I’m a Special Needs Dad, guilty of losing hope

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  • Post last modified:April 26, 2018

I haven’t written a truly heartfelt piece in a very long time. Writing has been such an intrical part of my life for so long now but I feel like I’ve lost my voice. Writing has lost its meaning and I’ve lost my passion for it.

I’m working to rebuild that part of my life and it’s not easy. There are roadblocks I’ve yet to overcome and others that cause me to veer off course, at least temporarily.

That being said, and reasons I can’t explain, I feel compelled to talk about hope. I’m not writing about it in a way that’s meant to be inspiring to others, at least I don’t think it is.

I’m writing about how I’ve lost hope.

I’m writing about something very personal and painful for me. Maybe you can relate and maybe you can’t. My goal is to simply open myself up in a way I haven’t for a very long time.

A few weeks back, Lizze and I were talking with Dr. Pattie during one of our routine Tuesday evening family therapy sessions. It was a typical session and we didn’t really have an agenda for that night.

For some reason, and I don’t remember why, we began talking about Gavin.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Maria Hall

Grief doesn’t always follow a logical path to acceptance. You are grieving the hopes you had for the baby Lizzie bore, the son you were eagerly waiting. You continue to grieve every lost bit of ground. Over and over. But you have also been guilty of rejoicing every gain, celebrating progress and loving a child that needs love, believing in a child who needs believed in and supporting them all even to the detriment if your own well being. Please remember that also.

Love Macione

It says you are human. I think the same way.

Demons Run

Please don’t lose hope! As someone on the spectrum myself I can tell you your kids need and appreci… https://t.co/kS43LdjKwC

vhare85

Thanks for sharing ✌☺

Emily Vieweg

Simply, Rob, it says that you are human. You are grieving the life you wished for. I go through that many times a year, and as long as we recognize that these feelings make us human, as long as we legitimize our feelings, we can move past them. Some people push them away and down and out of our consciousness, but they always creep back up, usually worse than before.
I lose hope sometimes, too. During a particularly hard few weeks (I have Bipolar and was in a pretty bad low), I thought to myself, “I hope I outlive my kids, because who will take care of them when I am gone?”
I am being brave by making this thought public, but the truth is, society is hateful. Society will not take care of my children if they need mental health and autism services. I do not have faith in society right now.
My solace, was seeing my daughter perform at her preschool program this week.
If she can stand on a stage and perform with her classmates at age 5, I am pretty sure she will be okay, at least for the near future. As long as we support her as she grows into a young girl, then a young woman, maybe she’ll be able to function as well as her older brother (18, with Aspergers).
I still fear for their futures, however, the feeling of deep desperation has faded.
We are human, we love our kids, we want the best for them… we wish the best for them… and we feel sad (or worse) when we realize that what we wished for – probably won’t happen.
It hurts us. Because we love our kids.

Dotdash

Hi Emily, Thank you for expressing some scary things – that’s hard to do. As parents, we hope to bolster/teach/provide our children enough so that they can survive and thrive, but we still live with some pretty scary ideas in our heads. Not always easy to handle.

Just a question for you: what do you mean by “society is hateful”? Are you talking about society’s indifference to those who have special needs? Or maybe something worse? (Just clarifying as I thought it was an interesting comment)

Hang in there. You are doing some very hard work and it’s tough.

Emily V

Dotdash, Unfortunately right now, I think American society as a whole is enjoying a lot of hate-filled activity, and with the current administration, bullying is all but encouraged. I have hope that the young people today are changing the world, and hopefully my children will benefit from a better future, because the young voices roaring right now are voting, and hopefully the vile underbelly of racism and hatred will go back into the closet.

Dotdash

I think particularly ugly sections of society are empowered right now and can spew this hate all over. Saner and kinder voices will prevail, surely. (well, I hope so. I guess people in Berlin in 1930 hoped so, too, and that didn’t work out so well)

Shay

Just wanted to share this nice story about keeping hope with autism – “Facing the future with serenity”:
https://www.asatonline.org/for-parents/education/lifespan/facing-the-future-with-serenity

All the best.

Becky Wiren

I don’t know Rob. It’s perfectly ok for you and Lizze to feel differently about this. And maybe just because you’ve lost hope doesn’t mean you can’t still take comfort in the time you have with Gavin.