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Wherein you will find posts with humor, photos, reviews, occasional rants and journalistic entries of interest to me alone but that I hope will touch you, the reader, in some way. I remain sincerely yours,
A Work in Progress

Saturday, April 18, 2015

Not normal


I have spent time every day for our entire homeschooling career on a message board that I love.  It has been a haven for me and I've made friends there, people I have never met in real life, but that I "know" and care about anyway.  But lately it's been strange. I feel distant and estranged from my "imaginary friends".  I can no longer relate to anyone there the way I used to do.  I can no longer chime in on posts about teenage behavior, sleep patterns, all the minutia that is part of everyone else's life.  Because our life is not normal.  Our goals are no longer the same.

Goals I used to have for my daughter, graduating, going to college, becoming the nurse she's wanted to be since she was five years old,  moving up and out in the world I no longer entertain.  Because our life is not normal.

I know I am not alone, that there are many parents of chronically ill kids, but I feel alone. And if this is how I am feeling, how much worse is it for my daughter? 
Life derailed.

Her life, our lives, revolve around pill schedules, iv medications, doctor appointments, sleepless nights, pain-filled days, exhaustion, anxiety, and heartache. And there seems to be no end to it, no timeline, no encouragement, no improvement. 

We are 11 months into treatment.  On one protocol, she had one good month, a month during which she felt almost normal and she was looking at getting her GED and going to college, she was excited and happy, all of which made the ensuing months into decline again that much more heartbreaking.

Last year, on her 18th birthday, she got a port put in for delivery of iv medications. Her 19th birthday is next month and her life remains at a standstill.

At the risk of sounding childlike, it's just not fair. It sucks and it is not normal, not the right way of things.

She goes to one of the finest doctors in the field but I am starting to second guess everything.  He was our only hope, we trust him and he believes in her but why, why isn't she better?   I wish I knew for certain that we were doing the right thing.  If I feel so helpless, how much worse it it for her? 

It's been really hard on our youngest as well.  It can be difficult around here at times.  Although she was also ill and still has some lingering symptoms, her life is moving on.  She gets her braces off next week and she is going to high school in the fall and I have such high hopes and dreams for her.  Maybe because, with her, I am allowed to have goals and dreams?  She wants to work and travel the world and I want to see her do it all.

I am sitting here typing, broken, crying, hopeless, and I'm not even the one who is sick, so how much worse is it for my beautiful firstborn? I want, I need, to be strong, to be encouraging, to keep her going, to raise her up, to help her fight, to keep going.  Because it's my right, my privilege, my honor, to do so, even when it hurts.

My darling daughter, this one is for you.  Hang in there.  I love you. 
In case the video isn't there for some of you, it is here. Perfect




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