Wednesday, August 10, 2011

Hello Again.

Oh, my poor, neglected blog. This is what happens when you let life get in the way of the Internet.

So...with the exception of my little Amy Chua post, I've been kind of absent for a while. There are many reasons for this. In no particular order:

1. My eldest child had a bat mitzvah. It was awesome, but it also took a lot of my time.

2. We planned this whole "move to Israel" thing, sold our house, packed our stuff, and, uh, moved to Israel.

3. I haven't quite known what to say.

Let's expand on 3 a bit, shall we? I started this blog the day we met with the neurologist who gave us D's preliminary diagnosis, which turned out to be spot on. That was the beginning of The Dark Time. And my God, was it dark. For a long time. I blogged a lot, and that helped so much. And I read a lot of special needs blogs, and that helped, too.

Lately, the sun seems to have broken through. Now, I don't want to exaggerate. My son is still disabled -- and just typing those words makes me start to cry -- but on the whole, on the whole, I am far more okay with that reality than I ever thought I could be. I know there are so many things my beautiful boy will never do. And even though there is a piece of me that will never fully accept any kind of limitations placed on him -- because what the hell kind of mother would? -- I am beginning to be able to envision a future for my D. that is hopeful. It is different from the dreams I thought I would have for my children, but I am getting better at realizing that there is more than one version of success.

Basically, the last 3 minutes to the contrary, I don't sit around sobbing all the time anymore. This is good. But for a while I thought that it meant I should stop blogging, because, well, the point of this blog, in a nutshell was, "OH MY GOD, MY LIFE IS TRAGIC BECAUSE MY SON HAS SPECIAL NEEDS AND I HATE EVERYBODY."

So. I thought about stopping, about starting something new, about just closing the computer and quietly walking away forever. But then I thought about the children. my constant and unrelenting need for attention. one of the things I wanted to know back at the start of this journey: "Will I be OK?" And the answer is, YES. And so I think it's important to keep writing this blog -- even though the focus may ultimately shift, even though there may be less WOE IS ME (although I can assure you that there will still be PLENTY of I HATE EVERYONE AND I AM BETTER THAN EVERYONE ANYWAY), even though I may not hyper-focus on the details of my son's progress or his failures. I think it's important for parents at other stages of this journey to know that I survived The Dark Times. I pushed through. I came out into the light, and sporting Chanel sunglasses, no less. And you will, too.


dee said...

Congrats on your big move :) How exciting for all of you!

Also, I'm so glad to know that the sun has broken through and The Dark Time is slowly fading into the background. While I know it will always be a part of who you are, I love that you have much to look forward to for all of you, especially D.

Mazel tov!

moplans said...

I find those glasses at marshall's right?
Thanks for sharing your journey here WG. It means more to me than you can ever know.

kathy said...

i was actually reading another post that you wrote and tried to comment but i didn't see the comment button on that one.
anyways, i was lauging at "because when you hear that “95% of kids with Sotos will need some form of assistance as adults” you want to crawl in a hole and die. But when you realize that those numbers are based on the patients seen by doctors, who are by definition the most severe cases, you catch your breath and feel your heart rate slowly go back to normal"

because i do this too. i googled a particular finding on my son's MRI report and it said that "99% of neonates who have this end up with severe motor and cognitive outcome" and i sat there and pretty much just wanted to die. at that moment, i prayed for god to just let me die of a stroke myself. i mean, i feel like i'm doomed and hopeless. and it sounds selfish because i'm talking about me being doomed and all but it's my son's life but all i talk about is how my life is ruined. i mean, if my son's life is ruined, then my life is ruined too. sorry to sound so crazy. i LOVE your writing style. you're a great writer.

kathy said...

i just read this post thoroughly and i LOVE it. you HAVE to continue blogging. i'm so happy i found this blog and that you are ok now. i'm only in the beginning of the dark times. actually, it feels like it's been forever. it's only been 5 months. it's pretty awful.

eliz said...

Hi! I just found your blog! We are in Minnesota/USA, we are adopting a 5 yr old girl with Sotos and looking to learn about and share with others in this journey! Thanks for sharing on your blog! Hope all is well and you get time to update! :o)

Sara Dee said...

This is a comment on a really old post, but I wanted to thank you for your blog. This post in particular is helping me. So thank you. I'm waiting for the dreaded test results. Dreading the darkness that I will fall in when it's positive. My boy just turned one. My youngest out of 5. I realize now your going through a whole new darkness in your life. I'm following you and praying for you. Thank you so much for sharing. Your new friend, Sara