I know what the reality is when it comes to Gavin’s future and it absolutely crushes me. I would trade places with him in a heartbeat and carry his burden as my own. I’ve prayed for that so many times for this to happen, but it’s like noone is listening. Why do I deserve to be healthy and Gavin suffer?
Lizze and I have both done everything possible to unearth anyone or anything that may be able to help Gavin. Every single test has been done and expert consulted. All we’ve ever really received along the way was more information that broke our hearts.
I know that it’s not possible for things to get better. I know that the outcome is a forgone conclusion. What we don’t know for certain is a time frame. Every day I wake up with the knowledge that I will most likely outlive my son and that absolutely kills me.
Hope is an amazing thing and I absolutely admire those who have it, including my wife. Hope requires a strength that I’m simply no longer in possession of. I hate that about myself and I wish hope was something I could maintain but I no longer know how.
I’m in a place where having hope has hurt me so many times that I’ve hardened myself in order to keep from breaking. I tell myself that I’m better off being prepared for the inevitable outcome, whenever it arrives and having hope will only serve to make that outcome more painful.
Maybe I’m right and maybe I’m wrong.
What I do know for sure is a father should never lose hope, especially when it comes to his children. What does that say about me?
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.
Thanks Maria..
It says you are human. I think the same way.
Please don’t lose hope! As someone on the spectrum myself I can tell you your kids need and appreci… https://t.co/kS43LdjKwC
Thanks for sharing ✌☺
Thanks for reading. ☺
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.
I get it and you’re right. Being human is something we have no control over and embracing these feelings is really all we can do. Thank you for sharing your story. I really appreciate it..
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.
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.
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)
Well said..
I totally agree with this statement. Without delving to much into politics, the current administration has publicly taken joy in making fun of people with disabilities. They don’t condemn extremists and have publicly called nazis “fine people”.
It’s scarey to think of our kids trying to navigate this world but like you, I believe in the new generation of voters, who are fed up with this hate..
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.
Thanks Shay
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.
Thanks Becky. We began focusing on quality over quantity a little while back. It’s more important to make sure we make memories, than stress out about the future