If you are a mum like me, you do this:
run and hide in the bathroom when the kids are driving you nuts.
Well, my sweet, smart and cheeky S just destroyed for me.
Today, while I was trying to find my sanity she came up to the bathroom door and sang “do you want to build a snowman?”
then she sang through the lock and then under the door.
how could I not open the door?
so thanks Frozen. I have lost my refuge.
It was incredibly cute though. I’m still smiling.
On monday night we were all sitting together at the dinner table chatting.
The girls are fascinated by age and love to play this game “when I’m x, how old will you be?”
J went big on this. “When A is 80, F, you will be 74 and S will be 70”. The kids loved it!
I watched their happy faces and tried to imagine them sitting together having fun, at those ripe old ages.
And I could. Except for F. This little thought fluttered through my head so fast that it was almost imperceptible.
“Will F reach 74?”
I didn’t have this thought about the other two.
Now, you never know what the future will bring and I don’t know what it means, that I can picture S and A in their 70s and 80s but draw a blank when it comes to F.
I don’t even want to try and interpret it.
But I just bet that all of you out there, with kids with a chronic illness, will have that same fluttering thought if you play this game.
You might even have that thought about yourself.
Is life just so much closer to the edge when you are sick?
for the last 3 and a half years we’ve been going to the hospital to get Fs Mickey button changed.
Now, technically, we can do it at home. Unfortunately the first time we tried it F had an infection in the wound and it really hurt. She freaked out and since then Nurse H does it. She’s the specialist stoma nurse and F has known her almost all her life.
it was going well until today. For various reasons nurse H isn’t allowed to do it anymore. Today I was getting trained and doing it with her and it all went tits up.
F has got really strong stomach muscles. (Although according to her she hasn’t because you can’t see the “stripes on her tummy”. What can I say? She obviously has a great role model in me, not).
She was tense. Tense muscles contract. I tried to pull it out and it got stuck. Nurse H took over and she had to practically yank it out and shove the new one in. That’s not how she did it, she’s a professional but it was almost impossible for her to do it.
So after 3.5 years building up to F allowing me to do it, we are back to square one.
Nurse H’s suggestions? Back to the child psychologist to help F get over this fear (of something that is actually uncomfortable and sometimes painful).
Or go back to a PEG. This can stay in for years (but you never know how long) but requires surgery to put in and change. And there will be a tube dangling from her body again.
Rock and a hard place.
(I was going to call it Hobsons Choice but I googled. What we have is a dilemma (2 unappealing choices). A Hobsons Choice (this or nothing) might be easier. Then I wouldn’t need to decide.
so, what to do?
Unpleasant experience every 2-3 months, potentially scarring her psychologically (some more).
Or surgery every 3years or so. And having to be careful every minute of the day so that the dangling tube doesn’t get caught on something.
Rock and a hard place.
The coach in me is saying “that’s not a helpful perspective” and she’s right. But I need to find some energy so that I can let go of this very stuck and comforting perspective (as long as it’s a rock and a hard place it’s really easy to put off making a choice).
I think it’s time for some Dr Seuss
WITH YOUR HEAD FULL OF BRAINS AND YOUR SHOES FULL OF FEET
YOU’RE TOO SMART TO GO DOWN ANY NOT SO GOOD STREET
Soemtimes it feels like the only reason we have school holidays is so that F can fit in her “get sick” time and not miss school.
Every holiday contains some days of sickness. Every one.
This December was no exception, except that it started with S. She got 5th disease, otherwise known as slapped cheek syndrome.
S was a bit itchy, achy, cried more easily but otherwise was actually kind of okay. I would describe her as being a bit off for a few days.
Then F got it. It just hid her harder. Because she is actually ill almost all the time, any other illness can really put her out of action.
She had to take to her bed, couldn’t keep on playing.
THEN she got impetigo on top. How cruddy is that? (pun intended).
My heart ached and I didn’t know what to say as she cried in bed, not understanding why S only got a bit of a rash but she, F, was sick in bed, with painful, itchy, sores all over her face.
You see, she knows. She sees the difference. She does always get sicker than her little sister. Than anyone else.
And she knows that it means that she has to miss out on fun, playing and parties. Not her brother, Not her sister. Only she misses out.
My heart still aches and I still don’t know what to say to that.
Do you?
p.s. she didn’t scratch her impetigo sores, not once. She had them all over her lip and chin, really like a beard. And she didn’t scratch them once. She is my hero.
I always think I’m not writing enough and then I got this from wordpress. It’s good to look back at what you have achieved. not just forward to what still needs to be done.
So actually, thanks wordpress. This is one compilation of 2014 that I actually like.
See the #fireworks I created by blogging on #WordPressDotCom. My 2014 annual report..
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.
I am a good mother.
amber rahim 