Sunday, February 21, 2016

My True Heart

Yesterday I had the opportunity to participate in a wonderful conference put on here in the Phoenix area by the Nick and Kelly Heart Fund for children with congenital heart defects. It was a fantastic experience. A lot of wonderful information and a great time seeing so many of my fellow Heart Moms.

I decided to choose the panel "Redefining Palliative Care" mostly because Alexandra's cardiologist was in it and I truly believe there is so much palliative care can do in medically complex children. Its not 'end of life' care anymore, it's quality of life care.

The panel discussion members didn't really have a particular agenda, and had heard me and Alex's cardiologist talking and then the palliative care doc and her cardiologist says "Let's talk about Alexandra and use her as an example."

Of course I said yes. I have never been afraid to share our story. Sharing stories helps the next-generation of families who will be diagnosed with these conditions.

I went through a brief history of Alexandra while her cardiologist talked about her reasons for transplant denial and how we are trying to give her the best quality of life by her supplemental GTube feeds, PT and OT and continued constant blood thinner therapies.

I watched as the fellow people in the rooms jaws dropped. They couldn't believe there was this lady - this Mom - having this medically intensive conversation with several doctors and a psychologist.

And I felt proud. Because I fought hard to become this person. I researched and researched and became the person who essentially diagnosed Alexandra with Abernethy Malformation, where doctors had missed it on radiological reports.

I thought of MedX and how it has even more given me that fire to be an active and engaged participant not only in her care but in the reform of healthcare practices.

I felt alive.

When I advocate, when I participate in these discussions, I feel alive.

We talked about the good, the bad, and the ugly of Alex's situation and people where floored. We used her situation to understand why a palliative care doctor should be involved in medically complex children because it means a better life for that child - no matter what the quantity is.

I was going to give up advocacy. I didn't have the time to do it and work a job. We need the money and I couldn't devote myself to it full time. I thought it that it just wasn't in the cards for me. And maybe it's never going to be my job - and that's okay.

It is my passion. It's what makes my mind think critically and theorize different ways we can improve lives.

It's my true heart.

Thank you to MedX for helping me find that passion.

I have found what makes my heart burn.

And it's wonderful.

Sunday, February 7, 2016

The Truth

"It's all on you honey, its all on you".

"Mom, I can't keep doing this. I can't carry the weight of it all."

"You don't have another choice, you have to."

A few tears fell from my eyes.

Then I shrugged it off and decided I'd get the girls out of the house for a few hours.

We saw Kung Fu Panda 3, and I fell asleep about 20 minutes in.

"Mom, your snoring, wake up!"

"Whoops, sorry."

My Dad decided he was going to tear up the backyard and get rid of a lot of the bushes because Kevin won't keep up with the yard. I hated those damn bougainvilleas anyways. Yet, the pink flowers were pretty things to look at. They made the backyard glow a bit.

I'm learning to live without pretty things. I'm learning the ugliness of life.

I'm learning what happens when you allow yourself to be influenced by the negative things in this world.

And I'm not completely the one at fault. No he is responsible too.

I want a man, I want a man who goes to work, makes money, and comes home and doesn't say ouch with every move he makes. I want a man who gets the kids off to school on his day off and then takes an hour and trims the backyard bushes that need trimmed. Then he comes inside and takes a shower rather than sitting in nasty sweaty clothes for the rest of the day. I work on my days off. I do laundry, clean, do my homework, grocery shop, run errands, etc. I don't have a day off where I just sit in between playing with my tablet.

I know this is horrible of me, but I am just over it. I am just over his uncleanliness. Over wearing the same pajama pants every night for two fucking weeks straight until I finally go in and wash them when he isn't around. It fucking smells. And they are in my closet. I'm tired of him refusing to let me get him a set of drawers and his clothes in fucking dirty laundry baskets in my closet so that I have no room to hang up any clothes. I'm tired of the mountain of fucking DVDs in our closet.

I am tired of the ouch and the ugh's every time he moves. God forgive me. God forgive me. I am a horrible person. And I know I'm fat. I know I over eat. But I never smell, well sometimes I do and its become an issue because I see myself becoming like him. Giving up. I am watching myself give up.

I am watching myself give up.

I am a fucking 36 year old woman who's Mom and Dad have to come over and fucking trim our bushes! My Dad is 65 and is coming over to hang bulletin boards in the girls rooms. He can't do that. I'd have to hear how much his back hurts afterwards. Then he would sit with his tablet and fall asleep in the chair. I am fucking tired of living with this old man.

He's only 52, but he is less active than my 65 year old Dad. Less active than my Mother who is a diabetic, hypertensive, and has had triple bypass.

I am fucking done.

I want a man who kisses me, who doesn't hug me and wince.

I thought while writing this I'd be balling my eyes out. Truth is, I haven't shed one tear. Why? Because I am done. I am not in love anymore. Haven't been for a long time now. What I am is disgusted.

He disgusts me.

Hate me, hate me. I don't care. I don't care anymore. He chose to give up. He chose to alienate me. I put on my big girl panties and dealt. You can't even trim a fucking bush!

I am so sorry. I am sorry that this is the way it is.

I've asked you to come with me. To find joy in life again. But you won't. You can't see past anything. You cannot see past your own selfish needs. You won't work through the pain, and when you do, you do it with such disdain and vinegar that its miserable.

Our daughters are miserable. They don't want to be with you because you don't do anything with them. You don't actively participate in something with them. Watching TV with them is not being with them. They want you to play with them. They want you to love them. They don't want to hear you complain that your back hurts.

I am so sorry. But this is the truth.

Wednesday, February 3, 2016

It's My Fault

I watched the Physical Therapist shake her head as she was watched Alexandra hobble down the corridor. Alex did so with fervor, smiling as she turned bluer the more she walked.

My heart sank with that head shake.

"Why hasn't anyone referred her to PT?" The therapist asks.

I honestly didn't know what to say. "Well I did - when she was 2 and couldn't walk, but once she got into school we stopped PT."

"She can't run, she can't even walk right."

"I know that's why I'm here. She's not getting PT at school anymore, and I know she's become very physically disabled."

My heart. To see her smile and laugh yet have to grit her teeth to do what any average child would do with ease.

I let it go. I let it go because I had no time. Between work, school, dealing with her school, dealing with Aria, traveling to Boston, oh and the constant vigilance that she requires - I let it go. It's my fault.

I can't afford to be a stay at home Mom. My Husband doesn't make enough money. So I went to work and school so that I could help support this family.

And she paid the price.

"Do you see how she never actually puts her left foot completely on the ground? She doesn't stand properly either. She puts all her weight on one side. Which doesn't help the scoilosis."

"I have seen that. I didn't know. I do organs, I have no experience in bones. The bones don't keep you alive. I only had so much time to focus on things."

It's my fault. I shouldn't have let it go. Yet there is only 24 hours in a day and I needed to sleep sometime because I was no good to her dead.

Aria has paid the price too.

I feel powerless and unable to do anything. Unable to get anywhere.

Unable to change our station in life.

Unable to manage her care.

I'm sorry Alexandra. I tried darling. I went to the ends of this country trying to find someone to save you. I've bankrupted your Daddy and I twice doing this. I don't know what else to do.

Aria - I'm sorry. I'm sorry Momma had to leave you behind time and time again. I'm sorry I've asked you to help me move her feeding pump or get me her GTube supplies. I shouldn't have asked you for that. I shouldn't have asked you to be her caregiver also.

Kevin - I'm sorry. I'm sorry I got burnt out, tired and angry. I'm sorry I didn't trust you. I'm sorry.

It's my fault. I fell short. I hate falling short. It's my worst fear besides losing her. It looks like I'll have to come to terms with both my greatest fears coming true....