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.

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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.

 

 

 

 

maxiness

A few little ditties about Maxine that I would like to preserve here…since a baby book has failed to materialize from thin air for her.

Her imagination is in full bloom.  And it is so lovely.

She has latched onto flying lately.  Sometimes with a cape.  Sometimes with her wings.  And sometimes on a plane.

Always in her “real sky” where we take giant bites of the cheese moon and eat the ice cream clouds before snuggling up in them for a cozy nap.

In all of her imaginary scenarios, we run into problems which honestly vex her…the safety of sleeping in a cloud without falling, messes that her imaginary seals make, you know, the usual.

Then there are the learning experiences…and parenting choices that I choose to make.

We were talking about what makes animals wild.  One of the examples that I provided was that wild animals hunt/gather their own food.  This lead to me apprehensively showing her a youtube video of lions hunting zebra.

I was apprehensive because I don’t want there to be a disconnect between my little carnivoires food and its source.  I want her to understand that meat doesn’t come from a store.  It comes from an animal.  To forget that or put that out of our minds seems irreverent to me.

At the same time as I want her to be grateful for the unwilling sacrifice animals make to those higher up on the food chain, I was a little afraid it would be too much for her to process.

I watched her watch the video of the lion hunting the zebra.

Not disturbed.  Fascinated.  Not in a bloodthirsty way.  Just in the way that a three year old processes new information.

When it was finished, she was quiet for a moment, and then asked, “Can we see one of zebras eating lions now?”  I told her why that wouldn’t work.

“Is there one of tigers eating lions?”

Another strike out.

“What videos of animals eating animals do you have on your ‘puter?”

So that put any worries, I had, of damaging her with too much information about the food chain to rest.

We were shopping for new bathing suits for the girls since they go through them so fast–they swim twice a week during the winter and about every day in the summer.

The woman that was checking us out: “And how old is your sister?”

Maxine: “Six.”

Woman:  “And how old are you?”

Maxine: “Three.  And how old are you?”

Woman: “Oh, I’m not telling you that.  I’m old.  You shouldn’t ask old people their ages.”

Aside from being incredibly funny how Maxine imitated the speech pattern, I was pissed!  Maxine was a little confused and looked a little hurt.  If it is rude to ask an “old person” her age, it is rude to ask a “young person” her age too.  I personally don’t see what the big deal about telling someone your age is.  If you’re “old”, be proud of it, own it, rock it!  As if there is any less value in being old than young.

Don’t be rude to my kid because of foolish vanity–especially when you opened the door to the question.

I wonder what that taught her.  She was clearly experimenting with a back and forth conversation with someone she didn’t know.  And she got shut down.  I probably am over thinking this one but it really sat the wrong way with me.

Parenting Maxine is so very different than parenting Evie.  In a lot of ways, there were less immediate worries with Evie.  I find myself worrying more about how conversations like the one with the lady in the store or over/under providing information will affect her in the long term.

I  know so very little about parenting.  Each day shines a light on how ignorant I am.  I have a feeling that by the time I feel partially sufficient at any aspect of parenting, we will be onto something new–leaving me bumbling through something new.

adventurin’

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.

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.

choice words

Maxine has some stuff going on with her speech–probably some sort of motor planning issue.  Anyhow she is working with a speech therapist and is coming along really well.  But I am not writing to talk about speech therapy.

I am writing to confess that I secretly love her irregular speech patterns.

I love that for some reason, she calls ice cream, “B.”  Yes, B.  Just B.  And shhhhh…but Scott and I have taken to calling it B as well.  I’m sure that is detrimental to her speech development on some level but hey, cute is cute.

I love the way “ham” sounds when she says it.  “Hem” She says it often because she loves it.  It makes me smile everytime.

And then there is, “hayah.”  Hair of course.  Loves it!

And now for the shocking part.  I may let an occasional shit or f-bomb slide out.  Yes, it happens in front of my kids.  And okay, I have made little effort to filter.  In all honesty, I would rather the girls use these words than many others that flow freely from the mouths of children–dumb, stupid, hate, you get the picture.

Anyhow, so Maxine may or may not have started repeating some of these choice words.  “Dit!”  and “Uck!”  What?  I’m clumsy and I stub my toes, bump into shit things, and otherwise do bodily harm to myself.  Often.  And the words just slip out.  And Maxine is sort of impressed with the passion with which they are articulated.  So she mimics from time to time.  Allegedly, of course.  Ahem.

Today she started to sit on her potty and sort of missed.  “Dit!” And then she looked at me, proudly maybe?  Like, “hey mom, I used your favorite word in context for the first time!”

Eep!  I really don’t have the problem with using words like this.  But I don’t want to offend other people since I am sure she won’t censor when in the company of those that would not be amused.  So, I am trying to find replacement words to encourage her to use instead of my two favorites.  Somehow, “oops” and “ouch!” just don’t have the same ringing satisfaction as a good old fashion eff or shit.  The things I sacrifice for my kids…..

 

Mae Mae the Great

Meet Mae Mae.

So much resting on these golden little shoulders.

First of all, sigh….I can’t even handle her cuteness.  Seriously.

It’s been a long time since I’ve allowed myself to go gaga for a dog.  For those of you who know me, you know that I used to have three dogs.  Three, yes, three.  When I was 5 months pregnant with Evie, my dog, Aristotle got sick.  He was only 4 years old.  He had an acquired shunt in his liver and they couldn’t do anything about it.

I hauled his little butt all the way down to Angel Memorial in Boston for a second opinion.  The second opinion was, unfortunately, that the guy in Vermont actually trained the people at Angel Memorial and wrote the book on the subject.  The really awful book.  Suck.

So I ended up trying to give him the very best last few days of his life–to let him go out guns blazing.  And when it was clear his guns weren’t blazing anymore, it was really clear.  I bargained, begged, and pleaded with a god I didn’t even believe in for him to be healthy.  And I took him to the vet in the middle of the night and held him as they euthanized him.

I didn’t take the moment alone with his body that they offered.  I just turned and left.  And I cried, and I cried, and I cried.  And in my head I knew I would never be able to be happy again.  My husband had the foresight to put away his pictures and his things.  And I instructed him to call anyone that might be tempted to mention his name, not to.  Not to offer sympathy.  No.  I couldn’t handle the mention of him.  He was already occupying my every thought.

As it turns out, I could be happy again.  But I am not being dramatic when I say that something changed inside of me and I emotionally withdrew from my other two dogs, Molson and Jacob.  Slightly, but I did.  It is amazing how we instinctively protect our organs–including the emotional barriers we put around our hearts.

So back to Mae Mae.  She reminds me of Aristotle in looks.  So, so much.  There is a good five years to cushion the pain but my heart still hurts a little when I catch a glimpse of him in her.  But I also remember how much joy there is in loving a dog.  And I want that joy for my children.  And for myself, again.

I have lofty hopes for Mae Mae.  Not only that my heart will finally mend from the loss of my Aristotle.  But that she will become Evie’s service dog.

We are going about things unconventionally.  Of course, that’s how we roll here.  We are raising her and training her ourselves rather than waiting for years on a waiting list to get a service dog.  Of course, this means Mae Mae won’t necessarily have the stuff it takes to become a service dog.  And we are totally okay with that as she is already a lovely part of our family.

Maxine is borderline obsessed with Mae Mae.  As in, individually feeding her each kernel of dog food.  One.by.one.  As in, holding her little fluffer head and bending down to kiss her.  Heart melts.  As in, laughing hysterically and pointing at just about everything Mae Mae does.  She is not so fond of the puppy nipping and scratching but we are working on that.  Maxine has been saying “don’t bite” CONSTANTLY and over and over again.  Even when Mae Mae is tucked behind the chair taking a noozer.

So little Mae Mae is settling in so nicely and nudging her little way into our hearts.  There’s just something so magical about having a puppy and watching my girls with her is more fun than I could have ever imagined.  Welcome Mae Mae!

 

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.

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.