Elephant in the Room
- Aidan actually cries all the time if he’s not receiving 100% of our attention. I can sing to him while I do dishes but that is less than 100%. He cries. The only person who can fully understand or perhaps believe me is my husband. That is because Aidan won’t cry if anyone is visiting and he only cries at home. This is like living with a colicky baby for 9 years. I can’t begin to list the mental health ramifications of that one. So to deal with it, we go out when possible or Aidan can nap.
- It’s physically draining. Aidan requires assistance for everything from getting dressed, eating, bathing to walking and getting into our van. That wears on my body. The right answer to dealing with it is to know my limits and ask for help. However, the truth is, I just muscle through because there really is no other choice. Everything I do physically for Aidan at home requires two people at school. This is appropriate as the school is responsible for the safety of their staff. And I do it in heals…with grace. Wait, I got a little carried away. I never wear heals and tend to grunt or gripe when I lift.
- It’s emotionally draining. We need to think about accessibility whenever we go anywhere. Right now Aidan’s wheelchair can handle the beach, but what do we do when that is no longer possible? We never think about the future because it’s totally overwhelming. I’ve been told there’s a black hole of services when he finishes school. I can spend hours on the phone with insurance or medical supply people because someone somewhere did not cross a t or dot an i and I have to fix it. Ugh. It can be emotionally isolating. Not everyone can talk IEP, AFO, DME or “get it” on the most visceral level. Dealing with it? Well, every now and again I dip my toe into the pity pool (cry, wish my life were different, say really unreasonable things) without ever taking a swim. I refuse to sugar coat this life or pretend to be a superhero. Mostly, I stay focused on the positive, which is what I hope you’ll find in the rest of this blog.
And Oded, send the therapy bill whenever. This was good.