Life with my two crazy boys is always full on & this week was no exception! Nothing out of the ordinary – just the usual appointments, phone calls, school runs & every day care that has become our “normal” but for some reason this week has felt crazier than ever so here’s the highs & lows of a week with two “different kind of normal” boys:
Monday: The week started slowly like most weeks – Monday morning is usually our time to catch up with everything after the chaos of the weekend. Zac has some weekly care that needs done for his tummy button so we make that a Monday morning job & we catch up with housework, look through the calendar & diaries and make sure we’re set up for the week ahead. Monday was fairly uneventful – just the usual daily physio, medicines, feeds and everyday routine that needs done.
Tuesday: School mornings are always a rush – Zac’s chest physio, meds, feeds then Caleb’s breakfast, uniform and we absolutely MUST leave the house at 8:40am. Leaving at the “wrong” time results in Caleb’s whole day being “wrong” so now at 8:39am we drop everything, there is no talking and we watch the clock until it turns 8:40am and we leave for school. School run done and time to prepare for hospital appointment. We head to Glasgow for Zac’s respiratory review and all goes well. We make it home for tea time and I’m just in the door when I have a phone call from psychology to discuss strategies surrounding food & sensory issues. There is a big pile of ironing sitting in a basket but I decide once the boys are in bed that “bake off” is a more worthy Tuesday night task.
Wednesday: This is the day I go to “real work” although I feel I’ve already done a full shift at home by the time I even get to “real work”. These days out of the house are supposed to keep me in the real world, keep me sane and give me another purpose – the reality is the only thing I can focus on on Wednesdays is making it through my “real day”, trying to do an okay job & I usually just feel exhausted after being on my feet all day. I get home, quickly have dinner then it’s time to start the bedtime routine for the boys.
Thursday: I have a meeting with complex care & social work and despite me feeling very anxious about home care 6 months ago, I now find myself requesting additional hours of care & some weekend time. Part of me still feels guilty about this but the other part of me needs the time out – I guess this is a dilemma I will always face. Meeting over, schools out & my grandparents come to visit. Then the “hurricane” hits and I’m right in the middle of an aspergers melt down. It could be something different has happened in school, the excitement of family visiting, the snack wasn’t right, the noise level…….. there are endless possibilities but we’ve gone too far to try and reason it out and my job now is to try and calm the storm. We’re past the point of our normal cool down technique so now I just have to let him safely scream, punch & run it out. The window cleaner turns up at this point & I’m very aware I must look like an awful mum – one of my boys is in his pants screaming the place down while the other is wizzing around in his wheelchair & I’m standing somewhere in between the two waiting for this melt down to calm. The normality of the tea time routine finally brings the melt down to an end but by this time we’re running behind & the hubster returns from work to me saying “please let’s just get to 7pm with no hassle”. A glass of wine was poured at 8pm!
Friday: It’s a new day and all is okay with the world again. We have a morning physio session with Zac where we decide with the physio’s advice to scrap Zac’s stander and we have some new things to add to our daily routine instead. Zac is pretty tired after all the work out so he has a chilled afternoon with a few movies, I finally do the pile of ironing that has multiplied since Tuesday and me & Craig get an hour to ourselves when Zac’s home care arrives. My amazing parents then take Caleb for a sleepover so it’s a quiet night with the tv.
Saturday: With our big boy having the day with nana & popo we decide it will be easy to face the Saturday shops with just the wee one. Big mistake – it turns out none of my boys are great with shops and after setting up wheelchair & feeds we don’t get very far before there’s tantrums from Zac!! After a few hours of trying to pacify our three year old we leave the shops having only purchased a bat man toy car and a pumpkin spiced Frappuccino. Zac falls asleep on the drive home and me & Craig sit in the drive way for 10 mins – one boy with the grandparents & one asleep – winning at parenting!!
Sunday: Well we’ve made it to the end of the week and yep it’s been a crazy, exhausting week – all of this craziness goes on as well as all the normal stuff – washing, ironing, cooking, working, homework, house work, shopping…….. but this is our life & it wouldn’t be ours if it wasn’t crazy! Our life is filled with challenges & crazy happenings so I’m ready to face the next week & let’s see what our “different kind of normal” brings!!