Dam

It was stormy here last night.

I wrote about my daughter’s ‘waves’ previously. They’re when tears come flooding out in a sudden rush, as if she’s suddenly been caught by onrushing water at high tide.

She’d not had one for while. Last night, the dam burst and she had seven. Nothing could console her. It was the middle of the night before she finally fell asleep. All this woke her brother - who’d taken some serious coralling to get to bed - and who seemed to think it was morning already.

I don’t always find out what causes a wave. But at 1.45am, when the tears finally dried up and the tide went out, my girl whispered something to me.

“I don’t know what plate to have at Nanny’s tomorrow.”

So it seems that the emotional meltdown may have been caused by this: My daughter has a treasured Tracy Beaker plate, which she eats all her meals off. For Easter I bought her a Hello Kitty plate, which is now her new favourite. Or so I thought. It looks like she’s torn between which she likes best. And last night, that was enough. Her sleepy little brain got stuck on a choice, and it caused a crisis.

“Is that what the matter is?” I asked her, sitting on the edge of her bed, our conversation lit by the flickering light from her fish tank.

She nodded.

“Shall we take both plates with us, and then you can choose when you’re there?”

She nodded again. And rolled over and went to sleep.

Video is Lee Dorsey - Tears, Tears And More Tears (thanks to @twrafferty for introducing me to this track)

Tired

Tears. Aches and pains. Worry. Nerves. Frustration. Hormones. Tiredness.

It hasn’t been a good day. All of the above have been showcased by my daughter. And some of them by me, too. The need for full scale bucking bronco toddler-wrangling hasn't helped, either.

I’m too shattered to think of a funny line to insert here.

I’m not sure why I felt the need to share this. I don’t normally mention the run-of-the-mill difficult days. 

They happen. Quite often, like today, on the fourth day of my husband’s four day shift. 

He’s off from tomorrow. Reinforcements are on their way.

But like the lady says in the soul-soothing song below, this was one day I really could have done with my firecatcher, rainmaker, soothsayer, guardian, plate-spinner, peacemaker and liontamer.

Video is Charlie Dore - Liontamer

Strings

I went out last night, with some very old friends.

And we had an amazing chat - fuelled by alcohol, admittedly - and found out some things about eachother we never realised.

And it's struck me. How little we really know about other people's emotions.

I've revealed more on this blog than I ever have face to face with some of my closest friends. It's odd: I've always been able to share my feelings more readily by writing them down rather than speaking them out loud.

I have never talked properly to some of my loved ones about the despair I felt when my daughter was diagnosed with Prader-Willi Syndrome.

I held up a shield of bravado and got on with things and didn't complain.

It worked for me at the time. It was the only way for me to deal with the fact that my daughter had been born with a disorder that would not allow her to live a normal life. It still hurts me to my bones.

But putting up a front also meant I didn't necessarily share the good things. The joy I felt at other moments. The moments when things happened in my daughter's life that made me grin like a wide-mouthed frog. The ones that thrilled me to my bones.

But I get it now.

Life isn't fair. I know this. 

So. You can either sit there with a ball of twine, tying yourself up with knots of bitterness and bile.

Or you can fan out the strings of hope and possibility and chance and goodness and surprise and fun. And see what life picks up and tugs.

Video is Flight Of The Conchords - Hurt Feelings. 
Because if ever I'm feeling a bit down, this sorts me out by making me howl with laughter.

"I feel like a prize asshole 

No-one ever mentions my casserole

Could have said something nice about my profiteroles"

Wave

My daughter had a wave yesterday.

That’s how we refer to an episode where she is overwhelmed by her emotions. (A bit like me watching the end of Casablanca after four glasses of wine).

People with Prader-Willi are emotionally immature, and struggle to control their emotions. In some, this might be anger and frustration, particularly when food is denied to them. In my daughter, it takes a slightly different form.

Every now and again, she gets upset. And I mean really upset. A body-wracking sobs/ tears rolling down her face/unable to be consoled kind of upset.

The strange thing is, we can’t always work out what sets it off. It might be tiredness - but then there’s plenty of times when she’s tired that it doesn’t happen. Perhaps it’s anxiety - maybe when all the little worries and stresses swirling around in her head build up to breaking point.

The best way I have of describing it is that it’s like a wave. She might be paddling along, dipping her toes into difficult emotions, when suddenly, the tide rushes in and a wave of feelings crashes over her.

There is nothing we can do. My husband or I just hold her, brush her hair out of her eyes, and try and say calm and comforting things (probably to make us feel better, because she’s not really aware of them). The best we can offer is to curl up on the sofa with her for 20 minutes, if it looks like being a big wave.

Because all we can really do is wait. Then, as suddenly as it started, the tide goes out again. The wave retreats, with a whoosh. And with a wipe of the eyes, a sniff, and a deep breath, she’s back. And asking me why I don’t like Justin Bieber when he’s so good at singing. Telling me her Daddy is the worst dancer in the world. And asking if it’s really true that a man puts his penis into a ‘lady’s bits’ to make a baby. God, where’s a wave when you really need one?

Video is The Pixies - Wave Of Mutilation

Video is The Pretenders - Stop Your Sobbing