Tuesday, August 19, 2014

What I want to be when I grow up

I want to change the world. Well not the world per se, but the world of Heterotaxy. I want to change the way this condition is looked at, the way it is treated, and the way doctors and facilities discuss treatments with the families of children effected by Heterotaxy.

Heterotaxy is a spectrum disorder (even though it is not classified as that). My daughter has heart defects, and abdominal defects. Some children get one or the other. Even in these, no two children are alike. They are similar, but their anatomy is strictly their own. Heterotaxy must be treated differently.

I get a lot of backlash cause, well, I speak my mind. I tell it like it is. But I research and research topics. I look at how vascular anomalies can affect the way the heart functions and what certain palliation's can increase the risk for these vascular anomalies. I am no doctor, and have no college degree, but I guarantee you, I know what I am saying. I look at Porto systemic shunts and different variations of them and how they can be ligated to change the way a child with Abernethy Malformation lives.

I want to change the world.

Alexandra asked me the other day "Mommy what do you wanna be when you grow up?". Well back in my younger years I always wanted to be a teacher. To me knowledge is power. Knowledge and reason are what helps a person explain life around them. When I think about what I want to be now that I have had the opportunity to be exposed to the wonders of the medical world, and the miracle of my daughter, a fire inside my heart grows. I will never be a doctor, and I dont really want to be one. I dont want to be a nurse. I want to stand side by side with doctors, nurses, and administrators who are working to change the world of pediatric medical care. I want to be a policy maker. I want to be someone who sits at a table and looks at the data presented and discusses how this changes the way we need to take care of these patients. I want to help continue to keep these children alive and help their quality of life.

So I sit and I research, I post to Twitter and get all kinds of organizations to follow me, in hopes that someone will notice me. In hopes that someone will say "hey join us".

You see my daughter has endured 5 open heart surgeries and an abdominal surgery. She is a single ventricle with a common atrium, malposed great arteries, right aortic arch, levocardia, interrupted IVC, pulmonary stenosis, and nearly discontinuous pulmonary arteries. Then she has this thing called Abernethy Malformation. Congenital absence of the portal vein. She has severe pulmonary AVMs because of her anatomy. She has been denied a liver transplant twice. She is hyperammonemic, and has elevated liver enzymes. I have been told that she would need to have a heart/lung transplant, then a liver if her new lungs formed AVMs. None of this would have happened if the proper imaging would have been done on her to check her liver for Abernethy.

I want to change the way Heterotaxy is treated. I dont blame anyone for what has happened to Alexandra. Its just lack of knowledge. But that knowledge is out there, and I have it. I want to share it with centers and facilities, and advocate for these children. I want to help create policies and protocols as to how these children are treated.

I keep on talking about wanting to move on with life. Its because even as I continue on to finish my teaching degree, its not what I really want. What I really want is to advocate, professionally. I know I can do this. The fire inside my heart tells me so.

Maybe someday, somehow.

Thursday, July 24, 2014

What Hurts the Most

What hurts the most? The losing the ability to move on. I mean, you know, you spend 7 years making something like what you live and breathe everyday, and even though you gave birth to it, you want it to take flight on its own and survive. To be able to focus on stuff that isnt so life or death. Its so exhausting.

Sometimes I dont even know what to say or even if I want to say it. My words are already jumbled in this blog post.

I wanted to see her do things, like become a Rodeo Queen, but instead we are going to face our hardest challenge yet, and we dont even know if they will do it yet. If they dont, she will die.

Are you kidding me? I dont want to move to Boston for a year or more. That sounds absolutely horrible. I like my house, my bed, my life in Arizona. Even she cant talk about the move because she doesnt want to leave her home. How horrible is that? I mean, its horrible. And whats worse is if they dont do it, she will die, and thats even more unimaginable.

I know so many people want to talk about Faith. Faith in whatever. But there are times when I think "what kind of God would allow this to happen?" Problem is, He has nothing to do with it. Nothing at all. He is not in control of any of this. This is the life he created for us. He gave us life and said "Go". He isnt in charge of things. He gave us the ability to control it by giving us Free Will. Our life is what we make it and how we wish to control it.

I wanted to move on. I wanted to finish my degree and become the instructional aide I always wanted to be. I wanted for her to keep riding her horses, and competing, and doing her thing. I wanted to watch Aria figure out what makes her tick in this world. I still will, in small doses. Instead what I will be doing is living outside of the real world in this world of constant medical information, constant worry, constant pressure to ensure I am doing everything right. Exhausted.

I want to move on. I want us all to. Especially Alexandra. I want this not to be the main focus in her life. It sucks. I want Aria not to have to worry about the next time Mommy will be leaving her to go to Boston. Its not fair at all.

Instead of moving on, hopefully, I will be moving myself and my girls 2500 miles away from their Daddy so that we can all live in limbo while we hope and pray Alexandra's life is saved.

And whats the worst is, we dont even know if they will actually be able to do it!

Sunday, July 6, 2014

Soap Opera Life

What do you say to a 7 year old that says "I don't want to die"?

What do you say to a child who is growing into understanding what she has been through and what she will go through?

I have no idea. No clue whatsoever. All I could do was hold her to my heart and pray to the Lord that he would keep my baby with me.

I was at work last night, and received a text from my Husband "911, she is inconsolable, says she doesn't want to die". Thankfully the store had closed to I picked up the phone and called home.

"She is afraid to die, she says she can't do anything for herself, and her heart hurts, and she doesn't want to die". "Mommy, I love you." "Mommy will be home really soon."

It took everything I had not to completely break down while closing up the store. She has had a lot of questions lately. Difficult questions. Questions that neither my Husband or I are prepared to answer. All I can say is "You are going to be with me FOREVER". And while I say this my silent prayer to God is "Please please do not take her from me".

I know it all seems so dramatic. Kinda like a soap opera. But its our daily life. We fight for life every single day.

I had nightmares all night long. Myself yelling at nurses and doctors as my child struggled to live. The vision of Alexandra on the vent, myself sitting on the chair next to her, willing her to keep up the fight.

What's my greatest fear? That one day she won't want to fight anymore. That as she grows up and I have to discipline her and not give into her every whim she will think she has no more reason to live.

I don't know what the future holds. I do know who holds it, and I worry that He doesn't have the same plan for the future I do. But that's what faith is all about right? Knowing that no matter what, He has got you.

So for today, we live on. We live on until the day we don't anymore. She woke up this morning wanting to play ponies and laugh with her sister.

Her mind isn't on the fact that we leave for Boston in 2 days. Its on Rainbow Dash, and Applejack. She is excited to join Grandma and Grandpa for swimming this afternoon. This is our life in the Edges household. And while it can be a lot like a soap opera, its a damn good one.

Wednesday, June 4, 2014

Because I Just Don't Have The Ability To Anymore

I just don't have it anymore. I cannot play nice all the time anymore. I don't have the time for it.

I have lost every bit of patience I have. I am exhausted and the work is never done.

So let's talk about losing your ability to control what I like to call your "filter".

You know the  "filter" that helps you not be a complete and total bitch to everyone you see and meet?
Yep, that one.

Yesterday I called an insurance agent out by name like I was speaking to a child.
"No Beatrice, no, no you hear me, I am going to get my money, and it will be substantial, and if its not, I will obtain a lawyer".
When I have had to assert myself before in the past, afterwards I always had a tear fest, just from the emotional overload of it. It used to take a lot to get myself to that point, now it takes barely anything.
If anyone confronts me with any sort of conflict, or does not do something the way I see fit, I lose it. I become a monster. I become insatiable.

I have become jaded, narcissistic and well, a bitch. Because I had to. You spend so much time keeping a child alive who should be dead and tell me how you aren't. It hardens you. Right to the very core.

A fellow Heterotaxy Mom posted a blog today about just wanting to be "Mommy". She couldn't have put it better. I want to stop being - feeding therapist, doctor, nurse, night nurse, medical accountant, etc, just like this Heterotaxy Mom does. But we don't get to. Nope, it just doesn't happen for us.

I just do not have it anymore. I do not have the time or the energy. What I have left is for my children. For my daughter who spends every minute fighting for every breath. For my youngest who still doesn't understand why Mommy has to leave her behind and travel across the country to take care of her Sissy.

I feel ashamed and so angry at myself because I cannot be there for others. Because I find myself putting my own problems so much higher than others, and I think them trivial.

The tearful ending to my rants doesn't happen anymore. The anger comes and it just gets out and then gets stuffed back in. There is so softness to me anymore, I am rough. Rough like sandpaper.