The Status Woe

Rising above mediocrity one mishap at a time

His Continuing Sacrifice

I was 16 when a handsome boy from a military academy asked me on my first date.  He was older, gorgeous, brilliant, and I literally swooned.  He was the brother to my friend Jillena. I was worried my mom wouldn’t let me go.  She did.  Our evening ended with my first kiss.  Chaste and sweet at my front door.  Our lives took us in separate directions.  I knew he served our country and was proud and thankful for it.

This is Nick Avery.


I’m finding it difficult to sum up 25+ years. But what I want to say is that this is an amazing man, who served our country, and now needs our help. His family has worked with the VA and much like Issy’s story, he is falling through all the cracks.

Jillena has taken over Nick’s care.  She started a blog and a donation page to get him help. Please learn about this man, his service, and his struggle.  —>

Here is the ‘Go Fund Me’ page: —>

Please keep Nick, and the entire Avery family in your prayers.


Jillena posted this on Facebook today.  I could cry.  Nick is only  47….


Even a Marine needs a hand.

Thank you for reading.

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A Suggestion for School Safety

Finally a post that’s not autism related!

My husband works for a small school district in northern Michigan.  I’m not exaggerating when I say he does it all.   Principal, Athletic director, Varsity Football Coach, JV Basketball Coach, and custodian.  Ok, he isn’t really a custodian but since there isn’t a daytime custodian he is the one to clean up vomit, handle sewage back ups, major messes, refilling toilet paper.

I’m not going to mention the funding issues for our school.  It goes without saying, right?! (hello Lansing!*waving*)

You might think he looks like this guy…..

images (34)

You aren’t far off.


In addition to my children being in school, my husband is there too.  Literally our entire family can be in one building at any given time (I substitute teach occasionally.  I prefer to be called a “wandering educator” as opposed to a “sub”. But I’m at school a lot).

School safety is something I think about often.


Just about every day.


Many times during the day.


There will be more school shootings.  It’s not a matter of if, but when.  I’m not trying to be a “Debbie Downer” but we all need to understand that.  It can happen anywhere at anytime.

According to my newsfeed on Facebook, the gun debate is alive and well.  I have no reason to believe there will be any resolutions coming about guns in the near future.  Hell, for the far future either.

My husband mentioned to me that there was something out there that would allow school administrators to carry handguns.  Not a bad idea, really.  However, just having a loaded weapon in the school makes me nervous.  What if my husband was clumsy with it?  What if he hurt himself or others?  Or, in an intense situation, what if he had it taken off of him by a bad guy?

Not good.

In a crisis situation, the police would be called.  And no matter how close the precinct, it would take an eternity to get there.  I’ve seen many movies with cops.  They just don’t go running into a crime scene, either.  They slink around corners and cover each other.  Rightly so, but if children are dying, well I know one guy who would run headlong into danger.

Yes, him.


As special as he is, I know all schools have someone like him.  Who would run into danger first and ask questions later.

So I ponder the best way for an unarmed principal (or any school employee) to protect the children and others in the school.

Now my theory isn’t without its’ flaws.  But I do think it’ll work.

Here it is:

Keep a working chainsaw in the office.

images (35)

Seriously, think about it.

There is a bad guy in the hallway moving toward classrooms.  Matt is going to go running down the hall anyway.  Why not fire up a HUGE chainsaw?

I really think it would cause the bad guy to pause for a minute.

We all understand that in “rock, paper, scissors” terms a gun beats a chainsaw.  But in a chaotic situation, who knows!?!

Also, I think the chainsaw would offer a bit of protection for my beloved first husband.  It isn’t quite a bulletproof vest, but it will make it harder to get to some of his vital organs.

Look how it protects his vital organs!

Look how it protects his vital organs!

Does anyone else ever think about this sort of thing?!

Anyone? *crickets chirping*

Now to be practical, the chain saw would have to be fired up weekly and checked regularly for gas.  It would take time to maintain this school protector, but I think it would be worth it.

Don’t laugh! Allow me to take this a step further.

Have two chainsaws in the building.  Because two loud scary machines would freak out anyone.

I just think an intruder or shooter would lose a lot of nerve if not one, but two chainsaw wielding school employees came running at them.

Very Scary

Very Scary

School safety is not a laughing matter.  However, thinking outside of the box can be.  And as I said earlier,  he is going to run into the hall anyway….

Stay vigilant and safe everyone!



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Tremendous Triumph in Treatment

Just recently, I made an appointment with the Great Lakes Center for Autism Treatment and Research to get an update on Issy’s treatment and progress.  Remember, I talk to Issy everyday and I often talk to the workers, and they are wonderful at saying, “Issy’s having a great day!”  I know they have been keeping lots of data and I wanted to see how she was progressing.  Really see.  With numbers.

I had a meeting and was given this chart.  Personally speaking, I love charts and graphs.  I love the visual representation of data.  However, I recognize that for some of you, this will make your eyes glaze over, so let me break it down.


The first week that Issy was in the treatment facility, she had somewhere around 650 instances of aggression.

That’s about 93 instances a day

Or about six per waking hour

Or averaging about one every ten minutes

I had never tracked her data at home like this.  We kept an “average number of hits per month”, but when she was home it felt like she was hitting ALL.THE. TIME.  The numbers reported the first week of Issy’s treatment seem very similar to what we were living with at home.  Every day.

The behavior plan was implemented the 3rd week she was at GLCATR.

Fast forward.  During week 11 (two weeks ago), she had less than 25 instances of aggression for the week.


FROM 650 TO 25!

So if we were to calculate……

She had (math%) reduction in problem behaviors!

The graph shows an overall reduction in her problem behaviors.  She still has a lot of work to do, but we’re on the right track.  Incredible.


At the meeting, we talked about Issy’s goal date to come home as being around November 1.  We can actually consider moving that back a month if her data continues to show improvement.  It could even mean she may be home in time to start school in the fall!

It’s working.

We are all investing a lot of energy into her through prayers, letters, love, donations, and support.  It’s all making a difference.  We all own a piece of her success.

Team Issy is a winning team.


We always will be!

But please don’t forget about the others.


My friend Lisa is in the thick of it.  I’m so worried about her.  Her blog—> Here 

And there are so many more.  Hopefully Issy’s success can be used as evidence that behavioral therapy works.  Maybe insurance companies will see the value of providing intensive behavioral therapy for kids with problem or extreme behaviors.

Maybe politicians can look at our case and come up with a treatment pipeline for families who are living like we have been (hello Lansing*waving*).

If you are interested in representing “Team Issy” , you can find t-shirts here.

Team Issy shirt

Team Issy shirt

My friend and bff Keri is making tutus (she can make any size and any color). With Proceeds going to Issy’s treatment!

Any coler(s) or size!

Any coler(s) or size!

Issy’s friends Taylor, Lorynn, and Morgan, are making these woven bracelets (super cute!!).  Just email with your wrist size and style you prefer.  They are $8 with the proceeds going to Issy’s treatment!  Email to:


Bff Mindi Marshall is having a Stella and Dot trunk show with the proceeds going to Issy’s treatment.  Have you seen the really cute autism awareness bracelet?  The Show is open until the end of  April 2013! Check it out here.

If you would just like to make a donation you can check out our Go Fund Me page here:

Thanks for reading and caring about my girl!

mom and Issy

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This came in the mail to me last week with a check for $240.00.  I’m having a hard time trying to describe how I feel.  Honored, blessed, grateful.  But mainly, acknowledged.

Thank you for recognizing my fight.

Thank you for supporting me.

Thank you for mitigating the wrongs.

Thank you for the inspiration.

RAC card


RAC card inside


rac letter


Thank you,



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Autism’s hard to love club

Autism’s hard to love club


Well, this isn’t the first time I’ve found myself on the wrong side of popular.  I have a daughter firmly planted in autism’s “hard to love club”.

She is well beyond “cute toddler” stage; where she had bright blue eyes, ringlet curls, and deep sweet dimples.  And her behaviors could be passed off as “age appropriate”.

She is a teenager now.

She is overweight.  It isn’t her fault; we had her on medications that caused her to gain weight.  A lot of weight.   But there isn’t anything endearing about an overweight teenager rampaging through a house or classroom.

She could care less about hygiene.   It’s not uncommon to see her with wildly unruly hair, food in her teeth, stains on her shirt, or even smelling of body odor.   Of course, her dad and I do what we can, but we aren’t with her every minute.  At school, she may get food on her face.  Sometimes it gets wiped off, sometimes not.

food in the teeth

Teachers aren’t exactly begging to have your child in their classrooms.  People aren’t knocking at your door asking if they can “babysit” your child.  Doctors reject you, clubs reject you, and summer programs reject you.  Anyplace where rejection can happen, it’s going to happen to your child.

Rejection Just Ahead Green Road Sign with Dramatic Storm Clouds and Sky.

She is loud and she is scary.  Imagine the worst tantrum you’ve ever seen from a toddler.  Now picture that with a teenager the size of an adult, with an adrenaline infusion like those of a person lifting a car off of a loved one.   That’s what it looks like for us.  Everyday.

Every. Single. Day.

People in the autism community understand and embrace the “hard to love club”, right?

Nope.  They can’t.


Autism organizations and big names can’t risk talking about autism and aggression/violence in the same sentence.

You see, there has been some bad violence around the country lately.  Almost every time, some newscaster throws around the “autism” or “Asperger’s” label.   So good people are working very hard to clear up that little public relations snafu.

bad public relations

But what if you have a child who is capable of great violence and they happen to be autistic?

Who can champion the cause for the “hard to love club”?  None of these kids are “cured” of anything.. so no book deals with fairy tale endings.  No team managers getting into games here.  No sudden youtube fame.  Many in this club can’t even speak.  There isn’t going to be profound poetry or music coming from anyone in this group.  Well, not without a lot of treatment and help.  Does anyone care about potential except the parents?  And we all know parents are less then nothing when you deal with professionals, insurances, schools, and politicians.  Silly parents can’t fund treatment and help themselves.

And let me just tell you….young adults in behavior programs at the universities aren’t going to school to work with this club.

behavior students

This is what behavior students dream of doing.

Would some gorgeous Hollywood actress make a commercial in support of the “hard to love club’?


And would she be able to stand up to the criticism that would come from the “easy to love club”?


Many people have told me to shut the F*** up.  Not to talk about aggression and autism.  That I’m not helping “the cause”.  That I’m being selfish.

violence and autism

If you’re in the “hard to love club”, you aren’t alone.  We don’t have much, but we have each other.  Our club will grow.  Problem behaviors are a part of autism and if autism is on the rise, so are behaviors.

wrong side

We can’t really have conversations with each other.  You know how it is.  Phones get ripped out of your hands, your ears ring from taking blows to the head.  But just know that someone understands.

So here I am sitting on the wrong side of popular.  Again.  But I’m happy you’re here too. We have each other. We aren’t alone.

Your bff!


A much loved child

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Neurology Appointment Update

A quick update regarding my previous post.


You may remember the 3rd party expert (who holds my life and Issy’s future in his hands) requested a neurological evaluation for Issy.



She had one 3 years ago at the University of Michigan.


Still, to be compliant, we tried to get her an appointment.


No luck.


Helen DeVos Children’s Hopsital, our state’s next largest medical center, refused to see Issy as well.  What they said was—> There was no medical reason to see her and they don’t believe anything has changed since her appointment at UofM.


Bonus: They agreed to write a letter to the 3rd party expert!


So hopefully the 3rd party has enough information to decide if Issy’s behavioral treatment should be covered by MESSA.


We’ve been told there should have a decision by 19th of April.






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Issy funding update

Issy is continuing to do well in treatment.  It’s not a sprint, It’s a marathon.  It isn’t easy for her, and it isn’t easy for her dad and I.


I wrote in a previous post about the company MESSA.   They are currently funding Issy’s stay at the Great Lakes Center for Autism Treatment and Research.   If you remember, our CMH would only pay for 30 days.  MESSA came in and gave us a nurse advocate and a contact person at the company.

Our initial contact person with the company took our case to the top where a decision was made to “probably not” fund her but they wanted more information.  She was scheduled to come home.  Rather than allowing her to be released then possibly re-admitted, MESSA offered to pay for her care while they gathered more information.  At $765/a day we are beyond grateful.

MESSA agreed to pay for Issy to stay from March 12 until March 22.  During that time, I worked with my nurse case manager and gathered EVERY medical record and treatment report we had.  EVERY. SINGLE. ONE.  Seriously, can you imagine?

Woman Holding Large Stack of Paperwork

On March 22, the decision was made to hire a third party expert (from most likely out-of-state) and have him (or her) look at all of the information and make a decision.  So they extended Issy’s stay until April 5.

After receiving all of the medical records, the third party expert requested a neurological evaluation.  This is where things begin to take a turn.

A few years ago, we had a neurological evaluation done at the University of Michigan Motts Children’s Hospital.  The expert has this in his pile of information.  Why would they need another?


We decided we didn’t have much of a say, so we agreed to have an appointment be set up for Issy.  It was with a neurologist who has a local practice in the Kalamazoo area.  Matt and I, our nurse case manager, and staff from the center all planned on going to this appointment.  Just days before the appointment, however, the neurologist backed out, explaining that Issy’s case was too complicated.

There are two things here that bother me…….questions

*Why would a doctor back out of a basic evaluation with a new patient?  As far as I know, no one talked to him.  Did he hear about Issy from all of the newscasts and newspaper stories?  Did the expert contact him?  Did MESSA?

*Why would an evaluation from a doctor in Kalamazoo trump an evaluation done at the University of Michigan?

I asked my nurse case manager if we could just reschedule another evaluation at University of Michigan.  It’s about two hours away from where Issy is in treatment but we’ve never EVER held back from seeing experts because of the drive. (During early intervention, Issy and I drove six hours round trip for a two hour appointment EVERY Friday with our behaviorist.  And I was happy to do it! I knew how lucky I was to have such an amazing program in place.)  This is when the nurse case manager said that the only problem with that is it would be inconvenient for us to go back if they wanted to schedule an MRI.

*Insert the sound of screeching breaks here*



For Issy to have a test like an MRI done, she would have to be sedated.  And I’m not talking about a Xanex here.  She would need to be asleep.  Like, sleeping beauty sleeping.  So this means an anesthesiologist, needles (she is traumatized by needles).  Remember the whack job that said Issy caused a miscarriage? The subsequent hospitalization was at a place not equipped to handle children with autism.  They injected her with sedatives constantly.  She is still traumatized by that.  We all are.  To do the MRI, it would mean needles, sedatives, and holding her down.

Not an exaggeration.

Not an exaggeration.

I asked both my nurse case manager and my contact at MESSA about this expert.  I felt like, if he (or she) is requesting this information, I would like to know what his credentials are.  Is he a doctor? Autism expert? Lawyer? Or Accountant?  I was told that I was not allowed to know that information.

Not allowed to know that information.

I told my nurse case manager and my contact at MESSA that I wasn’t comfortable having unnecessary medical tests done on my daughter for “informational purposes only”.

My nurse case manager and my contact at MESSA told me that I could always refuse medical testing.


Then Issy’s funding goes away, right?  It goes away because the expert doesn’t have enough information or maybe because I’m not being compliant.

I was frustrated and upset and told that to both my nurse case manager and my contact at MESSA.  They both said I wasn’t grateful enough for what MESSA was doing for me and that I needed to see a therapist.

I need to see a therapist. *sigh*  Do you suppose being an advocate for your child always results in personal attacks?  Based on my experience, it does.

Take your best shot. Go ahead. I made it easy for you.

Take your best shot. Go ahead. I made it easy for you.

Issy’s treatment is being paid for by MESSA until April 19.  We are grateful.

I’m also keenly aware that treatment can be pulled at any minute.  MESSA can simply say, “our third party expert doesn’t feel this treatment is necessary or something that should be covered by MESSA”.  And what can I say to that?


My life is at stake along with her entire future.  This family is being held hostage by bureaucracy and red tape.

tied up

So I continue to try to get national attention for Issy.  I still feel (perhaps foolishly) that if a nation is watching, she will not be denied treatment.  I also feel that national attention will bring help for all of the families just like ours.

What do you think?  Am I being ungrateful?  Looking a gift horse in the mouth? Being unnecessarily oppositional?  Or am I being a protective mom?  Guarding against unnecessary medical testing and unnecessary interruptions in treatment?

Well, I’m certainly going to continue to fundraise.  Now more than ever.  So many of you have given.  And for that we are so very grateful.  We still need in excess of $130,815.00 to get her funded in treatment until she “graduates” on November 1.

donate for Issy

Please check out our Go fund me page here:

If MESSA pulls the plug on funding, we have enough from private donations to have her stay until May 13.

I’m trying not to panic.

Also, I sincerely hope I am the LAST MOTHER THAT HAS TO GO THROUGH THIS.  No mother should be told to go to therapy for a perfectly normal response to an abnormal situation.

My go to phrase is  “parents should be able to find help AND access it.”

No personal attacks

No jumping through excessive hoops

Not strung along


Here is a list of the treatment extensions MESSA has given us.  Each extension is a nail-biter.  Not knowing if there will be an answer.  Wondering if Issy has worked hard enough, if she’s shown progress, if we’ve done enough to seem worthy.   And each time I let myself hope that the call will say, “we have decided to fund the balance of Issy’s treatment.”   It hasn’t.  MESSA has put me in a very unique hope/Hell place.  Once again, I hope I’m the last mother to have to be here.

From Feb 12-26

From Feb 26-Mar 8

From March 8-Mar 22

From Mar 22-April 6

From April 6-19

5 extensions.  Yay and ouch.

Thanks for reading.


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Team Issy Fundraiser and Raffle for a NEW TV!! *squee*

I’m so humbled that another a group of amazing people are doing a fundraiser for Issy.  They are family and friends in my hometown of Battle Creek, MI

Did I mention the band ***Jam Sandwich*** will be performing?? *squee*


The fundraiser is taking place April 6th at J D’s Country Connection, 15776 Michigan 60, Tekonsha, MI 49092

Here is the Facebook link:

We are collecting silent auction items from now until the day of the event.  There are two drop-off locations if you would like to donate a product or service.

The Griffin 38 West Michigan, Battle Creek, MI


Illusions Hair Care 224 S Blackstone Ave, Colon,MI

I’m also thrilled to announce that we have a HUGE raffle item.

It’s an Element Electronics, 32 inch  brand new  HDTV!!!  I believe this is the tv if you want to take a closer look here—> 

images (23)

new tv


Thank you everyone for your continued support.  Issy is responding well to treatment.  It’s working and we’re doing it! Go team Issy!!



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Team Issy Shirts

Issy’s treatment is going really well.  She is responding and the data shows that her instances of aggression AND the intensity are going down!  Yay!!  We still do not have treatment fully funded.  The insurance company (MESSA- not really an insurance company, but close) wants more information.  They will pay for Issy’s treatment until March 22nd.  With donations we can cover Issy’s therapy until the beginning of May.

A $3 donation = 6 minutes of therapy

A $10 Shirt = (math) minutes of therapy.  She is worth it!  I promise you!

The Team Issy Shirts

These are 100% pre shrunk short sleeve cotton shirts

Black with Hot pink lettering.

Front: Team Issy and a puzzle piece ribbon logo

Back: #autismawareness Helping advocate for all of those who have been “Issied” by the system

100% of the profits of these shirt sales goes to Issy’s treatment.  That’s because these amazing companies sponsored the shirts!  Please go to their Facebook pages and websites and show them some love  ♥

Britten Banners

In Home Health Care Services

Graceland Fruit

Curtis Insurance Agency

Crystal Lake Glass.

Corner Drug and Corner Toy Store

Honor, Frankfort, and Onekama Building Supply

I’m on the left wearing the team issy shirt.  I’m wearing a size adult medium (and a black shirt under because it’s cold here).  I like my shirts roomy and this was perfect (usually I prefer large but the large was a little too big). Hope that helps…

photo 4 (1)

Team Issy shirts are no longer available.  Thank you for your support!

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Meaningful Work

I had lunch with two of my bffs, Vickie and Wakako.  They are both amazing women and it was bliss to sit and have a grown-up lunch with them.


At some point in the conversation Wakako asked me:

Wakako: What’s Issy going to do when she gets older?

Me: Well, she will be home.  She can’t have a job. Can you imagine the first time her boss asked her to do something she didn’t want to do?!  I really just want her to be happy.  I guess she can watch movies ands surf youtube…..

Wakako.  Well, I think she can to do something.  She can do something that’s meaningful AND contribute to society.  I don’t know.  Maybe a chocolatier?

Me: I guess she could learn to melt chocolate and pour it into molds.  I could have her sell the chocolates to the local stores.  Maybe?

Wakako:  Well, that or something else.  You’re just going to have to pick something for her.

Me: Pick something for her?  Like a career?

Wakako:  I’ve had students that were “typical” but extremely indecisive.  I told their parents to just pick a career for them.  If they changed their mind later, fine. But at least they were working toward something rather than just fumbling through different courses in college.

Me:  Well, Issy’s smart.  She can learn ANYTHING!  She’s only 13…. so if we started working on skills now, well heck, she would be able to do millions of things!

That moment Wakako  seriously changed my life!!! I was so excited! I didn’t sleep a wink that night.  I was going to find “meaningful work” for my daughter.  It was time that she started a “job”.

In ‘normal’ life, most 13 year olds do not have jobs.  However, most of them do homework or participate in sports and/or any number of extra curricular activities.  Issy however, doesn’t do any of those things.  But instead of those things, she will have “work” or she will go to her “job”.

A huge problem we have with Issy, is boredom.  She just doesn’t enjoy that many activities.  Sure she loves to go to the water park but clearly, we can’t do that very often.  So she has a lot of time where she is just hanging out at home.  The more unstructured time like this, the more we see her behaviors.  During the weeks she is busy with school. On Saturday she is really happy to just hang out at home watching videos or playing on the ipad.  But by Sunday, she wakes up full of rage.


Is it because she is board?  Is it just a habit that she has to rage on Sundays?  We’ve tried to structure Sunday’s but failed when we tried to take her to church (she had a melt down. I was hit several times. It was horrible for the congregation to see.). We also live an hour away from a shopping mall or fun activities like a bowling alley or large movie complex.  Sundays are just bad news for us.

Back to my point, Issy will now have to do work daily.  It is going to be a part of her schedule just like going to school is.  In fact, she will go to school ride the bus home, have a snack, then go to work.  Just like other kids go to sports practice or whatever.  She will also have “work” on the weekends.

“Work” will be in a different place than home.  Our church offered the use of one of their rooms.  She will go to work, stay for a reasonable time, and then come home.  “Working” will help structure her time and may even give her the opportunity to earn her own money.

Currently, Issy is in residential treatment.   I told the behaviorist about Issy’s “work”.  They are incorporating Issy’s “work” into her daily schedule.

So what did I decide to do for Issy’s meaningful work?

Ready for it?

Drum roll…….


Yes, crafts.

meaningful work

She will be able to make crafts that we can sell at our two local art fairs in the summer.  I’ll also set up a website where she can sell her crafts. Maybe someday we can purchase a craft tent for shows and/or maybe eventually a building for her work in!!  Who knows?!

So for now, Issy’s work is using this paper punch to punch out pretty scrapbook paper, fold it into an envelope and use a small piece of double sided tape to secure the envelope.

P11379766images (17)

I doubt that there is much demand for a large number of mini envelopes.  I’m thinking that we may not do any craft fairs this year.  But the point is that she is learning to use the double-sided tape (she has to be careful and only use a small piece), she is using a paper punch, and she is doing SOMETHING.  There is great value in her just doing something.

So I’m on a quest to find crafts that Issy can do, but not childish looking craft projects.  So please comment if you have any ideas.  Oh, and have you SEEN PINTEREST!?!?!  I’m getting some great ideas there.  I even started an Issy board!  Let me know if you want permission to pin to it and I’ll add you (and be forever grateful to you).

I don’t know that Issy will do crafts for her entire life.  At 13 years old, and starting now, she may develop into quite an artist.  Or maybe we’ll switch over to making candies and chocolates.  She may, at some point, be able to tell me what she wants to do.  Can you imagine that day?!  We would turn the world upside down to offer her any opportunity she wanted.

So what about ‘meaningful work’ with your children?   Have you thought about it?  What have you decided to do?  I would love to hear your ideas and feed back.

Thank you for reading!  This is a picture of me giving you all double high 5’s!!!!!


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