It was my therapist who dared to say it to me for the first time. I had Maura with me during that session – cute little three year old Maura, being her happy self, wobbling about and probably sucking her thumb. My therapist looked at her, and said “You do realize she’s probably going to live with you for the rest of her life?”
I blinked. Then answered as matter-of-factly as she had stated the question. “Yes.”
And at that moment, I knew it was true. I didn’t feel despair. I didn’t feel grief. I didn’t feel anger. I don’t think I felt anything negative.
I know that sounds weird. “Why would you feel relived that your child was going to be too impaired to live independently?” one could ask.
The answer is that at that point in time, no one bothered to address the big polka dotted elephant of “she may not catch up” in the room. We all knew it was there. It was hard to miss it there. But instead of addressing the elephant of possibility, people tried to cover it up with blankets of “Hope!” and “Maybes!” and “Who Knows?” , and threw a lot of “Have you tried this?” at me as a distraction.
In the beginning, we were told that maybe Maura could catch up by kindergarten. That her delays were just that – delays. There was a time I got caught up with all the “You MUST try THIS!” hype thrown at parents of children with delays. I tried the supplements and special toys and therapies. The therapies did help a bit – but progress was still at a snails pace. Still I was told “Well, you need to do PECS!” and “What about sign language?” and “Have you tried this NEW therapy?”
Do you know how overwhelming it all is? Do you know what kind of blame and guilt a mother can put herself through because her child doesn’t catch up despite shoving fish oils down the child’s throat while watching “Signing Time” videos in hopes that they would produce words? Only to show up to evaluations and have little progress made?
I remember those days vaguely. At first, I spent too much money looking for the magic toy that would stimulate her brain just right so that something would spark within there. Then it was trying to find a label for her issues, so I could then find out how to fix them. And with that came the fights with insurance companies to pay for doctors or therapies – plus fighting with places to get the actual therapy.
It was frustrating, expensive and depressing. Which is how I ended up with my own therapist. Who one day said “Hey, there’s a big polka dotted elephant in the room – have you noticed?”
I had to admit, I knew the elephant was there. I just never wanted to look at it. Part of me wanted what everyone else kept saying to be true – keep the faith, keep doing all you can, and your child will be the one to beat the odds and become normal once again!
But once forced to look at the elephant…well…the elephant wasn’t that scary. The idea that Maura could live with us forever wasn’t either. Maura was a delightful child, who loved going places and trying new things. She was easy going and able enough. It wasn’t “ideal” – but I knew it could be worse. If I had to live a lifetime with a child, Maura was an ideal candidate.
Admitting all this was a bit of a relief. I could look something once unthinkable in the eye, confront it, and walk away unscathed. It wouldn’t be the only time I’d have to deal with Harsh Reality when it came to Maura.
It also meant that if she didn’t progress far enough between evaluations, that I hadn’t failed. We also didn’t feel the need to cram a thousand therapies into our lives. We could enjoy life, teach Maura at her pace and give the attention the other three children in the house needed.
It seems like though, that when I tell people Maura will live with us forever, I’m admitting to giving up on Hope. You MUST have Hope! Hope keeps you alive and moving forward!
Which is true. But Hope can also cause you to have your heart broken time and again.
If we had held on to the Hope that Maura would catch up by kindergarten or so, like we’d been told time and again, we would have been setting ourselves up for some intense heartbreak. Because not only did she not catch up by kindergarten, she was further behind than we’d ever dreamed that first year of therapies.
Maura started kindergarten with the mental age and capabilities of a two year old. She was not potty trained. She could not speak in sentences. She needed a full time aide to be with her, to do things like change her diaper, open her lunch containers and be by her side if she had a seizure. Maura starting kindergarten was traumatic enough for me – it brought me to tears a few times. I can’t even imagine how much more traumatic it would have been if I had held onto the Hope she’d have caught up by then.
All that said – I haven’t given up hope. I just don’t believe in the shiny happy feel good Hope! I am realistic about my daughter, but always optimistically realistic. We work with her to achieve as much independence as possibly while planning for her long term care. We challenge her to prove us and everyone else wrong, while realizing that in some instances, we’re right.
See, we can teach her things, and help her be more self-sufficient. But we can’t do anything about her maturity, or lack of. That portion is out of our control. In many ways, Maura has the independent streak of any 8 year old, coupled with the immaturity of a 3 year old.
There was a day a couple of summers ago, when Sean and Maura were out in the front yard. Sean had a long rope that he was twirling about. Maura – in true puppy form – started laughing and chasing the rope as Sean dragged it across the lawn. Josh watched them for a moment and said “Yeah, she’s going to live with us forever.”
And then we laughed. Because sometimes, all you can do is accept something with a laugh and make the best of it.
Which is what we have chosen to do.