Slow is beautiful.

In the morning Evie gets up slowly.  She gradually tests her voice with a series of little contented moans that build in intensity.  Build into happy shrieks.

I listen on the monitor and go to her when I hear those little shrieks.  I open the door and say, “Good morning Evie.”  She is always sitting up on her bed with her legs extended straight out in front of her.  She squints as the light from the hallways creeps into her room and her pupils slowly adjust.

When I sit on her bed she smiles and hugs me.  I lift her body up.  Because of her low tone, she melts into my body.  Hypotonia has its perks.  For a blissful moment, I don’t know where I end and she begins.  It is one of my favorite moments of the day.

I carry her downstairs and our morning ritual ambles along.

She eats her breakfast slowly.  In courses.

Her face and hands are sticky from pears as she climbs in and out of my lap.

She gets up early.  Some would cringe at the hour that she rises.  But I have come to love our morning routine.  We don’t have to hurry because the hours until I drive her to school stretch out before us with comfortable sameness.  The predictability of knowing what comes next.  But being in no hurry to transition.

From Evie, I have learned to slow down.  To savor the moment.  The many ways in which Evie is different from typically developing children is especially apparent in the morning.

She offers me her, still open-mouthed, kisses in abundance.  Uncharacteristic of her age.  But wonderfully characteristic of my girl.

In the morning we are fluent in the same language.  For a few short hours, I can live entirely in her world.  Speaking little.  Communicating in hugs, kisses, and cuddles.  Almost every morning, I have a fleeting thought of keeping Evie out of school to feast on our synchronicity.  But while Evie doesn’t speed up much as the day progresses, I must return to my world of fast moving.

So I don’t indulge that tug I feel to linger there with Evie.  Where nothing is as important as a morning snuggle or a juicy pear.  Where deadlines and appointments don’t exist.  Where fast and competitive cease to be.  Where just being is splendid.  And where you never have to steal a kiss because open-mouthed smooches are dealt out freely and without restraint–even when you’re five going on six.


bumps in the road and in the neck

It is pretty hard to scare me with medical stuff these days.  We’ve pretty much stared down some of the worst possibilities that life has to offer.  But Sunday, I touched a bruise on Evie’s neck that had been lingering for longer than your average bruise.  I discovered a pea-sized lump underneath.

Fear took hold of my entire being. Why does this stuff seem to always come to light on the weekends?

I was on the phone, leaving a message, well before the doctor’s office even opened on Monday morning.  Luckily, we were able to get in at 1:00 on Monday afternoon.

Evie’s pediatrician poked the bump for a minute and promptly said, “It is not cancer.  It is not anything serious.”  Relief washed over me as he answered the questions I was too afraid to think, let alone ask out loud. He went on to examine it further and said it was some type of cyst.  If it gets infected, it will have to come off but otherwise, it is just there.

Dr. Parker is something of a hero to me.  As are many of the people that we have the pleasure of working with on Evie’s “case.”  Dr. Parker is always calm, reassuring, and there.  When I call worried, he sees us.  He is not an alarmist which I really appreciate.  And I leave his office feeling like a good mother rather than one that overreacts…which I am sure I do at times.

In the special needs community, I hear a lot of complaints about services.  Complaints about service providers. Complaints about the system to which we, as parents to kids with special needs, are slaves.  I do my share of complaining about insurance and the fact that human services is underfunded.

But I am so grateful for the wonderful people that support our family.  And there are many.  MANY.

You know those trust games that you play as a kid at camp or an adult on a team building in-service?  The ones where you stand up high, turn around, and fall backwards into the net of human arms that is formed below you?  I feel like we do that everyday.  And I stand backwards with Evie and we fall together.  The people that support our family catch us.

While I am, ultimately, responsible for Evelyn and everything that happens with her and to her, these people catch us.  And they’ve never, not once, dropped us.  We’ve fallen backwards, from our perch, into their capable arms for years.

We started receiving services when Evie was six months old from the Vermont Family Network.  We worked with that organization until Evelyn was three.  These people came into our home weekly to work with Evelyn.  For two and a half years, they shared exceptional expertise, they supported us, and rode with us while we took a bumpy road through terrible possibilities, diagnoses, set backs, and triumphs.

Evie’s case coordinator from Vermont Family Network was phenomenal.  She taught me to advocate for my child and to trust my instincts.  Her developmental educator was a ray of sunshine with the ability to gently push me where I needed to go when I hesitated.  Her SLP was incredibly skilled with a sense of humor that just made our visits fun.  Her PT was so knowledgable and has the sweetest temperament.  Evie’s medical social worker, who is still on her case, is unbelievably responsive and straight-forward.  All of them are compassionate to a fault.  Deserving of my implicit trust.  And great big heroines.  As long as I live, I will be grateful to them.

When Evie transitioned into school, I was so nervous.  Transitions from those that you trust to those that you don’t know are hard.  But we were again blessed to know and learn from two of the most incredible women I have ever met.  Not only were her developmental educator and slp skilled, but they were committed to giving Evie service in a way that goes so far beyond the call of duty.  It was truly humbling to see how dedicated they were to my child.

After two years, we had another transition into a new team.  It seems that just when you’re comfortable, you are nudged into a new situation.  We’ve experienced our bumps and hiccups which is to be expected.  This year, Evie has a para educator that has been able to connect with Evie so solidly.  Her new team has a unique set of skills and we are seeing some real gains.  The women, and man, that work with Evie are fabulous.  And while we are still getting to know them, we know that they have Evie’s very best interests at heart.

This year, we have also formed a relationship with Howard Center.  We have a case coordinator who is just wonderful.  She is so calm and she listens.  Really listens.  I cannot tell you how valuable it is to have someone that seems to hear everything.  I am trying to follow her example of talking less and listening more.  But I mostly fail.

The rules of the game in this little world are ever changing.  Keeping up with it all is nearly impossible.  Actually it is impossible.  We have no choice but to trust.  Often blindly.  Trust games are fun.  But we aren’t playing games.  This is Evie’s life–all of our lives.  I cannot imagine not having these people to lean on and to cushion our rear ends when we hit the inevitable bump in the road…or the neck.  Being a parent to Evie has opened so many doors for us.  We have the privilege to know some of the most exceptional and kind people on earth–one more reason to be grateful to be a parent to such a unique child.




Today was a really good day.

We picked up Evie’s friend, Emily, and went to Pizza Putt.  For those of you that don’t know, Pizza Putt is a Chucky Cheese-like establishment…an indoor recreational facility for kids–complete with mini golf, arcades, bowling, and a gimungous play structure.

My heart melted when we were driving to Pizza Putt as Emily and Evie held hands in the backseat of the car.  Chills.

Emily is a super sweet child that has a lovely natural tendency to nurture.  She is so wonderful with Evie–hugging her, helping her, and not judging her–even when Evie dipped her hand in Emily’s ketchup at lunch.  I guess she has a wise old soul and I am so grateful that she and Evie are friends.  Girlfriend  also plays a mean game of skeeball.

After lunch, we entered the “structure” area.  Oh.My.God.  Being zero degrees or so, it was wall to wall packed with kids.  When I say that kids were literally emerging from tiny crevices, I am not exaggerating in the least.

Emily immediately guide-carried Evie up this structure thing.  I don’t have a picture of the two of them together but here is a picture of her doing the same thing with Max.

I tried not to have a heart attack.  I lasted, maybe, 3 minutes before I climbed the structure to get Evie who was sort of stuck in that little cubby hole at the top.  She was happily getting trampled by the other kids but I figured the bottom obstacles might be more appropriate for her.

Then Max went flying up that thing with Emily.  My heart was in my shoes.  As Scott said, “She was, by far, the littlest one up there!”  I ended up performing another rescue mission when Max got caught in some netting somewhere deep in the structure.  I also plucked another little girl out of the netting while I was there that said, “Help!  I am going to fall through!”

I thought Max might be done, but no.  She just went another way to avoid the netting.  Every once in a while, I would catch a glimpse of her and Emily making their way through.

But this thing is BIG and it took like 15 minutes for the two of them to get through.  I was thankful for the windows on some of the tunnels.

Because as much as I would like to say that I am a natural free-range mama, I sure as shit am not.  It took every fiber of my being to exercise self-restraint and let Max explore with Emily.

And my bravery was good.  Because Max was thrilled with the adventure.


I have a lot of work to do on myself.  A LOT.

I’m not a bad person.  For the most part, my intentions are good.  But being REALLY good does not come naturally to me.

Recently, someone told a fib regarding Evie.  I knew it was a fib.  It made me FURIOUS.  No, let me rephrase that.  I made me FURIOUS.

I marinated in my anger for days.  I thought, obsessively, about how wronged I was.  How wronged Evie was.  And yes, how this person needed to own up to her dishonesty.  And suffer the consequences for her actions.


On me.

My anger was so deep and all-consuming.  I thought of little else.  Somewhere around day three or four of my fury, it dawned on me that I was in a really bad place.  My anger wasn’t serving anyone.  It wasn’t helping to achieve a better outcome for my child.  In fact, it was making parenting more difficult because I really wasn’t present when my mind was busy plotting how I would achieve justice.

Thankfully, I don’t get angry with people much anymore.  But when I do, I can see that it is a real problem for me.

I began, reluctantly, sifting through my emotions.  And yes, I did spend a great deal of time trying to justify, in my head, why it was essential that this person deserved to pay.  I tried to tell myself I wasn’t seeking revenge but justice.  But I knew I was being a big liar liar pants on fire.

Somehow getting that pound of flesh became more important than everything else.  How does that happen?

Thankfully, I had the good sense not to go balls to the wall before I realized what I shit I was being.  Had I followed through–I would have been a total asshole.  I would have, possibly irreparably, damaged an important relationship, and I would have compromised Evelyn.

A few years ago, I learned to assume good things about people.  To stop looking for the bad.  Horrible as it sounds, that was one of the hardest things I’ve ever done.  But it has really changed my life in ways that I could never have imagined.  It is great to have the very highest expectations of people.

Except when people are not at their best.

Separating the less than perfect action from the person is hard for me.  And it is hard because I am not all that good at personally forgiving people unless it is on my terms.  Read:  You confess to your sins, you admit that I am right, and you say sorry.

I guess that is not really forgiveness so much as it is getting my own way.  I like getting my own way.  But it isn’t necessarily the best thing for my character.

So I am working on learning how to forgive.  Unconditionally.  It is frickin’ hard!  I guess I’m not a person who lets things go easily.  Over the next weeks, months, probably years…I will be telling myself that letting go of my anger does not mean that I am accepting a wrong.  It means that after I address it, I don’t have room to store it in my heart.  To let it fester and grow and take on a life of its own.  Not if I want my life to be filled with love and happiness.  Anger cannot coexist with love and happiness.  I’ve demonstrated this to myself countless times.   So I need to release my white knuckled grip on the anger that will surely overcome the very best in me if I let it win.

boobs, pee, poop

Maxine is in a new and interesting phase.  She is obsessed with the body.  Hers, mine, and yours.

I started to become aware of this new development when she said, “boob” and pointed excitedly to my chest on Saturday.  In Costco.  Several times.  To strangers.

As the week progressed, she has talked non stop about pee and poop.  She has pointed to where it comes out of her body and where it comes out of mine.  Thankfully, she has not taken this act on the road yet.

Today, she spent a good deal of time putting her toy dog on the potty and simulating pee.  And poop.  With graphic grunts to really sell it.

I used to be really squeamish about all things bathroom.  I didn’t talk about it.  Thankfully, that flew out the window…probably from repeatedly being peed and pooped on by babies.

Anyhow, this is really amusing me.  And I love seeing her curiosity flourish even if it has the potential to cause me a great deal of public embarrassment should she push it too much further.