On Tuesday I was talking to someone and mentioned I was at the hospital. People always get alarmed so I usually say “it’s just routine stuff”.
Because it’s not an emergency. These are planned visits.
But this was my “routine stuff” visit yesterday:
after months of therapy and hypnosis, take my 8 year old to have a procedure that she is absolutely terrified of.
That’s my routine.
It was difficult a day and here’s what I wrote.
But, you just can’t dump that on people. It’s just not ok to bring them down into this. This is not their life. So I play it down. I tell a white lie.
So what happened at the appointment? We didn’t get the Mickey button changed. Despite all the therapy and preparation, F’s anxiety was just too high.
So we’re going to see if we can do this with laughing gas, to put her under.
The thought of it makes something inside me itch. I don’t want to do things to her when she is “asleep”. That’s also how she feels. She told me she would be cross if we secretly did it, while she was under.
Putting aside my feelings, I was really clear to hear:
it’s not going to be done secretly. We either change the mickey when you are awake or when you are asleep from the gas. If you don’t want to be asleep, then you need to let us do it when you are awake.
But I struggle. I have always wanted her to be able to choose; that her treatment should always be administered with her consent. And not just that she says yes, but I dream that she says yes happily. But she’s frightened out of her mind. She wants to travel forward in time so that she can avoid the procedure entirely. She’s thinking of time travel and this is what she wants to do with it.
And I need to accept that she isn’t always going to willingly agree. Sometimes, we’re just going to have to do it anyway. We have to make the best choice for her. And she might resent me for it.
Here’s another white lie I tell:
I’m just doing what any parent would do
I tell myself this often. And while this gives credit to all the wonderful parents out there, it’s actually a way for me to minimise what I am actually doing. Parenting a chronically sick child is hard. So hard. It’s not the same as parenting. The stakes are always high. Every day. So actually I’m not just doing what any parent would do. I’m doing what other parents with chronically sick kids do. Parents with chronically sick kids, be proud. You are amazing. And yes, I am including myself.
Here’s a final white lie
that unconditional love comes from our children
That’s what we say right? That our kids will love us unconditionally. But I think that the unconditional love needs to come from us, the parents. It is our job to love them no matter what.
We parents need to love our children enough to do the right things for them, no matter how hard, even if we risk losing them. And when they resent us, stop speaking to us, dislike us, we love them anyway.
November 5, 2015 at 1:41 pm
Oh Amber, this struck me to the heart, what a build up to that final last sentence. Veel sterkte with the new mickey button, you are inspiringly thoughtful, strong and an incredible mother. Lots of love from an admirer! Ann
November 5, 2015 at 3:21 pm
Ann, thank you for reaching out. Thank you for your support and kind words. I’m trying to take it in and hold it in but there’s a part of me that keeps saying “don’t fool yourself, you’re a terrible mother”. But I’m trying to kick it to the curb and hold onto your words instead.
November 5, 2015 at 5:48 pm
My darling incredible Mom , Amber,
Loving you up so very much and Farrah too. Oh my sweetie.
Holding in my heart both of you and sending Angels to Farrah.
Surrounding her in love and safety.
Love to you both and whole family
November 5, 2015 at 6:17 pm
big big hugs to you too Sonja. Whenever these bad things happen I think of you and wonder how you managed to get through all of this for so long. you’ve lived with this so much longer than I have. How do you do it?