Still waiting

Is it good for me, all this reading? I keep looking at the Society’s website, even though I practically know it by heart now. What do I expect? Some new miracle cure to pop up? I don’t know. I guess on some level I’m thinking knowledge is power. The more I know, the more I can do about it. Only I can’t. I can’t do anything right now and that is what defeating me.

Day by day

Days go by now when I feel entirely normal. I still know what’s looming over us, but it’s like I can process it somewhere else, a part of my mind that is separated off and unemotional. Other days, like today, it threatens to overwhelm me again. Hubby is back at work today after a week and a half off dealing with this emotional bombshell, and I went into town after dropping Pudding off at playgroup. I expected to feel relief at the return to normality, and my usual lightness of spirit at being out the house with no children in tow. Instead, after getting what I needed, the cloud descended and it was as much as I could do to drag myself to the bus stop and get home. It is like all the life and joy suddenly gets sucked out of me. Partly I think it was Pudding being ill yesterday – nothing much, a lot of whinging, off his food and sulphur burps. But whilst he still can’t express what he’s feeling it’s hard to comfort him or know what to do. And I know it may get far worse than this.

There are lighter notes though. I’ve hesitated to tell many people about what is happening; partly because I am afraid of my own emotional response to sympathy, and partly because what do I say when it is all so up in the air still. But I did talk about it to another mother at playgroup last week, and I am so glad I did. Her eldest also has a rare genetic condition and they don’t know what the future will hold, but they’ve lived with it for almost 13 years now. She told me that the way she gets through it is to focus on the positive, day by day. Would be trite coming from anyone else, but from someone who knows what they’re talking about, it gave me hope that I can do the same.

I also spoke to someone from the MPS society which helped. They couldn’t really give me much information at the moment – I’ve read most of their website already – but knowing they are there is so reassuring. She listened quietly and patiently while I got emotional, and then told me what they can offer. She also said I can ring any time even if it is for a rant or a cry. And she said one thing which strikes me now as very wise – Pudding is the same little boy that he was two weeks ago, and enjoy him for that.


5.30am is becoming depressingly familiar. Though to be fair, it’s better than 2am. I come to consciousness and for a while lie there listening to the birds, being gradually aware of the sun on the curtains, and then boom, the knowledge is back with me. Or rather, the not knowing.

It can be so paralysing. I’m continuing to go through the motions. Clothes are washed, dishes done, Twiglet got to school, but decisions are crippling. I can stand in the kitchen wondering what we will eat for half an hour and still be none the wiser.

It is getting better though. This is my mourning period and I can see myself coming out the other side. But new losses hit me every so often. I mourn the loss of a ‘normal’ family life, the loss of my emerging life after the intense period of motherhood. I worry what life will be like for Twiglet – will he always be the one whose needs come second place to the concerns of hospital appointments? And so on. And strangely, I mourn the loss of petty little jealousies – previously I had been getting increasingly jealous of other mums as I could see the gap between Pudding and his peers getting wider. Now I just don’t want my son to die.


I can’t sleep. Again.

i’m tired and go to bed at a reasonable time, but then all the worries and possibilites start churning endlessly in my head, going round and round until i become dizzy with them. It could be the milder form. He’s progressing at the moment. but…

And there’s the problem. In my head I already know that the likelihood of reprieve is slim. My lovely vital engaging little boy might die before he’s 10. Or if he doesn’t there could be other devastating physical problems. I can forsee a lifetime of hospital trips, hope for new treatments, being dominated by this condition.

I already feel bad for Twiglet, that we can’t always do things that he would enjoy. How much more so will that be the case in the future? How can I stop myself snapping at him when I’m eaten up with worry about his brother?

In a way I know this is my grieving period. Accepting and embracing the worst that could happen, so when we get the actual diagnosis, it may come as a relief, a release from that worst case scenario. So I’m waiting and waiting again.

For the last year and a half it feels like I’ve been stuck in a strange sort of limbo – knowing that something isn’t right with him, and not being able to get that seen by any health professional. But of course then it was just a matter of ‘being a bit backward’ and ‘perhaps it’s something that will improve as he gets older’. Now, I’m still stuck in the not-knowing, but the thing we don’t know is much worse.

Real life feels strangely unreal. I can be going to fetch a bottle of milk from the fridge, enjoying the warmth of a summer morning meaning that I don’t have to shiver on the way to the shed, hearing the birds chatter gently to each other and wondering what the weather will be like. And suddenly the remembering thumps into me.

Part of me wants to shout from the rooftops what I’m feeling at the moment, display this rawness to the world, invite people’s sympathy. But circumspect behaviour kicks in. Why tell people when I don’t have the answers to any questions at the moment? Why open the floodgates in public when I may never stop crying? Why mess up their lives with noisy uncomfortable emotions? So I carry on normal conversations, laugh and enjoy sports day like all the other parents.

This is the very definition of isolation.

Thank the universe for my sister and good friends who I can talk to. Hubby knows now too, and I think it’s hitting him harder – I’ve had longer to process the possibilities.

Screening test

When I got the phone message at 5.30 on a Friday afternoon I knew it was not going to be good news. ‘Hi, this is your pediatrician. Please can you call me back before six, or speak to my secretary first thing on Monday morning.’

I’ve been expecting this since the second urine sample was taken – the screening test for MPS. I managed to speak to him and arranged to meet at the hospital today. He confirmed the positive screen and Pudding had more blood taken – this will be sent to Manchester to work out which type he has.

I feel strangely empty and matter-of-fact during the short appointment. Hubby still doesn’t have any idea of the implications of this condition – I haven’t told him what I’ve found out, not while he’s been so busy with work and overseas trips.