So, as my life has been learning to deal with the loss of Steve, in every aspect… daily mundane conversations, weekly plans, what are we having for dinner… blah blah blah. Since all our kids have flown the coop, and Steve isn’t here, it’s all totally on my plate to deal with my special needs daughter who is 37 years old .
And I’m good with that.
Steve never was selfish enough to ask me to put her in a group home so we could have more freedom and less challenges than other couples who were in our age bracket but not in our situation. Maybe there was a divine plan in action so that I would truly never be alone.
After Steve passed, I decided to get my affairs in order and finally apply to be her legal guardian. Great under the law but more paperwork for me.
So I approached her dad about this and he immediately signed off. “I can’t take her.” And that was his personal decision. I wasn’t asking him to.
And all that I can say is no one knows her better than her sister or me.
She’s not a handful, at least to me. But if someone new was thrown into her life, not having any experience in being a caretaker of someone with special needs, it could be a challenge. If you’ve ever had a two or three year old, in some respects, that’s what I deal with. But her cognitive levels are all over the charts. She’s smart, sometimes sneaky. She has echolalia, which means she pretty much just repeats or “parrots” what she hears, so sometimes it can be difficult to understand her needs and wants. But as long as she’s in her routine, she’s good – she’s always a pleasure.
I’m starting to take her out into the community more. In the past, she went to a day program so Steve and I had our breaks. But I also worked full time even after Steve had retired. So, he dealt with most of her care to make my life “easier.” He would cook her meals, give her baths, and tuck her into bed if I had to work nights. He’d get her dressed, give her breakfast, and send her off on the bus to her day care if I had to work mornings. There aren’t a lot of people who would embrace this situation, but Steve did. My kids were his kids.
Now that he’s gone, she’s my go-to for some outings. So far, they have been successful. You have to understand, she likes and needs her creature comforts. Don’t we all? I just have to be prepared knowing that my plan may not work out. So far, now that I’m easing my way out into the world again, we’ve been to Niagara Falls and to a local hamburger festival. Both were wins!
I’m contemplating a short beach trip next year and probably another festival locally.
You have to understand the beauty in this – as I get accustomed to my new life, I thought we could journey together. She’s my new partner in crime.
Easing, easing back into a life… outside my house… outside my comfort zone… outside not having Steve with me. I know he’s here and is still taking care of me. He’s helping me ease back out into the world.