Chronic Pain doesn’t mean no more family fun it just means……….

……………………a new kind of family fun for me! My own upbringing meant that for much of my childhood I didn’t have a father so my mum had the hardest job of all, playing both parents and hats off to her and all the single parents out there I never felt like I was missing out and I was happy. It meant I never grew up with the gender defined stereotypical roles of a parent and that when my wife and I were making the decision of whole was going to be the primary carer for our LG it did not seem odd that I was going to be the part time worker, it suited my disability and and our needs as parents.I knew I just wanted to be there to support our family and make growing and learning fun for our LG.

What we couldn’t factor in was my disability progressing at the rate it did when our LG was nearly 2. I have found the last 14 months incredibly difficult because I have not been able to do so many things that in my head I thought I should be doing, that I wasn’t making my LG’s life fun as she was having to care for me from a very young age and she was having to grow up too quick. Play has to be paced and interspersed with relaxing time for me and I often have to say no. What I have been learning of late though is that I don’t make my LG’s life less fun it’s just we have different fun to what I had anticipated. So many people tell me how lovely and grounded and caring she is, and that I guess in part comes from caring from me.

I have felt really guilty about how much time I have had to spend away from her and my long term goal is to work towards being able to care for her again on my own which is why the increased loss of mobility and function and all the issues surrounding my disability have meant I have swallowed my pride and asked for help from every possible angle I can think of, I am not too proud or stubborn to ask for help anymore, I am willing to try out all mobility and aids offered to me and I hope my famiends can start to benefit from me using them with improved moved. One thing I have been doing is looking at alternative ways of playing with her. Instead of me getting down to her level and on the floor she comes up to my level or uses tables/foot stools etc to play on. We do arts and crafts at the dining table in short periods with rest inbetween, we play in the hot tub and I do what I can.

I try to make her learning what to do in the event of me falling over and hurting myself fun, so we role play Fireman Sam and being Nurse Flood or Doc McStuffins and things like that. I push her in her swing from my wheelchair and we make adjustments.


Despite all this I still have pangs of guilt about her missing out (although thinking about it, it is probably me that misses out but that’s a-whole-nother session with Dr B. Tonight though all that guilt for 5 minutes evaporated the world stood still and I watched my LG sit with the biggest grin on her face ever. Last night I did a Portable North Pole online message from Father Christmas for her, now if any of you have done this for your children you will know how relatively simple it is to do and the reward you get is amazing. Now for a spoonie full of a days worth of pain meds this was not an easy thing. First off the web browser I was using was not compatible, it clearly stated this but I missed it and spent 30 minutes getting frustrated and angry at myself. Once I’d realised this I spent another hour and a half putting together her story. It really probably should have taken 20 minutes tops but one of the things nobody ever warns you about having chronic pain is how everything right down to going to the bathroom takes 2-3 x longer than before. I persevered and I finally finished everything and my wife and I watched the finished message. This evening we connected the laptop to the smart TV and we told our LG how clever Father Christmas was and that he had emailed me to say to do this before her bedtime and I wondered how he even had my email, she said it was probably one of his elves or fairies. We then hit play on the message and for the next 5 minutes our LG was transfixed with a big smile on her face. She was amazed that he had a book with her name on it, that he knew she needed to work to sit at the dinner table like a big girl, that the toy she wanted was in the elves workshop. That he had pictures of her brother, mummy and daddy and that she found out she was currently on the Nice List. Finally seeing a picture of our house and car covered in snow convinced her that he knew where to bring her presents. I only wish I had videoed her reaction to it, no actually I don’t we as a world watch everything through a 3.5inch screen and I am pleased I got to see every smile and sit with her and my wife and enjoy every minute of it.

It really made struggling through the muddled mind the night before worth it, the 2 hours to get it right whilst laying on the sofa and watching her fun reaction today was amazing. I am not the dad I imagined I would be, but I do know I would give my life to save my family, I will always be there for her to talk to, whether it’s girly fights, boyfriends, periods and puberty or embarrass her with photos of to shout out her when she needs it. I also know I will make her childhood fun, full of wonder and excitement and as I adjust to my way of living I will ensure that our play adjusts too. The big hug tonight and the bond we have tells me I am doing something right, now just to be able to do a bit more in 2016 and that would be the best Christmas gift I could receive.

2 thoughts on “Chronic Pain doesn’t mean no more family fun it just means……….

  1. I think the biggest thing is when our image of what our roles are supposed to be are shattered and our determination to make different just as good or better than that lost image, is the best life lesson anyone can learn😄 Children need love and respect, care and nurturing, and someone to be there to cherish them for their triumphs and be solid for them with their losses. ❤️ Children are not given enough credit for their innate ability to adapt.

    Liked by 1 person

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