Tag Archives: special needs

Give up the Guilt

Give up the Guilt

I had such a lovely virtual week last week. I had great comments on the blog, lots of lovely supportive tweets during various crises. I even blogged about how great blogging was.

And then on Sunday, the one-year anniversary of the day Boo was supposed to have been delivered by planned caesarian section, I wrote a post I’d been meaning to write since I started the blog a couple of months ago. It was a pep talk cum virtual hug in the form of a letter to myself.

I wish I could claim credit for the idea, but I can’t. Earlier this year in my darkest days after Boo developed infantile spasms, I had a short course of CBT (or Cognitive Behavioural Therapy). My therapist tried lots of strategies with me to deal with the complex whirl of emotions I feel in relation to Boo, my family and our new life. The one that came closest to working most often was thinking, ‘What would I say to a friend if she were going through this?’ I practised it a lot. I’m still rubbish at it, to be honest. It’s much harder to be your own friend than someone else’s. But I knew the letter was a good idea. And when the time was right, on a particularly difficult day, I wrote it. I didn’t plan it. I didn’t pause in the writing. The only edits I made were correcting typos.

If you haven’t read it, it’s here. It felt helpful to write it. I was glad I did it. But I truly hadn’t expected the wave of lovely comments, emails, tweets and the enormous (by this little blog’s standards) number of views it would get. I am overwhelmed and humbled by this response. The idea for the post (again, wish I could take credit for it, but I can’t) seems to have resonated widely with parents. And not just parents of children born prematurely or with special needs. Because we all know what the two common denominators of parenting (no matter who you’re parenting where) are don’t we? Yep, that’s right: love and guilt.

I was particularly struck by the number of people who wrote to me saying that they wished they could write a letter like this to themselves. A letter that they could go back to and read in the tough times. And the more I thought about this, the more I thought about what doing this had done for me, the more I thought, yes: everybody who experiences the crippling sensation of guilt that seems sadly synonymous with raising kids should have an occasion and reason to be kind to themselves and let themselves off the imaginary hook.

So, I decided to set up a linky so that you can do precisely that. This is my first linky (it may be my last) and free WordPress doesn’t make it desperately easy to do. But I think this is important. I would be completely thrilled if some of you would consider posting links to letters to yourself below. I hope that writing these letters, reading those of others and commenting on them might help us all be a little bit kinder to ourselves and realise that we’re all in this together.

Come on. Let’s give up the guilt!



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Premmeditations: Reflections on Premmie Parenting
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Taking Each Day as it Comes. Not Today Thank You!

‘Just take each day as it comes.’ If I had a pound every time a well-meaning friend or even complete stranger said this to me …. I don’t think I need to finish this sentence, do I?

If you are a regular reader of blogs authored by the parents of children born prematurely or with additional or complex needs, you’ll have no doubt read many wonderful ‘what not to say’ posts, listing those often kindly-meant sentiments that can plunge us into despondency or despair. A particular favourite one of mine, by one of my particularly favourite bloggers, can be found here on Tatum’s Ain’t no Rollercoaster.

Much as I cringe or internally combust at the ‘I’m sure he’ll grow out it’ (brain damage? you’ll think he’ll grow out it?) or ‘well he’s a boy and they’re always a bit behind because they’re lazy’ (lazy? he has fought meningitis and battles the mixed messages his brain sends his limbs every minute of every day just to do the simplest things and you think he’s lazy?), my personal pet hate is ‘just take each day as it comes’.

After a concerned and kind mum said this to me (it’s probably about the 850th time someone or other has said it to me this year) at the school gates this morning, I started to ponder why this galled me so much. Living in the moment, after all, is an important life lesson and one I’ve come to appreciate the hard way over the last 13 months, during which I’ve spent so much time worrying about what was or wasn’t happening that I frequently failed to appreciate the little miracles (clenched fists opening, arms reaching out) that were happening each day. But she didn’t say ‘live in the moment’. And I don’t think that’s what she meant. She meant, I surmise from the rest of our conversation, don’t think too far ahead, don’t burden yourself with worry over what the next 18 years has in store. Take a step at a time.

It’s good advice, but I still can’t take it. What’s my problem?

First of all, it’s that this is such a redundant comment. How else can you live life other than by taking each day as it comes? All parents do this and, dare I say it, parents of babies born early or sick or with special needs have to turn this into an art form. So much is thrown our way. Everything can be fine. You can learn, as I did, to ‘take it’ that your little boy probably has cerebral palsy. And then when you think you can’t take any more infantile spasms can come out of nowhere to sideswipe you and ruin your little girl’s Christmas. But you know what? You take it and you deal with it.

So parents like me take and get took on a regular basis. But I still don’t want to take each day as it comes. Because underlying this trite little phrase seems to be an implicit criticism: that I am not leading my life in the best way; that I am looking too far ahead; that I am worrying too much.

Maybe. But you know, looking ahead, planning for the future, worrying … they are my prerogative. My job. I do these things for his healthy, older big sister and I have every right to do this for Mr Boo. In fact, he needs me to do it more than his sister does. Because very few things, beyond love and laughter, come naturally to Mr Boo. He and we have to MAKE things happen for him.

And that’s the crux of it all for me. Taking is such an ambiguous verb. We can ‘take the bull by the horns’. Great. Or we can be resigned and ‘take what’s coming to us’, ‘take one day at a time’. Let me tell you: there’s no room for ambiguity in our lives.

We are makers not takers, and as exhausting as it often is, I’m not going to relax into our new life. I’m not going to resist it either or tell myself I can conjure up a new reality by a misguided act of will. But I am going to plan ahead, to work out different possibilities, to research all the options and work with my family to do what’s best for all of us.

I know you’re trying to be kind. I know you want things to be easier for us. I am grateful. Believe me. I really am. But please, don’t tell me to take each day as it comes.

You see, I just can’t take it any more.