Sometimes we have a day which is lovely and we can cope we have good moments. Then we have days which are a daylight to bedtime fight and all anxiety with no calm or oxygen in between. Sunday was this kind of day. It was 4 trips to the park, pool and outside places, nothing worked. The bath, the shower, the yoghurt, the peppa pig, the phones, the trampoline, the kids pool, the tickling, the chasing….nothing worked. We were spent and trying to drive home with him kicking the chair, throwing shoes off, hitting and pulling off his seatbelt whilst driving, after a day of screaming meltdowns with no understanding of why or when or who or what causes them. Its not fair. What are all the other adults doing today? I’d do anything for a moment of silence, for a breath, for a heart that doesnt race or a mind not inadvertently flashing to a trauma memory or a disaster to come. One day we might have just the tiniest piece of our internal peace again. Even just a ten min space of everyone watching tv. Thats a real goal for us. Every minute is prepping, doing or cleaning up. Where did we come from to get here? We were a calm couple of adults working, living, loving and doing our best. Now this is everything we are. The bills still need to be paid.
They say it gets easier as the kids get older, I pray it does. I dont know how people go on. I thought the fight to keep him alive was traumatic and hard enough, now its a fight to save your family, your relationship, your sanity.
p.s dont forget you have to prepare for the future when you are old and cant care for your adult child anymore, also when you die. What happens then? Dont forget that. My brain has no off switch. Im so tired. Tired of being tired.
A Journey to Joy 