Somewhere along the way in life, I became an optimist. Happy, sunny, shiny. Maybe it’s my romantic heart, maybe it’s my faith, maybe it’s just because I’m painfully aware of how charmed my life is.
That’s what makes this post all the harder to write.
Into this blessed life entered my two beautiful daughters. I prayed for girls, I got girls, and other than asking that Zoe not be born with Down syndrome, I forgot to pray for anything else for my kids.
Would it have mattered anyway?
And they are the light in my life. Sure, there are bad times. Aggression. Elopement. Bureaucratic bull crap. Failed therapies. Sleepless nights / zombie days. Nosy parents. Judgmental parents. Superior parents. Condescension from well-meaning people. Condescension from not-so-well-meaning people.
In the moment, though, none of that bothers me. I’m doing my best and while I know that if I were younger and more Type A, I’d be doing a helluva a lot more. But generally when I go to bed at night, I know I’ve done as much as I could do that day and on some days, a bit less.
It’s when I think about the future that I get the cold sweat. I know, as a Christian, these are not my kids, these are God’s kids, and He has them in hand, but part of the DNA of being a good parent is worry about their future. My optimism has hit an impasse here.
Their future doesn’t look good.
I’m pretty sure by now they will need services and support their whole lives. While alternative therapies are amazing and curative for some, for my kids they have given tiny life improvements and little more. Amelia still struggles with things she’s been missing since kindergarten. Zoe still struggles to control and communicate. I hope for more, hope I’ll stumble on something that works, but I can’t count on it.
A realist is born.
I want the best for them, but we have done a piss poor job of planning for their future. Money, confusion, lack of family, debt – it’s all contributed to this. It’s probably true they will end up in a home. I know exactly what that looks like – and it terrifies me. They will probably need state services all their life, along with a growing disabled population in a state that’s budgetarily strapped. I have no idea how on earth to help them have the future they deserve where they still tend to a restricted diet, remember to brush their teeth daily, properly dress and do hygiene, take care of medical and feminine issues, and so on and so on.
No idea.
This explains my temper, too. Lately, I haven’t been able to control it. My husband says, “What’s wrong with you?” And while I could sit here and convince him and myself that it’s the too many snow days or being couped up no car or lack of sunshine or my body flirting with menopause, what it really is sheer terror that nothing I can do will help their future.
So please, if you see me outside and I lose my cool for a moment, like slamming my hand on a table while I’m dining, or screaming at the driver in front of me (a COMPLETE stop on a right turn on a busy road every friggin’ time!), or the garbage can falls over and I kick it, or your stare at me and I give you the evil eye, forgive me. It’s not you.
It’s simply the best I can do.
The next question, then, is where do I go from here? Is this just a leap of faith to the next stage? Is this the time to do more or rely more on God, or both? I want to just lie back and love them, but maybe I’m missing something here. Honestly, that’s what I really feel like…like there is a piece to this puzzle I’ve left out.
For now, I will keep plugging along, and that may mean less time here. On the upside, that means that when I do write, I will be sharing what about this. What I’ve done, what I’ve learned, and yes, where I’ve failed and how I’ve adjusted. That really and truly is the best I can do for my girls.
And with God’s help, it’ll be enough.
Katrina Stonoff says
We’re in a similar boat — doing everything we know to do, and knowing in the end our daughter will probably be washed into some backwater group home to live out a disabled life.
I just keep reminding myself that as a parent, all I’m responsible for is doing the very best I possibly can, given what I know and believe and am capable of now. And then trusting/hoping the results won’t be too bad.
It’s not easy. /understatement
Gina B says
Thank you Katrina. I know that God has a plan but this is the part of my life where I face reality. There can be more I by believe, it can get better I hope. Just have to wait and see while not being blinded by unrealistic expectations.
Marisa May says
I’m not sure what area/state you’re in, but next door to us in upstate New York we have a group home run by Heritage Christian Services. They have several homes around for manageable groups of adults with various levels of disabilities, and their organization continues to expand with great success. The one next door to us has 10 residents, I believe, with staff round the clock to help with every day living. We’ve met many of the residents and their families, as well as the staff, who seem like really wonderful caring people. The residents are always cheerful and seem very well taken care of, and still have plenty of interaction with their families. Heritage Christian Services are currently only in New York State, but it might be worth calling them to see if they can direct you toward any similar programs near you. Their phone number is (585) 340-2000. And here is the link to their site: http://www.heritagechristianservices.org/Default.aspx?RD=1540
Gina B says
Thanks for sharing that, Marisa. I’m sure by the time we need, there will be more options available – there will simply have to be, sad to say. I’m in PA, an hour or so out from Stroudsburg, where they have a college program for young people with Down syndrome. I’m not without hope, I’m just venting here. Thank you – I think that sort of home will be a great option for Amelia, possibly Zoe. We shall see!
Heather M says
Gina, I feel your worry and it brings me to tears. As a mom to kids who at this point, will be able to care for themselves as adultsi t is scary enough to bring me to my knees sometimes to think of not being here for them. I can’t imagine how much bigger and scarier it is for you. I think there is a combination. we trust God with the lives of our children because ultimately, as you said, they ARE His, then we take into hand what we can and do everything we can to prepare them for the future, to arrange our lives to do what we can to prepare for that future. It’s a big task, no, it’s an impossible task without leaning on His strength. Praying for grace and strength and a peace that passes anything you can possibly ever imagine.
Gina B says
Heather, thank you. I’m so touched by your response! Things will get better, I know it, but you get it – ONLY by leaning on Him. I have hard days, and it seems, more of them so this year, as my oldest approaches middle school. (And the problems I’ve heard that our school is having in those grades.) It was cathartic to write, an admission of where I really am, and I believe that putting this down on my blog is helping me to get to the next stage of being a special needs mommy.