Yesterday a link on Facebook caught my eye and I couldn’t help but click and read ‘Do you know how exhausting special needs parenting is?’ – kind of sums up how I feel a lot of the time but it wasn’t until I got to the end that I realised why.
There was a fact (true or not?) along the lines of ‘special needs parents experience the same level of stress as a combat soldier’ which really resonated with me. It’s the stress that’s the killer.
Toby demonstrated this superbly yesterday afternoon as he started to have partial seizures around 3pm which built and built and built until he was shaking like he has Parkinson’s and was barely able to sit up unaided.
This is a killer for us as it’s often a sign he’s going to have a full, big seizure but we don’t know when. All we can do is sit and watch him deteriorate in front of me. Eventually it was so bad we agreed to administer one of his rescue medications, midazolam, which is a muscle and brain relaxant to try and calm him down. After an hour or so it worked (it should only take seconds to get to his brain but he’s almost immune to it) and he relaxed and was less shaky and we were able to put him to bed.
We never know when Toby might have a seizure and since the trip to Intensive Care we’re on heightened alert for the next big one, because it will happen again. The fear is paralysing, we’ll often stay at home, scared to be out in case a seizure strikes while we’re out of our comfort zone. We deliberately don’t arrange many things so we don’t have to cancel them and we’re always thinking one step ahead…’What if…’
Classic example of this is our bed time routine, when we get undressed ready for bed we always fold all of our clothes onto the floor next to the bed as we’re never sure when you need to be fully dressed in a matter of seconds as paramedics are en route and you’re doing lots of things at once.
When we’re somewhere new or different we always have to plan ‘what if he has a seizure here?’ so that if it does happen we can deal with it as effectively as possible. I know a lot of people have seizures and they just happen but as Toby often stops breathing it’s so important to get to him quickly, resuscitate and administer oxygen. Not easy when you’re in a car, on the motorway, hence it’s really important to plan. Whilst this helps us deal with the unknown it means we have to think about the ‘what if’ all the time, there’s no break from it.
And this level of awareness never stops, at night if we hear something on the monitor we’re both awake quickly (Kim more than me but that’s biology!) or if we have someone looking after Toby while I’m at home working I always have an ear cocked to listen in to what is, or might happen. It’s 24-7 and the only time it ever stops is when we’re at Helen House as we know they have the expertise to recognise the signs and deal with the seizures.
So yes, I always feel tired, as does every other parent, I’ll never complain about that.
It’s the constant stress due to vigilance and possible outcomes that are the killer for parents of complex children, they may be smiling at you but in their mind they are assessing the situation and thinking ‘what if?’
Toby’s had a chest infection for the last week now, which is never a good thing for him, despite Kim looking after him for most of time just being in the house and knowing how poorly he is constantly makes me think ‘what if?’ and it’s draining. I feel very flat today, there’s no emotional energy within me at all as the stress takes it all away. This then impacts on Kim as she picks up on my dark mood. I know it will pass but it takes time, there isn’t a quick fix and in the meantime I try not to impact too many people.
With luck Toby will have a good day or two and it will lighten my mood, if he’s not shaking away it’s easier to forget his condition and enjoy being with him….but always in the back of my mind will be ‘what if?’