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?

Friday, February 24, 2017

Broken

I am not who I used to be.

I wonder if you notice. I don't think you do.

A part of me is forever gone, it will not come back. I have spent the better part of a decade attempting to find it again - it no longer exists.

I don't really know how we got here. The memories only exist like flashes of lightning - coming on quickly and leaving with the sound of thunder.

See I think I was trying to find out who I was when I met you. And it was fate.

And without you I couldn't be who I now am. Because this is who I was always meant to be.

Now we are two people who are on different roads. Every now and then the roads come to an intersection, and we wave and say hello.

Pieces of me have to stay locked away. I know I am not an innocent party in all of this. I am just as much to blame as anyone.

I wear an armor of humor, an armor of laughter.

I have drifted far away. I can't help it. The flesh that I bore is broken, and so I am broken.

No matter of time or love or anything will put that brokeness back together. It is something I just have to live with.

But your presence is like a strain on any hope of joy I have - for you are part of the broken - because you are broken too.

This house is broken. I can now only manage a few of the pieces of it that sometimes cut me as I try.

We have lived in a semi-conscious state of mutual survival for a decade now. I am tired. You are tired.

The damage is done.

Friday, February 10, 2017

Our Story of CHD and Heterotaxy

I remember the day very clearly. The day I heard "abnormal looking heart".

I was driving to work. My flip phone rang. (Flip Phones!!)

I clearly remember sitting at the light on Alma School Rd, where I would always turn left to drive into Fiesta Mall on my way to work every morning. It was just another day with the shiny diamonds. I was pregnant and happy. We had just found out it was a girl.

"Mrs. Edges - We need to schedule you for a level 2 ultrasound."

"Uh....what's a level 2 ultrasound?"

"Well the baby has an abnormal looking heart, so we need to get better quality pictures."

"What in the hell does that mean?"

I really have never stopped saying "What in the hell?" and we are into this a decade now.

They scheduled me for the level 2 about 3 weeks later. I had no clue what a "high risk OB" was then.

Kevin had to work, so my Dad graciously came with me for the level 2. I layed on that table for 3 hours. 3 hours of doctor after doctor coming into the room with a different tech. Obviously something was majorly wrong. All I got from that appointment was "The heart is severely malformed. We will get you into a pediatric cardiologist."

I had no clue what in the hell heart defects were. I had a nephew with a heart murmur, but it was no big deal.

Once my Dad and I left the doctors office, we called everyone. He called my Mom, and I called Kevin. We went back to Kevin and I's apartment and I cried. My Dad cried. My Mom showed up and soon after Kevin did.

I asked Kevin "Why are you home?"

His response "Something is wrong with my girl. Something is wrong with our baby."

We had already decided on her name - Alexandra Mae Edges. My Mom wrote her full name on a half a piece of paper and below wrote "We all love you." and put it on our refrigerator. I remember praying over that piece of paper every day.

On May 1, 2007 we finally saw the pediatric cardiologist. He gave us her full diagnosis of Heterotaxy, Single Ventricle with Common Atrium, Transposition of the Great Arteries, Pulmonary Stenosis, Interrupted IVC, and nearly discontinuous pulmonary arteries. She would need a series of 3 heart surgeries. The mortality rate for her condition was 80% in the first year of life.

A week later we met with the cardiothoracic surgeon. His words exactly "This is going to be hard. She will have a very difficult time. This will change your life completely. She may die. But if you want to do this, I promise you I will do everything in my power to help save her life."

"Dr. Pearl if you told me she would die the moment she came out of me, I would still give birth to her She is my daughter. I will do whatever I have to."

Fast forward a decade, and she has been through 5 heart surgeries rather than 3. She needs a combined heart/liver transplant, but has been denied 3 times for it. We travel out of state now for her care. She has developed severe scoliosis and lives most days in pain. Yet she smiles. She thrives. She is in 4th grade. She hobbles when she walks but she does it with such gusto. She has a tube in her stomach to help her get enough calories to have a good quality of life.

This morning she asked me if I wanted her.

"Alexandra I would do this billions of times over and over again to have you. I didn't lose when I became a Mother to you, I gained the most important lesson I will ever learn. You gave me the perspective I always needed to have. You brought me to where I was meant to be. An educator, an advocate - but more than anything you made me a Mommy."

Alexandra Mae Edges I will go to the ends of the Earth for you. You never have to doubt my love for you. As long as there is breath in my lungs I will fight for you and for children and adults like you everywhere.