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.

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.

gaining the competitive edge

Maxine is starting to let go when she is standing up.  She has even taken a single step here and there.  In another life, I might have been tempted to push her to do things before she is ready.  But Max gets to reep the benefits of my parenting experiences with Evelyn.

So Max is somewhat on the later side to be doing things.  I’m completely at peace with this.  Max is a cautious baby.  She doesn’t do anything until she can do it with control and safety.  I believe in encouraging her when she makes the decision to work on something new.  I believe in applauding her efforts to try something new.  But I don’t like to give her the impression that my praise of her-that my love for her is contingent upon her stepping outside of what is comfortable for her.  My pride and my love are unwavering and they don’t ebb and flow with the development of new motor skills or speech.

I feel like, as a society, we put too many expectations on our children.  We expect them to live by graphs and charts and we have a tendency to panic when they aren’t keeping up with their peers.  To what end?  Maybe Max would have walked earlier had we worked on it more.  Maybe when people ask me if Max is walking “yet” (we will get to the word “yet” in a minute), I could answer yes.  But what would that have done to her little psyche?  What would that teach her?

Whenever I feel the urge to push Max to do something, I have trained myself to stop and think about my OWN motivations.  Is that chart looming in the back of my mind?  Did someone just ask me if she was doing “X yet?”  Am I having a moment where I am thinking that her not walking, not eating solids, not doing algebra “yet” is a reflection on me as a mother?  Because that’s my own problem–my own insecurities.

When Evelyn was younger, it would be like a knife in my heart every time someone asked me if she was doing “X yet.”  It was like fueling the fire burning inside of me…the fear that she was different, the fear that she wouldn’t catch up.  And as the gap between normal and Evelyn grew, that word, “yet,” became more and more piercing.  And when people would say, “don’t worry, she will catch up” a little piece of me would die and I wouldn’t know why.  I know now it is because it felt like it wouldn’t be okay with people if she didn’t catch up.  In a lot of cases it isn’t okay with people.

I never felt better when I put aside my desire for Evelyn to do things like other kids.  It was a true epiphany to know that Evelyn should do things like Evelyn and that her mama shouldn’t worry about what anyone but Evelyn can do.  And I carry this package of enlightenment with me like a little gift to myself when I might be tempted to enter either of my children into the endless competitions that they will be forced to endure throughout life.  My kids will be sitting most contests out.  We will work on playing hard and loving.  This gives us the competitive edge.

autism in our family weekly

I don’t always know what Evelyn is thinking.  As I sit here listening to Evelyn laugh uncontrollably at a skit on Sesame Street, my heart does those little flipper floppers that I call love explosions.  I don’t know why this particular skit is so amusing to her.  And she can’t tell me with words.  And while it is enough–will always be enough–to know that Evelyn is happy at this moment, we certainly work towards finding different ways to connect with Evelyn.

If you have a typically developping child, you might notice that when she laughs, she wants to share that laughter with you or others.  She makes eye contact, she points, she tries to draw you into whatever is inducing those delicious giggles.  Evelyn very seldom does this.  When she is laughing at something, she is her own world and she doesn’t want (or not want) to share that moment with others in most cases.  Recently, I learned what I’ve noticed for the past couple of years has a term.  Joint attention.

While I work on joint attention with Evie, I have to remember to respect that we are both wonderfully unique people.  I don’t try to drag her into my neuro typical plane of thought.  I try to go to hers.  Sometimes I sit back and observe and make mental notes as to what might be amusing Evelyn–movement, color, sound, texture?  Usually, it is a mystery.  But sometimes we will notice a trend.  For instance, Evelyn seems to get her giggle on when watching rapid movement particularly on TV.  And those breakthroughs are wonderful because it gives me a point from which to start.  I can show her other things that she might think are funny.  And those moments that she looks me in the eye and laughs are indescribable because she knows that I am, for a second, laughing with her in her world.

More often, I don’t figure it out and I don’t get it.  And while your first instinct might be to think about how frustrating that might be for me, I ask you to think about Evelyn and thousands of people like her.  Thousands of people that we ask, everyday, to live in a world that they don’t understand.  We ask them to live in the ways that we live.  We ask them to interact in the ways that we interact.  We ask them to play by our rules everyday with very little thought as to what that might feel like.  I say we “ask” them but what I really should say is that we expect them.

Think of the thing that makes you crazy, nauseous, wanting to crawl out of your skin.  For me, that is nails on a chalkboard or scratching anything in general.  I go beserk.  My mother is forever scratching at things and she doesn’t understand when I go bolistic.  I have to imagine that this is how Evie lives almost every single minute of the day.

The next time you see a kid in the grocery store–with autism or not—that is screaming or throwing a fit.  I hope your first instinct will not be to judge the child as poorly behaved or judge the parent as subpar.  I ask you to consider that the lights in the grocery store are super bright.  That there are so many people, things, sounds, and smells that are stimulating–over stimulating.  That child might be experiencing a nails on the chalkboard moment.  If that child has autism, many moments of the day may be nails on the chalkboard moments.

As a mother, I am compelled to try to blend the sharp edges of my world and Evelyn’s world so that we can both function, live, love and laugh.  So that we can delight in the moments where we are able to bridge the gap between our worlds.  So that our eyes can meet and for a second we have clarity and understanding.  As a mother of a child with autism, I appeal to you as a human being.  It would be great if you could dip your toes in the waters of her world–to see the humor in the world as she sees it, to see the obstacles in the world that she faces.  I understand if you can’t find your way to her world.  But could you, pretty please, remember that she is living in a nails on the chalkboard world and that she may not be able to cope with that every second of everyday…and if you can muster it–Respect.  Respect that she brave and graceful in her ability to live outside of her comfort zone almost every single moment of her life.

autism in our family

Before Evelyn was born, one of the worst things I could fathom for my child was autism.  I feared it.  Maybe it was some sort of premonition.  Most likely, it was just a reaction to the increase in attention it got.  I really didn’t have any sort of understanding of it.

Ironically, by the time Evie was diagnosed with autism, I was BEGGING the universe to please let it just be autism.  Let it be autism and not one of the degenerative diseases for which they were also testing.  “Let it be autism,”  I thought so often.  “I can deal with autism.”  And the diagnosis of autism was more than a relief.  It was the end of the terror of not knowing.  The gripping fear that there was some horrible disease slowly stealing my daughter from me.  And it was the beginning of another journey.  An opportunity to open my eyes.  An opportunity to understand that different doesn’t mean better and doesn’t mean worse.

Evelyn pretty much stopped talking just before her third birthday.  She stopped smiling.  She went completely flat.  Although we welcomed her smiles back about a year later, she doesn’t use her voice to speak.

But don’t think for a second that Evie doesn’t speak.  She makes her needs and wants well known.  And don’t feel sorry for me because you think Evelyn doesn’t tell me she loves me because she does every time she climbs into my lap, cuddles, and hugs me.  And she does this often.  As I often tell my husband, love isn’t what you say.  It is what you do.

Don’t get me wrong.  Autism, for us, isn’t all cuddles and hugs.  There is also the racing Evie to the bathroom door that a guest mistakenly left open.  Evie is sensory seeking.  And one of the ways this manifests itself is Evie’s obsession in submerging herself in water.  That includes the toilet bowl.  My skin still crawls when I think about the time that happened…it really only takes one time before you make sure that never happens again.  Shudder.

I know that autism doesn’t look the same for everyone.  But this is part of what it looks like in our family.  As we continue on our journey, I am going to try to write a post a week about autism or living with a child that has special needs.

Thanks for reading 🙂

I know

Evelyn is four.  You no longer tell me that she is a late bloomer or that she will catch up.  You know that I don’t believe that you believe that.  Evelyn has special needs.  You know that.  Her special needs make you uncomfortable even though you do your best to pretend that they don’t.  It pains you to know that I know that you are feeling uncomfortable.  Your words are bright and tend to avoid the topic of Evelyn.  But your eyes tell me that you feel sorry for Evelyn.  You feel sorry for me.  What you don’t say, says so much.

I am not criticizing you.  I know the awkwardness that you feel is born out of compassion.  It is born out of your desire to be polite.  You’re silent because you don’t want to say the wrong thing and you don’t know what the wrong thing is.  You have questions that die on your lips because you don’t want to hurt my feelings.

You picture my life, Evelyn’s life, the life of our entire family one way.  But really it is another way entirely.

You see Evelyn as her disability–she IS autistic, she IS non verbal, she IS developmentally delayed, etc.  I see Evelyn as my child that HAS autism, developmental disabilites, etc.  What is so hard for you and so easy for me to see is Evelyn.

You don’t see that Evelyn has a great sense of humor, that she cuddles in and gives the best hugs.  You don’t know that Evelyn has a personality that is so much bigger than her disability because it is so hard to see around a person’s disability unless you’re really looking.  You’re focusing on all the ways that Evelyn is different than your child–different than you.  You see all the things that she is not doing.  And sometimes I see those things too.  And sometimes, yes, there is a voice in my head that wonders what could have been.  But I tell that voice to zip it because oh my goodness…look who Evelyn IS!  Look at the wonderful things Evelyn is doing!  And this might be hard for you to believe.  But it is true.  I don’t want that hypothetical Evelyn.  I want THIS Evelyn.  The one I love everyday.  I want this Evelyn–exactly the way she is.  Disabilities and all.  I want this Evelyn–the one that loves to sit in my lap and cracks up laughing for no reason.  If you weren’t afraid to get to know Evelyn, you would see how very wonderful the real Evelyn is to know.

And while you are getting to know Evelyn, it would dawn on you that our life isn’t anything like what you thought it is.   Sure, we spend more time in doctors’ offices, at therapy, etc. than the average family.  And yes, we have challenges unique to our family.  But at the end of the day, we are just another family doing the best we can to love each other the best we can.  Our life does not center around Evelyn’s disability.  We don’t mourn Evelyn’s disability.  We don’t ignore it or pretend that Evelyn is just like everyone else.  Evelyn and her disabilities are a wonderful part of our family–and I stress “part” because there is much more to us than Evelyn and her disabilities.

The only thing you can do to hurt our feelings is assume that we wish Evelyn was different–to assume that Evelyn isn’t everything we ever wanted in a daughter.  Sure she isn’t what we expected but sooner or later all parents realize that children almost never are. and we love our children for the very unexpected people they turn out to be.  So ask us anything.    And please don’t feel mortified when your children ask those blunt and honest questions that only children ask, like,”why doesn’t she talk?”  Kids have to understand Evelyn in order to try to include her–just like adults need to understand our family in order to include us.   Although we understand it, there is nothing worse than being pitied and/or avoided.

We know that we aren’t going to be around forever and we are desperately trying to carve out a space for Evelyn in a world that aknowledges and appreciates her as an individual that happens to have disabilities not just a disabled person.

unthinkable question

you know how when something really wonderful happens, no matter how hard you try, you can’t explain how really truly wonderful it was to people who weren’t there?  horror is inexplicably the same.  that day, i took a deep breath as if to scream and i was so scared that i couldn’t let it out.  maybe i did, but i don’t remember.

evie was crying non stop.  something didn’t feel right.  she was breathing rapidly.  a nervous call to the pediatrician’s office left me feeling foolish for counting.  foolish new mommy.  “you have better things to do with your time than count your baby’s breaths.”

was it days or weeks later?  i don’t remember.  i insisted on bringing evelyn in to the pediatrician.  the nurse, maybe the same one that i spoke to on the phone, put a heart monitor on evies toe.  i saw the numbers jump all over.  she tried to dismiss it and tell me it was fine.  but it wasn’t.  i knew it wasn’t.  i would not allow my instincts to be brushed aside.  i could feel my voice rising, cracking.  but i was heard.

evelyn’s heart was racing over 200 beats per minute.  my mother was with me.  who drove to the hospital?  i don’t remember.  it doesn’t really matter.  my husband met us there.  the cardiologist, she didn’t seem that worked up.  i allowed myself to relax for a moment.  just a moment.  as they glided the probe over evelyn’s tiny chest, i saw the nervous glances that were exchanged.

emergency room.  i don’t remember how we got there.  but we were there and there were so many people in the room.  20? 30?  i don’t know.  this was bad.  i knew this was so bad.  a social worker came over to speak with me.  i don’t remember what she said.  but this was bad enough that i needed a social worker?  oh my god, i can’t do this.

the doctor taped my four week old baby to the table.  he taped my baby to the table.  i think the table was metal.  she was screaming.  she was screaming so loudly that there would be a long excruciating silence before the blood curdling screech.  and that is what was happening.  my blood was curdling in my veins as they poked unsuccessfully at evie’s tiny veins.

my arms were aching to hold my baby.  to comfort her.  i think it was hours.  i could be wrong.  they finally got the line started.  they started blasting medicine into her veins.  the numbers on the cardiac monitor fluttered and returned to 200+.  they were all shaking their heads.  the cardiologist was on the phone with another cardiologist.

we were sent upstairs to the intensive care unit and told that she needed to have cardioversion.  they wanted to put my baby to sleep and restart her heart?  how does a mother even make a decision about this?  google was not an option.  this was one of those leap of faith moments.  i put the life of my tiny daughter in someone else’s hands.

i don’t know how much time elapsed.  my dad was there.  i had so many questions.  actually, i had one question.  but for the life of me, i was too afraid of the answer to ask it.  so i wondered.  and i watched the same question in the eyes of my husband, in the eyes of my mother, in the eyes of my father.  none of us asked.  i really don’t remember much of anything except the answer to the question.  …cardioversion successful…evelyn okay.

when you have to ask that unthinkable question about your child.  even if it is just in your head and you never say it out loud, something changes.  your lungs never completely fill with air.  you’re too afraid to totally exhale.  your heart beats a little bit differently.  butterflies are always nearby to jump into the pit of your stomach and beat their furious wings.

this isn’t everything.  i can’t give you everything.  this is what i can give you right now.  from that day.  the day i thought the unthinkable question.

all of it.  unimaginable.  only now, i could imagine.