Archive | Uncategorized RSS feed for this section


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.


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.

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.

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!


29 Mar

The sun basking me with warm rays of sunshine, the waves crash gently on shore, my toes buried in the white sand and my pockets full of seashells.

If I try really hard I can see it. If I try harder I can hear it.  A few birds cawing, in the distance the pier crowd squealing.  


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.