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Special Needs Parenting: A Date with Ourselves

Special Needs Parenting: A Date with Ourselves

Quite unexpectedly a message appeared on my calendar app, inviting me to accompany a certain man of my acquaintance to a theme park. I clicked ‘confirm’, and the date has been duly logged on my phone.

I’m nervous. I hate heights. I hate being spun round and turned upside down. A theme park is going to push me right outside my comfort zone. But I don’t want to be a kill-joy. I’m not too worried, though.

You see, the man I am going on this date with is my husband of nearly twenty years.

He’s seen me at my worst and at my best.

He’ll know if I really can’t handle something, and won’t try to force me into it. It was exciting to get the sudden invite to do a thing more usually associated with being young, or a courting couple.

We didn’t know each other as teenagers. By the time we met, in our mid-twenties, we had already taken our places in the sensible adult world; life was all about being responsible and setting ourselves up for the future. A future we couldn’t see. It never crossed our minds that disability and ‘special needs’ would be part of the picture.

We are more responsible now than we ever imagined we would have to be. When Freddie was born, Daddy was studying for a degree as well as working full-time. I was responsible for the majority of Freddie’s care, all the medical and therapy appointments, and our two other children.

We came to terms with Freddie’s diagnosis whilst also juggling a house move, the threat of redundancy and the additional needs of one of our older children. It frayed the bond between us to breaking point.

We were becoming strangers to one another.

We shared a house, and children, but nothing else. The tremendous external pressures on our marriage almost had us beat. Then we started to fight back. It began with a new bathroom. The bath looked huge. We speculated that it might even be big enough to hold both of us at one end.

Once Freddie was in bed we decided to find out.

It felt a little ... mischievous ... locking the door, filling the tub (with the plastic cover still on) and hopping in, trying not to splash the bare plaster wall.

Daddy put some music on, on his phone: stuff from the eighties, when we would’ve been in High School. Although we didn’t know each other then we listened to the same music.

We got talking about that. Then the conversation rolled on to something else ... then something else ... then something else ... until we noticed that the water had become cold and soupy.

It was like when you go on a date, and by the end of the evening it feels like you’ve known each other for years.

Except that we really have.

I don’t remember what we said, but I do remember the feeling – that neither of us wants to be single, neither of us wants to be separated from our children, and neither of us wants to throw away twenty-odd years of mutual history.

We are each other’s best chance of a happy future.

We can’t turn back the clock and start again from the beginning. But we can revisit our younger selves, remember who we were, and get to know each other again, as we are now.

Hopefully we’ll both like what we find.

Firefly Blog

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Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

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