When a baby is born and for the first time, you hold that sweet little thing, you hold them close to you,
breathe them in
and give your heart away.
Never in your wildest dreams do you stop and wonder if there is anything wrong, what the future will hold for this little person.
In those first few minutes the euphoria of becoming a Mum is all encompassing.
So, when you find that your baby is sick or has a condition, it is like someone comes along a kicks you in the guts.
Whoomph!
The emotions that swirl around are many and varied.
How many of you felt sick?
How many felt panicked?
How many of you cried?
I did.
I felt all of those things and more.
I still do sometimes, when things get away from me.
I wonder what will become of Ivy as she gets older. If she will do okay with school, how adolescence will be for her.
I worry about the illnesses, the infections, if the medication was not available to her anymore
because, without it, a simple cold could become something life threatening.
Then there is the guilt.
On so many levels, it’s there on a daily basis.
I know, it’s a part of normal motherhood but for a kid, who is sick, the guilt factor is heavier, at least for me:
guilt that I can’t help her, that I’m not doing what is right for her. Decisions I’ve made on her behalf. What if they were the wrong ones?
Guilt because I can’t fix this.
There are some days when I don’t know what to do with these feelings.
Some days when I don’t cope very well, some days when I cry, even some days when I want to do a runner.
While we were in the hospital, last, our doctor mentioned that Ivy was so adrenally supressed, from the prednisone that he was unsure if she would ever recover fully. He talked about needing maintenance doses of steroid for the rest of her life.
A steroid that I chose to put her on.
The prednisone has long term issues such as brittle bone disease and diabetes, not to mention how it might effect her kidneys and her fertility further down the track. At the moment, her adrenal gland is virtually not functioning and I asked the doctor if I had ruined her.
“No,”
was his response,
“how could you ruin her?”
He didn’t understand that I held myself accountable for the decision to start the prednisone.
Actually, I had pushed for it, when Ivy had presented with the blistering. I had tried all of their creams and medicines but in the end, it was me who asked if she could try the prednisone because I had read that Pemphigus was steroid responsive.
So, essentially, I do feel responsible.
Someone once told me that guilt is a useless emotion. It has no positive outcome and it makes the person miserable.
I know that is true but I can’t seem to let that feeling go.
This is what I am pondering over tonight.
Tonight, the big ‘G’ is eating me up inside.
Also blogging at Three Ring Circus
Oh, Tiff. I am often guilt-ridden, too, about things related to Max. But allow me to offer some objective perspective here: You were doing something you thought could only HELP Ivy. And she is young, so while the doctor may be saying the worse it is also so very possible that her body will recover. Please don’t be so hard on yourself.
The first time I was told exactly how severe Parker’s PH was, I looked at the cardiologist, then at my husband and then I walked straight over to the garbage can and threw up.
I felt responsible too. Like I should have ‘known’ about Parker’s PH when people were constantly asking why he was so pale. And little. And frail.
The guilt though eats up any energy for the positive. And without the positive you simply lose the strenghth to fight.
Parker’s PH numbers have, oh so slowly, made a bit of improvement.
As time goes on Ivy’s body just might surprise all of you.
My guilt comes and goes. You have to get ahold of it. It can not consume you. God chose you to you to be the parent of an exceptional child. He has provided you with the grace and strength to be her parent. I know it is hard but you have to put the guilt on the shelf. Our children have a purpose or they wouldn’t be here on earth. We will find out one day why we are all going through this, keep looking to the future.
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