog and I set out on an adventure through town to refill the Little Free Library.  I rummaged through our home library, sifted out some books (trust me, we aren’t lacking in this house) and filled my bag.  If you’re lucky you get the free bookmark and note of kindness I stuffed in one.  

Then we came home and I wrote in the recliner.  And he napped on the couch.  With the fireplace on.  Because, well, because we have one.  And it makes us this cozy.  

I needed to do errands, but I chose the fireplace and my laptop. And my peace and quiet lasted longer.  It meant sacrificing a solo Target run.  

Was the Target run with the Caroline’s Cart full of a 65 pound 9 year old and her bear diving after chips, soda and Inside Out underwear worth it?  (I skipped the soda, but the others made it in the cart).  It was worth it.  Even when the five year old kicked me because she was angry she didn’t get to ride in the cart (again, sorry, but there’s maybe 3 double kid semi carts-they are always in use).  Still worth it when we did the self checkout because there was one poor cashier during shift change with 6 carts waiting ahead of us.  Still worth it when the youngest told me it was “so embarrassing” to wait for Mommy to scan our cart full of juice, Pull Ups, and the other necessities that somehow got placed in the cart.  

Definitely worth it.  

Today was a snow day, so I’m even more thankful I took that time to do only what I wanted in quiet.  As many inches of snow had my youngest asking at 7 am in her Anna voice “Do you wanna build a snowman?”  (No, coffee).

“Do you wanna build a snowman?” (No, I’m washing your sister’s bedding).

“Do you wanna build a snowman?” (No, I’m still trying to find that pair of pants you borrowed at school the other day.)

“Do you wanna build a snowman?” (Sighs.  Maybe it will be fun.) 

“Yes, let’s go build a snowman.”

So even though I hate winter.   Hate snow.  And hate cold, we went outside.  I bundled up in my warmest pants, hat and running gloves (thinking clearly I am not a winter outdoors woman), and fake Uggs because I have no idea where my real winter boots are in the house even though we’ve lived here for 3 months.

We built a snowman.  And laughed.  And searched the ground for rocks.  Discovered we only have baby carrots.  We hugged and took silly selfies.  

I didn’t want to.  But happiness is unexpected sometimes.  It’s found when you give to others.  In a book.  In the memory of building a snowman.  In the much needed and messy hot chocolate afterwards.  

But now that my toes, hands and especially my butt is cold I’m going to sit in front of the fireplace.  And look, the dog added to my happiness too;) 

I got extra kisses by the fireplace.  Happiness really is a warm butt.  And books.  And snowmen.  Especially snowmen.

The Terrible Necessity of Socks in Winter

The temperature is below zero.  There’s snow/ice/shice on the ground (for those of you who don’t live in an area that regularly gets snow shice means shitty ice, a hybrid of dirt and ice and rocks and whatever other garbage is hidden under the snow.  That’s only one of many words to describe snow). Unless the temperature is below zero kids bundle up like a mummy (remember the scene in A Christmas Story where he can’t put his arms down and is wrapped in scarves?  Truth.) and play outside in the tundra.  I’m not sure what they’re allowed to do anymore in order to be a safe environment.  My girls do one thing- swing.  The little does work on a snow mountain built by the older students at her 4K site.  

But unless you want your feet to look like this:

Socks are a necessity. (So is tucking your snowpants over your boots to keep snow from piling in there).  They keep your boots and shoes from smelling raunchy (sweaty feet?  Ewwww).  

My girls hate socks.  My daughter with Down Syndrome pulls them off and discards them the instant she walks in the door.  (When she was younger we had to put tights on under her pants to keep the socks from being flung in the back of our minivan).  Most socks are uncomfortable for her too, though she’s seemed to settle for athletic no-shows.  Still I find piles like this showing me where she’s been.

My youngest has become more of a challenge than her sister when it comes to socks.  For a time every single day when it came to putting socks on we went through this lovely experience.

Why?  Because her socks hurt.

We have tried pretty much every single pack of socks out there.  Bobby socks, socks with Disney Princesses, Super Hero socks so she can dress like Wonder Woman!, the same athletic socks her sister tolerates (even new those weren’t hers, they were her sister’s), the soft fireplace socks, and even a search on Amazon to buy seamless socks.  Every pair meant a tantrum.

Until we discovered the bow socks in her drawer.

I sneak them in the laundry when it’s bath time.  I don’t make her wear socks on quick outings, but finally the sock sensory battle has lessened.  Mommy doesn’t have to sit on the garage step trying to breathe as the little one screams inside.  I don’t have to carry her to the bus because she won’t get up because her feet hurt in her socks.  It’s currently okay.

I hope this pair doesn’t get lost….

The Gift of Friendship

My older daughter never had play dates unless it was for her sister (or me).  Birthday parties were family and family friends.  Only once did we get one from school and that was from her school bestie in the special education room with her.  It was wonderful to be there, but it saddens me that she never really had friends.  

I was reminded of this as my youngest came home with a birthday party invitation.  Every day she asks “when do we go there?  We are going to the party, right?”  While I say, of course, and I’m grateful for the friends she has made at her new school.  At the same time I’m wondering how her sister will feel at home while we go to a party without her.  Trust me, I know she will enjoy her time.  She’ll probably be watching movies on her Kindle, throwing things at the fireplace or rearranging.

  And I wonder if her sister has friends at school.  I know she enjoys lunch with classmates daily.  The kids volunteer to eat lunch with her in her classroom.  And her teacher writes that sometimes Nyssa gets silly or just enjoys her peers.  That sounds like her. She loves laughing especially if there is physical comedy involved.

But I wasn’t sure that was friendship.  Until I opened a large mannila envelope from her third grade teacher today.  I didn’t think twice.  As a special needs parent I get IEPs, test results, and the like.  I know her new staff is testing new communication devices with her and expected some kind of paperwork to fill out.

Instead out poured notes of love from Nyssa’s classmates.

I sobbed at the sight of child-like drawings and the sweet spelling of these words.  One friend drew some of their favorite things: biking (even though she can’t bike yet), McDonald’s, dressing up, swimming, and the swings.

In fact, most of them mentioned the swings, the place she loves the most when she’s outside.

She makes them laugh.  They enjoy being with her.  They hope she loves them too. 

Friendship means love and laughter.  It means kindness and the ability to love someone for their strengths and their weaknesses.  My girl might not tell me about her day.  Or all about her friends at school.  She might not tell me who she was playing with on the playground or who she had lunch with, but she has friends.  

And for that I am grateful.