Wednesday, July 29, 2015

swim time

The Bird is in swimming lessons.  This is nothing new and is pretty typical (yay...what a fun word) for most kids during summer vacation.

Last year, she was in level 2 the whole summer...three sessions worth of level 2.  She did not pass.  So this year, we signed her up for level 2 (the Turtle group) once again.  We were resigned to the fact that she may be a turtle forever.  We even thought it was kind of ironic since turtles seem to follow her wherever we go (no lie...they have this thing called Tortoise Town at our zoo and they stampede her.)  This was a hard realization for us (the level 2 forever...not the tortoise stampede) because when she was just a little bit, she loved the water.  She could swim by age 18 months and loved the water.  She had seizures from about 2 weeks old but at around that two year mark, she had some doozies.  And her meds were messing with her.  And the combination...well...she still loved the water but lost all her skills.  She also gained fear.  No slides and no swimming without clinging to a parent or sibling and absolutely NO DUNKING OF THE HEAD. a lot of things...we gave up the dream of Olympic swimming glory and focused on fun.  Each lesson session she was getting a little more brave and she really does love the water.  A parent of a child with special needs often has to defer dreams or fashion new dreams from old ones.  It's a wonderful skill and it breaks your heart a little, every time.

This summer, during the second session of swimming lessons (we missed the first because we were traveling across country in a honda civic...for real...all 5 of us (3 over 6 feet tall) in a honda civic) we signed her up for the turtle group and camped out on the picnic bench to water our girl swim.

Lo and behold...she was getting it.  She got her face wet.  She dunked her head.  SHE JUMPED OFF THE SIDE!!!  She even went down the slide...WITH NO ONE TO CATCH HER!!  After the second session, her swimming lesson instructor (really...the nicest teenage boy on the planet) handed her her report card.  She passed...not only did she pass...she passed with flying A++ flying colors.  I cried.  Daddy cried.  Her swim instructor cried.  Onto the shark group she would go. a side note...can I say how wonderful it is to have blessings like her swimming instructor in our lives.? Here is a teenage boy, so vested in her success, that he can actually shed some tears when she does so well!!  Her PCA is stellar and has worked and worked and worked with her this summer to get her comfortable in the water push her just past her comfort zone while still supporting her.  She is also a lifeguard.  Her PCA and the instructor text each other about our Bird.  Her success is a group effort for sure.

This is the first week of shark lessons.  They are two weeks long.  I am under no delusion that she will pass sharks.  We will be doing at least one more session of level 3 but that is OK.  It is more than OK.  It is wonderful.

Today, we took her to the pool to swim together: her, her daddy, and me.  She went off the diving board.  THE DIVING BOARD!!!  On her own.  Her little legs trying to make the board bounce before she threw herself off the end.  Into the 12 feet.  With no one to catch her.

Again and again and again.

She practiced her dives.  Crouched on one knee...arms high above her head, belly flopping right off the side. her Daddy and I cheered and hooted, I looked over at the lifeguard on his chair.  Her instructor had a big grin and was whooping right along with us.

It really does take a village and I am so honored to belong to this one.

Oh...and watch out Michael girl is a SHARK!!!

Tuesday, July 28, 2015


My Bird has a bunny.  Not a breathing, hopping bunny but a real bunny, none-the-less.

It was one of those impulse buys from the stuffed animal bin at Ikea when she was maybe four months old.  She was in the cart and needed something to prop her head on and I grabbed this soft, fluffy, bunny from the bin and she laid her head down on it and went to sleep.  It was on the trip home from one of her 1st hospital stays.  The first of many, it would turn out but, at the time, we were blissfully ignorant of all that time spent in hospitals and doctors' offices and specialists and five hour road trips to see the best of the best of the best.  We were "newbies" and were in that "she will just outgrow this" phase.

Bunny has been the Bird's constant companion for six years.  He has been gowned for every surgery, decontaminated at every hospital stay, snuggled for every nap and bedtime, and washed more times than I can count.

Bunny isn't very fluffy anymore.  His stuffing is mostly gone.  His neck flops over because that is where he is held.  His ears have been loved almost bare.  His whiskers are mostly gone.

We recently found a new bunny.  On ebay.  We ordered him and were going to put him in her closet for the day when Bunny was just a scrap of brown, sort-of-fur.  Bird saw the open box, reached her hand in, and felt.

"A BUNNY!!!!!" was echoing through the house after one, blind touch and New Bunny was born.  She loves them both.  But Bunny Bunny is still the bunny of choice.

Tonight, at Vacation Bible School (VBS for the uninitiated), she left Bunny Bunny in the imagination room.  I came to pick her up and when she saw me, she collapsed on the ground, in tears.  All I could understand was "Bunny Bunny."

The loss of Bunny Bunny is always a code-blue emergency and I struggled to understand what she was saying about where Bunny was.

In the middle of her panic (and truth be told, mine as well) I began thinking...

You know...I am as attached to that scraggly piece of brown fluff as she is.  My heart was beating and I was having an anxiety attack at the thought of a lost Bunny Bunny.  Bunny Bunny has been lost before, in the toy bin at the Disney Store in the Mall of America, left behind in the classroom at school, dropped on a walk around the neighborhood but, he has always been found.  Somehow, God has led us back to Bunny Bunny.

We check on him like he is a person ( everyone in the car?  Do we have Bunny?)  We tuck him back in her bed when he tumbles out.  He gets the seat in the cart next to her when we shop.  He is her best friend.  He has never ever ever let her down.

What will happen when Bunny Bunny is retired? Or when she gets "too old" for him?

We found Bunny Bunny, tucked on the shelf in the imagination room.  Clutched to her chest, her fingers rubbing the medicine wheel, tucked into his soft, fluff tail, Bunny Bunny was home.  Back in the Birds arms.  At home, she snuggled on daddy and sobbed her sads out.  Her fear of losing Bunny Bunny obvious to everyone in earshot.

Will she ever have a live friend as loyal and loving as Bunny Bunny?

Saturday, July 25, 2015

Chutes and ladders

Our life is often like a never ending game of chutes and ladders.  Remember that game…you land on a “good” square and you get to climb a ladder, you land on a “bad” square and you slide down a chute. First one to the top wins.

Except, this game never ends. There are no winners or losers, we are all just playing this game and sometimes we land on good squares and sometimes bad ones. 

I like to only talk about the ladders we take. Those days that we climb higher than we thought we would are the ones I like to focus on.  But, there are days that we hit those chutes and we hit them hard.  We slide down and it is awfully hard to keep rolling that dice.  But, we do because, well, because there really isn’t any other choice.

Today is a chute day.  It started out as a ladder day, isn’t that cruel, but we are definitely sliding down some chutes.

The bird woke up and was sweet and muppety and glorious.  She snuggled and loved on us and smiled and made eye contact and we had such fun conversations.  We made up songs and played games and we were climbing up those ladders.

Then lunch happened.  She has been a little enamored with beans lately.  Beans for every meal.  This girl likes her legumes.  So I made beans…homemade baked beans with all kinds of wonderful goodness in them.  She even helped.  We followed my aunt’s recipe last night and we were so excited to eat them today.

Cereal with daddy for a late breakfast, then applesauce, then lunch time.  Beans and eggs.  I got it, Bird.  I scooped up some delicious beans and put them on her plate while I was scrambling her egg.  Suddenly beans were everywhere.  Beans in my hair.  Beans on the counter.  Beans on the cabinet doors.  Beans in Bird’s hands.  She stood facing me and screaming…not any words…just a scream.  We were now beyond the point where she could talk and entering the danger zone of aggression.  I shut off the stove and physically picked her up, covered in beans, and brought her into another room (away from stoves and things easily thrown.)  After laying on top of her (weight calms her down) and softly singing, she was able to let me know that she didn’t want those beans.  She wanted HER beans.  Just a regular can of pork and beans.

It was a chute. 

So I made her her beans and finished her egg.  But, wouldn’t you know…she wanted an egg white (they are easier for me to eat and as fate would have it, she loves them too.) And more chutes.  And she wanted to go swimming but it was raining and there were more chutes.  And it is only 1:30 in the afternoon.  Today might be a day full of chutes.  We will slide down, down, down.  And I may end up in the middle of the floor tonight with my arms wrapped around my legs, crying because of the frustration my girl is experiencing and the knowing that there is nothing I can do to fix it.  There are no days with only ladders.  None.  But, there are days with less chutes.  And, while playing this never ending game is not a choice, what I can focus on is.  This life of epilepsy and autism and Ehler’s Danlos Syndrome and feeding tubes and medicines and therapies and specialists and medical equipment and dreams deferred is not a choice  However, focusing  on those ladders, those tiny climbs (and big climbs) are a choice.  Today, there are more chutes.  Tomorrow there may be more ladders.  Either way, I know what I will choose to focus on.

Friday, July 24, 2015


The dictionary definition of grace is simple. As a verb, grace means to do honor or credit to (someone or something) by one's presence.  In my life, this grace has taken many forms but none is as beautiful or pure as my boys’ love and care for their baby sister.

My boys were 11 and 12 when their little sister was born and, truth be told, they were not that excited.  It had been me and them for so long and then they had to adjust to a new father figure and had barely begun to accept that when a new little human was added into the mix.

Fionnula Grace entered the world blue and unresponsive.  Soon after her birth, we noticed the seizures starting.  As she grew, so did her diagnoses.  At six years old, she has a laundry list of syndromes and specialists and binders and rows of daily medications and rescue medications and a house full of therapy equipment.  Her older brothers accept all these things with grace and love.

Never once have they wished for a different sister, a different life.  From the first moment she was placed in their arms they became her protectors, their gift. Grace has followed.  At 17 and 18, Finn’s brothers know how to recognize and time her seizures, administer her medication, hook up and use her feeding tube, utilize her rescue medication, handle melt-downs, give expert hugs and kisses, snuggle her to sleep when she needs it most.   They are her ninja buddies, hide-and-go seekers, joke tellers, secret keepers, and best friends.  Grace.

On a recent family vacation, we traveled (by tiny car) across country.  For three days, my teenage sons amused their sister as we drove hours every day.  They stormed across civil war battlefields, gazed up at the dizzying height of the arch, road amusement rides that were much too small so she could hold their hands, swam in the ocean, found shell after shell, danced on the street to jazz music.  Grace

They are also the ones that stroke her hair during a seizure, while their eyes fill with tears.  They have been bitten and hit and kicked during autistic melt-downs.  They help her breathe through her asthma attacks, and have rubbed aching joints when her ED flairs.  Grace

The dictionary defines grace as doing honoring to someone by your presence.  As a parent of a child with special needs, I define grace as their siblings.  Those unsung children who rarely have both parents at any school event (and are usually lucky to have one there,) who miss events because of doctor visits or ER stays or rescheduled therapy appointments, they are grace.  The brothers who curl up in hospital beds next to their baby sister and remind their mom and dad to eat breakfast, not to worry, they can watch their sister.  Grace.  The 17 year old who stopped during grand march, at his senior prom, to pick up his sister and take a picture and give her a balloon.  Grace.  The 16 year old reading Pete the Cat with the same funny voices 100 times because repeating the same story calms his sister down.  Grace.

Grace can take many forms but none has been more clear, pure, and consistent than my boys and their love and acceptance of their sister.

Sunday, July 19, 2015


Yesterday, we traveled 3.5 hours to my home town for their annual parade.'s not only a parade but it also includes a carnival and rides and delicious fair food...but we had already decided that all those things would be too much.

The bird.

The bird has a really hard time in places with lots of people
loud noises
isn't our regular stomping grounds

We thought the parade would be pushing it...
you 6, she has NEVER enjoyed a parade.

Oh sure...we have gone to parades and tried to watch them and tried to catch candy and watch the prancing horses but...the sirens startle her and that causes seizures...
her medicine makes it difficult for her to regulate her temperature and the dead of summer heat will cause seizures
the people and the candy throwing make her panic

so we try
and then we leave after 5-10 mins
and we watch the parade from inside my grandma's house (which is not my grandma's any is now my cousin, Sarah's but you get the idea) or the car or we walk home and help hr calm down and get back to status-quo.

we went to my parents' house (grandpa grandpa's) and she had a blast and then we piled in the car (well...she piled in with grandma and grandpa...Cori and I had a childless 5 mile drive!!!) and went into town for the parade.

Yesterday...for the first time bird enjoyed a parade.
She brought her bag for candy (Jake and the Neverland Pirates) and had her hair braided to stay out of her face (thank you grandma) and sat on the every other 6 year old...and watched the parade.

We taught her how to catch candy (sorry other kids whose candy we may have swiped in our complete and utter joy) and she watched over 3/4 of the parade, sitting on the curb, dancing to the bands, waving to the floats...just like every other child.

I cried
My mom cried
Cori cried on the inside

yesterday...I caught a glimpse of something "they" assured us would never happen. bird never listened to "them" anyway.

Thursday, July 9, 2015

when I am sick

"SO Kris...what brings you in today?"'s been forever since I have been able to breathe...I went through 3 boxes of tissues in 2 days and a whole bottle of that saline spray.  I tried a neti-pot and almost downed myself.

Screw this homeopathic crap...inject some damn poison up in me so my eyeballs stay in my head and I can breathe through both nostrils simultaneously...hell...I would settle for one at this point.

in addition to this obvious infectious mess in my nose...I have a yeast infection!!!  Seriously...and acne...
Like could my body rebel more?

After listening to the soothing sounds of a sick motorcycle at volume 756 while fighting off a migraine and listening to the Bird go on and on about Blues Clues, I got a whopping 52 mins of sleep...

52 mins

The Bird was up again at 6:30.  It's f*ckin summer break kid...I would love to sleep in...or just sleep.

And then she is jazzed for swimming lessons
Swimming lessons are at 11am
It was 6:30
She asked every 7 mins if it was time to go


I drew a clock to show her what the clock would look like
We sang songs about patience
We colored
We read
and still....


I told the hubby yesterday, that I needed a break...seriously...
and he said...oh you always ask for one

Now...I could get real petty here and go back through all our conversations and let him KNOW that at no time did I ask for a bird the entire history of our cell phone plan
I didn't

I may have fantasized about chopping off his head and sending it careening into traffic on his f*ckin motorcycle but I did NOT point out that it has never happened.

In fact...I have frequent fantasies about chopping off various parts of him.  It could stem back to the fact that I have been waiting for 5 years...he says 1.5 but whatever...for him to finish the F*CKin basement. in limbo for 5 years and can't organize anything because the place for half the crap isn't ready yet but he has like...UNLIMITED time to work on these time and money suck motorcycles and bitch about how he never gets to do making other people food and doing laundry on "vacation" is really VACATION for me...


that's another thing...we go on vacation and I spend hours every day doing laundry and making food...seriously...what the F*CK kind of vacation is that?  Like, I could have done that at home and not spent $45,000

All I want to do is read a whole book without interruption...a WHOLE book.  I can't even read a damn recipe without someone asking for something....for instance...the bird has asked for something no less than 1000 times while I have been "talking."


That's another thing.  I understand she has autism but F*CK autism because, seriously...

Seriously...the only alone time I have had in about 18 years is right this dr's office.


I have this crazy spot on my chin where a chin hair always pops up (hello 40+...)and I just KNOW there is a hair there but I can't find it and I may have created a whole sort of crater there but I  know it is there (dirty bastard)

That's what I WANT to say to the dr....I mean...that's my answer....

"Well...I have had this cough and runny nose for a couple of weeks now" is what I will really say.....
All while relishing the fact that no one is asking me when swimming lessons are.