Thursday, December 24, 2015

Those reminders

Today, I was reminded that my life is not "typical."

I was running those last minute errands (like...oh man we are out of milk and today is Christmas EVE!!!!) and I was stopped in the produce aisle by a sweet woman who attends church with us.  She told me how much she enjoys baby bird and how strong we are, as her parents.  I expressed my joy at all my birds as well, thanked her, and wished her a Merry Christmas.

I started thinking, you know, why do people think I am so strong?  I am not doing anything that every other parent does.  We all want what is best.  We all try our hardest to teach our children those important life lessons.  We all try to make sure they are wearing matching clothes (some big battles, let me tell you.)

I was telling a friend of mine this exact thing, waxing on a bit poetically (sometimes I feel I am allowed a little more waxing license than is probably permitted) and she said...oh but I could never do what you do, everyday.

I asked her what she meant and she looked at me like a grew a second head (and most likely a second head with some sort of medieval bent to it) and stick a tube in your kid's stomach twice a day at least!!!  I could never do that.  Then she made a gagging face.

While this gave me some time to rethink our friendship, it also gave me pause.  Hey, you know what?  Most people DON'T do that!  But I do.  I am so glad I do.  And I vowed to be more present in the mechanical motions of my day and take note.  Here is what I learned.

I am so grateful for the little port in baby bird's tummy.  Every morning and every night, we open that port and attach a tube.  Through that tube we can administer medication that will help prevent the seizure monster from stealing more from her.  We also administer all the daily fruit and veggie requirements (thanks, by the way, JuicePlus+) that will help keep her healthy and strong.  Into that tube, connected to her port, we can give cough medicine and pain medicine and even supplement her food so baby bird can gain weight and strength.  That little port gives life.  Not everyone has a tubie, that's for sure.  But baby bird does, and I am so grateful for that tiny little tubie that helps keep my baby bird alive.

I am so grateful for the medicine we have to administer.  That medicine has helped keep some of the seizures away from her.  Those nasty seizures that have stolen words and the ability to walk.  The medicine keeps those mostly away.  I remember before that medicine when skills would disappear.  I remember all the times we have stopped that medicine and I watched her lose words and the ability to walk until she sat, eyes unfocused, drooling, alone in the world because she didn't know who we were or that we were there.  I am so thankful for the medication that keeps my bird bird.

I am so grateful for her hard work to use words to express her emotions.  We sure still have days that involve melt-downs and beak-downs and often times these are horrible and scary and they are always hard.  But, she does have words now.  So many don't.  They can't express what makes them frustrated or hurt so for each "I HATE YOU" and each "I QUIT EVERYTHING" I am grateful.  She is communicating. she experiences frustration.  Those things mean she isn't locked in her own world.  She is in mine too.  She is a part of the world around her.  We were told that might never be the case.

I am so grateful for her need for structure and routine.  I never knew it was something I craved until it became a necessary part of our lives.  How much easier is life when all your green shirts are kept together?  How much easier is life when only one kind of pant will be worn?  How much easier is life when everyday, at exactly the same time, the same thing happens?  Sure, spontaneity is a thing of the past, and everyday that something different will happen has to be prepped for....but seriously....sometimes that routine is so calming

I am so grateful for the nights with no accidents.  After 6 1/2 years, baby bird is potty trained at night.  We had resigned ourselves to that never happening.  Leave it to baby bird to prove everyone wrong again.  I am grateful for the nights that accidents happen.  Those nights mean her bladder is working.  They mean she had an accident...not an on-purpose.  All things to be grateful for.

I am so grateful for all the atypical aspects of my life....for the tubies and medicines and equipment and specialists and teachers and therapists and PCAs and neighbors and friends who help keep our atypical life.well....typical for us.  I am grateful for the other birds and their flexibility and their caring and their patience and their joy in the small things. It keeps us sane.

I am so grateful that I have been blessed by the ability to see the blessings in things, big and small.  And I am so grateful for the people who remind me of the strength of every single person....we are all stronger and more capable than we know.

Sunday, October 18, 2015

trolleys and pumpkins and autism

We recently were able to take the bird to a really cool autism event.  A trolley ride on a 100 year old trolley.  Since her love of Daniel Tiger has not waned and we had the weekend free, we made the 3 1/2 hour trek to the twin cities.

What a wonderful experience!

The bird likes to know exactly where we are and how many miles/blocks we have to go and how many miles/blocks we have already journeyed.  It was a long 3 1/2 hours!

I was worried she would melt down.  I was worried the wind would bother her or her hair would touch her face or someone would breathe incorrectly next to her or there wouldn't be any pumpkins the right shape or size or....well, you know, autism.

I forgot that this event was specifically for autistic kiddos.  I wouldn't have to have apologies handy or excuses on the ready.  We would just get to be.

What a GIFT!!!

To be.  Nothing need to be polite or happy or well-adjusted or talkative or quiet or....anything.  To just be whatever we are at the time.

The event lasted around an hour.  The bird won the grand prize!

She laughed and smiled and had her picture taken and...just was.

Sunday, August 30, 2015

A long long time ago

A long long time ago, in the distant past, I was a college student.  Anyone else remember a million years ago to when you went to college?
Last night, I was laying in bed, wrecked with anxiety remembering college.
Don't get me wrong, there were lots of wonderful times in college and I made some of my best friends there, but, overall, it was not necessarily a "good" time in my life.

I remember spending nights crying, hyperventilating, while having horrible memory flashbacks.  I remember drinking for the 1st time and never knowing how NOT to drink to excess.  I tried drugs for the 1st time in college and it would take those 4 years plus one more to stop.  At my worst, I was getting high several times a day and doing whatever drugs I could find.

I didn't care.
I wanted to not feel
to feel normal

My whole life, I suffered from depression.  I suffer from depression.  It hasn't gone away.  I just take medication and spent years in therapy learning how to cope.  Learning how to breathe through those nights like last night.

Nothing triggered me last night.
I simply went to bed.
And they came...unasked...and I couldn't stop them.  I had to breathe through them.  All the horrible things that happened to me and all the horrible things I did.


and remember that I am not my past.  I am not my past choices.
I am today
I am tomorrow
yesterday brought me here
it did its job
but I am not defined by it

When you are suffering from depression, things that might not make sense to anyone else make perfect sense to you.  Those very things that make complete sense to you make no sense to people not suffering from depression.  They say they are egotistical thoughts or selfish behaviors or dumb or crazy.  None of that makes those things NOT make sense to you...they just make you feel more and more alone.

I hurt a lot of people.
my family

but mostly
I hurt me.

I was just a girl...
so lost
so alone in a crowd

I am so much older now...and wiser...and calmer...and medicated :)
I have been clean for 20 years.  Almost half my life and still...
I have night like last night where it hurts to breathe and I feel myself getting sucked down
drowning in anxiety and depression

The difference is, I have tools now.  I can remember to take deep tell myself to relax with each exhale.  I can not stop those waves but I can surf through them.

I did not drown

We can't not change the waves but we can learn to surf.
~ Jon Kabat Zinn

Friday, August 14, 2015


In T minus 6 days, my OB (original bird) will be flying the nest!  Somehow, he is old enough to leave for college.  I certainly do not remember giving him permission to reach this age and this level of independence!!!

I have prepared him for the definite possibility that I may cry (who are we really kidding here?  Everyone knows I will be a leaking mess) and that he has to let me fuss around him for a bit and he can't shoo me out the door.

And...that I will expect phone calls

And...that I will be visiting

And...that they might be surprise visits because maybe I have really important errands to run in that area.

How do you ever prepare for letting go?

I should probably just remember all his jerky teenage times

Saturday, August 8, 2015

Being a mom of a special kind of bird, I have been privileged to see the best kinds of people and the worst kinds of people.  Who knew there was such diversity, even in the tiniest of towns?  When my girl was first born and we were finding all kinds of new and interesting things out about her, people felt encouraged to say whatever came to their minds.

"Oh she has seizures," said with a shaking head and downward glance. "My dog had seizures too and we decided to just put him down."
"Well, you know you aren't married and God really wants people to be married before they have kids.  Maybe this is just a little reminder for you."
"Did you know this was going to happen to her...I wouldn't have kept being pregnant if you knew, right?"

The same way that people feel the need to tell their birth stories, all pain and horror, to every pregnant woman while rubbing her belly...that is the same way people approach parents of kids with special needs.  That is, if they approach them at all.  There really doesn't seem to be a middle ground.

And, even though I have gotten to see these negative aspects, I have also been fortunate enough to see the amazing bits too.  There was the woman who smiled and made faces when Finn was screaming sounds during judgment from her...just smiles at a girl who found her voice.  Families who, year after year, come together to walk for epilepsy awareness...they volunteer and spend days setting up so that our girl can be a "shining star." There is the fabulous woman in the grocery store who listens to the same story, day after day, and still shows enthusiasm in all the right spots and listens intently (even though I am sure she could recite the story word for word by now.)

And, in a world full of specialists and appointments and scans and blood draws, we have been so blessed with an amazing doctor.  Out in our neck of the woods, doctors aren't exactly a dime a dozen.  The nearest city of any size is 90 miles away and to see Finn's neurologist, we travel five hours, one way.  One of our favorite people is Finn's general doctor.  She practices in the next town over and we see her an average of twice a month...sometimes more, never less.  She is fantastic.  She has been Finn's doctor since our girl was born and is, in all honesty, one of the main reasons we have never moved.  She is available 24/7 and spends as much time answering our questions as we need.  She is honest and funny and caring and a real member of our family.  She has always told us that Finn will write her own song and never limit her based on what her specialists say.  She emails or calls if she hasn't seen us in awhile and sees Finn as a whole person, not a diagnosis.  The best.

Finn has been in swimming lessons for two years.  Two years to pass a level and start a new one.  During all those lessons, her swimming instructor (a teenage boy) has encouraged her and shared in all her triumphs.  He showed calm patience and understanding when the seizures stole her ability to swim.  He held her in the water...sometimes her whole class period.  He never stopped believing she could do it.  So she never stopped.  This year, when she finally started talking more (more being an understatement) he never told her to be quiet or ignored her.  He gave her his full attention and he engaged her, smiled at her, answered questions, listened to the same stories (over and over and over again.)  He taught her to swim.  He noticed when she wasn't at the pool with her PCA and even texted her to make sure everything was OK.  When she passed from a turtle to a shark, I don't think that even I was more proud of her than he was.  Even though he wasn't teaching the shark lessons, he still checked in with her (and even noticed when she lost a tooth.)

Good PCAs are hard to come by.  We have had good PCAs and we have had bad PCAs.  This summer, Finn had a PCA that was a perfect match for her.  She spent hours and hours at the pool with Finn, practicing her lesson skills and encouraging that love of water.  She pushed Finn, just past her comfort level...encouraging her to grow and push herself.  She never let Finn give up on herself.  She was firm and fun and fantastic.  We will miss her so much when she goes back to college.

There are many days when, as parents, we are tired.  We are tired of the fight, the battles to have our children seen as special but not because they have disabilities but just because they are every child.  We encounter hurdle after hurdle, comment after comment, and look after look that tells us we will never be "normal."  We are different no matter how much we dress it up.  No matter what cool clothes or what trendy device or where we vacation or what snacks we bring on snack day, we don't fit.  But...some days...we are blessed with the amazing doctor who sees a child and not the diagnosis.  We are met with the acceptance of instructors who embrace our child's uniqueness and don't see the burden but instead they see the gift. Luck grants us the people who push our children to excel instead of being complacent.

In our house, we choose to see the gifts.  The blessings far outweigh the burdens.  Joy, in our home, is in the little things...they really are the sum of life.

In the gloaming

The gloaming is that time between day and night, when the moon and sun can be seen, almost side by side.  I love the beauty of that word...gloaming.  It seems like something out of a Bronte novel.

There is so much that follows in the inbetween times of our lives...that gloaming of life.  After the morning of childhood and in-between adult and old age.  It is during this gloaming of my life that truths seem to become apparent.  There are definite blacks and whites in the grey of life  Things we should and should not do.

Things we should never do:
Put an empty (or almost empty...1 tbsp does not count as not empty) milk jug back in the fridge
When you find an ice cream treat hidden in the freezer, you don't get to eat it unless you bought it
Let a friend go out without telling them about that wild eyebrow hair or the black chin hair they happened to have missed.
Let your dog poop in someone's yard without cleaning it up (even if they don't see you letting your dog poop in their yard)
Go complaining to your boss about a co-worker without attempting to settle that ish by yourself first
Try to shove those darn patterns back into those stupid envelopes
Give up
Resign ourselves to less than

Things we should always do:
Show empathy
Give love
Say thank you
Be appreciative
Express gratitude
Be humble
Read often (just for pleasure)
Eat good food

To live our best life, we need to live our whole life...from the morning until the last star fades.

Sunday, August 2, 2015


I have read a lot of blog posts about how tired parents can get.  And boy, can we get tired!  It is a bone aching tired that sucks at your soul.  We all know that tired feeling.  Ugh

But here is a confession...sometimes I am more than tired.  I am frustrated.  As a mom to a kiddo with special needs, this frustration takes on a new dimension.

I am frustrated with being a mom to a mom to a special needs kid.  I am tired of the constant redirection. I am tired of going over the same thing one million times a day and then going over it again the next day.  I am tired of looking for inchstones instead of milestones.  I am tired of diapers and poop and messes that should have been done with years ago.  I am tired of absolutely no alone time...not a moment.  I am tired of the toys in my house being therapeutic as well as toys...nothing can have one purpose...just fun!.  I am tired of doctors and nurses and specialists and insurance fights and IEPS and always being a cheerleader.

I am so very tired of people telling me what a hero I am and how they could never do what I do. I am not a hero...I am doing what I do because there is no other choice.  I am not doing it because I love pushing tubes into my daughter to give her medication.  I did not dream of the day I would put a diaper on my six year old daughter at night because she still isn't potty trained at night.

I know there are so many children who have it tougher or worse and I am very grateful for what I have. still isn't what I dreamed of for myself or my daughter.

Yes she has made me a better person and taught me so very many things that have enriched and enlightened my life and I would never wish her away. Never.  I would not wish her to be someone else.  Never.

Maybe I wish I was someone else...someone who could always see those blessings and the positives instead of getting bogged down in the day to day.  I wish I was someone that these kinds of things came easily to instead of someone who is frequently frustrated.  I wish I held infinite patience and rejoiced when my daughter interrupted me for the one millionth time to ask if dinosaurs were allowed.  I don't even know what that means.  I wish I would never got angry when she screams the entire time I comb her hair or that I would never felt my temperature rise when we have the same melt down over the same temperature of the glass of milk she insists on having the same way every day.

Often, I read those blog posts from moms and dads in the trenches and they make their lives sound mystical and magical...almost religious.  I feel like I am doing something wrong or that I am completely inept.  Maybe my soul is simply dark and unlovable but I have to say...there is nothing magically about laying on my screaming and biting six year old in the middle of a store so she doesn't hurt herself while people look at me like I am raising a feral child.  There is nothing mystical about changing poopy diapers on a six year old on a public bathroom floor because the changing tables are too small for her.  There is nothing religious about blending medicine and food in an industrial strength blender and then injecting it in a tube that connects to my daughter's stomach because she has refused to eat anything but four cheese puffs a day.  Scrubbing the "pokies" out of her clothes every morning, finding clothes with no zippers or buttons or denim that touches her skin, always having to maintain skin to skin contact when she is awake, a limited diet of hotdogs and macaroni and cheese (on the good days) everyday, watching the same shows, listening to the same songs, following the same routine....none of these things seem other-worldly to me.

My life is not mystical or magical.  It does not bring me onto some sort of zen plateau.  It is not a Hallmark channel, feel-good, movie of the week where everything ends up happily every after.  It is messy.  It is hard.  It is frustrating.  At times I even (to myself) yell out about the unfairness of it all.  There is no happily ever after.  My daughter will not magically "overcome" any of her special abilities.  We will always measure in inchstones.  Our learning curves are not on the same field as others.

I am grateful for my life.  I am grateful for the gifts I have been given (and there have been so many) and I am happy...even though I am tired into my bones.  I would not change my life or my place in it.  It is MINE, messes and exhaustion and all.

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.

Sunday, February 22, 2015


It is so cold....
I mean the kind of cold where your nose freezes shut and you better not cry or your eyes will seal shut too
The kind of cold that hurts when you inhale

It's cold

Tomorrow, baby bird needs to go get her tubie changed.  She has been counting down for a couple of weeks now and we are ALL grateful that tomorrow is the day.

Getting her tubie changed does not hurt's like changing a pair of earrings...every 6 months she goes in and has a new one placed.

Her tubie has been a lifesaver.  It allows us to keep her hydrated, administer her meds, and supplement her meals.  My bird is already up to 41 pounds!!!  Pretty good for a little nugget that we signed DNR paperwork on two years ago.

Yay for the tubie!

Here's hoping tomorrow is so cold they cancel school OR a heat wave happens.  This mamabird would like to go to the tubie doctor with the bird instead of missing out and teaching.

Thursday, February 19, 2015


Often times, well...OK...most times, a mood is contagious.  You know, when you are around happy people, you get a little happy.  When you are around people who laugh all the time, you laugh.  You get my point.

Well, what about when you are around negative, soul-sapping people?  It's a real struggle to remain positive.  
We all know isn't like I just discovered some new and amazing truth.  We all KNOW this.

The problem, for me anyway, comes in when I don't realize how negative and soul-sapping a person is becoming.  Some people enter our lives and they are that all consuming kind of negative and we skedaddle up out of there, just like we KNOW to do.  But, some people enter our lives and they are happy and positive and we high five them and call them buds and invest some time and care into our relationships with them...and, they gradually become negative.

Like creeping grandma used to HATE that stuff.  I loved it because it smelled green and had pretty little purple flowers and I would be all sad when my grandma attacked it like it was some sort of psychopathic killer, hunting down her family.  Man, she dug it out and poured boiling water on it.  If she would have had acid and a blow torch handy, she would have incinerated it.  And you know what?  No matter what she did, it just grew back.  She fought it for forever but, I am sure it is still there, on that patch of ground by the garage and her rose bushes, on the way to the rhubarb.

She was so determined to kill it because she said it choked out all the other plants (namely the roses.)  And, that is kind of how it is with those sneaky, negative, soul-suckers.  They start out looking all pretty and smelling all new and then they just kill you down by the roots. o we ferret them out?  How do we let go of those people who maybe didn't start off so happy-stealing but sort of ended up there...and are they stuck there forever...and is it our job to know if they are stuck there forever or do we just cut and run as fast as our legs can take us?

I'm not sure of the answer...hoping someone else has an easy solution.

What I do know is that it took me a long time to find my own happiness and peace.  It was hard fought and I am not relinquishing it for anyone :)

Wednesday, February 18, 2015


This morning, while enjoying my morning off (I have a doctor consult today and a two hour late start...didn't make sense to drive an hour to school to stay for an hour and then drive an hour home....I also realized that there was no time to get the things done after my consult that needed to get done but that...that is a whole other post) I decided to read one of those "24 things women over the age of (fill in the blank) shouldn't wear" articles.

I am over the age of (fill in the blank) so I thought I would get a chuckle since I am almost always wearing whatever I shouldn't's a gift, really.

So, I read said article and found I shouldn't be wearing ponytails (check...just got all my hair cut off so ixnay on the onypailtay) or worn on sneakers (helllllloooooo chuck taylors until they spring holes) or comfy jeans (they really said that..."we know these jeans fit extremely well and are comfortable but you really shouldn't wear this brand after fill in the blank age!) and I started thinking...well...fuming actually...

Why is it that people (usually other women...let's be honest here) think they can tell me what I can and can't wear after ANY fill in the blank age?

So I have come up with the top ten most important things that any female of any age should wear...

(that's kind of a mouthful...I will work on shortening that up)

1.     Confidence.  There is no more important accessory than confidence.  We should all possess it and strive to give it to others.  Females seem to believe their self-worth is found in the eyes of other people.  Confidence helps remind us that our self-worth, our value, is not based on the clothes we wear (or don't wear) or how others see us.  Confidence teaches us that our value comes from within and it is something we carry with us, with or without those comfy jeans with the wrong brand label.

2.     Joy.  We must never be without joy.  Joy is one of those amazing things that just seems to multiple the more we share.  Finding joy is essential to nourish our soul and to help us always see the positives in life.  It is also a great compliment to confidence.

3.     Intelligence.  Our brain needs to be worked every day.  Never be satisfied with idea that you "know enough."  Learning is what keeps us engaged in life and you can never have too much.  Our intellectual growth should be prized and encouraged.

4.     Gratitude.  There is so little gratitude found in our world today and yet we all have so much to be thankful for.  It does not diminish the shine to thank the person who has enabled it.

5.     Humility.  This does not mean you are defeated or less than someone or something else.  This just means you recognize that you are not the sun and the world is a big place and doesn't revolve around you.  Humility reminds us of where we have come from and sets the horizon clear for our future.

6.     Friendship.  Is there anything better than being with your best friend, the person who knows your deep, dark, dirty secrets and who loves you anyway (maybe even because of them)?  Good friends are a rare treasure and should be treated as such.  If you want to know the true character of a person, look to see who they surround themselves with.

7.     Faith.  I don't mean any specific denomination.  I The belief that there is something there, something MORE than you.  My faith has been one of the most important things in my life and has been a life rope when I have felt all alone.  

8.     Empathy.  Not just the ability to understand a situation but the ability to share in others' emotions.  Empathy is what makes us humans (along with opposable thumbs) and is something we need to practice and encourage in ourselves.  It is scary to be open to those feelings but the return is priceless.

9.     Courage.  The world is scary.  Feelings are scary.  Even clowns are scary.  But each of these situations require courage.  We need to have courage to grow and experience changes.  Some changes are good and some might not be but we have to have courage to try because stagnating is death and we are living things.  We need to have courage to do that living.

10.   Individuality.  Because...well...dammit...we are individuals!   We should not try to BE someone else.  We are unique, amazing, creative, inventive, caring, funny, crazy, beings and that is enough.  Never be afraid to be who you were gloriously proud of that.