>Part One: Originally blogged: 10/25/15
My youngest, recently learned how to ride a bike, I was not able to see or teach her. She recently had a fall party at school. I always volunteered at school, until the CVID diagnosis. Schools are germ factories. I did not know how to tell her I would not be there to volunteer.
She accepted it.
After one year post diagnosis, I guess she is beginning to stop asking.
A poem that captures my feelings everyday…applied to my guilt and sadness of being a parent that has a chronic illness.
I was given the chance to be a parent that I couldn’t be to my other 3 children.
I’m not the parent I thought I’d be to her, either, and not by choice.
Not at all.
Not even close.
I can’t take my daughter to the park,
Or even play outside with her,
I’m fearful when she has a friend over, and I hear a sneeze, a cough.
I can’t volunteer at school, like I used to,
I’m extremely afraid of going to any school or birthday events,
One germ is all it takes. Their virus, turns into my bronchitis, sinusitis, and weeks of antibiotics that I’m becoming resistant to.
I can’t care for her the way I feel I should,
I’m her parent and I feel like a weak link.
I can’t do the things I want to do with her,
I never feel well enough,
And it hurts.
“Will Dad take me outside to play?”
“Can we go swimming?”
“When can you take me to the mall?”
—Are questions she asks me.
She knows I can’t do those things.
And has learned to stop asking.
The absence of the question hurts as much as saying “no” did.
Or dreading the questions, I knew she was going to ask.
On the rare days I think that I feel like myself,
I can feel her surprise and elation
Those days, I think, “Yes! I’m doing it!”
And then I crash back down into my reality,
Needing to rest every afternoon,
And sometimes every evening,
Needing to stay away from populated places that have “germs”.
Usually feeling like I can’t take any more by 8 pm every night,
No more noise, talking, or needs,
Just let me rest and go to bed, I beg inwardly.
All to start again tomorrow,
Waiting for my meds to kick in before I can really interact with her,
Then when they do, the host of side effects kills any private plans I wanted to surprise her with.
On bad days, I get angry, depressed, hopeless, and feel I’m failing.
This child deserves more, this dear child did not ask for a sick mom.
Angry at myself, angry for hurting my child, angry at this disease.
Why me? I think, I question it continually, but there are no answers.
No bother, it is, what it is.
All I ever wanted was to be a mother.
And I can’t even do that right.
It’s another loss in a string of losses.
Letting go of the dream I had of my life as a parent;
Accepting the reality of my current situation,
And trying to be at peace with that, which is a constant battle.
I will never find the peace of not fulfilling what my expectations are of myself as a mom.
Guilt ridden, and sad for my child.
>Part Two and 2.5 years later is blog is in development. I hope to post Part Two in the next month.
It is a painful post to write. As the fears and anxieties of children who live with a chronically ill parent are severe, frightening, and unfair for the child.