Andrea and Ben

A day in the life of Andrea… (transcript of video)

The highs of the day are just seeing Ben happy and being able to go to school and join in with other kids.

Ben has these phases where he doesn’t sleep well and that could be due to the muscle spasms in his legs or sometimes he’s wired, it’s like he just can’t settle himself so he can be awake until two or three o’clock in the morning and if little James wakes up as well I have to get up also. So hence I might have a few dark rings under the eyes. So yeah, sometimes you feel a little bit dangerously tired because you’ve been up all night but you have to just keep trucking on, keep going.

In the mornings I always wake up earlier than the other kids, so I make sure I have a shower first because that makes me feel alive for the day. The other kids are pretty independent – Mya gets herself organized and just with a little bit of verbal assistance, but little James he’s right beside me and I’m multi-tasking at all times.

Eating at breakfast time is not a time for Ben he feels motivated to eat, I think he’s still waking up. So it takes a lot of time and that’s frustrating when you’re watching the clock and wanting to get out that door, and trying to do things for the other kids because I have to stop and sit down and take time to feed him.

I’ve got to get into the bathroom and put the paste on, brush his teeth, wipe his face, he holds all the bubbles in his mouth and spits it out and I think he’s all clean and raring to go for school and no, there’s more white stuff foaming out. So yeah, it would be good to have that magic fairy again to get ‘em dressed, get ‘em fed and out the door.

Once he’s at school I just do all the phone calls of following up about his therapy needs, meet with people, discuss what’s happening for his communication system, order his milk, perhaps arrange a doctor’s appointment. Yeah, I feel like his P.A actually, I’m just managing for him what’s within his day, plus considering two other children.

The water is one of his pleasures in life, it gives him that sense of freedom. Usually we have a shower and I do that every second day because that’s just physically exhausting for me, so the shower takes quite a bit of time because there’s a lot of transferring into equipment and using the wet area shower.

Sometimes the physical exhaustion makes you a bit of an emotional wreck because you’re so tired and had such a big day that sometimes you feel like you want to cry. When your body’s run down, your emotions get run down and you’re just had it.