Thursday, January 28, 2016

You are whole - all by yourself.

A while ago a great friend and fellow advocate for medically complex children described me as "one of the wholehearted".

It was a nice compliment. But I didn't really 'GET' it.

Then I realized - maybe the reason why I am always feeling so broken hearted  is because I am in fact wholehearted.

Yeah - my head is spinning too.

When you live wholeheartedly - you live vulnerable. And when you live vulnerable - you open yourself to the emotions and trials of life. You feel them with such intensity that many people get down right scared.

I'm here to tell you - it's okay. It's okay to feel left out. To feel excluded.

Excluded because you choose to see beyond the persona of fakeness.

Excluded because you see life for what it really is - a gigantic cluster fuck of insanity that is so damn beautiful and so damn ugly it's nauseating and you wanna scream for joy and cry all at the same time - and when you feel that intensity - it scares people.

They don't know how to react. Just like people don't know how to react when I say "I will bury my daughter."

Sometimes I think they expect me to like bust out in tears and just fall on the ground with grief - and I do - behind closed doors - but I'm smiling when I say it. Why? Because today is not that day.

Today I watched her walk a quarter mile held up by her little sister. And it was glorious and fantastic. And heart breaking. Why? Because it was only a quarter mile. Because I had just pushed her in the stroller for over a mile and a half. But it was fantastic.

So my intensity is because of my wholeheartedness. My feelings of sadness, of depression - it's because I'm living vulnerable.

So when you see me smile - or when you see me cry - remember what this life is. Its glorious, beautiful and horrible. Horribly beautiful.

(Please please read "Daring Greatly" by Brene Brown - she talks all about living wholeheartedly and vulnerably)

Sunday, January 17, 2016

Remember why.

Is it selfish to want something for myself?
An escape? Something or someone who is only for me?

Something not touched by the suffering and pain that exists inside this house?

All I can see is the future with more pain and suffering.

I remember when I used to find solace in my Husband.

He's been touched by this. He's her Father.

He can't be the one I find solace in. He can't be my confidant. I want him to be, but he feels the same as I do.

We both bring the same emotions and mind set to the table. Together it just doesn't work.

We exist in a business relationship. When we are alone together we discuss the dealings of our life. 

"This is the plan for when she's gotta have the spinal surgery." "So I got the pulmo doc appointment set up for the lung, the spinal MRI is next Friday."

"Ok so I'll come and be there for the surgery and the few days after and then come back home and work, you'll bring your Mom and Aria, and stay the course while she's recovering, sounds like a good plan".

And we thought it was a good dinner together.

Because we discussed business and got it all organized.

There's nothing but business left.

Its all business because we became people invested in the business of Alexandra's survival.

We left everything else behind.

He went to work and I spent every minute devoted to her survival. Because if she didn't survive I'd be lost.

What I've realized is if we do lose her we both will have nothing left.

And as the years go by and the diagnoses pile up - it becomes more apparent that we will bury our daughter.

There will be nothing left.

I try and keep myself from the truth but this is really the truth.

He's wrapped up in his psychological pain that has developed into a physical pain and I'm wrapped up in working and going to school and managing her care.

I take pills to get through the day. He took pills but now he says nothing works. He has a perpetual migraine and I fall asleep before 10pm.

It's a cautionary tale. Parents of medically complex children - listen to me when I say - do not neglect your marriage. Remember each other.

Remember that there was the two of you before there was this endless string of surgeries and doctors appointments and meds and therapies and financial issues.

Remember why you came together enough to have that child.

Remember why. Remember the love that existed before.

Remember.

Thursday, January 14, 2016

Jump.

Steve Harvey delivered a wonderful message after a taping of Family Feud.....(watch it below)

I've learned that jumping is the key to living a more abundant life. My gosh you guys I'm gonna graduate in May with my AA in Elementary Education! I know its just an AA but do you know what I do? I work, I manage the care and medical complexity of a child which is a more than 40 hour a week job! I advocate. I took a huge leap last year and went to MedX and I got to meet people that I am forever going to have as a part of my life! I decided that I would keep darkening those circles under my eyes and work towards that abundant life that God promises us all. And yes ~ sometimes it is so overwhelming and sometimes I want to crawl into a hole. And yeah, I have no money and the collectors call the house ( and my cell phone and my work) constantly. But I'm gonna keep going. I'm going to get my AA in May and then spend the next two years after going to school every Tuesday and Thursday night til I have my BA and then I'm gonna teach!! So what I'll be 40. So what!

I have jumped, I will continue to jump.
I will teach my children to jump.
I will teach my students to jump.
To reach for their gifts.

I will tell them that they will fall, they will have hard times. There will be heartbreak, pain, sadness. But its gonna be living!
It will be the exploration of the diversity of the spectrum of life and emotion of the human condition. Of the experience of being alive.

Don't get me wrong, I live with a possibility that sometimes stifles my entire self.
I will bury her. I will outlive her. Its not natural.
But she is going to live. And live abundantly.
For however long she is with us.

See there is beauty in this world of pain. In this world of heart defects, and liver failure, and complex medical conditions.
There is courage and strength beyond the norm.

There is life here.
In every smile, in every tear.
Life.

Live it. Live it without abandon.
Live it with all you have.

Let the slings and arrows of life be apparent on your face.

Live. Life. Abundantly.

Friday, January 8, 2016

Post Boston Ranting

I'm mad cause I've got this kid here who is in pain because they did something funky with her arms in the Cath Lab and now she's leaning even worse to the left and giving herself a hunchback to boot.

Kevin and I are trying to come up with some contraption to make her pull her shoulder back and Aria starts talking. I turn around and scold Aria. The thought that then goes through my mind - "oh the years of therapy that child is going to need".

I can't tell you how many times in the heat of the moment I've scolded Aria because she began talking to me while right in the midst of doing something for Alexandra. I know why she does it - its for attention. Because Alexandra always gets all the attention.

Because I've been away for over 5 days and now she has a UTI because I wasn't here to take care of her properly. This happens every time I go away.

So I come up with these plans like - 'let's move to Boston and then she won't be so bad cause I'll be around". It's not gonna make one bit of a difference.

I'll lose my greatest support system - my parents. I cannot lose my parents. Without them and my sister nearby - I'd be lost.

I feel inadequate because I'm almost fucking forty and I need my parents now more than ever.

This is my usual come home from Boston and I lose it. I've put my brave face on reliving the details all week of the last 8 years, hearing new news of left lungs being useless, and scoilosis curves of 51 degrees and spinal surgery imminent.

I'm just fucking done.

So what do I do? Go right back to work. No time to process nothing. Just jump from the frying pan into the fryer.

Sometimes I wonder how much longer I can keep this up.

I hold myself together with pills, Coca-Cola, and food.

I sound like some Hollywood debutant. But without the millions of dollars.

So in 6 months we have to go back. And its gonna be a painful painful surgery. We have to pray her heart can handle it. Cause if we don't she will be horribly disfigured.

I can't believe I didn't notice this earlier. I can't believe the doctors didn't notice it earlier.

I still believe ours is a cautionary tale. A tale of how a child can have amazing surgical outcomes but still succumb to inadequate medical care.

Still succumb to an approach to medicine that is not holistic, not multi-disciplinary.

If you are only treating the most apparent symptoms but not guiding the holistic care of the child you have done a great disservice. All this technology we have created for nothing because the child will still be lost. And for the things we could have easily watched for.

So who's fault is it?

All I know is - its mine. Even without the medical degree, or hell even a college degree - I failed to know enough to watch her. I failed to see it all.

What a cross to bear?

I allowed one child to be destroyed from a medical condition and the other I destroyed myself - because there just ain't enough time in the day to work (because I have to for us to survive), go to school (because I had to figure out someway to get us more money - so I went back to school - and my Husband is older and employers don't want people over age 50 anymore), and to manage the intense care Alexandra requires.

I did what I had to do because there was no other option but to travel for her care.

I'm always doing what has to be done. And I'm tired.

I turn off every ounce of love or compassion I have in me and become boot camp Mommy so that I can pull her out of the pain and anxiety of hospital life while I fall deeper into the pit.

I know so many of you feel this same way.

I am so sorry we are enduring this.

I hate this world.