Maddie, Emily, and Evvoon

I’ve been wanting to blog something so meaningful to me for a while.  Evie doesn’t bring home pictures she has drawn from school.  She doesn’t tell me about her day.  But about a month ago, this card from Maddie came home in Evie’s folder.  Call me sentimental but I will cherish this until the day I die.

This tells me everything about what Evie is doing at school. She is connecting with people. She is making friends.  She is learning the very best thing there is to learn.

I’ve underestimated my child and I’ve underestimated her peers.  I’ve never been so beautifully and wonderfully wrong in all of my life.

You see, we love Evie so very much.  But I was too afraid to hope that her young classmates would be able to see past her disabilities.  I couldn’t imagine them putting in an effort to try to connect with Evie when Evie connects in a way that is so foreign to most.

Evie can’t keep up physically.  She doesn’t speak.  She rarely makes eye contact.  She’s been known to steal food from peers.  And she occasionally bites.  That’s a lot to swallow for a five year old.  But these kids reach out to my daughter.  They reach across all of the differences and the obstacles and they find a way to be a friend to my daughter.

And it is not just Maddie.  I’ve been dropping Evie off at school for a little while now.  Almost everyday, a young girl named Emily meets Evie.  Her eyes honest to goodness light up when she sees Evelyn.  My eyes honest to goodness fill up with tears and I get that gulpy-holding back the cry feeling in my throat.  Yes, every day I get a little heart lift from seeing this exchange.  And every day I fight the urge to hug Emily and cover her face in my tears and kisses.  This would be frowned upon by admin and Emily alike, I would venture to guess.

I’m learning to expect the very best there is from children.  Evie’s friendships give me hope for her future, they give me hope for our family, and in a really sappy maybe-overreaching-but-I-don’t-think-so way, they give me hope for humanity.  Her friendships remind me to look for the best in people and to try to find common ground–even if they bite.  We can still love people that do things that we don’t like–stealing snacks or otherwise.   Okay, don’t worry.  Quashing my urge to go all peace monger on you and will just say that we all could learn a lot from kindergarten kids.

spring

I love winter.  Up until the last month or so.  Then my heart, mind, and body prepare for the very best season of all.  Spring.  I am a bona-fide spring junkie.  Today was the first time this year that I got the springy dingy feeling.

I’m going to get carried away in this post.  Consider yourself warned.

Today was an unexpected delight.  After last night’s terrific thunder storms, I figured it might be kind of warm. But when I stepped outside this morning–oh my gosh.  Bliss.  And there is no better bliss than the kind that catches you off guard.

I loved seeing those super white, chubby, little legs dangling out of the first shorts of the season.  Those little that have been hiding under layers of fleece for months came out to be kissed by the sun (and mama) today.  Exposed arms and faces soaking up the natural vitamin d those bodies have been craving.

A first real exploration of the outdoors for Maxine.  Crawling around.  Do I like the feeling of grass on my knees?  Do I hate it?   Oh, right-right, I’m mama’s daughter.  I love it.  I think.  Maybe.

Evie pushing the limits of her comfort zone.  And.  Wandering into the back yard by herself.  Crouching down to squish leaves and mud.

Rebecca arching her head back to feel that honest to goodness spring breeze on her beautiful face.

Me with a permagrin watching my girls fall in love with spring.  Me falling in love with my girls falling in love.

Long walks in the stroller with Wally trotting along beside.  And sometimes in front of the stroller.  That’s a mistake Wally.

Open windows.  Ceiling fans circulating the beautiful spring air into the house and the stale winter air out.  At least that is what I picture happening.

Dirty feet.  There is nothing better than dirty feet.  There is a direct correlation between how dirty you are and how much fun you had.

Little reddish buds on all the trees waiting to burst open into that young green in just a few short weeks.

A little chipmunk darted in front of us while we were lounging on the lawn.  Like 1 foot in front of us.  Okay, well that part kind of sucked because I don’t like rodents.

But mostly today promised me so many things.  Of the long daylight hours.  Of the summer nights with trips to creamy stand–Maxine can have her first soft serve this year.  Today promised me that our world would soon be exploding with green.  That the daffodils that opened today are just the first of many flowers to come.  It promised scraped knees and bee stings and all of the rights of the rights of childhood passage.  It promised us long hours at the park.  And swimming.  Lots of swimming (I considered pulling the kiddie pool out of the cellar but vetoed myself since I was the only adult here).

We were promised the endless summer–like the ones that turned me into the insane springy ding dong loving gal that I am today.

Enjoy the spring!

walkin’

Today, Maxine took her first real steps.  She is so proud of herself and holds onto her little belly to steady herself.  Hey, whatever works.

Yep, I’m sure you guessed it.  Love Explosions.

Her doctors have been fretting over her resistance to walking for a while.

I have not.

Maxine is almost 19 months.  A few months ago, just before she got the croup, she was taking a single tentative step here and there.  After the hospitalization, she stopped.  Even though I never left her side, she needed the reassurance of closeness to me.  She didn’t want to take risks.  She had to find her way back to that place of security.  I understood that.

I don’t believe in bribing, coaxing, cajoling, or manipulating my children because I think they should be doing something because of some chart or because the neighbor’s kid did it when he/she was XYZ age.  I don’t believe in pushing my girls to do things before they are ready.  That includes weaning.  That includes walking.  That includes sleeping in their own beds.  That includes almost anything.

I say throw the charts out the window.  Relax.  Enjoy your babies.  Seeing those first steps at 19 months is just as sweet as seeing them at 9 months.  Resist the urge to enter your baby in the race to nowhere and live in the moment.  The rat race is always hiring.

busting up misconceptions

I’ve been trying to write about Evelyn’s recent gasping for air-turning blue-ambulance-hospital experience for a couple of weeks.  I’ve come to the conclusion that it is not meant to be written–at least not now.  So I am putting it away and writing about something else.

People often ask me how I do so much.  Because I am asked it so often, I have given it some serious thought.  I’ve come to some conclusions.  People ask the question with some incorrect preconceived notions.

The bottom line is that we all make choices about what we do.  And I am here today to destroy any respect you may have previously had for me 🙂  No seriously.  You probably think that I do everything that you do plus the things that you see me doing–like schlepping Evie to umpteen appointments, that you don’t do.  No.

I don’t clean.  Nope, I’m not kidding.  I have a housekeeper.  She comes once a week and digs us out of our filth and clutter.  Were it not for her, we’d be in some serious trouble as proven by weeks that she hasn’t been able to come.  Sometimes I will run the vacuum quickly across the floor but that is pretty much the extent of my domestic efforts.

I don’t really put laundry away.  We mostly live out of laundry baskets.  I’m not exaggerating in the least when I say that we own 10 baskets for clean clothing and 4 baskets for dirty clothing.  I do a pretty decent job of getting dirty laundry clean.  I actually empty the clean baskets—once a month?  Maybe?  On a good month.

I don’t iron.  Nope.  Not at all.  It doesn’t make sense to me.  So we wear clothing that we don’t need to iron.  I haven’t ironed in years and I’m not ashamed that I choose to spend my time in other ways.  In fact, I am proud of it.

I neglect my appearance in other ways too.  I don’t style my hair-it is almost always up.  I don’t wear makeup.  I don’t get my haircut but a couple of times a year.  I don’t color my hair.  I don’t shave–maybe a couple of times in the summer.  I mostly bathe with my children.  I steal a couple of adult showers a week but that’s it.

I sleep perfectly well when there are dishes in the sink–amazingly, they are always there in the morning for me to wash.  I don’t have much to shovel in the winter because we have our driveway plowed.  In the summer, we have our lawn mowed and raked and I just take care of the fun stuff like planting things that make me happy.  Truth be told, if it were up to me, I would turn our lawn into a field of wild flowers, tall grass, and vegetable gardens that someone else takes care of.  But I have been vetoed on all of these whimsies.  Well, I am slowly achieving the wild flowers but shhhhhh.

So now that you’ve lost all respect for me, let me try to build it back up to a normal level.  I am pretty much a single parent during the week with Scott being down in Boston.  He is home for about 48 hours a week.  We don’t want to spend our weekends cleaning or doing yard work.  We want to spend time as a family.  And quite frankly, I need to spend time alone rejuvenating and energizing for the long week ahead…so I do.

We have a lot of therapies and appointments during the week.  My calendar would probably boggle your mind.  When we aren’t doing those things, we chill.  That doesn’t necessarily mean sitting on our bottoms and doing nothing; although, sometimes it does.  It means we don’t do anything that we don’t feel like doing that doesn’t have to be done.

I had to let a lot of things go in order to be happy.  I’ve spent too much of my life worrying about things that don’t matter.  When I am old and look back on my life, I want to see days that were filled with laughter and love.  I don’t want to wait until I am 80 to realize that there is no prize for having pressed clothing or the most organized home.  I want my children to remember long hot summers filled with swimming until their hands look like prunes, bare feet, and a mother that encouraged them to seize the day and get dirty.  And eat big fat ripe strawberries right off the vine.

So yeah, back to my point.  I don’t do nearly as much as you think I do.

waving

Today was the second day that Evelyn returned my wave from the school bus window.  I’ve been waving for nearly two school years.

Love explosions.

Isn’t it amazing how one little palm held up to the glass can make my heart soar.  How it can leave me standing in the driveway waving frantically and saying, “yes, wave.  you’re waving.  you’re awesome.  you’re waving to mama” etc.  Even though she couldn’t hear me.  I went on and on.

She left her hand against the window and a little smile touched her lips.  I think she knew that her mama was making a spectacle of herself and was amused.

After her bus was out of site and I was walking down the driveway, I realized that I had a huge grin on my face.  I love when that happens.  Not even realizing that I am smiling.  I don’t think that I used to do that before I had my girls.  Now it happens all of the time and I love it. How extraordinarily lucky am I to be so happy that I get to walk around smiling without even realizing it?

Have I mentioned lately how much I love my girls?  I am grateful for the beautiful simplicity that they have brought to my life.  I am grateful that they have boiled happiness down to a little palm pressed against the window of a bus.

Retard

I’ve never thought it was okay to say the word “retarded” in a derogatory way.  It bothered my long before I was ever holding Evelyn in my arms.  But now it carries an extra little kick to my heart.  It shocks me to hear/see so many of my friends casually throwing this word around.

I’m making this personal.  Evelyn has an intellectual disability.  When you use the word “retard” or “retarded” in a derogatory way, you further exclude her.  You tell her, you tell me, that she is not accepted.  The word has become a description for negativity.  A description for something flawed.   It is a hateful word.  You spread hate.  You hurt my Evelyn.  You hurt me.  You hurt your children.  You hurt our beautiful world and all of the beautiful people in it.

I hear people say things like, “you’re being overly sensitive” or “people are too PC” when they are called on the carpet for using this slur.  What does that even mean?  Too sensitive?  Too PC?  How can we associate attempts not to offend other human beings with negativity?  If you would rather hurt my child than stop using “retard” that is certainly your right.  But your attempt to pass it off as some sort of stand is a miserable failure.

Why should our desire to use a word be stronger than our humanity?  Is our vocabulary really so limited that we just can’t drop a word from it?  A word that hurts and some of the most vulnerable members of our world?  A word that deeply hurts me.  My family.  My beautiful daughter.

Worst Nightmare take 2

The croup sunk its evil teeth into Maxine’s lungs on Wednesday.  By Thursday morning, things were bad.  Even after paging Maxine’s pediatrician first thing for a script, things were feeling dire by late morning leading to a panicky call back to the pediatrician.

“Should I call 911?”

I will never forgive myself for asking that question of the pediatrician instead of calling.

“I don’t think that is necessary.  Take her to Fannie Allen.”

Following this advice instead of my instincts–one of my biggest failures as a mother.

By the time we got to Fannie Allen Urgent Care, Maxine had a look about her that meant we were ushered past the waiting room full of patients into a room.  Human resources, spread thin during cold and flu season, followed us to Maxine’s room.   Not a good sign to have multiple nurses, a doctor, a physician’s assistant, and a medical technician all crowding around Maxine with furrowed eyebrows–the telltale sign of concern.

Some chilling moments when Maxine’s pulse oxygen dropped into the seventies.  Steroid shots were administered and a mask blowing some sort of mist in Maxine’s face.  A too bright voice told me that an ambulance had been called to transport Maxine to Fletcher Allen.

By the time the ambulance arrived, Maxine’s coloring was a shade of blue gray that caused my heart to rise up into my throat and those butterflies to fill my stomach with furious beating wings.  And Maxine, who had been working so hard to breath, seemed to be working less and less.  This was not comforting when coupled with her coloring and the looks that were being exchanged by the medical professionals while Maxine was strapped to the gurney and wheeled out to the ambulance.

I was directed to sit in the front of the ambulance.  No way.  I took my seat in the back of the ambulance by Maxine’s gurney.  Maxine looked lifeless.  The screaming I was doing in my head seemed to play out in the desperate sirens and blaring horn of the ambulance.  And I sat at Maxine’s bedside helpless.

I didn’t pray because I don’t pray.  I begged the universe to let my baby be okay.  I kept my selfish desire to scream and cry at bay and I forced my voice to be calm and soothing.  The EMT said that Maxine’s pulse oxygen was at 44.

Terror.

We pulled into the ER and were taken to a room which immediately filled with people.  I tried so hard to push the flashbacks to Evelyn out of my mind and concentrate on Maxine.  But I couldn’t.  I was reliving my worst nightmare with Maxine.

Wonderfully.  Beautifully.  Thankfully.  They were able to administer the medicine that Fannie Allen didn’t have via some sort of mist mask.  I could see it fill Maxine’s nose and mouth with the life I was begging the universe to give her back.

I was finally able to lift my baby to my chest and hold her to me.  To administer the comfort and love that are as important as the lifesaving drugs.  To cover her face in kisses and whisper the secrets of my love into her little ears.  To make promises for her tomorrows and thanks for her today.  To beg her to never go back to that terrible place again but to promise that I will go with her everywhere.  To apologize for failing her.

the croup and the becca

Last Wednesday, Evelyn woke up with this raspy horse breathing.  I would later learn that this is called stridor and that it is the calling card of croup.  As any self-respecting Anne of Green Gables fan would be, I was petrified to hear this diagnosis.  Do you remember when Anne was just barely able to save Diana’s little sister Minnie Mae from the croup?

Well, thankfully, this turned out to be much less dramatic than Minnie Mae’s case of the croup.  Thanks, in no small part I’m sure, to modern medicine (steroids), good old fashion cold air, and nice long steam sessions.  My little barking seal actually slept pretty well for a kid with the croup.  And I know this because I slept (didn’t sleep) on the floor (hardwood) next to her bed as the doctor told me she would probably be worse at night.  He was surprised that she had such severe stridor  during the daylight hours.  I think Evelyn’s stridor was just confused because the daytime seemed far worse.

This is the dirty face of recovery.

And on a much brighter note, meet Becca.

You will be hearing about Becca in the days, months, and years to come.  She is joining our family.  We have been getting to know Becca since this past summer.  She is an amazing young woman.  One of the things that I love about Becca is that she always seems to be smiling…or just about to smile.  She has the kind of laugh that makes you stop whatever you are doing and laugh with her because it is the sound of a joyful soul spilling over with happiness.

Becca is such a wonderful and welcome addition to our family for which we are so grateful.  At least most of us are grateful–more on that in a second.  We are humbled that her lovely mom and dad have given us their trust by allowing Becca to join us in our home.  We know that trust, when it comes to one’s child, is beautiful and delicate and deserving of reverence and kid glove treatment.

So there might be one member of our family that is having some growing pains when it comes to the expansion of our family.

This is the poster child for jealousy.  Cute isn’t she?

So Maxine is taking exception to some of, (okay all of) the attention that Becca is getting.  She makes her protests known in the form of loud (fake) cries of anguish.  While I am tempted to laugh often, I remind myself that transitions are hard for everyone.  And though I think that having Becca join us is good for our family, I need to respect Maxine’s feelings and work through the tough moments with her.  Putting her in the backpack seems to be just the thing to gently ease her into the routines of our new family.

 

 

Rituals

Negative 24.  That’s how many degrees it was this morning (with windchill) when I put Evelyn on the bus.

Three.  That’s how many minutes it takes the bus assistant to buckle Evelyn in the carseat.

Twenty.  That’s how many times I normally wave, sign I love you, blow a kiss, and repeat even when it feels like negative 24.  Evelyn (and her bus friends) watch expectantly for this every morning.

Ritual.  Routine.  Schedule.  Consistency.  All ways in which we grease the challenging parts of the autism wheel in our family.  As a historically fly by the seat of my pants, shop without a list, drive without a destination kind of girl, it takes work for me to keep pace with consistency.  Even though I see that the rhythm of consistency keeps everyone, not just Evelyn, in sync.

I am naturally inclined towards a clumsy chaotic state of being–where dishes pile up and my answer to putting away laundry is to buy more laundry baskets (we have 8).  For most of my life, I argued that I thrived in chaos.  But I must admit I was very mistaken.  I would have told you that I would rather enjoy life than worry about the dishes.  And I still don’t worry about the dishes.  I go shopping once on the weekend.  With a list.  And now I only need to go once during the week.  This frees up hours for me to enjoy life with my kids.

Ritual is a lifeboat to which she clings in the sea of life in a confusing world.  It might seem minor to you that she not get yogurt after her nap.  But Evelyn eats a yogurt every day after her nap.  And after her yogurt, we change her diaper.  After her diaper is changed we play (which does not come naturally) for an hour.  And after we play, we make dinner, we watch a sesame street and we start our night time routine.  If we don’t have yogurt, the diaper change is hell and play attempts are disastrous.   When Evelyn spends time upset during the day, which she does when we don’t have yogurt, she doesn’t sleep as well at night.  When she doesn’t sleep at night, the next day is shot.  It can take days to get back on track–this affects Evelyn–this affects our entire family. I shop with a list that includes yogurt ever week.

And I understand why Evelyn is thrown off kilter when the normal rhythms of her life are disrupted.  Daily rituals for Evelyn are like the traditions that soothe my soul.  I like certain dishes at Thanksgiving that take me back to childhood.  I like Christmas stockings stuffed with playing cards, nail clippers, mittens, and silly gifts like reindeer jugglers or books about survival in worst case scenarios.  I like the way my mom makes grilled cheese and the way my dad makes pancakes. Don’t we all have those things that make us feel as though all is right in the world?

Transitions are extra hard for Evelyn.  We try to dull their sharpness. We sing, “It’s bathy booper time, it’s bathy booper time, it’s bathy booper time,”  (to the tune of Howdy Dudey Time) because it makes the transition from Sesame Street to our night rituals less jolting.  And I say “Gentle, gentle, mama combs it gentle,” repeatedly in this weird and creepy voice while  comb through her curls in the bath tub–through which she would scream if I did not do the chant.

And after teeth are brushed, hair is dried, and bodies are snuggled into warm pajamas with feet, Evelyn and I walk to her room hand in hand.  She flops on her mattress and I repeat, “cozy, cozy warm, warm” three times with a specific cadence that Scott can’t get the hang of.  It’s, then, a kiss on that beautiful little face.  And the next words are built of loving stone.  “Night, night.  I love you.  I love being your mama.”   Those words are as much for me as they are for her because on the good days, they are reaffirming.  At the end of a difficult day, I remember that I do love being her mama.  Those words are my anchor and I always feel a sense of peace after having said them.

acceptance

Acceptance is such a funny thing.  Knowing what to accept and what not to accept is not always clear–for any parent.

My journey to acceptance of Evelyn’s special needs has been tumultuous and emotional.  And sometimes I don’t know if I am accepting too much or not accepting enough.

When Evelyn first started showing signs of physical developmental delays at a couple of months age, I wrote them off to mere differences in development.  Over time, although it became more clear that her differences were of a more significant nature.  But I tricked myself into believing that she was just moving at her own pace–which she was—but I couldn’t (maybe wouldn’t) wrap my mind around a permanent disability.

Let me back up.  Up until my pregnancy with Evelyn, I’ve had a pretty easy life.  I have wonderful parents who have always supported me.  I’ve always felt loved.  I never really worried about anyone because for the most part the people that I loved were healthy.  I would say now that I had an unreasonable faith that everything would always be okay–that my life would work out the way that I had expected it to.

Before Evelyn had an MRI at two years old, there was a round of really scary genetic tests.  She had been diagnosed with hypotonia (which means low muscle tone) but they didn’t know what caused it.  So there were a slew of different degenerative diseases for which they tested over the course of a year.  During that year, I stayed up late every single night googling, and googling, and googling.  What I read was not reassuring.  I lived in fear.  Finally Evelyn had an MRI at age two which revealed a brain malformation in her cerebellum.  They believed that this explained everything that she was experiencing, that she would always have low muscle tone, but that she would progress typically otherwise.

So I breathed easy for a while…we lived, we loved, we did our thing.  When Evelyn was almost three, she pretty much stopped talking and started having absence seizures constantly.  Enter a new reign of fear.  The neurologists and geneticists went into another tizzy and I think I was even more scared than I’d been the first time since so many signs pointed to a degenerative disease.

There is nothing that I can compare to worrying that your child may suffer and die.  Those words are so hard to type.  It is almost unbearable for me–for any parent–to consider these possibilities for my child.

So when the blood tests, the mris, the spinal tap, the halter monitors, and all of that other stuff were exhausted, we were left with autism to explain the regression.  And autism was a huge relief.

I embraced autism.  I wrapped my mind and heart around autism.  I accepted autism as part of Evie’s fate.  And it wasn’t devastating.  I moved forward with optimism.

Acceptance comes at different times.  Scott was slower to accept what autism might (likely will) mean for Evie.  Shortly after her diagnosis, I remember that he made a comment about her “catching up” developmentally.  Even though I gently push him towards reality, often, I don’t believe that he has fully accepted what autism means in our family.  I think it has to do with the fact that he didn’t spend time considering the horrible degenerative diseases that were on the table.  So he didn’t feel that sense of relief that washed over me when we heard, “autism.”

Last week, he mentioned that a coworker had asked him how severe Evelyn’s autism is.  He told him that Evelyn is high functioning.  I admit that I laughed because Evelyn doesn’t have speech, she isn’t toilet trained, she doesn’t have self care skills, etc.  She certainly wouldn’t be labeled high functioning by anyone else.  But it is touching, to me, that her daddy labels her as such–because she laughs, because she loves, because she has a sense of humor, because she has a temper, because we have a family language, because Evie “functions” just fine in his eyes.  And I love him for that.

Every time my husband reads one of my blog posts he cries because he is reminded of the fact that Evelyn’s delays and differences from a typically developping are truly profound.  Part of me wants him to embrace the probabilities, but another part of me sees the benefits of accepting nothing as an absolute and everything as a possibility.  Afterall, it makes me crazy that some of the people that work with Evelyn seem to have written off the possibility of her making gains with speach. Why should I feel the need to tell Scott that it is probable that Evelyn will never live alone?

My acceptance is different than Scott’s.  I don’t know which–if either is better.  I take life day by day.  I don’t plan what Evelyn will or will not be able to do.  I’m happy with any fate where my daughter is happy and healthy.  Scott doesn’t have higher hopes for Evelyn as what could be considered a higher aspiration than health and happiness?  But he definitely feels like Evelyn will make more significant developmental progress than I think is likely.

Where do you strike that balance between not allowing our hypotheses turn into limitations and dealing with things realistically?  Because both are essential.

Either way, both Scott and I accept that this isn’t what we expected or planned.  We are both surprised that it is, actually, far better than what we expected.  And while we might disagree about how things are likely to pan out in terms of our future as a family, we agree that health and happiness are our only objectives.  And I think we both have learned that happiness doesn’t live in our expectations for our family–but in our family itself.