Juggling with Sharp Objects

I swear, you couldn’t make this up. Life as a working parent is difficult enough, pushing your organisational capabilities to their absolute limit (and beyond), but add in a good dose of medical complexity, hospital appointments, special needs and battles for funding and it feels like the title says – juggling with sharp objects. And fire. With the occasional grenade chucked in for added excitement.

Today’s stress? A three month review of the Dude’s continuing healthcare care support. Six months after it was put in place, this is the THIRD attempt at scheduling this meeting and it is now urgent that everyone involved gets to sit down and review his current provision. The positives are that it has been nothing short of life-changing for him (and us), enabling him to access the school curriculum and to have his medical needs managed safely so he can have a life as close to normal as we can make it for him.

The issues that remain all revolve around my imminent return to work – rearranging care hours, arranging transport provision… so significant things.

It is never an easy task trying to schedule a meeting with so many different people from different professional areas spanning education, health/medical and social care. The first attempt was cancelled 10 minutes before it started as someone was ill. The second? Well that was the Dude being overly exciting at school and ending up requiring an ambulance and no fewer than THREE paramedics attending to him.. plus several school staff and his mother (who was probably a little too calm, given the situation).

So today was attempt number three.. you can probably imagine therefore, dear reader, that I was less than thrilled to discover that my email (containing the link to the meeting) was unavailable and would be for several hours due to a major fault. Cue mildly hysterical laughter. Multiple text messages and phone calls followed to discover that the meeting had taken place AN HOUR EARLIER.

Apparently, the information in the link was incorrect. Who knew?

As I sit here with a coffee debating the merits of just going back to bed and ignoring the piles of dishes and laundry, I have to laugh. After all it may be irritating, stressful and a right headache at times, but I can’t help being incredibly thankful that we have this support in the first place.

It took many years to get continuing care support for our boy and it has been amazing. So, I shall calmly await the follow up phone call and get back to all the special needs admin that is currently requiring my attention. The dishes will have to wait a bit longer.