Susan's Blog

Thursday, May 22, 2008

It’s Not What You’re Eating…

I felt a blog post rumbling around inside me like gas. I am achey and bloated and avoiding. There are so many things I don’t want to face. So I’m eating and eating and trying to stay full, but the thing is, there is a big fat juicy elephant in this dining room. Nat is moving out on July 28.

Big exhalation of air. My fat full belly pushes against my belt buckle, my shoulders hunch and my hands are splayed like giant crabs across my keyboard. Crumbs everywhere, boys scattered all over the house. I want to sleep to get away from my head.

I have been forcing myself to do things with Nat, to keep going, to keep interacting, but I just feel as if I’m behind a wall. Every now and then I just stop him during his insanely quick pacing, and I give him a soft kiss. I stare into those endless Natty eyes and I just keep wanting to cry, cry, cry. How sorry I am that I could not do this myself, that I could not teach him everything he needs to know to get along out there. That stupid world. How I hate it. How I hate my inability to ease his disability.

I don’t want to deal with this. I focus on his IEP goals, spelling out specifically to his teachers what he can work on in the residences. I fill his weekends with social group and trips with his Northeastern U. buddies, chores, and walks with Ned.

But I am not looking at him as much because I feel guilty. He doesn’t know yet. I don’t know how we are going to tell him. We are going to discuss this issue at the IEP meeting next week. We’ll have ideas then. Until then I feel heavy with my gorging and my secrets.


You have to be so damn stressed. You know where to find me if you need to vent.

— added by Someone Said on Thursday, May 22, 2008 at 6:41 pm

And I have to try not to beat myself up if I gain a few pounds in the process. Thanks so much, Guy, as always.

— added by Susan Senator on Thursday, May 22, 2008 at 6:47 pm

I’m hesitant to comment because I don’t want to sound ignorant, misinformed, insensitive, patronizing, and any number of equally unhelpful things. On the other hand, I want to say something.

Nat’s leaving the nest, and your protective wing, is similar in some respects to my son heading off to college. I don’t think he’s ready for it … not by a long shot. But it’s what’s right.

There’s a very good chance Nat will flourish, grow, and be extremely happy. He’ll have people around him that are well qualified to make the transition as easy as possible, and you’ll still be seeing him all the time.

Blah. I knew that wouldn’t sound right, but I hope you can understand what I’m trying to say. It’s not going to be easy for either of you in the short term. But fast forward a few months and you just might be posting a joyous report of how well everything’s going for Nat.

You’re in my thoughts.

— added by Don on Thursday, May 22, 2008 at 7:44 pm

Thank you, Don, you are wonderful.

— added by Susan Senator on Thursday, May 22, 2008 at 8:06 pm

Don said it so eloquently. All I can add is my thanks to you, Susan. for your incredible courage and vulnerability in allowing us glimpses into this journey you are on. My Nik is only 4 1/2 and I cannot possibly imagine what you are going through. But I do know that, should the day come when I am facing something similar, I will know I am not alone and not the first. Holding you in my heart and sending warm thoughts your way.

— added by Niksmom on Thursday, May 22, 2008 at 8:41 pm

One of my good friends from Brookline has a brother with tuberous sclerosis and autism. He has been living in a home since he was around 18. He is 26 now and he loves it! He comes home on the weekend and stays with his parents and is always very excited to go back and says “Want to go to Brook Farm Road!” He has many friends and loves the staff… it has been a very positive experience for him. I know that Nat will do great.

— added by Ana O. on Friday, May 23, 2008 at 1:28 am

Just catching up. I’m not sure what I could add to what others have said without sounding inane, but I’ll skip the “he will be fine”, right now because I think you need to honor your feelings, work through them rather than squish around them.Just sending love and hoping you take care of you. Em’s Mom

— added by Anonymous on Friday, May 23, 2008 at 8:04 am

“How I hate my inability to ease his disability.”

That line sums up my life in a nutshelll! I feel for you so much, I hope everything works out, and don’t worry about the eating, ya gotta do something to destress!

— added by Bonnie on Friday, May 23, 2008 at 8:59 am

Susan, I can’t imagine how hard this is, or maybe that’s just it – I can. Huge time of transition for you and Nat and all of your family. Just want you to know that I’m thinking of you.

— added by KAL on Friday, May 23, 2008 at 1:16 pm