It’s only 5 days into 2018, and here I am writing about being in crisis. The hashtag about this on Twitter as of late is #carersincrisis and it says it all. But who is actually listening? More importantly, who amongst those listening will take any action to resolve the crisis?

I often write from a raw, unfiltered place, exposing my personal world at the risk of judgement and the subsequent ridicule or unsolicited advice to more devotedly follow Jesus or the comparisons of who has the worse lot in life. That’s not my reason for wearing my heart on my sleeve.  I do it for starters because that’s just who I am by nature, but I also do it on the off chance it will help others who walk a similar journey with me…that journey of caring for a child with a life-limiting illness. It is a journey unlike any you could fathom. Indeed, it is one you must actually be on to fully comprehend…and to have absolute compassion and empathy for those on it.

Last month, I knew I was near a breaking point. I was once again having panic attacks, had a breakout of shingles due to stress, and found myself crying far too much. I did what I knew I should do and I reached out for help from a respite provider’s psychologist. I was refused any additional respite nights because there were other families who were requesting the extra nights as well. Now I, of all people, can understand that fact. However, not providing emergency care for carers in crisis leaves those carers – like me – in a very vulnerable position. This is exactly why we have #carersincrisis.

And hear this:

When carers are in crisis, it cannot help but result in the loved ones they care for being put in a potentially less than optimal situation for the best care they require and deserve. (Read that line again)

Confession: Last night I discovered I had not reordered one of Brendan Bjorn’s seizure meds. As such, he only got a partial dose. This morning, his disability social worker is picking up the new bottle of medication from the pharmacy on her way out to see us. The amount of guilt I felt last night, and the resulting mental self-reprimanding I gave to myself, was noteworthy. I could list a dozen excuses about being stressed out, overworked, etc, etc, etc, but none of them are acceptable. I failed, full stop, and I am ashamed at my failure.

Today is day 73 of Brendan still being bedridden due to the terribly slowly healing pressure sore. 73 days and I am exhausted physically, mentally and in many ways, spiritually. My soul is tired and needs recharged in a way that only time away from caring can provide…but I can’t get it. I’ve had no in home respite nursing since July 2017 (I’m approved for only 10 hours per month, even so there is no staff to provide it). I do have 3 nights of respite coming up this month but it will be used moving my family to a different city, different county, and that, my dear reader, is more stressful than you can imagine when you have a highly medically complex disabled child’s care needs to transfer and re-establish! I won’t be recharging anything but my mobile phone.