Today is a day.
Some things, you’ll never be prepared for.
Nobody can provide words – that can remotely prepare you for this stuff.
And I will never be able to put into words or explain the full scope of how the/a diagnosis is NOT the hardest part. It’s actually the easiest part.
The hardest parts – are the getting help, it’s having people understand your kid, it’s having to deal with looks in stores or restaurants and comments like “we thought this would be a relaxing breakfast” and wanting to say “he’s not just a brat” as you carry him to the car while your family continues eating without you. It’s sitting in the car with him while he cries because he wants to go back in, but doesn’t understand he can’t because his “normal” is apparently “insulting” and “bothersome” to others. It’s having to FIGHT for people not to underestimate you or your efforts or your tears or your strength or abilities….. Your sleepless nights wondering if you’re doing the right thing. It’s the fact that your kid NEVER kisses you or hugs you no matter how hard you try and settling for kissing him on the head each night, saying ‘I love you’ knowing it won’t be said back, but hoping one day he’ll just come say “I love you” and offer a kiss. It’s the phone calls and the total meltdowns on the phone with teachers and the regret you lost your cool because you want to always display strength. How dare these situations show your weakness. It’s the anger – the frustration.
It’s the pure torture of meal time – or lack there of, because your kid is so sensory sensitive that it seems like eating meals or having a crumb on the high chair or spilt milk literally pains him. It’s the rushing to make it right and having such stress and anxiety surrounding meal time because you know the simple process of eating food is in fact torture to him on Most days.
It’s the “behind the scenes” hell of having people who THINK they know your kid tell you what you should or shouldn’t do, or what your kid is or is not……
It’s the defensive speech you already have planned in your head ready to spew in case some insults come directed to you or your kid. Or someone tells you “he doesn’t look Autistic” or “he can’t be because he talks” that you don’t even spew that speech because in the moment those words and come backs you’ve carefully prepared for hours gets lost in that pain which is in the pit of your stomach that only makes you want to run away and hide.
Nothing can prepare you for this. Nothing can ever give perspective of the exhausting mind battle you fight every minute of a 24 hour day.
Nothing can prepare you for the fact that you want to SCREAM to people “DO YOU THINK I WOULD CHOOSE TO LIVE THIS WAY?!” The sleepless nights, the physical battles, the emotional battles, the ‘what ifs’ the ‘what did I do wrongs’ the total fear of the unexpected every day and will it ever get better?
Yet, in the quiet moments, nothing will prepare you for the simple and fierce love you develop for that child. That child that takes so much out of you. That child, that you have to love so deeply because in all honestly, the daily battles don’t make the love come easy.
Nothing can prepare you for the passionate person you must become for your kids and the fact that through it all – you, honest to God don’t know how you would survive any other way – because you know deep down – God picked you for these kids knowing You could handle it.
A crappy CRAPPY day today, and despite so many moments and days just as bad if not worse – Today is a day, just like every other – nobody could have prepared me for.