The Lonely Hours. 

Having a child with Special Needs can be extremely isolating. Often I feel as if we’re in a different time zone to the rest of the world and that our lives look very different to those around us. 

We don’t do a lot of things that ‘normal’ (whatever that means) families do because of Toby’s needs. Days out with other families, birthday parties and meals out etc can be very challenging as Toby doesn’t cope. If I’m honest, I sometimes feel as if we’re missing out on friendships and social events and all just because Toby struggles with people…however we struggle without them.

Early mornings are lonely too. Joel and I take it in turns to get up with Toby. It’s not only lonely at the time (being up 2-4hours before everyone else) but often I feel as if I’m in a bit of a daze for the rest of the day and then end up needing to be in bed by 8pm which again isolates us even further from the rest of the world.

I’m currently laid on the sofa, wrapped in a duvet and Toby is sat bouncing up and down on top of my stomach, listening to the same song over and over again on his iPad and clapping…and he has been since 4:45am.

However I am thankful. I’m not naturally thankful and if I’m honest I would far rather be tucked up in bed fast asleep like the rest of the world, but I’m choosing to be thankful. Thankfulness is a choice.

I’m thankful for my Toby, I’m thankful that he is fit and healthy, I’m thankful for a 4:45 wake up call…it’s much better than 3am on Saturday…I’m thankful for Toby’s enjoyment and excitement, I’m thankful for a warm house, sleeping husband and toddler upstairs, my duvet, working wifi etc!

I’m thankful for a God who is with me in these moments and understands both Toby and I. I’m thankful that he’s around at 3am when no one else is and that he has the energy and grace I need to face each day. I’m thankful that he gave us Toby and that he wants what’s best for us all. I’m thankful that I am never really alone in the lonely hours.

I read this in the Bible this morning –

Don’t panic. I’m with you.

There’s no need to fear for I’m your God.

I’ll give you strength. I’ll help you.

I’ll hold you steady, keep a firm grip on you.

Isaiah 41v10 (The Message)



3 thoughts on “The Lonely Hours. 

  1. I am praying for you in the background. Having brought up a child with different special needs I empathise immensely. Where would we be without God? I know I couldn’t have coped. Just when I felt I could do no more God stepped in with some form of respite. Reading your blog brings it all back and it makes me pray harder for you and your family. All the tears, frustration, loneliness, and sense of not being understood by “normal” families, being told that I was pandering to a “spoilt” child , helps me feel some of what you are going through. You are not alone in the emotional and spiritual sense and you will get through as I did. Take time out for yourself and your husband when you can. X

  2. Hi Rachel, I have just found your blog via the additional needs alliance group, so glad I did! I am also a mum of children with ASD (2 girls) – & have also just started blogging abt sharing faith in our family life (clearlynurturing.wordpress) Believe it or not I used the same bible verse this week on my blog… Love the message wording of it.
    I can really relate to the loneliness of the hours when it feels like everyone else is asleep… For us it is often staying up late in to the night settling them, then in the night resettling them! It’s hard. Thanks for the reminder to be intentional about thankfulness…

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