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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.

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.  

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.

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.

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.

To the Mother I Met at the Mall

2 Feb

I have a distant memory of you.  I know it was a cold winter day where the temperature was too frigid to bundle up my toddler and let him play in the yard, but he needed activity to keep from running laps down the small outlets of our hallway.  Neither my carpet nor my patience could handle the jumping off furniture.

I remember standing in the middle of the mall by the play area, holding my baby girl close to as she was still so fragile, tiny and ill pre-heart surgery days only a few months old.  I can picture her on my shoulder, petite frame and giant blue eyes watching the world as I watched my son run on the gym mats and climb on foam filled play equipment.  I already had a container of disinfecting wet wipes open by the stroller, already considering how to clean his hands and mine after his sister was strapped back in her stroller.  I remember the faint rainbow pattern of the stain glassed pattern through the ceiling windows of the mall, the sound of the elevator music over the speakers and the murmur of costumers walking and running their errands.

But I don’t remember your face.  I remember you coming to me with tear filled eyes, your eyes barely moving from my daughter’s soft and beautiful face to meet mine.  I’m sure I tucked her closer then, because I always did with her.  I was always anxious and fearful of an illness that could take away my daughter before we allowed her heart to grow big enough for the surgeons to repair the hole in it.  I’m sure that I was still contemplating whether the fun of the play area was worth the exposure to those germs.

You paused before you spoke.  As a mother I could feel the heartache when you shakily told me that this was the day you had lost your daughter.  You told me her name and that she had been beautiful and loving and kind.  And you were struggling today with the pain, the heartache, the loss.  I saw you had a small support system that was quietly waiting behind you.  And as my own eyes filled with tears you shared that our daughters both had an extra chromosome.  And that you knew seeing my dark haired, blue eyed girl was your daughter telling her that she was okay.  And you smiled, even though you hurt.  You said that seeing my girl was her daughter’s way of telling her that she was okay and still watching her.

I no longer remember what I replied.  Again, I no longer remember your face.  But I remember holding your heartache in my heart as I kissed the soft hair of my baby girl.  You left then and even though I know I had been terrified to bring my daughter to that play area that day I never regretted it that day.  Because we were meant to be there.

To you, dear Mom who lost your daughter with Down Syndrome, I have never forgotten you in the last nine years.  I have never forgotten how you admired my little girl as I always view her myself—seeing and loving those extra quirks of her flatter face and small nose, her beautiful blue eyes set far apart in a head that was then too large for her body.  I think of you nearly daily. I can only imagine what your girl looked like, but I know how much you love her.  And I’m thankful that you gave me that moment to remind this young, scared mother that sometimes you just need to stop and be grateful for the moments you have.  I can only wish that time eased your pain, but a mother should never lose someone that was literally a piece of themselves at one time.

The Gift of Friendship

15 Dec

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.