Sometimes you just have to love your way through.
My son is 16. He is semi-verbal on the autism spectrum. He was diagnosed as severe. Sometimes he can speak a little. Sometimes he can’t. Sometimes he has good days. Sometimes he does not. There are hopeful moments. Like this year he is starting to trace letters for the first time ever! A huge milestone. We celebrate those achievements.
Once in a while, I send him messages from my phone and he sends me a sweet word back. Other times there’s silence. We are grateful for the times he has some language.
Sometimes it’s hard, like really hard, the hardest of hards and it hurts my heart and makes it so heavy. I worry for the future when we’re gone. Who will take over? Who will love him as much as I do but be able to bear this all too? Sometimes it’s confusing. Like when he cries and we don’t know why. Is he in pain? Is he sick? Is he just sad? He can’t tell us. We just guess and love our way through it all.
Sometimes he seems so capable and we’re like, ‘We got this! It’s not so hard after all!’ Then he has regressions. We watch as he slowly loses a skill that he worked so incredibly hard at. It just slips away. Sometimes it comes back. Other times we have to start from square one.
We change bedding almost every day. Sometimes, we need to change clothes during the day too. Sixteen years in. You can’t really call it ‘potty training’ anymore can you? It’s not about the laundry. It’s the setbacks after working so hard to overcome obstacles and difficulties. It’s feeling like you finally made it out of the baby stages only to go back again. It’s the regressions without explanations or reasons. It’s the constant ‘why’ without answers. It’s the starting over again and again. It’s going backward when everyone else seems to be going forward. Sometimes it’s everything at once. Beautiful, heartbreaking, hard work, celebrations, hitting milestones, regressions, starting over. It’s a constant roller coaster of emotions. But the one constant that will never change is our enormous love. A love so strong it carries us through.