Seems it's a life of ironies these days. The recent holiday slowed our pace, provided us a temporary change of venue--my sister's home in South Carolina--and a chance to reflect more deeply. One night I looked over at the sweet young woman-child in the twin bed next to mine. Irony. Almost a woman. Still a child.
She's talking more. Asserting her teenage sense of self. Yet, she wet her bed three times while we were there. She tantrummed several times. Unable to tell us the source of her misery. Once it was water too hot in the shower. Another time hunger. Another time tummy ache. At least this is what we deduced from her loud, demonstrative upsets. The noise, the flailing, successfully gained our attention when her brain's ability to produce words yet again failed.
It is a life of ironies in that in some ways as she approaches the magical number of 18 years in age, that I feel some tiny sense of breakthrough freedom. And yet, I feel a lack of it simultaneously. I continue to miss frequent events because the list of sitters turns up nothing so that I must remain home as my *17-year-old's guardian. Soon, I will declare legal guardianship of her because she incapable of deciding her medical fate should harm befall her. Irony that though the number usually means departure and greater freedom, the signs in the skies of my future--like so many parents of more severely special needs children--is a number signifying lesser sense of move-about.
At this reality, I try to breathe. I talk to other parents. I keep looking for creative options, vacillating between hope and believing, knowing on some deep level that it will work out, but also not knowing how. Irony....Divine Mystery.
It is not fair. Can I say that? Life, yes, I know, is not fair. Yes, I know. I know it is about how I choose to live it, hold it, look at it. But there's got to be some give and take. We special needs parents do more than our share of giving. No, I don't mean giving in whiny-poor-me here. I mean giving with so little hope from the systems created to "serve" us. Many are the same systems, that...irony...promised us that through early intervention our futures would be so bright.
"The sky is the Limit!" they crowed when Grace was diagnosed at the early age of nearly three back in 1997. Now the ideal age of diagnosis is before two. Irony.
Now where are the systems that intervened early? Now that we are later in our age and being served lesser and lesser?
*This post was written during the Thanksgiving holidays. Grace turned 18 in June and as of late July, her father and I, from whom I am divorced, now have co-conservatorship, which is the legal term used for guardianship in Tennessee.
Photo: ©LeisaHammett.com, "A Ride at the Fair"