Something lovely happened yesterday that also broke my heart into tiny pieces.
The Teenager had arranged to go out biking with his friends in the morning. That was great – he’s an outdoorsy kid and I’d much rather he was out than stuck in his bedroom in front of the computer screen. He phoned me early afternoon to tell me excitedly he’d been invited to the beach by some of his friends and their parents.
When I got home, he was in the middle of packing his swimming costume, a towel and some money, bouncing around, beaming from ear to ear. I waved him off, sat at the kitchen table and cried.
Why? MS. Extreme heat intolerance means I will never be able to take him to the beach in the summer. I can’t take him anywhere in this weather. Add constant fatigue on top and I’m a pretty useless parent now. I’m only glad we did a lot together when he was younger, before MS reared it’s ugly head.
I’m trying to stay positive. The flipside to my new working hours is that I am always at home after school. He might only want to say a few words/grunts before raiding the fridge, but I listen. I know all the dramas going on at school, I know what homework he needs to hand in and he knows I’m always there for him.
Finding a new way of parenting with MS has been one of the hardest challenges and one we are still working out together. Gone are the days we jumped in the car on a whim and headed off. Everything is meticulously planned now, with one eye on the weather forecast and energy levels.
Years ago I was told that when you give birth to a child, you also give birth to a lifetime of guilt. What you feed your child, which toys you buy, which school you send them to – all are guilt-laden. Throw in a hefty dose of MS and the guilt skyrockets. I’m failing as an active parent. I can only hope that when he looks back as an adult, my son will not remember the times I didn’t take him to the beach, but will instead feel secure in the knowledge that he was always, always the centre of my world.
I have these same feelings of inadequacy but in all honesty I really don’t think it will change our children’s view of us. Due to a hip problem following an accident I had already been hobbling around in pain on sticks for 7 or 8 years before ms came along. My children were under 10 when my disabilities started and I have found it upsetting not being able to do everything other mums can. But, what I can do is to ensure that I give my children the tools to be able to live their lives in a way that makes them happy. Memories of trips to the beach are great, but what about their future? Not all children are lucky enough to be nurtured by their mums, and that is the best gift a child can receive, the material stuff is soon forgotten.
Having said that I have really struggled to think of anywhere I can take my daughter this summer because my balance and strength have become pretty useless and decided the only thing to do was get a mobility scooter. Which I have and it is enabling me to get out, I’ll be able to take her to the zoo now which she is looking forward to. Would you be able to use a scooter? I feel it has given me a certain amount of freedom back for the time being.
For me it’s more the heat intolerance – it was one of my first symptoms and is pretty extreme. Might be even hotter on a scooter!
I like the way you put giving our children the tools for life and how to be happy.
I really hope that’s what I’m giving my son. That I’m always there for him.
I just don’t want him to grow up feeling left out I guess. That his mum is somehow different. But hey, diversity is good!
He’s turning into a lovely, compassionate young man. I’m hoping that continues!
Know exactly what you mean. When my wee lad wants me to run around in park with him, I struggle with that. Even theme park visits are tricky. Their dad is great but he works long hours so not always around when they want somebody to charge around with. We did play a sort of football/hockey kind of thing where I sat on the park bench, son lobs footballs at me from all angles and I bat them away with my upturned stick. Until a chunk of the handle flew past my face as I hit it too hard one time. Oops! We’ve got to stop feeling guilty though. They know we do as much as we can. There are always other options. Amazingly I am holding up really well in 30 degree heat at the moment. Now know I really wasn’t imagining the secondary effect of my new tablets.
That’s it – adapting to the new situation. Think it was just hard as I was always so active with my son – we went to loads of places and spent hours outside. The difference to now is quite shocking when I think about it.
Luckily he wants to spend less time with me and more time with his friends (in a good way!). Just can’t seem to shake off that guilty feeling though.
Hey dont beat yourself up I’ve done this so many times before, I was diagnosed shortly after my first born and the second has never known anything different, but one thing I dan say is neither kid has ever felt dissadvantaged, infact I asked them if they thought they had missed out on things because of my MS?
Their response was Mum the ammount of love and support you have given us over the years far outweigh a trip to the park. Keep doing what your doing and believe that what your doing is for the good of your son
I really, really hope my son feels that about me as he gets older – that’s amazing and a testimony to your parenting!
It’s a hard transition to make, but that’s probably the same for anyone?
Heat & ms kept me away from a camping/beach trip with family this weekend too. But hey, do I really miss camping? I had a lovely cool quiet day to myself and I don’t think somehow I was missed seen as they were with their mates.
That’s very true! Mind you, have just driven home and everyone seems to be having barbecues/family get togethers in gardens. There’s noooooo way I’ll be doing that today, lol.
I’m sure he will and I’m sure your love is unconditional for him like mine is for my two. There really is no love like a mother’s love and I bet he knows that 🙂
Thank you Sue, so lovely to read that today. All the comments have been so helpful!
I will keep on doing what I can, with the resources I have. And that’s the best I can do! He’s a fab kid, he deserves it!
This is a lovely post. Bittersweet. Hate that MS suddenly restricts us from interacting with loved ones the way we once did, but you are very wise to be looking at the bright side as well. I look back at my mother being home when I was a wee lass and am very happy she was. At the time, I sometimes might have wished she wasn’t so I could watch endless TV, but honestly, there was something comforting about knowing she was always there.
I know what you mean! I’m sure The Teenager would sometimes wish I wasn’t ‘here’ all the time, but hopefully when he looks back, he’ll be happy. We had a Mum ‘n’ Son meal out the other day which was lovely. Must try to do more of that. Special memories.