SOME of what it takes to care for Evie

I saw this link to a care map on a blog that I follow.  I’ve adapted it to illustrate the points that I am trying to make.


I know that for a blog called, “Love Explosions”, it sometimes feels more like anger explosions.

I’m sharing this,not to try to garner sympathy.  We don’t want or need sympathy.  We are very happy most of the time, contrary to what it might seem like when you read my blog.  I’m sharing this so that you will have a tiny bit of understanding about what it takes for us to be a family.

About our Family:  We live in Vermont.  My husband, Scott, travels about 80% of the time for his career.  Out of the state.  Usually just during the week.  But sometimes it eats into the weekend.  I (Beth) take care of an adult, in our home, who has developmental disabilities.  This is more of a joy than a job but it also comes with responsibilities that cannot be ignored and coordination issues of its own.  We have two daughters, Evie, who is six.  And Maxine who is three.  My mother, Alison, lives with us in an inlaw apartment in our home.

Evie goes to school Monday through Friday from 8:15-2:45.  She does adaptive swim on Wednesday mornings, before school, and Friday afternoons, after school.  She needs more outside services than she is getting.  For reasons relating to insurance, availability, scheduling, and Evie’s quality of life–not overscheduling her, we are not currently getting all that she needs.  You can see, on the map I made, all of the things she really needs.

Maxine has a life too.  I stay home with her and she goes to a few classes: dance, gymnastics, and swim twice a week with Evie.  And she is a pretty demanding little bugger.  She, like any three year old, does not just want to sit in the house and watch me perform daily living tasks.  Nor should she have to.

During the week, I ideally, work out three times.  This almost never happens because my kids’ needs come first.  Other than occasional doctor or dental appointments, I don’t schedule anything that relates to myself.  Not because I don’t want to, but because I can’t keep up with the three workouts a week that I consider most important as it is.  So yeah, I don’t really have a personal life.  I’ve let most of my friendships go because I don’t really have the time or energy to be a good friend.  I’m mostly okay with my personal situation right now and know it will get better as Maxine gets older.  I do feel a burning need to fulfill another part of my life–which is contributing something significant for the population of people to which Evie belongs.  That cannot take a back burner.

On the weekends when Scott is home, I catch up on sleep.  Evie has sleep disturbances which often keep me awake and I have periodic bouts of insomnia. I also spend a lot of time playing catchup on household chores, paperwork, laundry, email correspondence, etc.  And of course, we spend time doing fun stuff as a family.

We do have help.  We have a fabulous babysitter, Heather, the only person outside of our family that I trust to take care of Evelyn while I am not home.  We have a housekeeper who comes once a week.  We have the driveway plowed, etc.

We have appointments for Evie coming out the wazoo.  They often involve traveling to NH or Boston.  They often have to be rescheduled because of weather, illness, other life events.  Evie has a difficult time sleeping in places other than her own room.  More than her normal sleep difficulties.  Appointments are a disruption in Evie’s routine and they can throw her off for a week.

I feel like I spend half of my life on the phone talking to insurance, scheduling appointments, canceling appointments, getting support/advice and arguing with people about any number of things relating to Evie .  It is energy sapping.  I wish the entire world would convert everything to email.  Oh and until very recently, we had a huge amount of medical debt and our phone rang constantly.  Debt collectors–not happy with the amount of money I decided to pay monthly.  Both the phone ringing about 20 times a day and the debt itself was very stressful.

Just like everyone, we need to shop and run errands.  This is best done without Evie as she gets restless in the stores and I can’t stand the dirty looks we get.  And because the child is a geographical genius.  I’m not kidding.  She fuh-reaks when we pass a road that brings her to place that she wants to go.  It is especially fun in the summer when we have to pass our neighborhood pool whenever we leave the development.

There are simultaneously never enough hours in a day and always too many.

Then shit happens.  Evie kicks into a bad sleep pattern, causing her to miss school and appointments to be juggled and missed.  Childcare to be rearranged.  Inability to get errands done.  Or someone gets sick.  But it throws everything off kilter.  Or childcare falls through.

Evie needs around the clock supervision.  She will put anything and everything in her mouth which is both dangerous and accounts for her killer immune system.  She has zero concept of danger.  And she is prone to wandering.

Then there is dealing with support providers.  If you’ve read my blog you know that we have had issues with many, many, many doctors.  Thankfully, right now we have a fabulous team–including the very best pediatrician, Dr. Paul Parker of Richmond Pediatrics and our new psychiatrist, Dr. Jeanne Greenblatt–she is all kinds of fabulous.  You can see all of the other providers and diagnoses that Evie has on the picture of the map.

We also work with two social worker type people whom are both lifesavers when we need help.  Very competent.  Very caring.  Very understanding.  I couldn’t ask for better.

There is dealing with school.  Which tends to be most difficult at IEP time.  Which is now.  Her entire school team is sweet.  And I know they are always trying to do what they think is best.  But we almost always disagree on the important things.  It is a constant struggle between doing what I know is best for Evie and not pissing someone off so much that it affects Evie.  The very best part of Evie’s school, in my opinion, is her morning paraeducator, Sue.  Sue has worked with Evie for almost two years and she is enthusiastic, loving, positive, and respectful.  Always.  I can tell when Sue is absent from Evie’s day by her mood when she comes home–even though there are probably equally wonderful people working with her.

The question/comment people most often ask/make:  “I have no idea how you do all that you do.”

The answer is that the alternative is not doing it.  Not an option.

So, we muddle through it.  My husband and I spend almost zero time alone together.  I don’t remember the last time we went someplace without the kids.  It has been years.  And by someplace, I mean for even an hour-not a vacation.  We are ALWAYS exhausted.  Our home always feels like a cluttered mess.  And keeping commitments that have a specific start and end time is really hard–like I can’t explain to you how hard.

But we are a happy family.  Seriously.  Like I’ve never been so happy.  And tired.






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.

thought policing

Scott had one of those down in the dumps days today.  He was feeling blue and out of sorts.  As such, he was feeling frustrated with the kids, the dog, me, and I’m sure himself.  He made a comment that he was feeling upset about Evelyn.

Alarms sounded in my head.  My heart started skipping beats.  And I got that sinking butterfly wings beating furiously deep down in my gut.

I have this problem with people having anything but 110% positive about Evie.  Especially my husband.

I can’t stand the thought that someone would think, for a moment, that her disabilities have any negative influence on her propensity to be happy and whole.

I can’t even articulate the extent to which this penetrates my soul.

I don’t allow myself these thoughts.  And selfishly, I don’t allow the people close to Evelyn to express them in my presence without going to the moon and back to discredit their feelings–out loud and in my head.

I tell them, I tell myself, that they have a problem.  A big one.  How could anyone not recognize that Evelyn’s life is beautiful every moment of every day?

I was sitting here thinking about how I could convince Scott to think like I think.  He doesn’t call me the prosecutor for nothing.  And I started thinking about how I must win this argument.  Every single time.  I am relentless.

I’ve convinced myself that my way is the right way to feel.  And that no moment of doubt is acceptable for anyone else.  Not ever.  Evie is happy and that is all that counts.  End of story.  Scott’s flawed thinking that Evie will feel frustrated sometimes because she cannot speak like most of the population must be anihalated.

Somehow, I started thinking that maybe I am the one that has the problem.  You see, I almost never let negative thoughts creep into my head when it comes to Evie’s disabilities.  At first I told myself that it is because I am so evolved that I simply don’t have them.  But I couldn’t sell it to myself.

I wonder where my thoughts go?  The ones that I don’t let myself have.  I guess I bury them way deep down in the pit of my stomach and they only threaten to rise up when someone else gives them words.  Maybe somewhere in the recesses of my mind, I have told myself that it would be unfair to Evie to ever express a moment of doubt that she is, indeed, the happiest person on the planet.  That her disabilities do not matter.  Not in the least.

So maybe when I fight so hard against Scott’s fears, I am really fighting against my own.

And maybe, just maybe, there are times when I am doing Evie a disservice by not allowing myself to think the hard thoughts.

Maybe I’ve built this super defense mechanism that is damaging the people that I care about.  Damging myself.

Don’t get me wrong.  For the most part, I am super duper right when it comes to keeping everything in perspective.  To  thinking positively.  And really, not allowing anyone to entertain doubts and negative thoughts for too long.

But maybe, just once in a while, I should allow people–allow myself a moment to be human.  A moment to acknowledge Evie’s unique challenges without treating it like an attack on her happiness and going into warrior mode.

While there are some thoughts that need to be quashed without hesitation, there are others that should be considered in effort to enhance Evie’s happiness.  And while I might not be able to speak them, maybe I need to learn to make room for others to do so.  And maybe I need to give them the occasional space to roll around in my consciousness and feel their weightiness before I shove them into the underbelly of my mind.


But maybe not.




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.


Today marks the second day of being somewhat housebound due to weather and undecided tummies.  We are all feeling a little restless.  I’m feeling a little crestfallen to have been bluntly informed  that Texas Toast is, actually, not a staple of a healthy diet.  We try to eat fresh/locally/organically/healthily as much as possible.  But I was recently introduced to and fell under the spell of this marvelous stuff…I will be sad to see it go.

I got almost zero sleep last night.  Again.  So I am tired and my nerves are a little frayed.  I was making Evelyn her lunch–which she insists must happen absolutle immediately when she arrives home from school.  This endeavor is so urgent that she runs to the fridge and yanks open the doors before I have a chance to remove winter gear from her little body.

Maxine had been whinecrying because while I make Evie lunch, I meanly place her bottom on the floor.  This is quite a trauma, you see.  So when it went quiet in the family room, I turned around immediately to see my Scott’s laptop in peril.  I don’t have a laptop anymore because I have a reputation for being responsible for the destruction of at least one a year and it was determined that it might be best to invest funds elsewhere.  My husband, very kindly was forced offered to loan me one of his four devices by which he may check email/connect to the web.

To be fair, I have been very good to this laptop and it has been in my care for a while.  It has not hit the floor.  Not once. It isn’t covered in grubby kid finger prints.  And it doesn’t have a single drop of breastmilk on it.  I’ve really become a model laptop citizen–until today when it went silent.

In my sleep deprived coma, I had forgotten to put it out of reach.  Maxine had it and was slowly pulling it south.  I don’t yell at my kids and I try not to use the word, “no” because I like to let my kids discover most things on their own, because I don’t mind cleaning up a little experimental mess (or leaving it to clean up later), and because I like to reserve it so that it doesn’t lose its meaning in nagging.   I screamed, “Maxine, NO!!!”

I caught her attention.  She’s never been yelled at and I am pretty sure she’s only been told “no” a handful of times.  She was really impressed.  I expected tears–not her adorable toothy little grin.  She continued to pull that sucker.  Without realizing it, I yelled, “No!” again.  She squealed with delight and pulled it further.  I stopped myself from yelling it again because the little goober likes when “no” is screamed at her.  Thankfully my dramatic charge towards the loaner laptop caused her to lose her shit laughing–to the point that she lost limb control (like mother like daughter) and she plopped to the ground.  Yes Scott, your laptop remains intact.

I did learn that I might need to bust out the “no” a little more often so the child actually knows what it means.  And I either need to yell at her much more often (so she will know that it is not entertaining) or not yell at all.  I think I am going with the not at all.

I also learned that my tendency to leave long rambling messages (as I am often mocked for by Scott) also lends itself to the tendency to write long rambling blog posts.  I suppose I could have just written, “I’m really tired today.   Maxine almost pulled my laptop off the table.  She thought it was funny when I yelled at her.  I better not do that again.”  But what fun would that be?

Oh and I forgot to mention that Maxine makes an adorable little imp.

leaving it on a less sniveling note

Because I hate that last negative post but needed to unload it–

Maxine has been really interested in playing babies–feeding them, making them jump (they use their heads to jump), making them cry etc.  Grammy plays babies with her most often.

Today Grammy sat down near the babies and Maxine and I walked over (Maxine holding onto my fingers).  I slipped my fingers out of Xiner’s hands and she just stood there (for the first time) like she’d been doing it always.  She stood there for like ten seconds while my mom and I stared at her with dropped jaws.   Then she, ever so slowly, lowered herself to the ground with complete control.

My girl is cautious.  She almost never has an accident.  She is so like Daddy in this way.  And so unlike me.  I went from crawling to running and crashing when I was nine months old and the rest of my life has pretty much followed suit.  Daddy (I should call him Scott) is cautious about everything.

I love watching this little bubble bloom and grow….