Monday, May 25, 2015

Hanging on Hope

I had what I would describe as a mini nervous breakdown this morning.

I just went blank, then began to cry.
I was just done, just so over it.

When you hang the successes of life on the idea of a child surviving ~ this is what happens.
Because without her, life is nothing. It would be nothing. Every single step I take, every thing I do is in support of keeping her alive. I don't do things for the sake of my younger child, I don't need to. I do everything for her. And it's killing me.

I work more hours at my job ~ because its nearly impossible to make their standards working only 15 hours a week ~ I do this so that I make my standards and maintain my job security. I try getting other jobs, ones that don't require sales goals ~ but they don't pay enough. I have to work. I want to work. I am better when I work.

My job isn't the problem. Its my life as a whole.

Almost 8 years ago now I made a deal ~ a very important deal. I agreed that I would take on this complex child and do whatever was necessary to keep her alive. I had to, I'm her Mother.

I am left wondering at this point ~ 8 years into this ~ where I went wrong. I did exactly what was necessary to keep her alive. And look at her she is thriving, but I am dying. I am drowning under the weight of traveling 3000 miles for medical care, figuring out how to pay for the expense of travel and medical costs, and all the other necessary things that go along with getting medical care out of state.

My youngest is a terror. An absolute terror disguised as a joyful child. Her eyes could kill you.

I am dying because every single day is a fight for food, fluids and meds. For getting her out of all the TV's in her head and to focus on the things I am saying so I can help her survive in this world.

I feel so horribly selfish. I am a Mother, I should be completely without self. But what I have learned is that without the self the Mother cannot exist. The Mother becomes a robot filling meds, making numerous calls for med refills, doctors appointments, therapists, and the like. She continues to put one foot in front of the other ~ while highly medicated ~ just to find herself at the end of the day frazzled and exhausted.

I do nothing for my youngest, and when I do, I get exhausted from it. Because I am already exhausted from taking care of the oldests needs.

I am dying and I don't know what to do to stop it. My family vacation turned into a trip for surgery. We can't afford to do both. This entire household revolves around her condition. So it defines us. We don't have the means to not make it our entire life. Everything we do is in response to what she is able to.

I have hung my hopes of a future on Heterotaxy. I have hung her future, mine, my Husbands and my other child's successes and future on her hopeful survival. What concerns me? What would happen if she didn't survive. I would be left with nothing, because she is everything.

Even my youngest told my Mom that Jesus sent her to me to help me. How sad!!?!? She thinks her purpose is to help me with her sister! She doesn't even have her own identity. Heterotaxy has become the identity of everyone in this house!!!

I sold my soul that day. When I called out to her on her date of birth "Cry for Mommy, Cry for Mommy Alexandra", I signed my name in blood over to Heterotaxy. Because without her, I am nothing.

This is a gift and it comes with a price. I continue to pay that price. Sometimes I just wonder how much more I have to give. My coffers are almost dry. How much more can I take? Only time and God has that answer.

So tomorrow, I will get up and go to work, like the catatonic state I was in today never happened. I will put my smile on, and the show will go on. Cause I have no other choice. With her I am nothing and without her I am nothing. I have never loved so deeply in my entire life. I have never felt so selfless and so selfish at the same time in the whole of my existence. I have never felt more empty yet so full I could burst all at the same moment. The world is ending and beginning all at once every single day.

All we can do is hope. I hang all myself on hope.