On days like today I find myself daydreaming about ‘normal’ family life.
On days like today I find myself asking questions like, ‘how different would family life be if we didn’t have children with additional needs..?’ and ‘how much better would we function if we slept like normal people do?’
I then find myself daydreaming about going out for meals and the boys actually copping with sitting at a table in a restaurant and then being able to order food without worrying about allergies or an extremely limited diet or having children who could cope in that environment! We would then sit around chatting and laughing and enjoying good food and each other’s company. However this just doesn’t work for us. Even at home Joel and I don’t sit down to eat together and we never all eat the same thing. Toby needs constant supervision and is often climbing about while we try to eat as he struggles to sit with the rest of us (or even sit at all!)
Today our Dietican has requested some powdered supplements that they only usually give to tube-fed children and that she was unsure if our GP would even perscibe (as it is so rare) for Toby with his extremely poor diet. This powder can be dissolved in his juice as he doesn’t eat anything that isn’t plain and dry and gets no fruit, vegetables or dairy and he would rather not eat than eat anything hot, wet or with any real flavour! His bloods are poor due to his diet and he’s very small for his age.
I also find myself day dreaming about having ‘normal’ evenings…Toby just doesn’t need as much sleep as the rest of the world and so we tend to put him to bed late so that we all get a better chunk of sleep. I daydream about putting him to bed at 7:30pm like most other five year olds and him sleeping through the night and Joel and I having the evening to ourself and relax or even going out and leaving him with a babysitter….
I also think about how ‘normal’ family life doesn’t revolve around hospital appointments, taxi pick up or how much of something the five year old can cope with. I imagine going to children’s parties and having play dates – two other things that just don’t work for us.
Maybe we could have a ‘normal’ house too without locks on all the rooms, we could have cushions that aren’t chewed and wouldn’t need to bother with toilet locks either. We also wouldn’t have curtain rails pulled down or radiators pulled off the wall…two other things that happen quite regularly.
However…the more I think about things and day dream about what our lives could be like, the more I realise that that isn’t the life for us. I believe that God made the boys how they are and although life can be challenging, we wouldn’t change it! We do have moments when we sit and we cry feeling totally overwhelmed by everything….but it’s in those moments that we find true strength…we find His strength in our weakness and we get up ready to face the challenges that a new day brings.
Anyway…we always said that we didn’t want a boring life…and it’s anything but! Maybe normality is overrated anyway…