This blog is supposed to be my story: what it’s really like, living with chronic illness.
It’s my view as a “patient” myself and my view as a parent to a chronically ill child.
When I write as a parent, where is the line between my story and Fs story?
When things happen to her, they affect the whole family, they happen to us too.
Yet, they happen to her first.
So am I telling her story or mine?
That’s the question on my mind lately. It’s also why I’ve not been blogging so much lately.
Did I drift away from my story to hers? Admittedly, it is so much easier to talk about her pain than my own. That may sound strange; a mother normally feels the pain of her children keenly. And that’s true: when she hurts, I hurt. But there is nothing more sharp than our own pain.
For while we feel bad when they fall and scape their knees, it is only when we fall and scrape our knees that we realise that it burns like a b*tch.
Inspired by a session with my coach on how we can shift out of (negative) emotional fields. We all have these thoughts of self doubt, that we are doing it wrong. But we don’t need to stay there. We can invite the feeling in, get to know it and then send it on its way.
Come on in, my old friend Self Doubt. Come on in.
You’ve been knocking on my door for so long. Whispering, and in turn shouting, through the letter box.
No matter how tightly I hold my hands against my ears or how loud I set the telly, I can still hear you.
So come on in. Have a seat. Get warm. Have some tea. Take two biscuits, not just one. Yes we are in the Netherlands but we are flouting the rules anyway by being together like this. Take the whole tin.
So what is that you want to tell me? What must I know?
Yes, I am a terrible mother.
Yes, I am emotionally scarring my children and they will never recover.
Yes, I am not doing all the things I set out to do.
Self Doubt, you keep telling me this as if I don’t know. What is your urgency? Are you trying to keep me away from joy? Are you trying to keep me small, afraid and guilt-ridden?
Well, it’s been working my friend.
But now that I have invited you in I can see you clearly.
You are small and frail. Brittle. Be careful with that tea, it may melt you, turn you into a puddle of ash.
Yes, now that I have invited you in I can see that you are small, not me. You are guilt-ridden, afraid, urgent. Not me.
You look tired. All this banging on doors and shouting through the letter box has tired you out. The anxiety is wasting you away. So let me send you to a wonderful place. A place in the sun, where you can relax. You do not need to speak for there is no one to hear you there.
Go. With my blessing and good wishes, go my old friend Self Doubt. It is time for us to part ways. We do not belong together.
I belong with Self Believe for I am interesting. I am quirky. I am dance.
This is the thought that I am working on this week. If you are anything like me, you totally believe it of others but somehow when it comes to you… it’s no longer a conviction but something you would like to believe.
They say that the first few hours after the birth of your child are critical for bonding.
If that’s true, I’m fucked. And F has a really great connection with some NICU doctors and nurses whose names I can’t even remember.
At 29 weeks my labour started and they managed to halt it after 30 hours. My birth plan, which I hand only just started thinking about, became this: keep my legs crossed for as long as possible. Her lungs aren’t ready yet.
A week later you came into the world just before midnight, by ceasarean. 5 eager doctors waiting to whisk you away.
Before they dashed off I got a glimpse of you in the incubator about a meter and a half away. These doctors were greedy to have you to themselves, their reluctance to take those 30 seconde so that I could get a glimpse of you were clear (ok, let’s be fair, they needed to take action quickly to save your life so they couldn’t hang around).
That was the last I saw of you for 24 hours. You were a tricky little lady, with your tiny veins and losing fluids so quickly. They have never had such a challenge to keep a baby hydrated before (and I hope it never happens again).
I did not recognise you that second day. You were so tiny, and so different than the baby I had seen the day before. Wrinkled. Where had all the softness gone?
It took two of them to pick you up, hold your limbs in place and keep all those tubes and wires in place, and place you on my chest. I don’t think you could have found two happier people in the world at that time than us.
We didn’t get long, kangarooing is very tiring for premature babies, and you had to go back in to your incubator,your new womb.
Over the next 5 weeks we didn’t get t spend much time together and I didn’t get to hold you much. You were really ill and sometimes I wasn’t even allowed to touch you at all.
The next few years were a roller coaster where I felt that I never gave you the attention that you deserve because there was so much to do to keep you out of hospital, to get you feeling well.
I always thought that we only started bonding when you were about two and a half. This week you turned 7 and I realise that I was wrong.
We have been connected, bonded since the moment you existed.
I did not have a “big moment” or rush of feelings when I looked at you the first time. There was no sudden falling in love. I was in love with you already.
I’m taking a break this week. I am tired, pleasantly tired . Oh and replacing the kitchen so the house is a mess.
If any of you know where to get one of these for humans (not an ordinary hammock but just like this and especially with the fluffy lining) don’t tell me where I can get one, just send one to me. Please.
Some people say that life is like a roller coaster. Mine is, or rather, what happens inside of me is like a roller coaster. One week content and satisfied and the next, not. As I journey through my life, trying to bring up confident children, trying to create a new career for myself as a coach or just manage to get through the day, I slip and slide between the two.
This week as been a “not” week so here I am On the Brink.
Standing on the edge of a very tall cliff.
Strapped to a glider.
Not knowing what I am doing, no one has taught me how.
Yet I am supposed to jump, leap, leave the safety of earth beneath my feet.
And my job is to NOT smash to the ground and crumble.
Stay in the air and get to my destination.
Navigate. Set a course. Live up to expectations.
I am scared to jump yet I have vertigo and standing on this edge is physically painful.
Nausea. Dizziness. Spinning.
It is unbearable to stay here and I must move.
The destination is too far away, I can barely see it.
amber rahim 