Thursday, December 29, 2016

Why Healthcare Needs to Take Advice From Business Customer Service

Ok - we all know I am not paid to work in the healthcare setting. (Someone gimme a job - I would be fantastic - hehe)

I am not a clinician, or tech, or even a receptionist in any sort of healthcare setting.

But what am I? I am the parent/caregiver of a medically complex child as well as a patient myself.

Oh and I've also spent 18 years in the world of sales.

High pressure sales with lots of goals ranging from sales to warranties to additional items on a sale.

I am pretty much an expert in the idea of customer service. SO - let me get something off my chest.....


Now I'm not trying to demean anyone or compare what I give to my customers for their hard earned money to what you as members of the society of people who work in healthcare give to their patients - wellness and health are far greater in worth than the shiny rocks I sell everyday.

But I think I could help you with your attitude towards customer service and help you in the process achieve better outcomes for your patients as well as your employees.

See you may call us patients but really we are your customers. We are using our hard earned money to receive healthcare expertise from you. So a smile when I sign in for my daughter's lab draw would probably help ease her tension at the thought of getting poked with a needle - even though she's a rockstar at it.

Your ignoring the waiting room while sitting behind the reception desk does not make your patients feel respected and looked after. When you ignore the comings and goings of the people who are walking in and out of your waiting rooms you are potentially losing customers. Your ignorance of them and unwillingness to acknowledge them may make them want to go someplace else to get services from.

Now you make think "Oh no no, healthcare is different than selling diamonds."

Um no it is not. You are providing a service that I am paying for. Just like I provide sparkly shiny diamonds for large sums of money - which you also choose to charge large sums of money for a few aspirins and a bandaid.

When one of your receptionists knows that a customer - whoops, wait I mean patient - has signed in, as you told them to, still has not been registered or called for the service they are paying for and it's been an hour.....well I can tell you what would've happened if that happened where I work....the customer would walk down the hall to XYZ Jewelers and bought there. We probably also would have received a nasty review on Yelp....

But you all think you're above that. You're not. My time is just as valuable as yours. A 60 second lab draw should not take an hour and a half when the waiting room was about empty and you have two phlebotomy techs.

You think you have no competition. You do. You may not have any competition right in your backyard like I do, but you've got it - and they exist all around you.

People are choosing to go out of state for big procedures - you know the ones that really pay you all's bills - and that's going to affect you. It's kinda like the worry we had over a big time bridal jeweler who moved into the Metro area - we worried all our "big sales" would go to them. But they didn't. Why? Because we chose the route of customer service.

We chose to be knowledgeable, caring and vigilant with our customers needs. But see we didn't just do that for our "full time" sales staff. We did it for everyone - from the top down to the little old lady who works seasonally for us for the employee discount.

Healthcare peeps - you've gotta do that too. You cannot have amazing doctors and really crappy mean faced receptionists who are completely unaware of the people sitting in front of them.

At my job we call this "training". See we train people to sell, we train people to always see the "person" in front of them. And hell all we are doing is selling rocks that actually have no real value - what you all do is where the real value is - and your receptionists can't smile or acknowledge that a patient has been sitting in their waiting room for WAY LONGER than it should be for a lab draw. Even as that receptionist sits staring at the waiting room.

Don't even get me started on the fact that you are a pediatric healthcare facility.....



By the way....I am looking for a job. :) I'm happy to be a paid consultant.....

Monday, December 12, 2016

Prozac, Vacations and Jealousy

We don't go on trips, vacations.

We don't go to Disneyland, we don't go to the Polar Express for Christmas, or take any trip for any sort of "fun" that lasts any longer than a day or two.

Well trips to spend a week in and out of a hospital. We disguise it with a few little jaunts to fun things around the city we are in - but the truth is - we are only there to see the doctors in that hospital.

This is our life.

And sometimes I get very jealous. Very jealous.

We put Aria on Prozac - because the intense anxiety and bouts of depression were just too much for an 8 year old to continue to go through. Also we knew that if we continued to allow it to go on it would spiral upwards as she approached her teenage years.

And well, let me be honest here - I decided to put her on it for one reason - because if I didn't - the person who would die in this house was not Alex, or Aria - it was me.

I couldn't work 30 hours a week, be a full time student, manage a medically complex child's medical care and have a child who would cry at every moment possible. I was having chest pains.

Happily though I can report that the Prozac has done amazing for Aria. She calls it her "emotion pill". She says it let's her not have to feel so much. Her Mommy understands - she feels too much too.

I hop on social media to see family and friends enjoying their Christmastime - and all I can think is "ugh - gotta work another 10 hour day today".

Jealousy. Envy.

I see their children smiling and having fun. I'm happy for them. And honestly, really truly honestly - I'm glad they don't have to live like we do. I would not wish this intense stress and pressure on anyone.

It is the cards I was dealt. That has to be okay. I have to work towards that being okay. It is a daily struggle.

I am still learning. I am still growing. I am still teaching my girls to be humble and resilient and to be content with what they have.

I lean on our Lord. I lean on our Heavenly Father to guide me. I fail daily.

I think what I am trying to say here is - stop comparing yourself. Someone once said comparison is the thief of joy. That person was right. When I constantly compare my life to others around me, I lose all joy I have in my heart.

No this life is not easy. I made my choices and vows and I will honor those vows - because that's what our Heavenly Father wants us to do.

So now besides having a child with Heterotaxy, CHD, Abernethy Malformation, a bad liver, spikes in her ammonia levels, scoilosis, an upcoming major surgery - I have another child with anxiety, PTSD and depression, who at 8 takes 10mg of Prozac a day.

Some people would look at this and think FAILURE.....I look at it and think "Whew buddy, we got some work ahead of us!"

I'm probably not going to live to see 90, I will probably have to have triple bypass by my mid 50s, and start metformin for type 2 diabetes by my mid 40s - but hell - did I live. I lived. We all lived.

HAHA and as I type this a gigantic piece of one of my teeth just cracked off.

But no rest for the wicked - pediatrician appointment at 11 for Aria and 2 o'clock ortho appointment for Alex today.

Better go put my war paint on.

Friday, December 2, 2016

I Don't Fit In

I don't fit in.

I don't believe voting a person - any person - into the oval office will help our country.

I will never vote Democrat. They use indoctrination and scare tactics to get votes. They call people names like "deplorables" if they vote for anyone other than their chosen candidate. They are corrupt - yet claim to be for the people.

No one involved in government is for the people - they are there for themselves.

I don't believe that we can use the government to force tolerance - any kind of government force or indoctrination is fear mongering.

Jesus Christ is my Lord and Savior.

I do not fit in inside the health care advocacy world because I am not for bringing the government into further control of the system of medicine because I have talked to people in countries with socialized health care and they know people who have died because there wasn't a physican available to help.

Yet, as the costs of health care rise, I don't see how we can not go towards universal health care.

Look - I love everyone - I do. But the fear will not get us anywhere. Giving into the fear will not get us anywhere.

If I gave into my fear of losing Alexandra - I'd never get out of bed.

I have learned to understand that the course of this life is not going to be pretty. It's going to be ugly and no one - NO HUMAN BEING - is going to save us from that.

It is why I didn't vote Obama either time - because I saw the way people worshipped him like he would save us all. He can't. He is only a man.

World forgive me for voting my conscience. Forgive me for thinking above the trials of this world and understanding that no one, no one can fix what we have done. No one currently existing on this planet can fix this.

I trust in Who holds tomorrow.

Now don't get me wrong - He pisses me off from time to time.

Forgive me for voting with Jesus in my heart. Forgive me for voting third party because she was someone who saw the corruption of the media, our government and the incessant indoctrination of the Democratic party.

Forgive me for knowing with every ounce of my being that the two party system of the United States is broken.

Forgive me for wanting equality for all - be it in pay, or respect but not in the drafting of women into war. Forgive me for thinking there is a difference between equal pay for the same work and going off to war.

Forgive me for thinking that men and women are not equals - but two totally separate entities that TOGETHER make a whole - and that each have their specific qualities that help perpetuate the species.

Note - I didn't say take women's suffrage away, I said there are differences between the sexes. Women cannot be equal to men, nor vice versa. Because women aren't men. It's like comparing apples to oranges. I also never said anything like "being Gay or Trans is a sin". That's your business not mine. I just said government has no reason to be involved in any of your personal life.

Why can't we all just be? Why can't we all just love each other and not want to have this or that or keep up with the Joneses...

Because the people who really control our government have indoctrinated you to be involved in the mass consumerism of greed.

Stop and see. The Democratic party wants inclusion yet puts labels on everything and everyone because they think its the "politically correct" thing to do. They're not in this for you.

Now the GOP isn't much better - they infringe on rights and force their own agenda. Why? Cause they are the same as the Dems....just on the other side of the aisle.

In closing - I want all of you to know I love you. I want you to be happy. I want you not to be afraid. I want you to be strong and resolute and know that there is an entity who loves you no matter what. He made you.

I know there are a few of us more "conservative" types who just feel horrendous about things and extraordinarily excluded because we refused to vote for the Democratic nominee.

And maybe I'm ignorant cause I've never been raped, sexually harassed, hit by a man, felt inequality in the workforce - and maybe you all think my white privilege is showing.

But when I see that I have no money to buy my children clothes, yet I work hard, go to college, my Husband works, yet we make less than $40K a year, I don't see any privilege. Yet, I cannot get goverment assistance. Now if I divorced my Husband and was a single Mother I could. Are we rewarding this behavior? Are we saying "have babies - your government will pay for them - do not rely on a man."? I don't know.

All I do know is I work hard. Very hard. I do not trust my government to do anything for me. Because they reward irresponsible behavior.

I'm going to get off my soap box now.

Thursday, November 3, 2016

Let's Talk Doc

Let's talk about adherance.

Like adherance to what your doctors tell you to do.

Let's talk about how when you give birth to a child with a complex medical condition, eventually YOU (yes YOU, the parent/caregiver) get sick yourself.

NO I am not talking about a cold or the flu.

I'm talking about chronic illness.

Like stress related chronic illness. Cause you can't spend the amount of hours in a children's hospital that I have and NOT get some kind of illness or disability.

Let's talk about money, as in you have no money to pay for that MRI your doc ordered because you are fucking dead broke cause you have this sick kid and every little bit extra goes to pay to travel across the country for her medical care.

That MRI is still $1500 AFTER your coinsurance, after your copay.

But now doc your yelling at me that I don't "take care of myself". And "you know the whole oxygen mask thing".

If I hear one more person say "put your mask on first"......

Look doc, I can't pay for it. I can't. I pay for medical insurance that I can't even use. Why?

Because I make just a smidge too much for state Medicaid.

Doc, I can't even pay my electric bill in full every month.

My Husband and I live on less than $38,000 a year. For 4 of us. And I just opened a bill from the enteral feeding supplier for $400....WHAT?

I have a hiatal hernia that causes me to vomit into my mouth at night that then goes into my ears and burns them. I'm sure you know doc how all those things are connected....

I have cluster headaches that put me on my ass.

I have a cyst in my sinus that causes me to not be able to breathe out my right nostril.

No I didn't get the sleep study done doc, I couldn't afford the copay of $250 to have it done. But I've probably got sleep apnea. I mean I do fall asleep behind the wheel of a car - with my children in the backseat.

I've got 10 teeth in my mouth that need fillings or pulled or root canals. I just wait til they go black and absess because all I can afford to pay for is the $100 to pull the tooth. Call me REDNECK DANI from now on....

Look, Im doing the best I can. I work 20 to 25 hours a week, go to full time college, and manage her care. Her care alone is a full time job.

So don't tell me to take care of myself. I don't have the time to. Let alone the money.

Because Doc, I'm just trying to put food on the table and keep the roof over our head. Neither my Husband or I make more than $13 an hour.....I make the same I made in 2009. Working for the same company for almost 9 years, and never one increase in pay. So you tell me how you expect me to pay for that MRI, or that sleep study.

Doc, we got to fix healthcare now. Cause if we don't - you're going to have medically complex children without parents to care for them because we will all be incapacitated.

Doc, you have made it so these children can live, but you have not given us the tools to raise that child.

You have made them compatible with life, but it's not a normal life. They can't do what other children can. Which means I can't do what other parents do.

SO yeah, doc, I know I will be having triple bypass surgery at 56. I figure a zipper scar will look good on me, at least she and I will have matching scars.

You don't provide us with mental health care, or social work to help us navigate it. You've gotten better since 2007, but it is far from good. And those of us from back in those times, you have neglected and not offered anything to us. You just figure since we put on that face of "I can handle this" - that we are.

Oh I am handling it - I am. I'm taking care of her. Ensuring her survival. But you know on my days off and she's at school, I sleep the entire day. That is not normal. Especially after I already got 8 hours the night before.

Fix healthcare now. I want to help you. I have great ideas. Single Payer. It is the only way we can continue to survive.

So what I am trying to tell you doc is I don't pay for health care - I pay for sick care, and even at that, its only when its REALLY sick care. Cause I don't have the money to pay for anything unless it is really that bad.

Then you have the nerve to question my pain level. Oh that's a whole other blog post.....

Tuesday, October 18, 2016

When Time Stops

Sometimes time stands still for me.

It will occur in a moment where I am doing something very random - then suddenly I see the distinct curvature of her back - and I am hit with the "what if's" - the "I missed somethings".

Or I'll catch a glimpse of her zipper scar, the difference in the color of the skin compared to the perfection that surrounds such an agonizing scar.

Time stands still. I see my life flash before my eyes.

I worked too much.

I should've forced her to wear the brace - even though her ever changing abdominal distention would've made it horribly painful for her.

I remember those two beers I had 2 weeks before I found out I was pregnant with her. - Did I cause this?

You'd think I'd be far over this by now - she's going on 10.

Truth is - it just doesn't happen as often.

But those memories - those feelings of guilt or regret - they never go away when you have a child like my Alex. You will spend the rest of your life second guessing every move you make in regards to their care.

You've been entrusted with the survival of this child - and haven't we all? We all are responsible for our children's survival - be them sick or not - but this is a special kind of survival.

I don't even have the word to describe it. But if you live this life you know EXACTLY what I'm talking about.

It's like this - you know your their Mother but your first and foremost their doctor. No I am not kidding. I am first and foremost her doctor. I had to be. I've learned the ability to diagnose her - with about a 95% accuracy - even with an ear infection. How? Because I had to. I prescribe the treatment, sign the papers allowing the treatment, just other people who learned how to cut do the physical work of it.

I have often longed to just be her 'Mother'. I'll never just be her Mother.

And after a decade of doing this I can tell you this one thing.

Even though you feel time stops (and it kinda does - spend some time in a pediatric ICU unit - You'll find out) - Life Goes On.

She goes on. I go on.

Once that surgery is over, you'll go home, they'll grow, and there will be instants of time that stand on the edge of a knife that remind you of that moment you handed your baby over to some dude in a lab coat who's going to cut open their chest and reroute their heart and it's vessels plumbing.

Another surgery will come, you'll exist in fear for appointments. Always waiting for the shoe to drop.

But LIFE will go on.

And before you know it - they're 9 going on 10 - with a 50° degree scoliosis curve, a shotty liver and jumping on couches like they don't have half a heart.

So I urge you to remember in those moments that time stops to remember the first laugh, or first roll over, or their first tooth falling out.

Remember the first time they turned purple as all get out yet ran back to you like it was nothing for them.

Remember those moments and remember that life will move on.

Saturday, October 1, 2016

The Witching Hour

Darkened shadows dance across the inside of my eyelids
Lightning strikes and renders me helpless
The Witching Hour has come and I am the subject of her misery

Awoken from the depths of slumber
The fire in my eyeball sparks every synapse to scream
I am caught between the living and the dead
Unaware of the light of dreams

Ice picks now
Deep thrusts against the soft matter of my brain
I'm all alone now
I want to scream but nothing works
I have become prisoner in my own body

The Witching Hour leaves me as quickly as she came
Yet leaving the Devil's mark on me
Damned to suffer her tortuous love

I sit and stare at the face in the mirror
Eyes black like death
She's taken it all from me
I am lost in the abyss of pain
Ever anxious of the next time her cold hand of pain comes to visit me

Sweetly I am taken off by the pharma nectar that flows through my veins
The oxygen of life taking me ever higher to avoid her touch again

I cannot be free
I cannot be safe
I cannot be trusted
I cannot be loved

Loved only by The Witching Hour
Who removes me from the true loves of my life
Claiming me as hers

I am deeply within her darkness
Escape is futile
I begin to love her back for her painful touches
Becoming less human and more unhuman with every breath

The Witching Hour has consumed me
And I am lost in the exquisite perfection of her painful touch.....

Sunday, September 25, 2016

Wal-Mart Panic Attacks

I woke up feeling fine this morning. Not overly stressed, or worried - just ready to enjoy a day with my girls. I didn't think it would turn into a situation like it did.

I had a panic attack in the Halloween aisle at Walmart. Full out blood pressure through the roof, sweating, hyperventilating, panic attack.

At its onset I couldn't figure out what had triggered it - but once I was past it I realized what it was.

I had walked by the baking aisle before going down the Halloween section and had thought about making a cake - I've been wanting to do some fun baking stuff with my girls - and then as I picked up the box of cake mix, I just said out loud "No" - then inside my head the litany of 'stuff' requiring my attention began to fly through my mind - you've got a paper to write due at 9:59pm tonight - You've got to go to work tomorrow and Tuesday and Wednesday is PT and 2 Parent Teacher Conferences - the laundry needs done - you better get the girls showered fast after dinner so you can work on the paper - You need to do your MedX podcast - Then you've gotta work the rest of the week - and also Saturday and Sunday - Oh and you need to change her GTube out....

My brain went so lightning fast that it had gotten itself a week ahead of itself and it's necessary duties.

And then the hyperventilating, crushing anxiety hit. It's like running a mile, but not even having taken one step.

I don't know why this happens. It has no rhyme or timeline - it just happens when it wants to.

But what spurred it was the baking. What my heart wanted was to be with my girls. But my brain couldn't see past the ever growing to do list.

I often wonder how I can change what seems like an unchanging landscape of trial after trial - insane moment to insane moment.

Is this really what life is supposed to look like? Maybe not for all - but I'm beginning to think it does for me.

Messy. Destructive. Beautiful.

Perhaps the panic attacks are just par for the course.

Perhaps this is just what life has in store.

I just really want to be with my girls.

So much it induced a panic attack in me.

If I say I'm fine - I'm not lying. It's a half-truth. I put on a great show. I'm fine most moments, until my head and heart become enemies of one another.

Duality. Perhaps that's what can best describe my life. Duality.

The Mother who works, goes to school, advocates - yet there is this inner person who is clawing at the edges of a deep pit of worry and anxiety.

Whatever it is I am - I just want it to be with my girls at my side.

Thursday, September 8, 2016

A Journey of Self-Assessment - From The Mind of a 9 Year Old Medically Complex Patient - Stanford Medicine X

Alexandra Mae Edges was born at 4:28pm on July 5, 2007. She was born with Heterotaxy Syndrome, Complex Congenital Heart Defects, and a rare liver vasculature anaomly called Abernethy Malformation. She has undergone 5 open heart surgeries, an abdominal surgery, countless cardiac catheterizations and other procedures. She has been evaluated for a combined heart/liver transplant by three of the most prestigious centers in the U.S - and has been denied all 3 times.

She is my daughter. Her journey is my journey. I tell her story until she is able to tell it herself.

We do not often talk about mental health in children, perhaps maybe about ADHD, and other issues, but never about the impact that complex medical conditions and chronic illnesses have on children. This post - this story and journey is about physical and mental manifestations of Alexandra's condition, and how her therapist uses the idea of self-assessments to help Alexandra to come to terms with her negative feelings about herself. Alexandra began this therapy back in March of 2016, and has come a long way in her therapy.

Alexandra taken by Gilles Frydman April 2016
Gilles description of her "Sadness and Wisdom"

Alexandra's first brain self-assessment.
September 1, 2016

Oftentimes Alexandra portrays her brain as happy. It is not until she beings to describe her internal organs, be it thoracic or abdominal organs, and even her limbs that we can see her true feelings about herself. At this point in her life her emotions don't seem to be connected to her brain, they are connected to how her body 'physically' feels. 

Alexandra's brain self-assessment September 8, 2016.
Described by her as a "happy" brain. Therapist wondering why the line of declination from red to black shaded brain matter.

Initial drawing of her heart, March 2016

Once we begin to look at how she perceives her organs, we can see how her physical body affects her mental state of mind. Here you can clearly see the lines drawn on her heart which she described to her therapist as "all the flipping heart surgeries I've had - its broken". She refused to tell the therapist what the olive green mass was. 

Heart by Alexandra. July 2016. 

As her Mother, this particular picture is very hard to see. She has labeled emotions inside her heart, and also you can see the line of broken (spelled borken to her). Thankfully there still looks like a lot of love. 

Cocoon heart. August 2016. 

Notice how the line of broken is gone in this picture. She says her heart is in a cocoon and it will turn into a butterfly soon. The heart has a smiley face. 

Happy Heart. September 1, 2016

Alexandra gives us a peek into her inner psyche best when she is faced with a whole body self-assessment. She gives her organs emotions, and describes what they do or do not do. 

Initial self-assessment. June 2016. Alexandra describes this as "poop". 

Self-Assessment June 23, 2016 Alexandra called this "AHHHH!" 

In January of 2016, it was discovered through cardiac catheterization that Alexandra's left lung was no longer helping to oxygenate blood as it was riddled with pulmonary arteriovenous malformations. Here you can see how she labeled her left lung all colored in. She also told her therapist that in this picture she feels like "poop". We get that a lot with this young lady!  

Self- Assessment July 2016. "Sad Liver"

One of the most interesting things I find in analyzing her self-assessments is the fact that she gets her anatomy correct. Her liver is in fact more towards the left, which she correctly displays here as if she was looking down at herself. Interesting enough as well she also has told us a story about leaving her body during heart surgery and seeing her body lay below her with her chest open and blood everywhere. She can even describe the surgeon and the noises as during this particular surgery she had a bad bleed that could not be found and the surgeon was scrambling to find the bleed. We almost lost her that day. Eventually she was given Factor 7 and came out of the bleed. Only to find out that 3 months later she had over 100mL's of free flowing blood in her abdomen during a laparoscopic  LADDS procedure. 

 Self- Assessment Late July 2016. "AHH for Chicago"

She has written a curved line here and explained that this was her worsening scoliosis. She will one day have to have spinal fusion to correct it. In early August of this year we traveled to Chicago to see a world renowned doctor who specializes in Abernethy Malformation. She underwent a venogram to see if there was any semblance of a portal vein. She indeed has a porto-systemic shunt that has pulled blood flow away from her liver and is never filtered by the liver. The doctor can do surgery to correct this shunt - but it is a very long, difficult recovery. Alexandra was very concerned about this. 

Self-Assessment August 18, 2016. Emotional session. 

According to Alexandra's therapist the above self-assessment and session was the most emotional to date. Alexandra cried for the first time. She explained that she was terrified of having the surgery to correct her Abernethy Malformation. 

Self-Assessment late August 2016. "Gone on Vacation"

Alexandra has an over 50 degree curve to her scoliosis. Braces have not worked for her because of the ever differentiating size of her abdomen due to high central venous pressures and an enlarged liver. Because of this, her left leg has begun to turn in as her hip juts out from the curve in her back. It causes her pain. She cannot walk long distances. She told her therapist that it goes numb and "Goes on vacation."

Self-Assessment September 1, 2016

Self- Assessment September 8, 2016 "Surprised"

The high cost of health care is no unknown matter. After much deliberation, my Husband and I decided to postpone Alexandra's shunt banding surgery til this Spring when we are more financially stable. Alexandra was very surprised, and is happy. Again here you can see that her left leg is again "gone". It seems all her organs are "surprised".

I truly believe that the idea of self-assessment in chronic illness and medically complex patients is something that can hold so many valuable insights into the minds of some of the youngest patients out there. Mental health in chronic illness should be a mandatory part of the treatment plan. 

This is only the beginning of Alexandra's journey of self-assessment. While I have done my best here to try to give her voice, I truly believe that if we all take the time to really look at her drawings we can see a little girl with a big health problem and a very strong spirit. 

The Day We Took Her Home July 2007

The 4 of Us - The Edges Family 

Sunday, September 4, 2016

Face Collector - Stanford Medicine X

I sit in the surgical waiting room, surrounded by family.

I feel quite alone, even though the banter throughout the room is lively.

They are cutting into my child's chest, I hear the surgeon say in my mind "retractors".

I've watched enough open heart surgery videos on You Tube to know exactly what this looks and sounds like......and this is her 5th heart surgery. She's only 4.

That reality was over 5 years ago. It was when I first coined the phrase "I collect faces".

But instead of focusing on the reality of the operating room in this story, I want to reflect on the reality of the people outside of those operating rooms. I even want to reflect on the faces of clinicians as they come to update families of those patients in the operating rooms.

I see the faces of  parents, grandparents, friends, of these children, and the gamut of emotions that run across their faces from moment to moment. And over the years I have collected these faces full of emotion, like a collage in my mind.

The face of my daughters cardiologist as he comes to update me, its his bad face, the face that says "what is happening in there is not good". His eyes are like black holes, lips pursed downwards in this half frown that is the most frightening face I have ever seen. He didn't need to speak. I knew what he was going to say "She's bleeding, he can't find the bleed."

The look on the face of the Mother sitting across the waiting area from me. She was listening. She heard. She saw. Her eyes perky, her ears almost jutting out from the side of her head, eavesdropping. I watched as her eavesdropping turned into fear. Her eyes squished like she had been sprayed with lemon juice in them, and her cheeks became pale. The face of fear. Fear for me, and fear for her child.

That same Mother's face turned to overabundant joy as her child's doctor came out, with a bubbly walk, and a smile, as she was updated that all had went well. She would see her child soon. Her eyes became bright again. Blue like the ocean. Her cheeks red with blood. Her lips in a smile for the ages.

Not only have I collected faces from that day, I have collected faces for the past decade.

The face of my dear friend, as she watched my 8 year old daughter take the pain of an IV insertion, with no tears, no fear. Her face was in wonder. Eyes big, ears perked. leaning over the bed, mouth agape in wonder at the amazement of strength of this child. Then shame as she felt bad for feeling sorry for herself in her own chronic medical condition. I felt horrible that she felt that shame. To me my child and her are one in the same. They both exhibit strength and fortitude in the face of incredible pain. I look up to both of them.

The face of the nurse in the room across from us as a code was called on a 3 month old baby. She was dripping tears, but attempting to stay strong. Her eyes were like swirls of energy, emotion. The red flush of adrenaline as she squeezed the bag around the baby's mouth in between chest compressions.

When I think back on this medical journey. this story of medicine, I see faces.

Faces of clinicians, nurses, administrators.

I remember the face of a CEO of a hospital as he said "People are leaving this facility to get care out of state, because we can't give them what they need". His downward lips almost hissed the words. The shame and embarrassment as he spoke oozed out of his eyes. I swear his entire head of hair turned gray in that one sentence.

In the world of medicine, I see faces. Faces of humans. Humans being. Humans working, living, dying, crying, laughing. Screaming. Existing in agony. Dark circles and bald heads. Faces. Faces of sadness and happiness.

Faces with cannula's on them. Eyes red with pain. An older gentlemen as he comforts his wife and assures her he is okay. And he's the one in the hospital bed.

The face of my Father, as he pats his first granddaughter on her head as she is hooked up to a ventilator, with chest tubes full of blood coming out of her, and a fresh zipper scar to be proud of. My Daddy never cries. Here I see his blue eyes well with tears. The grey hairs in his mustache trembling as his upper lip quivers in emotional pain.

The face of a emergency room pediatrician who was in awe of how I had learned to manage my daughters care. His eyes large. Pushing back in his chair, as he shook his head at the complexity and exhaustion he must think I felt. He was right. There was exhaustion. His face lightened when I said she would turn 9 this July. His lips smiled and his cheeks turned pink with happiness.

Its our faces, our human faces that give us away. It's in these moments, these moments of collaboration, of desperation, of living, and even of dying that we learn what it means to be human.

And the world of medicine is filled with all of them. Every emotion, every frown, every smile, every tear, every IV insertion, the human is there.

The human is there when that code is called. That face of the resident doctor who had to call his first time of death. The withdrawn look he has as he looks at the wall clock. Eyes falling deeper into his head, lips in a grimace. His face shows his humanity. His face. Its in the face we see the medicine. Its in the face we see the work.

So I collect these faces. I replay them from time to time. Searching them for visions of what it means to be human.

The world of health care, the world of medicine, is the art of humanity. It is the respecter of life. It is the preservation of life.

I collect these faces.

I am the Face Collector. And I am human.

Friday, July 22, 2016

I can't write - and that's okay

I can't write. I can't write.

As someone who writes to release emotion - this is a very daunting realization.

I can't write because I can't tell the truth. I can't tell the truth because the truth will bring me to be judged - and judged unfairly so.

So I can't write about the darker side of life right now. I cannot reach that place deep inside of me that lives inside the dark.

My Husband and I are closer than ever. It's amazing. We got back to that team and partnership we used to be.

My girls are growing up. I see it on their faces. I hear it in their voices. My greatest achievement will always be them.

I can't write because I feel unfairly judged by a society that only accepts one truth.

I feel like I cannot say my opinion because it is not the same as those whom I deem some of my best friends - and because of that they unfairly judge me.

I want the truth told. I want us all to be free. I want us all to be safe. I want us to live with peace. I want us to all support one another.

But the truth cannot be told. Because I can't write it right now.

I can't write. Because I am not the same. And I feel unfairly judged for it. Judged by those who desire so much to not be judged.

I am tolerant. I am understanding. I am caring. But I will always use the common sense my parents instilled in me.

There is always two sides to every story. But our inability to listen to each other's sides without judgement is far from happening.

Sunday, June 12, 2016

This is Who I Am

I share too much.

Ok, I get that. And everyone is entitled to their opinion.

I sure as hell am free to express my own.

But what about the journey? What about the courage to own the story no matter the horrible, ugly truth of it?!?!?

I'm going to be honest, people - It's an ugly, nasty truth. It's the story of my life.

And I get that it can make people uncomfortable.

Not everyone can stand in the dark and know that somehow, someway, they will find a way to get out of that dark or that they may actually never get out of that dark but they can live a pretty good existence inside that dark.

But let me tell you my truth - There will be times I will stand in the dark, and there will be times when I am in the light.

But there will never be a 'cure' for this.


Because this is who I am. This is myself.

I've been blessed to live an extraordinary life - and it is far, and I mean really flipping really far far far from pretty.

I intermittently write this as I whip baby food and formula together for her night feeds. (I give baby food to an almost 9 year old)

I'm writing this as I put together her nightly meds and try and remind myself I have got to take her INR tomorrow.

I'm about to - with my Husbands assistance - strap her into a device that looks like some sort of torture.

I can't - actually I will not - be pink rosy glasses everything is hunky dory. It is completely out of my nature and I am so tired of attempting to be something I am not.

I will never be happy. It's an impossibility for me. It does not exist in my emotional vernacular.

Doesn't mean I'll be gloomy goth all the time either.

What it means is - I will be me.

Sometimes I will be the "Hi my name is Danielle and my favorite color is florescent clear" - and sometimes I will be the "I've given up, I can do no more, everything sucks Danielle".

I'm okay with that.

But people you've gotta be okay with that too.

I know you want what's best for me. I get that. But you can spend the rest of your life wishing and hoping for that - but I can tell you it's a super long shot.

I mean like you'd probably win the lottery over that.

I haven't given up hope. Far from it.

I'm just becoming more comfortable in who I am.

This is me. This is who I am.

Tuesday, June 7, 2016

Depression and the Inability to Relax

I cannot allow myself to relax.

It's become an increasingly difficult issue.

I'm exhausted.

If I relax - I mean even for a minute - I am bombarded by intense emotions that I can't control.

This happens even when I'm at work. If I don't have a customer or some sort of 'busy work' directly in front of me I fall into an abyss of darkness.

Yesterday afternoon - after my chiropractor appointment - I felt a Cluster Headache coming on. But instead of attempting to take care of myself - I chose to entertain my girls by taking them to Grandpa and Grandma's house to go swimming.

When I got home I chose to check the mail. I had recently sent in some paycheck stubs to Alexandra's SSI to make sure our payments were correct and I was hoping to get a letter stating that all was situated. Instead I got a letter saying she would recieve no money for the month of July.

And then she hit. Like a complete ton of bricks she hit me like a train. I started screaming. I yelled obscenities. This bitCH cluster headaches.

I begged Kevin to let me go to a mental institution.

She came as quickly as she went. I turned into a puddle of tears. And I haven't stopped crying since. This bitCH cluster headaches.

I am in a deep depression.

I cannot see the forest for the trees.

My insides are like a jumbled mess of insanity with no real direction of how to move. Without the constant input of things to do, I am falling into a sea of dread.

I can't keep my head above water.

My house is such a mess that I can't figure out where to begin to clean it. The laundry pile is so big I just give up.

I have given up.

I work so hard to try and make more money for this household.

I can't relax. I can't do anything that allows me to be alone with my thoughts.

I can't do anything. I can't even eat.

I have forgotten to take Alexandra's INR for a month now. I have forgotten meds.

I have forgotten how to shower. Myself or the kids.

I have given up.

I can't see anything. My Mother tells me the trials will never be over. I have nothing left to battle those trials anymore.

My chin hair as well as my upper lip hair is going to be a beard soon. Who cares? I have given up because I can't figure out the next way to move. I can't move. I can't do anything.

I need to see a therapist but that costs money - which I don't have.

We can barely afford the meds for myself and Kevin who also has some new medical conditions.

This is what the constant struggle to survive has done.

I am angry I am so angry. I am so mad because there are people out there so stuck on themselves who have a connection to this family and could've made things easier but they chose to piss away millions of dollars. In the span of 7 years. The selfishness astounds me.

I'm going to keep trying. But I am severely struggling. I am completely raw and very angry.

Very angry. I am so mad. I have never before felt the fester of anger and resentment like this.

I have never sat in this abyss of depression and looked at the destruction around me and not been able to do something about it.

I don't know what to do.

The abyss draws you in. It is almost a comforting feeling of nothingness.

That's all I can say for today.

Sunday, May 29, 2016

My Visitor

I used to think I'd never make it to 21
And in some ways I haven't

I tried to slit my wrists that night
When you told me I wasn't right

I left things behind that night
And moved on to what I felt was right

Now I find myself lost in a maze of medicine
Desperate to find relief and peace

My nightly visitor who wakes me from my precious sleep won't let go
She breaks me open into a fractured version of myself
Unable to fend for the love I so desire

Brain on fire, emotions on high
My visitor calls, whispering sweet and deadly pain in my ear
"I'll distract you" she says
"I'll give you more fires to put out" she professes
Once again I fall for the pain she promises

I'm broken
I've been broken for years
Now my brain is being torn apart
By my invisible visitor

This invisible visitor that I give myself over to
I try to escape her
Downing pills to get through the day

It only masks her tortuous rampages
Beating me senseless
Another pill, another shot
To get rid of something I have already forgot

I know not what will become of me
Save me, rescue me
But alas it's up to me

And here I lay stuck.

Sunday, May 22, 2016

Non-Rhythmical Poetry

I remember when I first met you
Through the computer screen
I thought you were the best thing I'd ever seen

You moved across the country to be with me
We thought we were lovers from a past life
We promised this time we would make it last
That we wouldn't lose each other to the arrows of this world

But then we made her
I gave myself to her because her survival was tantamount
And you retreated to the corner of your mind that exists in the void

Like robots now
We do what must be done
Passing each other like ships in the night
Working towards the same goal
But not working together

Now this beast festers in my brain
Clawing its way through everything left that's worth anything

I am desperate to find relief that will not come
Waking at the witching hour to the bang of her nails ripping my brain to shreds

The emotional pain has taken its toll on you as well
We spend our days talking about how many pills we took to get through the day

Its been almost a decade strong now
Living in a place of survival
Rushing her from doctor appointment to doctor appointment
Traveling the country desperate to find someone to save her life

I'd gladly give my life for hers
I know you would too

We lost each other in the aftermath
We aren't lovers anymore
Shadows of the promises we made
Friends still
Yet unable to confide in one another

Find me
Rescue us
Whisper to me again
The way you used to

Speak to me
Force me to speak to you
Set me free

Remember why

Wednesday, May 18, 2016

I Forgot To Ask For Refills

I forgot the refill scripts.

Because the doc kept talking about how Alex is "overweight". Um kay.

Now I have no refills. Because I went into panic mode and Alex is saying to me while I am talking to the doctor "Mom can we go to PetsMart? I want a Beta fish, I want a male beta! He has huge fins!!"

All the Mom's out there get me because as soon as I heard her speak my body immediately turned and payed attention to her.

The doc was so preoccupied with typing into the computer for the EMR that she never even went over the meds with me.

I'm not blaming it on the doc - It's partially my fault for being distracted - but you see us every 6 months for a kid with a bad liver. Sometimes I get confused as to what the job of the doc is and what mine is....

I need a vacation. But that costs money and I have to save every penny so that Alex and I will have money to eat and pay for essentials while we are in Chicago.

I royally screwed up today. I cannot believe I forgot the meds!

Thursday, May 12, 2016

Saying Goodbye and Expressing Gratitude - Class of 2016

Today I took the last 2 final exams of my college education at Chandler-Gilbert Community College.

It's bittersweet.

I am excited to begin the new journey at ASU Polytechnic but also comfortable in the present.

But I know to reach your dreams, you have to go outside your comfort zone.

I want to thank and let me say HUGELY thank the wonderful professors of the teacher education program at CGCC. This is an amazing group of individuals who are devoted to training up the new generation of teachers.

They are amazing. And so giving. And so understanding. I want to be like them someday. They know. They live. They TEACH.

To Professor McManaway who I gave such a hard time to over Common Core Math - Wow. You showed me. You helped me understand. I always liked geometry, but you helped me love it. And UNDERSTAND it. I got so mad cause you wouldn't give me the answer! You wouldn't direct me. But in that not directing me - you were directing me. You're amazing. I hope I force my students to really think and critically think about math like you do. I am forever now a supporter of Common Core thanks to you!

To Professor Boepple - You inspired me to want to teach math. You helped me see what I really wanted - what would really challenge me - Teach 8th graders math. Wow. I thought for sure I am an English teacher - but you sent me into the direction of what would challenge me, what would continue to interest me. Math. You gave me a love of Math. I am so grateful.

To Dr Burris - You always ensure me I'm doing the right thing. You always tell me "you'll be just fine". You introduced me to the world of education. You showed me your love for the art of teaching and passed it on. I am forever grateful for your help - for your guidance. I hope that one day I have Doctor in front of my name like you do. You inspire me. You are wonderful.

To Professor Peterson - I cried in your class. We had a moment there didn't we? :) Thank you for showing me the ins and outs of Special Education. You have helped me continue to advocate for my daughter with a much better knowledge of the way special education works. You were not afraid to tell us your life's journey and you showed us not to be afraid of ours either. I am grateful for your spunk, your ability to command a classroom (seriously you really do), and your intense love of special education. You are what every special education teacher should look like. You change lives. You are amazing.

It's been a great ride. I'm sad to say goodbye because we have all grown together and it's like letting go of all the learning. I won't be at school every Tuesday and Thursday chugging my Red Bull.

We go confidently in the path of our dreams. 

Thank you professors of the teacher education program of CGCC for leading me on this path. Thank you for giving me the knowledge and the strength to know that despite everything on my plate - I can still accomplish my dream of being a teacher.

Today I shed some tears for what has passed and for the excitement of the future.

I always knew I loved school. Thank you professors for continuing to direct my sail in its course.

I owe my future to you.

Danielle Michelle Edges
Associate of Arts in Elementary Education
Graduating class of Chandler Gilbert Community College of 2016.

Monday, May 9, 2016

A Letter to My Future Self

A Letter to My Future Self
Dear Danielle,
                First of all, it’s going to be okay. You’re not as stupid as you look and your actually smarter than the average bear, so it’s going to be okay. The children will love you. They will think every word that falls from your lips is law and will use that knowledge to create a better world for all. But just in case it doesn’t turn out the way you want it to, here’s some advice…….

                Chillax. Children learn at different speeds. Not every child is going to jump up and solve a complex math word problem involving probability with no issue. Some of them are going to have to think really hard, and others are going to not want to think at all. It’s your job to bring them together, and I know you can bring them together.

                Appreciate their differences. Appreciate and be fascinated by the different ways they think. They won’t all think like you do. Listen to them. Figure out what they are saying. Psychoanalyze them if you have to, but figure it out. They will remember you as that teacher who ‘listened’.

                If some kid comes up with a mathematical explanation you don’t get, don’t sweat it. Make them explain it to you. Figure out how it works. The differences in our capacity for thinking is what makes us humans. It’s what makes the world go round. I know you appreciate the varying ideas of this world, this is just another one of those.

                Thankfully, since you’re going to do elementary education with a STEM endorsement, you will still have tons of math thrown in your face, so I don’t worry about your continued ability to critically think when it comes to mathematics. Compute on sista. You got this.

                You have no fear of teaching math. This I am proud of you for. Challenge yourself. It’s what makes you who you are. Pushing boundaries is what gets you going. Push the kids’ boundaries. Blow their minds. Create future innovators. Create doctors, create engineers. Create the person who can save your daughter’s life. I think God knew what He was doing when he gave you Alexandra and you always wanted to be a teacher. You are special. The children you will teach will be special. You will show them their individuality and how they can embrace it. You will help them learn to collaborate and create a better world. It’s what you were made for.

                Mostly, I want you to remember I believe in you. I know you have a lot on your plate and sometimes you just wanna crawl in a hole. But you have got this sista. You have an amazing level of tenacity and down-right hard headed, no bullshit, let’s do this-ness. So do it. Be you. Do you.

                Go forward and don’t look back. The future is bright. Keep putting one foot in front of the other. It’s the journey that matters, not the destination. Enjoy the ride, help others to learn to enjoy the ride.

                And above all – LOVE. Love wholeheartedly. Regardless of the outcome. Live fully. I know you’ve got it in you.

Yours Truly,

Your annoying inner voice that you sometimes love but pisses you off 

Thursday, May 5, 2016

Mother's Day

When you are graced with the chance to give birth or raise a child who is medically complex you get to become something you never planned to be (unless you were already one) - a doctor. A clinician.

A saver of lives.

Or in this case - saver of just one life - your child's.

Somewhere along the line - probably about the time Dr Lindblade told me what was wrong with Alexandra at her first fetal echo - I decided I would tear myself apart to save her.

I put my own survival along with hers - because I meant nothing without her.

I had to become medical researcher, doctor, nurse - rarely was I playing the true Mom role. All Mother's are charged with keeping their children alive - but more than anything they were to raise their child to survive in the world - I just focused on keeping her alive for now.

And maybe that's all you really have when you live this life - the now.

Maybe that's what all life is.

I went back to college because honestly we needed the extra grant income to survive - I couldn't work full time and be able to take care of Alexandra and daycare was out because of her condition - let alone the astronomical amount of money it costs.

I've never really been her Mother. I've been her doctor, her nurse, changing her GTube dressings, ensuring she eats enough, drinks enough, ensuring she gets to all her doctor appointments - that she gets the therapies she needs - advocating for her.

I never once advocated for myself. I never once attempted to do something Motherly - because no matter what I would do with her - I always had to have all this preparation. Prepare the meds, get the formula all situated, make sure you've got extra GTube pads and tape, make sure you've got bolus syringes of Gatorade cause you'll be busy at some fun event and she won't drink and eventually she will get so dehydrated she will start to turn bluer than she usually is and now it's become a problem.

I haven't been her Mother.

I became the person who would save her life because in that saving of her life I would save my own.

Here I am - a week away from graduating with my Associates degree and I am waking up to what's around me -

The dust on my blinds is an inch thick, the laundry pile is filling up the hallway, she peed the bed two days ago and she's been without sheets on her bed for the last two days, there's crayons and papers strewn all over her room, toothpaste all over the sinks and vanities, I haven't actually "grocery shopped" in about 3 weeks.

There was a scorpion in her backpack at school.

What I am trying to say is - the moment I heard of this scorpion incident I immediately blamed myself. My house is dirty. They are attracted to the dirt. (Not true but I'm trying to give you a sense of what goes on in my head)

I haven't heard from Chicago yet and I feel like it's our last option of something that can save her life and I keep calling but they don't call me back.

Boston never did that. But they aren't the only doctor in North America who does this innovative procedure for Abernethy Malformation - and we don't even know if he can do anything yet.

My house is a mess. I've either been at school or at work for the last 9 months.

It shows on my face, in my home and on my children.

I am for the first time going to say this in a total this is the real truth real talk - I am depressed.

I have depression. I have PTSD. And that scorpion in her backpack today became a trigger. And I crawled into that hole inside myself that cowers at the thought of her dying.

Because I've invested all myself in her. I saved nothing for me.

And all Mom's do this. And those of us who have medically complex or chronically ill children do it more than you can imagine. We pull ourselves apart. We rip our outsides and insides to shreds over this.

After all - they are our babies.

I don't know what's going to happen. I see the light of the break that this summer will give me and I'm falling apart. I'm falling apart from having to hold it together for the past 9 months.

I worry I will never achieve my dream of being a teacher.

I mean I'm sitting here at the table typing this sitting between grocery bags full of groceries that I have no strength to put away.

I can't go on leave from work, we have bills to pay. Again, I don't have time to take care of myself.

I am depressed. I set the alarm for 5am every night making plans to get up and shave my legs and put my makeup on and look all put together - to push the snooze button for 2 hours. Then to have to literally push myself up out of the bed.

I know we can survive this.

I can survive this.

We can do hard things.

But right now hard things include just standing up.

Happy Mother's Day.

Friday, April 29, 2016

An Open Letter to My Daughter's Teachers

I get it, I do.

You are stressed beyond the max. I can see it because I've spent the last year coming in and out of classrooms as I learn to become a teacher.

I know its not your fault.

The system is broken.

I am so sorry that our government has failed you.

I am sorry that you work endless hours for crappy pay, and it just plain ol' sucks.

But I see you. I see what you do everyday. The love and energy you put into these kids.

I am so angry that our government won't give the next generation of Americans what they need to keep this country great.

I know Alexandra is a handful - I live with her.

I know she's got a mouth and a half. Its partly just her and partly me.

I'm sorry I am not as politically correct as I should be, I have no filter, and say whatever comes to mind because I just don't have the time to think about what I am saying. - Alexandra has only learned from me.

But she is also a product of her condition. This means she is spoiled, thinks she is the center of the universe, and demands you do everything for her. - I'm sorry that I created that monster - I wanted to do whatever to keep her breathing.

When you spend your time just focusing on staying alive, you do stupid things. You can't really think about the future person your creating because well - all you want them to do is live to see tomorrow. Now you have to deal with my mess. I'm sorry.

I know you've got so many kids on your workload, and no one to help you. They won't let the aides be more involved - which I think is totally ludicrous - and its all because as Americans we are sue happy and offended by everything.

Why can't we just love?

Why does our state government make up stupid Propositions that 'say' they will help our public school system when they'll just earmark the money for something else?

I am so sorry Alexandra's teachers. The system has failed you, and failed her. You became a teacher because you wanted to make a difference - same reason why I want to become one. All you have received is nothing in return for the lifetime investment you are making in our countries future.

I hear you. I see you. I know you love Alexandra. And I know she says things she shouldn't. She is literally a force of nature. We will never tame her. I truly believe that to tame her means we will kill her.

But when I see pictures like the one at the bottom of this page - I see the real Alexandra. The sadness, the pain. The inability to understand why she was chosen to bear such a weight.

God, I would give ANYTHING to make her be normal. I would give anything to make it so she sat still in your classroom and just learned everything without jumping out of her seat and saying she's gonna 'shoot' someone.

But you see - those sarcastic whips, those little jabs she makes at you, and at other kids, that's her defense mechanism. She perceives everything as a potential threat.

I am so sorry teachers. You work so hard. You have given and given to Alexandra. You have given to me. I know you have jobs to do. And when a child says something inappropriate you have to worry about every other child, and what that child's parents would think.

I mean I think some parents need to grow some balls, but....whoops. Sorry.

We have created so many laws to make sure we are this or that - we can't even live. What if we just loved? If we just loved, wouldn't we be able to understand our fellow human more? Wouldn't we all have a greater understanding of the human condition?

So teachers - I am sorry. I am sorry that you have to bear this burden. Soon I will be one of you. Trapped by the rigors of the political system that has over reached and buried us with laws that they should have no business in - because we as humans can't accept one another. So we have to pass laws to force people to accept. My God if that isn't the most far from what Jesus' message was I don't know anything.....

I'm sorry teachers. I hope Alexandra can be better in 4th grade. I'm so sorry.

Tuesday, April 19, 2016

Compassion and Belonging

I've been thinking about compassion.

What does compassion look like?

Is compassion a perceptual thing?

What about love? Are love and compassion intertwined?

In my opinion absolutely.

When I exude love - when I make a conscious effort to just love people for just being people - I exude compassion.

In being a part of the amazing organization that is Stanford Medicine X I have had the honor of being introduced to people I would have never come in contact with in my every day life.

These people have expanded and grown my love for humanity. I see people's reasons for why they do what they do - and don't fault them for any of it.

People will make mistakes. People will do things that will make you angry. You won't always agree with every one.

But what you can be is compassionate. You can allow them to be who they are. They don't affect you - you allow them to affect you.

Every day you have the choice of how you will react to the days business.

And just so everyone knows I react badly all the time - I'm not saying I'm perfect.

But what I've decided to do is accept people for who they are and appreciate their experience as a human BEING.

I have chosen to think twice before reacting.

When we look at each other with love in our hearts - we can feel the connection that ties all of us together.

I am so grateful I have had the opportunity to be a part of a diverse and supportive community.

For the first time in my life - I feel like I belong.

Friday, April 1, 2016

Brutal and Beautiful - and some snippets about teaching

I flipping love this woman. Momastery. Glennon Melton.

"We live in a world who wants us to choose this or that, I'm good or I'm evil or I'm a saint or a sinner, but all that's BULLSHIT."


I have been beating myself up over Alexandra and her behavior at school. I mean like mentally berating myself over it. There's a mental picture of myself standing there, and then there's the other me that's beating myself with a baseball bat. And I take it. I take every hit.

You know what? She is never gonna sit still in class. (um does any child sit still in class?!) She is gonna open up her big mouth and say some stupid shit that really means nothing....why? Because she's her Mother. (and quite a bit of her Father too)

I have a big mouth. I say stupid stuff. I act a fool. I'm the Mom that 15 minutes after putting her children to bed, opens their bedroom doors and starts singing and dancing to "Pets" by Porno for Pyros.

Alexandra has only learned from the best. Her behavior is exactly what she sees. So who cares?

Look we have an extraordinary life. Sometimes the homework is not gonna get done. Sorry. (and the funny thing of this is I am going to be a teacher but I am like uh, homework, that's a suggestion) Sometimes I'm gonna say eff the homework and go get an ice cream. It's a free country.

I'm sitting here crying as I write this, and saying "I just wanna be okay" and then I laugh and say "No wait, I am okay".

I may be ruining my chances at a future career as a teacher by saying all this, but why don't we just flippin start helping kids desire to learn. Helping them love to learn. Helping them be like "OMG that is so flippin cool Mrs. Edges, I flipping love SCIENCE!"

Cause guess what? If you help them love to learn, they'll learn. They sit in the palm of your hand while you repeatedly teach them and blow their mind at the same time.

SO yeah, I'm gonna be the teacher at the end of the hall who has dance party before morning work, or does some insane algebraic thinking by using an XBOX to play Just Dance. Like statistically how many times can Billy get a perfect score while dancing to Bad Romance by Lady Gaga?

Do we think kids don't want to learn anymore because of some 5 inch amazing feat of technology that's in their pockets? Probably. Well why don't you show them how that 5 inch amazing feat of technology works? No kid wants to sit and do 3x-5 = 50 all day. Well some do....

So yeah, Alexandra is going to get up in class, wave papers in the teacher's face and act a fool. But she will say things that are downright amazing, and far beyond her age.

Aria, Aria likes to talk, A LOT. She has the vocabulary of a 60 year old, and uses phrases like " I am strategizing how to brush my teeth Mom". WHAT FLIPPIN 7 YEAR OLD SAYS SHIT LIKE "strategize".

Let me give myself a pat on the back for giving my children a large vocabulary. (it was probably all those old WWII news reels Kevin and I made them watch)

So moral of the story.

Kids want to learn. Alexandra wants to learn. But she is gonna be a pistol about it. Sometimes she is going to act like a lunatic and make up stuff, and other times she is so on the game you are like what?!?!?!

Alex is going to be harsh. She is going to be difficult. She lives in fight mode, she has been since day 1. Its what her brain knows. She is going to say things that will hurt your feelings. She doesn't really mean it.

I have been living in fight mode since May 1, 2006. Its brutal and beautiful, like Glennon says above.

I will never be perfect and I am going to eat Wendy's if I want to, and dance if I want to, and take a nap if I want to.

There will be finger prints on the floors of my house because the oldest likes to make her sister into a dog and literally puts a leash and collar on her and trots her around the house like she's walking her dog. No joke. (I bought them the leash and collar at the dollar store, pretend play is good)

Aria loves being Alexandra's dog. Or cat. Or rabbit....I have seen many different animals who have been domesticated in this house through pretend play.

We are gonna live. In all its messy glory. And I will be a teacher. I will be this crazy insane science and math teacher who makes kids love learning so much that they act like fools for it. I wanna be like Bill Nye was for me as a kid. (OMG LOVE THAT GUY)

So go live. Go out and have a ball. Do your thing. And if your kid says "son of a bitch" remember who he heard it from.....

Tuesday, March 8, 2016

Comparison is the thief of Joy

I've been thinking about who I am.

Who I really am.

It's not the person I play on TV. (Or in social media)

And maybe I actually play it really real but I don't see it myself.

I try and play the nice game, the political game.

But deep down inside  - I really hate that shit.

I'm not going to tear myself apart to please someone. The person I should be trying to please is...... MYSELF.

If you don't like me for what I can give then that's fine - I don't want to be around someone who expects me to be someone other than who I am.

I need to see things for what they are. I need to see what I really want to do with my life and begin to see the reality of things.

I will never be a healthcare advocate, as my job. I'm just not politically inclined to be. I have too many other things I have to do because I have to live in this world. No one is going to pay me money to do this no matter how flipping wonderful I am, and there is just not enough time for me to make money to live, and be so into healthcare advocacy. There is only 24 hours in a day and I like to binge watch Netflix.

I am never going to travel the globe talking about my experience as the Mother of a medically complex child and a Cluster Headache patient. No one really cares - no one who's going to pay me for my story. I need money. I need to do what puts food on the table. I need to do what keeps a roof over my children's heads.

I think last week with the intense headache that caused me to lose my coherent speaking ability - I grew up. I saw what really mattered. Me. Oh and those two freeloaders (seriously Iove them - but lets call a spade a spade) and my Husband.

Call me selfish - whatever. But I can't tear myself up to change the world. All I can do is go about my daily duties and activities with the joy in my spirit and hope that it resonates with people.

By no means am I giving up advocacy. Not in the least. What this means is I am learning to stop comparing myself to those that are traveling the country, speaking, and spreading the healthcare love. They have different means than I do. And I can't keep hating the people around me because they don't provide that ability to me.

I have to stop hating my Husband because he doesn't make enough to support us without me working. It's not fair to him.

He goes to work everyday. Does the absolute best he has and then gives more.

I have to stop comparing. Comparison is the thief of joy they say. It's the truth.

I've got to be happy with who I am and what I have. It's not a whole lot, but it's good.

We laugh, we cry and we live. It's a life.

Now the dentist just shot me up with novicane and I'm getting this tooth pulled put of my mouth - cause I can't afford a root canal or continue to take the pain so let's get rid of the tooth.

Peace out peeps. Next time I write I'll be less one tooth in my mouth.

Wednesday, March 2, 2016

Ugly Cry

I lost it today in the IEP meeting.

I mean I literally ugly cried. Ugly cried with eyeliner and mascara dripping down my face onto my chest.

Ugly cried.

My Mother came by this morning to watch the kids so Kevin and I could go to the IEP meeting.
Aria mentioned it to my Mom that Kevin and I were going to take them to the San Diego zoo for an overnight trip.

My Mom immediately lit into me. Yelling at me that I have no right to take the kids anywhere because she helped us out with the mortgage payment back in the fall.

I was upset. So upset. The continued blaming on Kevin for reasons that really weren't his fault. The entire time we needed help with the mortgage wasn't because Kevin wasn't at work, it was because Alexandra's SSI was not getting properly given to us, and so we had no money to pay for groceries or the electric bill. Or the car payment. It was a difficult time. That was right when the ceiling (literally) fell in on us. (no really, the air conditioning leaked and the hallway bathroom ceiling caved in)

Kevin even cried in the IEP. Because we are so tired. So tired of trying so hard and not getting anywhere.

It was horrible. I've never lost that much control before in my life.

I have decided I will not be pursuing my Bachelor's degree starting in the Fall. I may revisit this come Christmas this year, but for now, I need to just get a full time job and figure out where we are going.

Someday I will be a teacher. (insert the current ugly cry I am doing right now)

It's time to separate my reliance on my Mother. I haven't stopped crying since this morning.

But now I am going to fix myself up and get Alex and take her to PT. Cause thats what I do.

I suck it up and go.

Sunday, February 21, 2016

My True Heart

Yesterday I had the opportunity to participate in a wonderful conference put on here in the Phoenix area by the Nick and Kelly Heart Fund for children with congenital heart defects. It was a fantastic experience. A lot of wonderful information and a great time seeing so many of my fellow Heart Moms.

I decided to choose the panel "Redefining Palliative Care" mostly because Alexandra's cardiologist was in it and I truly believe there is so much palliative care can do in medically complex children. Its not 'end of life' care anymore, it's quality of life care.

The panel discussion members didn't really have a particular agenda, and had heard me and Alex's cardiologist talking and then the palliative care doc and her cardiologist says "Let's talk about Alexandra and use her as an example."

Of course I said yes. I have never been afraid to share our story. Sharing stories helps the next-generation of families who will be diagnosed with these conditions.

I went through a brief history of Alexandra while her cardiologist talked about her reasons for transplant denial and how we are trying to give her the best quality of life by her supplemental GTube feeds, PT and OT and continued constant blood thinner therapies.

I watched as the fellow people in the rooms jaws dropped. They couldn't believe there was this lady - this Mom - having this medically intensive conversation with several doctors and a psychologist.

And I felt proud. Because I fought hard to become this person. I researched and researched and became the person who essentially diagnosed Alexandra with Abernethy Malformation, where doctors had missed it on radiological reports.

I thought of MedX and how it has even more given me that fire to be an active and engaged participant not only in her care but in the reform of healthcare practices.

I felt alive.

When I advocate, when I participate in these discussions, I feel alive.

We talked about the good, the bad, and the ugly of Alex's situation and people where floored. We used her situation to understand why a palliative care doctor should be involved in medically complex children because it means a better life for that child - no matter what the quantity is.

I was going to give up advocacy. I didn't have the time to do it and work a job. We need the money and I couldn't devote myself to it full time. I thought it that it just wasn't in the cards for me. And maybe it's never going to be my job - and that's okay.

It is my passion. It's what makes my mind think critically and theorize different ways we can improve lives.

It's my true heart.

Thank you to MedX for helping me find that passion.

I have found what makes my heart burn.

And it's wonderful.

Sunday, February 7, 2016

The Truth

"It's all on you honey, its all on you".

"Mom, I can't keep doing this. I can't carry the weight of it all."

"You don't have another choice, you have to."

A few tears fell from my eyes.

Then I shrugged it off and decided I'd get the girls out of the house for a few hours.

We saw Kung Fu Panda 3, and I fell asleep about 20 minutes in.

"Mom, your snoring, wake up!"

"Whoops, sorry."

My Dad decided he was going to tear up the backyard and get rid of a lot of the bushes because Kevin won't keep up with the yard. I hated those damn bougainvilleas anyways. Yet, the pink flowers were pretty things to look at. They made the backyard glow a bit.

I'm learning to live without pretty things. I'm learning the ugliness of life.

I'm learning what happens when you allow yourself to be influenced by the negative things in this world.

And I'm not completely the one at fault. No he is responsible too.

I want a man, I want a man who goes to work, makes money, and comes home and doesn't say ouch with every move he makes. I want a man who gets the kids off to school on his day off and then takes an hour and trims the backyard bushes that need trimmed. Then he comes inside and takes a shower rather than sitting in nasty sweaty clothes for the rest of the day. I work on my days off. I do laundry, clean, do my homework, grocery shop, run errands, etc. I don't have a day off where I just sit in between playing with my tablet.

I know this is horrible of me, but I am just over it. I am just over his uncleanliness. Over wearing the same pajama pants every night for two fucking weeks straight until I finally go in and wash them when he isn't around. It fucking smells. And they are in my closet. I'm tired of him refusing to let me get him a set of drawers and his clothes in fucking dirty laundry baskets in my closet so that I have no room to hang up any clothes. I'm tired of the mountain of fucking DVDs in our closet.

I am tired of the ouch and the ugh's every time he moves. God forgive me. God forgive me. I am a horrible person. And I know I'm fat. I know I over eat. But I never smell, well sometimes I do and its become an issue because I see myself becoming like him. Giving up. I am watching myself give up.

I am watching myself give up.

I am a fucking 36 year old woman who's Mom and Dad have to come over and fucking trim our bushes! My Dad is 65 and is coming over to hang bulletin boards in the girls rooms. He can't do that. I'd have to hear how much his back hurts afterwards. Then he would sit with his tablet and fall asleep in the chair. I am fucking tired of living with this old man.

He's only 52, but he is less active than my 65 year old Dad. Less active than my Mother who is a diabetic, hypertensive, and has had triple bypass.

I am fucking done.

I want a man who kisses me, who doesn't hug me and wince.

I thought while writing this I'd be balling my eyes out. Truth is, I haven't shed one tear. Why? Because I am done. I am not in love anymore. Haven't been for a long time now. What I am is disgusted.

He disgusts me.

Hate me, hate me. I don't care. I don't care anymore. He chose to give up. He chose to alienate me. I put on my big girl panties and dealt. You can't even trim a fucking bush!

I am so sorry. I am sorry that this is the way it is.

I've asked you to come with me. To find joy in life again. But you won't. You can't see past anything. You cannot see past your own selfish needs. You won't work through the pain, and when you do, you do it with such disdain and vinegar that its miserable.

Our daughters are miserable. They don't want to be with you because you don't do anything with them. You don't actively participate in something with them. Watching TV with them is not being with them. They want you to play with them. They want you to love them. They don't want to hear you complain that your back hurts.

I am so sorry. But this is the truth.