Friday, March 9, 2018

Life - More Abundantly

I've been thinking. (dangerous I know)

I've been thinking about what life truly is. What life actually is...

In the past I used to imagine life was - ya know - "living the good life" sorta thing where most of my time was primarily spent on a beach with a drink with an umbrella in it or going on vacations to Disneyland with my family. Like normal usual life stuff. It's Spring Break - take the kiddies to Legoland....you get the picture.

But none of that is actually life. That's not really living.

Living is in that moment when the "you know what" hits the fan and you are scrambling around, attempting not to go full blown anxiety attack.

Living is in the 5am alarm clock. (ugh - I hate it too)

Living is in the stress. It's in the what seems like nonstop onslaught of trial after trial.

Living is in thinking when you lay your head down at night "Alright another day past - I will get up tomorrow and do it all over again and whatever else this world throws at me."

You see Jesus came to give us "life more abundantly". He didn't say it would be an easy life, or a rich life, or an awesome life - He just said life more abundantly.

In my mind - life more abundantly = s**t hitting the fan constantly....

The living is in the experiences. It's in the trials. It's in the tribulations. This is His "Life More Abundantly". He never said "Believe in me and you'll be rich and happy and loved and...." blah blah. Nope. He never said that. He said "Take up your cross and walk with Me."

When you follow Him - as I am learning from reading the book "Not a Fan" - you open yourself to pain. To hate, to trials. To tribulations.

I took up my cross. I said I'd walk with Him. And so He has given me Life Abundantly.

Oh I still angry, sad, depressed, etc when all those fabulous experiences of "life more abundantly" come crashing in.

Difference is - I know what they are for. I asked Him to give me Life - and He did. Oh boy did He.

Moral of the story - uhhh don't follow Jesus and expect to be showered with money, riches, fame - and make sure you understand what you say when you ask to be in His favor. More than likely He will heap more life on ya....

Following Jesus means you open the door for pain. It will hurt. You will cry. You will scream. It will sometimes feel like death over and over. But He is building you. He is giving you life more abundantly.

Now I go to bed for today I lived my wild life and fought battles, and tomorrow I get up to do it and more all over again.

All because I wanted Life - More Abundantly.

I am forever thankful for His Grace. For His ever guiding hand. For Him holding me up when the life He had given me felt like it was dying. Thankful for Him in every way conceivable.

Tuesday, January 23, 2018

I Must Push Forward

I am overwhelmed.
It's not an unusual state for me.
It's pretty much a natural state of being for me.

But this has overcome me unlike before.

I haven't come out totally and said it - well maybe I have - I don't know.

Alexandra is dying.

Now I know I've been saying that for awhile - and the truth is that we are all slowly dying.

But its different now. It could take years, at least that's what I hope.

It didn't really hit me (well it did but y'all this stuff is super difficult) - until I heard her cardiologist in Boston explain it like this.

"Alexandra is in the heart failure program. She is not a candidate for transplant. At this point we would do whatever possible to be as least invasive as possible. We wouldn't want to rush this. It is why I said no to the liver surgery - she is at a crucial point. If she was older, and she would never grow anymore - I would say no to the back surgery as well. But she is not older, and the benefit outweighs the risk. This is about management of symptoms - do you understand?"

I understand. This is where we are. We are in the "manage the symptoms" portion of this journey.
Which means one thing - there is nothing that is going to save her life now. 

There isn't another heart surgery to help her live a better quality of life. Her lungs are shot. The left lung does nothing. They want to cut it off from circulation, but that would require either opening her up, or occluding the left pulmonary artery, which would in turn cause organ death. Which is painful. She has already had a lung infarction - and she was in absolute misery.

This morning she sat on my lap and I just started crying "Alex I would die for you. If God said He would make you whole I would do it without a thought." "I know Momma. But I'm okay."

I don't know what to do next. I keep putting one foot in front of the other, which is all I guess one person can do in situations like this.

I have been trying to learn to tell my truth. Which is why I started this blog so long ago. I now exist in a mind with a loss for words.

I sit at my computer and attempt to do homework - but my mind is not able to conceptualize what is in front of me.

Perhaps in the coming months - perhaps in those dark nights on the 8th floor of Boston Children's Hospital that are looming in my future - I will get back my words.

For now, I am tired. I am overburdened.

I must push forward. 

"Hold me Momma, I need you." 

I must push forward. 

We are fighting a losing war. And maybe we were never meant to win it. 

Maybe all we were supposed to do is fight it. Not win. Just fight it. And lose. Lose everything. 
But gain love. Maybe it's about love. 

Maybe it is about the story. Maybe this is just a story I was always meant to tell. But to write the story I had to live it. Maybe that's why my words are gone. We are in the final chapters. The final chapters are being written. They are being lived. And for now I am to live them, instead of write about them. 

It's the story. I need to make it a good one. I have to make it a good one.

I must push forward. 




Monday, December 4, 2017

Dear Heterotaxy Syndrome

Dear Heterotaxy Syndrome
Dear Heterotaxy Syndrome,
                I can still remember when I didn’t know you. Back when I was blissfully ignorant of everything medical and now it’s become my obsession. It’s been a decade living with you. Hating you. Hating what you have done to my daughter. Watching you steal her ability to walk without heavy breathing, or hobbling along slowly because of the worsening scoliosis.

But today I want to thank you. I want to thank you even though you have cost me so much. I want to thank you even though you have caused my daughter to experience life with an endless string of tears falling from her eyes.

You may have cost me my daughters health, her future, but you gave me one profound thing, today.

You gave me the concept of today.

The idea that life should be lived in the present.

The idea that today is what should be lived, regardless of the dread of tomorrow.

What you have given me is true freedom.  Because of you I live in the stark but beautiful reality of today.

I bet you are thinking I’ve given up hope, and that you've won aren’t you Heterotaxy? But I have so much more hope than I ever have before thanks to you. You taught me the meaning of true vulnerability, to live wholeheartedly.

And above all else you taught me to allow her to just LIVE -  even if it doesn’t mean time, but experiences.

Heterotaxy, you gave us a life full of today’s.

A life full of pain and heartbreak.

Filled with open heart surgeries, and drugs, and therapies, tons of medical jargon to fill up every one of those todays with no minute to spare, and a grasp of normal AND abnormal human anatomy that I never dreamed I would know, but it’s a life. A glorious, and messy life. Messy but beautiful.
Even after traveling the country with her looking for someone to give her a combined heart/liver transplant and receiving three denials, a left lung that’s just doing nothing but recycling unoxygenated blood, oxygen saturations that dip into the mid 60’s during exercise, liver dysfunction, an enlarged heart and worsening scoliosis – we live, despite the things you set into motion.

We live because it’s what we have to do.

I’m going to bury my daughter. I say it all the time. People look at me like I’m crazy when I say it. I think it’s the least crazy thing I have ever said Heterotaxy, and that realization came from you.
Yes, someday I will stand above the grave you created for her Heterotaxy, and my arms will be empty from the loss. But that day is not today.

You won’t have her today Heterotaxy.


Because today, she is mine. She is ours.

Monday, October 16, 2017

A Beautiful Crime

I see the blood that has stained my hands
Guilty of the crime that has yet to happen
It is beyond my control, yet I burn as the guilty party

I take responsibility for the crime
Call it my guilty conscious
Something must be true when it lasts this long

The enemy of time sits upon my chest
Unable to breathe from the weight of the world
I know you don't get it
And I'm glad you don't have to

I see it happen in my minds eye
Like a sixth sense of doom
Something this beautiful cannot last forever

I rail against everything
A perpetual fight against all I can see
Anger is what is left of me




Tuesday, June 13, 2017

I Asked God for a Word - And This is What He Gave

Last night I had to give the girls some news they didn't want to hear.

We have to cancel our trip to Family Heart Camp.

We have had some unexpected expenses for the house and vehicles that have cut into our budget for fun.

Needless to say there were tears. From all 4 of us.

We talked about doing some other local budget friendly things and everyone felt a bit better.

After I tucked them into bed and went to bed myself I prayed because I knew I needed a word.

I needed a word from God. 

As He always does - He came through with that word.

See my girls were upset over the reaction their classmates will have over when school resumes and everyone talks about what they did over the summer.

They claimed that swim lessons, science and art classes weren't as "cool" as getting to say "I went to Disneyland" or "I went to the beach".

So what God said to me was "They are living for this world, for the reaction of other human beings instead of my reaction to their lives."

Boom. He always gets to the heart of the matter.

In worrying about what "others" think about our lives - we are choosing to please "them" instead of what God and Our Savior is pleased with.

I layed there and thought "Teachable moment!!!!"

It is absolutely amazing how He always comes through with a path when I feel lost and broken hearted.

When He spoke this word to me He was also teaching me.

See I worry constantly about what others think. With that word God was telling me not to worry about what others think but to only keep my eyes on Him.

You see our worth has to come from Him. It can't come from this world. He already created our worth.

When?

The day He created you.

How?

When He sent His only begotten Son to die for our sins.

It's time. It is time to fix our eyes on Him.

We must live for Eternity and not this world. For this world will pass away. But because of God's amazing grace and mercy we get to live forever.

My plan is to spend the next few weeks on our weekly family nights to discuss what it means to live for Eternity.

We must live for Eternity. We must keep Our Savior in our hearts and show His love and mercy to others. And while we do this we must try our hardest to not compare worldly possessions and lives to ours. It is of the enemy, and it steals all joy from our lives.

"Comparison is the thief of joy."

Thursday, May 11, 2017

I Saw God When I Tried Reiki

Last night I had the opportunity to get to spend a special night with some special Moms.

A night of pampering, friendship and conversation. 100% free, time donated by some amazing practioners of indulgence.

Now I've never been one for indulgence. I'm more the callous it out type, you know - the ugly shows the work type.

I get a little giddy about the intense dark circles under my eyes cause I feel like its my badge of honor. Its my inner need for martyrdom. "Look at me and my lack of sleep, I'm a total badass!!"

Guess what? Lack of sleep doesn't make you a badass. It just makes you an ass.

Refusing to take any time for self-care doesn't make you SuperWoman - it makes you SickWoman - which does nothing for the people around you who need you. Especially for the ones you are raising up in this world.

I decided around February of 2017 that this would be a year of self-care for me. I was going to start taking care of me. Who gives a crap if the beds weren't made or we ate cereal for dinner? None of that was going to kill any of us.

So that's what I've done. Got diagnosed with Type 2 Diabetes, found out I have some sort of chronic inflammation in my body (we are still investigating this one), and I'm changing the way I eat to hopefully remove all diabetes meds from my repertoire.

I have stopped spending each day in fear of Alexandra's death, I have stopped wishing Aria would stop being emotional and started to get her evaluated for high functioning Autism and other issues.

Those things may not seem like self-care items - but any special needs Mom knows they are. Peace of Mind = Everything in the special needs world.

But last night I did something different. I let a stranger touch me. And while it wasn't sexual - it was intimate. Intimate down right to my soul.

I tried Reiki.

First of all - I am hooked. Reiki = Life. Reiki = God.

When the practioner started I attempted to not give over. Losing control is a dangerous thing for me. I've always had a fear of not being able to come back from that. She knew. It was like she was in my brain and she knew. She put her hands over my ears. Suddenly I had no choice but to surrender.

I went somewhere. It was dark but light all at the same time. It was everything and nothing. It was every feeling I have felt for a decade since Alexandra's birth, to every memory of my childhood, to feelings I have yet to feel.

God was there. He didn't say anything. He was invisible but his presence was felt. This was the stuff of Him. This was the ways He put us together. The ways He put the universe together. This was Life.

I would come and go to this place. I'd sort of 'come back' to consciousness and then allow myself to fall away again. I remember at one point feeling my throat relax and thought "Shit Danielle don't start snoring!".

God was waiting for me there. He wanted to reassure me.

So what happened when I tried Reiki?

I saw, felt, and experienced God. It was glorious. It was healing. His healing.

It was the nature of existence and the lack of existence. It was light and dark.

It was God reassuring me that the self-care I am doing was not going to result in the death of my oldest child, or the end of my marriage, or myself or my Husband losing our jobs.

It was Him without words saying "I have plans yet for you. You must do this because you have work yet before you. You are not stopping, you have not failed, you continue to run, for now the run slows, but soon enough it will quicken again and you will find your next purpose."

Y'all life is hard. Like the title of this blog suggests. God is there. You need only be still. He already told us that. We just refuse to listen. I think that's a side effect of having a body.

So listen. Let Him guide you. He already knows how it ends. And if you listen hard enough you find out it ends amazingly.

With love,

Dani

Thursday, April 6, 2017

Everyone Should Live a Life Based on a Palliative Care Model

I had the pleasure and honor of attending the California Coalition for Compassionate Care conference on Palliative Care on March 13 through the 15, 2017. It was an amazing conference.


What is Palliative Care? Well it's called living life. Living life the way you want with what is important to you. It's mostly used in situations that involve terminal illness, or chronic illness, but honestly......

WE SHOULD ALL BE LIVING A PALLIATIVE CARE EXISTENCE.

Palliative Care = Quality of Life Care

Palliative Care asks questions like -

"What brings you the joys in life?"
"What is important to you to feel fulfilled in life?"

Palliative Care is about life. Palliative Care knows that regardless of illness, life continues to be a multi-dimensional experience. Palliative Care is transdisciplinary. It encompasses, well, it encompasses life.

We don't like to talk about palliative care in pediatrics cause well, for some reason we all think palliative care means someone is dying - well guess what - WE ARE ALL DYING. Every single day, every single minute - some of us are just doing it faster than others.

Thanks to this conference my focus in advocacy for this year is going to be an expansion of Palliative Care practices happening in pediatric medically complex patients AND their families.

I can't help but think if I had the opportunity to get the level of care provided by a palliative care model many things in the care of Alexandra would have been much more streamlined and so much more enjoyable. Heterotaxy wouldn't have defined her, it would just be a condition she has.

Will you join me on this journey? This journey will be about life. Not about sickness or death. It will be about living life the best way we all can, and finding joy in each and every day despite the failings of health.

Palliative care is hollistic and spiritual.

For a long time I wondered where my place was in patient advocacy - and now I have found it.

I belong in the arena advocating for hollistic, complete care for medically complex children. Because palliative care will give these children the best quality of life available. If we aren't going to have the QUANTITY OF LIFE in a patient, let's have the QUALITY OF LIFE in a patient.

Will you join me?