Friday, January 8, 2016

Post Boston Ranting

I'm mad cause I've got this kid here who is in pain because they did something funky with her arms in the Cath Lab and now she's leaning even worse to the left and giving herself a hunchback to boot.

Kevin and I are trying to come up with some contraption to make her pull her shoulder back and Aria starts talking. I turn around and scold Aria. The thought that then goes through my mind - "oh the years of therapy that child is going to need".

I can't tell you how many times in the heat of the moment I've scolded Aria because she began talking to me while right in the midst of doing something for Alexandra. I know why she does it - its for attention. Because Alexandra always gets all the attention.

Because I've been away for over 5 days and now she has a UTI because I wasn't here to take care of her properly. This happens every time I go away.

So I come up with these plans like - 'let's move to Boston and then she won't be so bad cause I'll be around". It's not gonna make one bit of a difference.

I'll lose my greatest support system - my parents. I cannot lose my parents. Without them and my sister nearby - I'd be lost.

I feel inadequate because I'm almost fucking forty and I need my parents now more than ever.

This is my usual come home from Boston and I lose it. I've put my brave face on reliving the details all week of the last 8 years, hearing new news of left lungs being useless, and scoilosis curves of 51 degrees and spinal surgery imminent.

I'm just fucking done.

So what do I do? Go right back to work. No time to process nothing. Just jump from the frying pan into the fryer.

Sometimes I wonder how much longer I can keep this up.

I hold myself together with pills, Coca-Cola, and food.

I sound like some Hollywood debutant. But without the millions of dollars.

So in 6 months we have to go back. And its gonna be a painful painful surgery. We have to pray her heart can handle it. Cause if we don't she will be horribly disfigured.

I can't believe I didn't notice this earlier. I can't believe the doctors didn't notice it earlier.

I still believe ours is a cautionary tale. A tale of how a child can have amazing surgical outcomes but still succumb to inadequate medical care.

Still succumb to an approach to medicine that is not holistic, not multi-disciplinary.

If you are only treating the most apparent symptoms but not guiding the holistic care of the child you have done a great disservice. All this technology we have created for nothing because the child will still be lost. And for the things we could have easily watched for.

So who's fault is it?

All I know is - its mine. Even without the medical degree, or hell even a college degree - I failed to know enough to watch her. I failed to see it all.

What a cross to bear?

I allowed one child to be destroyed from a medical condition and the other I destroyed myself - because there just ain't enough time in the day to work (because I have to for us to survive), go to school (because I had to figure out someway to get us more money - so I went back to school - and my Husband is older and employers don't want people over age 50 anymore), and to manage the intense care Alexandra requires.

I did what I had to do because there was no other option but to travel for her care.

I'm always doing what has to be done. And I'm tired.

I turn off every ounce of love or compassion I have in me and become boot camp Mommy so that I can pull her out of the pain and anxiety of hospital life while I fall deeper into the pit.

I know so many of you feel this same way.

I am so sorry we are enduring this.

I hate this world.

1 comment:

  1. Yelp you are right but we do it and WE... you and I and all the other heart parents out there... will just keep on and figure it out as we go.... hang in there and focus on tomorrow... take Aria alone cvs tomorrow for ice cream and then go sit at the park alone.,. Thats what I do....

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