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.

 

 

 

 

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