Whilst I was struggling at 3am this morning to save Tilly from her hysterical giggling fit, I was hit by a very strong emotion – fear. Or, more specifically – fear of her future.

Tilly has always been a fantastic sleeper and, on the whole, she still is.  But around a year and a half ago, she began struggling to get herself into a deep sleep – she didn’t cry, but did seek sensory input that would help get her there (rubbing her hair, humming, banging the side of her bed).  As time went on, it became an even bigger struggle for her and, last year, we decided to step in and give her medication to help her body do what it should be doing naturally, i.e. producing melatonin, the sleep hormone we all produce to send us into sleepy land.  It mostly worked well but there were times when she would wake during the night and giggle hysterically.  At first we thought she had been dreaming and we found it quite amusing – what amazing dreams she must be having!  But it didn’t take long to realise that she wasn’t in a very happy place during these giggling fits.  And even though we tried different tactics, we just couldn’t get her to stop laughing or to engage with us.  She also couldn’t keep still, and fidgeted constantly.

She had one of these full on giggling fits last night – and it lasted about 4 hours.  Probably the longest one yet.

So, during those 4 hours of what I can only describe as desperation, I had the most overwhelming feeling of fear that has thrown me off balance today – and has resulted in me writing this post.

Fear of how her mind will develop; if her sensory issues will overwhelm her and prevent her from living a happy life; who’ll look after her when I’m not around; who’ll understand her and her needs; where she’ll live; if she’ll have friendships; if she’ll be able to be involved in choosing how she lives her life.  You get the picture.  All the questions about her future I normally push away as soon as they threaten to make an appearance, were right there in neon lights in the early hours of this morning.

Now that its daylight, and Tilly is herself again, those questions are easier to block out.  But it does leave me wondering if I should be starting to address them now.  You know, plan for her future.

I’ve been thinking about it all morning and the only answer I can come up with is “how the hell would I do that?” What she does developmentally from one month to the next changes so how can we plan for her future? We don’t know what she’ll be capable of doing.  She surprises me all the time – sometimes in a negative way, but more often than not, she does it in a positive way.

No, I’m going to try to write last night off as another blip on her horizon that created a whirlwind of madness in my own, sleep deprived mind.

And instead I’m going to get my positive and productive hat back on to address the immediate concerns – what is causing her to have those giggling fits in the first place?  Is it related to constipation, or is it neurological?

Time to do what I do best and research.  Not sit here and worry about the future.  The life we’re living today is too precious for that.

Tilly’s too precious for that.


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