Thursday, November 26, 2015


"I don't know how to reconcile my anger."

Those are the words that came to my mind while in the shower this morning.

Isn't it funny how the best ideas come while showering?

All morning I had this pit inside me.

Alexandra was refusing to drink, refusing to eat - I had to pack up everything for her to spend the night at my folks - because I have to work til past 1am.

I shook with anger. I was having a mini panic attack.

So when I finally began to get myself ready - I started reflecting on what drives me to this point - it happens often. Why do I get so angry?

I don't know how to reconcile my anger.

Even as I sit here I catch a side view of her belly - full of ascites from her liver - and I fume. If I was in one of those cartoons I'm sure you'd see smoke coming from my ears. Anger. It consumes. It destroys.

Yet I don't know how to control mine. I don't know how to resolve it. It just perpetually eats at me.

I hate everything.

It's mentally exhausting - the trying to hold it together.

How do you resolve anger? Pray? I've been doing that for years with no change.

I'm angry that I'll lose her. I'm angry she isn't doing as well as other kids like her. I'm down right pissed other kids with this condition are suffering and on the brink of the unthinkable. I'm so angry that some of these children have suffered the unthinkable and now their parents arms are empty.

I'm not Thankful. How can I be anything but angry over this life I live?

We're facing financial ruin - again. She has got to get to Boston again in January - I have no clue how I'm going to pay for it.
I work, I go to school - but I have nothing to show for any of it. I keep putting one foot in front of the other looking forward to the future but all I see is the never ending financial battle for survival.

We can't even pay the mortgage in full every month. Who knows how much longer we can keep this up?

So yeah I'm not very thankful. Call me names - call me negative, but I'm not thankful today.

Anger still rules my heart - even as hard as I try to see the positives in each day.

Anger. It's what's left of me.

Friday, November 13, 2015

The Answer Remains No

I watch her do the walk/run thing she does with the most gigantic smile on her face. Her left leg and foot turn in from the curve in her spine. She hobbles along oblivious to what the rest of us see. "Dream Team, Fun Run" - the words that come out of her mouth. She dances while she hobbles along, blissfully in each step she takes towards completing another lap. She is beautiful. And I wish I was her. I wish I was the one smiling and ignorant to the real reality that exists below the surface of her life - of our life.

It's the first time (and this has been coming for some time now) that I have seen the physical ramifications of her condition. Before she looked normal - besides the purple lips - now the bone deformities are beginning to show and her ability to move is becoming more difficult.  The curve of the scoilosis is above 40 degrees now. The left leg turns in at about 20 degrees. She spends time in pain after physical exertion. I am beginning to see the signs of decline. Her belly is filled with the ascites from her liver. I want so desperately to get rid of her GTube - she will be 9 next July - but I know her decline will increase rapidly if I change her nutritional intake.

But the answer still remains at no. No transplant. "She'll bleed out on the table". Words that echo in my mind. "It's just too risky, 5 heart surgeries of scar tissue to go through - she's gonna bleed out before we can remove the diseased organs". The answer remains no.

But today I saw the future. I saw my Big Girl as she would be in the near future. Her endurance small, her physical pain increased but still mighty in heart.  Still alive with a smile while shaking her "booty" as she calls it.

Alexandra - you are mighty. I wanna be just like you. I want to take this burden from you.

But our answer will remain no. And we will keep going cause that's what we do. But I will continue to carry that image of her - hobbling and swinging her little frame around like it's no one's business - with me everywhere I go.

I can't change this path. The words I once said "Well how is sats of 80 gonna feel like at 15! She will get winded getting out of bed!" still echo so loudly.

Those words are coming to pass. Her body cannot do what it used to. She is in pain.

But the answer still remains no.

Wednesday, November 4, 2015

What happens when you get no sleep

I have dreams. Lots of dreams. Not the "I'm asleep, dreaming" kind of dreams but the kind of dreams that live in your heart.

Someone asked me the other day "What's your greatest passion?". Honestly at first I thought to myself "sllleeeeeepppp", but I replied "Keeping my daughter alive".

What a loaded answer.

I'm passionate about many things - its whether or not I will have the opportunity to accomplish those things that really comes into play.

My life isn't easy. But no one's life is easy. We all battle something.

So what do you do when the support needed to accomplish those things isn't there? I don't know. And its where I am now.

I don't want to give up on my dreams. But there are some that may not get accomplished. I can't continue to berate myself for those things. Circumstances just won't allow them to work. So in a way you give them up and put your energy into something else.

It won't be a wasted life leaving some of those dreams behind. It will be working with what I have.

I've learned so many things about myself in the past month or so. And I've realized how I really feel about the world and my place in it.

I've come to terms about the way I feel about my personal relationships and how while they are not what was originally intended I will continue to honor the promise I made. I made the decision to carry more than my share and I know I can do it.

It's gonna be what it is. I may not have control over some of it but I can decide how I will react. So I react with grace, strength and fortitude for the continued fight. I have learned to sway in the gusts of the wind and not break.

My heart is still broken - yes. It always will be. But that's how pain shapes you.

I've got a story to tell. It's sometimes beautiful, joyful and other times its down right horrible.

I am what I am. I'm a product of the environment in which I live in.

Take me as I am.

Also this is the kind of blog posts that get written when you have had no sleep.