The Epiphany

When my daughter was first diagnosed as terminally ill and I began the process of falling apart, I was so blindsided by the impact of the pain that for months I didn't know where the pain ended and I began.
There was no line of demarcation at that time. The pain and I were one.
I have searched for days now to find the closest way of describing what it feels like to have a baby, be told she's fine, perfect, beautiful, to feel the joy of that. Then to have it crash down around you when you notice she's sick, when the doctor says she's not just sick but dying.

Maybe there's a reason the words fail me. No one wants to feel that. It's not something that should be relayed, one to another. If another knows what I am describing, it's because s/he's been chosen to walk a similar path for some godforsaken reason.

I grieved imperfectly, of course. I hardly ever do things 'by the book'. I hardly ever do things in ways that others approve of.. People who had been friends with me when Amaris was born didn't stay my friends, repelled by my outbursts, but wouldn't accept my apology, wouldn't understand my pain, where I was emotionally, couldn't stick by me as I cursed the world for what was happening to my child. Mostly it is only those who were my friends from long before life began to unravel me that are still by my side as friends today.

Over the months, this insanely grieving woman I had become made enemies of therapists who I did not agree with handling my child. Doctor's who would not listen. And anyone else who I thought did not respect my child's short life. I know that I was not as tactful as I would normally be.

It isn't that it did not matter, it is that I could not help it.

When people ask, "How do you do it? How do you survive this?" Well, this is how. My tact and decorum take a hit, for one. I treated most of the people around me in ways that appall me now, as I think back. I did what I thought was right for Amaris, but the woman barking orders, cursing people, fighting the systems, and railing against it all was foreign to me. I did not know her. I did not like her. I felt huge amounts of pity for her and I did not want that to be me. I felt picked away inside until I was moving through the world as raw meat.

I finally sat down one day and wrote a letter to the hospital where the drama began shortly after Amaris's birth. Enough time had past so that I could think clearly enough to realize that it was this hospital and their accusation of child neglect and threat of calling child protective services, followed by 14 months of incorrect and/or NO diagnosis that had begun the unraveling of my soul. It is not uncommon for other parent's of children with the same syndrome as Amaris to be accused of child neglect, I found later, because the syndrome mimics early signs of this. It's the 20 doctor's and as many wrong diagnoses that had kept me in a state of constant instability that had me angry as well.

So I wrote this hospital and as my heart poured out I was amazed as I remembered every single doctor that she had seen over 2 years before. I wrote the head of the hospital and I told her that I wanted each doctor that had seen Amaris to be told of what her correct diagnosis actually is. I told her how each of her symptoms can be plugged into Google and the syndrome name pops up. And about how it took a doctor in Houston five minutes to diagnose it, but that they accused me of neglect and wasted 14 months and countless tubes of blood and still did not diagnose her. I wanted her to know and I want every single doctor who 'treated' Amaris to know if another child like my daughter comes through there that this is what it 'looks' like, so that they will recognize the signs and not put another family through this. A couple of months later, I got a very repentant and apologetic letter in return. They thanked me for helping them to learn and promised to use Amaris's case to teach doctor's at their hospital.

That letter and it's apology was a turning point and validation for me.

Following that catalyst, I have found myself looking at things in an authentically happy and content way. I have always said that when I can find the good in something, I'm healed from it. No matter how horrific it is.

There is no good to be found in AC being terminally ill, that goes without saying.

But, believe it or not, there are some very joyful things about parenting a child who is terminally ill. There's a lot of the 'crap' stuff of parenting that I can let go of.

Things such as making sure she has a well rounded life experience, education, and social life so that she will succeed as an adult. That is completely unnecessary.

Instead, I get to focus on making sure she's seen the beach at night, she's seen a full moon, she's touched a newborn baby's skin, tried every variety of cake, seen fireworks, smelled flowers and dirt and dogs.

I make sure she hugs the people she loves, that she is able to be as angry, happy, goofy, or different as she just IS.

I let her watch Dumbo, her favorite movie, at 3 AM and eat Oreo's with me in bed if that's what the night calls for.
I don't have to worry that I'm creating bad habits that I'll regret. I only have to relish each moment no matter how it unfolds.

My planning for AC's future took about two days and three calls.
Hospice, funeral home, plot.
That's all taken care of.

Now I'm on to just the good stuff.

The things I get to make sure of is that she see's magical things and feels magical things and tastes great foods so that all of her senses are filled with the wonders of the world every day.

It's such a carefree way of parenting as all the 'character building and shaping' that we do with 'normal' kids drops away.

And all that's left is just joyful and blissful mothering. I am blessed to get to experience that.