The Summer Holidays Are a Whole Different Ball Game as a Disabled Parent

We are now in week two of the long, oh so very long, summer holidays. Most parents are either tearing their hair out wondering how to entertain their little terrors (this only becomes a phenomenon in the holidays and weekends, they are perfectly normal human beings at school) or perfectly planning a strict timetable of activities to keep their little angels entertained.

As a disabled parent, the school holidays are a whole different ball game. It takes an army of people to care for my children. Every moment I get with them is planned to precision to take into account my extra needs.

Each week my in-laws spend four days very kindly taking my children out to various locations to let them burn off some energy and spend some quality time with them. Once a week, my dad makes a laborious four-hour round trip to come and help out. They all go far above and beyond their duties as grandparents and we couldn't cope without them. I also have fantastic friends who arrange play dates so I can be with the kids with support from them.

Without all these people in our lives, we wouldn’t be able to survive. I can’t work due to my many disabilities so a holiday club is out of the question. It’s just not affordable when you aren’t working, to have two children in childcare when they are school aged. Juggling the kids is a military operation. Diaries out, who can do what day?

I would give anything to be able to keep my kids at home or take them out by myself. I can’t look after myself without two carers to help me so it’s just not possible for that to happen. I look longingly at pictures of friends on days out and wish I could do the same. It’s hard for the kids too. They adore their grandparents but it’s not the same as being with mum. I can’t even go with them because I get too tired and ill which can quickly become a life threatening situation. My body lets me down and my children too.

Thankfully my husband is able to get two weeks off and we get to have some time together as a family. That is the highlight of the summer break for me. Time where I can pretend to be a normal mum and get fed up with my kids fighting. I feel these days with my children are slipping through my fingers like sand. Every day is a day of their childhood I have lost. The summer holidays brings this home even more. My 12-year-old son’s Christmas wish last year was for me to get better so I could spend some more time with him. It broke my heart.

I push myself as hard as I can, to physically be with them more, with help from other people of course. If only I could wave a magic wand and be back to the mum I was three and a half years ago. My youngest can barely remember me like that. Summer holidays can be the best and worst of times.

Don’t take for granted the time you do get to spend with your children. I know they are a pain most days. All kids are—just remember those who can’t and who wish they could be tearing their hair out too. I look back on photos of summer holidays gone by and the never ending days wishing it was nearly bedtime. Now I’d happily go through that again. I’d still feel the same but at least it would be me getting fed up of them!

Life with a disability is tough. Everyone knows that. It’s the milestones you miss out on that are the hardest though. In a blink of an eye, there won’t be any more summer holidays left but I hope more than anything that I can be back to being a proper mum again before that happens.