Friday, April 20, 2007

It's been awhile since I have posted, although I keep up-to-date with everyone else's blog. It is so selfish of me, I know; and when others don't update their blog, I am always, "What's going on over there? WHY haven't they written anything???" Poor Nancy, you must get my mind waves going a mile a minute because I know I'll get some super-dooper brain lesson from you and if your entry isn't new, I am trying to tell you telepathically, "Let's go!" :)

There have been reasons why I haven't updated. First, it was because I felt like I had nothing to say - everything was pretty much going as usual and how many times can I say, "So, we're trying to help Brady gain weight; he's moving along fine, slow and steady, blah blah blah." And then it was because there was too much going on and I couldn't quite decipher WHAT to write.

I do feel a change in the air, though.... a small but steady shift in my life that exists although I can't place my finger on it. I am slowly feeling a break from my normal routines, a break from friendships that I can't determine the causes, a realization that life is about to change somehow.
It is very odd and I can't really offer anymore explanations. I just don't know. Maybe it will all unfold in front of me and I will see what life will bring me. Maybe I am just getting older.

I have had a few "a-ha!" moments. I have realized that Brady is on more of an uphill path than I see some of the other WS babes out there. It doesn't make me vengeful or unhappy for the others, just a little more sad for us... which I think is very hard for me to acknowledge. I am always the one encouraging and although I do acknowledge things really bite sometimes, I still have that inner positive attitude.

I have also realized that raising a special needs child will require many conversations with my eight-year-old. He and some friends were talking the other day and said someone was "mentally retarded" and I instantly went into defensive mode explaining that it wasn't funny and it is not something to joke about. Later on I talked to Michael when it was just the two of us and asked him if he knew what being mentally retarded meant. I know he is just talking the talk all kids do, that he isn't trying to be mean. So we chatted. I said how it took some people a longer time to do things but it was okay, everybody goes at their own pace. He understands that Brady is delayed in general, and he pointed out how Brady didn't walk yet or even crawl and our friend's baby was running around the hosue who is a few months younger. He still wanted Brady as his brother, no matter what.

Then he matter-of-factly asked me outright, "Is Brady mentally retarded?" I hesitated because I don't really know how to answer that. Is he? I know he has Williams. I know he is delayed. I know he has SVAS. I know he has radioulnar synostosis. I know we have no idea how much help he will need in school yet. Is this a label for my eight-year-old to have about his brother? On the other hand, Brady seems "normal" to Michael, so would having this label be a good thing for Brady to have while still seeming "normal"? (Did you follow that?)

So I half-chickened out. I said something like, "Well.... kind of, but because he has Williams he has delays and he may need help learning." Michael was fine with that and didn't ask me any thing else, although we talked for a few minutes more. I think he mulled over that conversation in his head though, because the next day when I was taking him and some friends out he said, "Did you know my brother's mentally retarded?" I almost hit the brake. I explained to him later on that while we aren't secretive about Brady's Williams', we don't outright tell everyone we walk into. I told him, "We don't say, 'Hi, this is my son Michael and he's allergic to peanuts.' " He seemed to understand that and I have to remember he is only eight.

And on the other hand, I met a woman yesterday on the ballfields whose son has PDD-NOS and while we chatted about some of the similiarities between her son's childhood and Brady's, her son came up three times to get money for more food at the concession stand. She rolled her eyes and said, "Yep, he had feeding problems!" Obviously not anymore! He also didn't say his first sentence until he was four... now he didn't keep quiet! She said, very profoundly, "Just to show you, you don't need to worry about everything... it all happens in their own time." I don't think she realized she was being profound, but I did walk away a little lighter.


Nancy said...

Wow. Great post. I knew if I sent you enough brain waves, you would write again! I was getting a headache there. And thanks for stopping by to visit me.

You are handling conversations with Michael very well. It's great you have such an open dialogue with your son and don't (visibly) freak out when he says something that shocks you. What a great mom.

I hate that "change is in the air" feeling. Sheesh, I wish you lived closer. I guess I could say that until I was blue in the face, but we just have to wait for some sort of geographically continental shift or one of us to move. Anyway, I hope we are always friends. Sappy, I know, but you WS moms bring out the sap in me to a level I have never experienced.


Kim, Grandma to Ava,ws said...

I loved your post. Your honesty with Michael is great. He will be a better person for it.

I, too, feel that change is in the air. Ava's limitations are becoming more apparent (sp?) these days, though she does continue to progress. I feel lucky that I am "just a grandma", because I don't know that I could manage as well as you and the others.

Love, Kim

Every minute counts.... said...

Thank you for being just one more person who understands that the challenges don't just lie in one child when you have more than one. I think you did the right thing with Michael. My Hannah is 8 too and there is only so much she "gets" about her sister. The boys on the other hand, know. Lathan one time got in trouble at school for threatening another kid. The other kid was making fun of one of the special needs kids and Lathan told him to knock it off. The kid said "why?" and Lath told him "because my sister has the same kind of problems. Just shut up!". Then of course the kid has to say "what you gonna make me" and Lathan says " and Levi and Trevor and whoever else I tell that knows my sister and would want to protect kids like her." The kid shut up and hasn't messed with the little girl since.
There are even other girls the same age as Lathan who now stand up for special needs kids because of Abi. They have all fallen in love with her and now that they know and understand what is going on with her...they understand some of their peers with special needs a little better. I have gotten reports from all 3 kids' school about them standing up for other kids. The best thing about it is, it catches on. Their friends stand up more too. Maybe it will work out that way for Michael and his friends. They will love Brady so much that they start to not see the disabilities in others as being so terribly different from themselves after all.

You did the right thing..keep up the good work!

Teresa & Shawn said...

I think you handled yourself with Michael very well. I don't know what I am going to say when the day comes that Jamie realizes his little sister is different from other kids. I will probably ask you how you're handling it!!!

Aspen said...

I too have thought about what I would tell my other children (when we have other children) about Daven and WS. It is such a touchy subject that won't be taken lightly. You did an amazing job! He will be so great and protective of his baby brother. That is the beauty of siblings. They can fight sometimes, but mostly they just want to love and protect each other.

Great job! I have missed you. It was great to hear all the updates. I know the hill seems so steep sometimes, but you and Brady will get there! We are all in this battle together. Love you Kerry!

Nicole said...

I totally agree with the other comments. You are a great mom and I love how you handled this conversation with Michael. I will definitely ear-mark this post when I need to have a similar conversation with Ella.

Thanks for a beautiful post on a difficult topic.

Lisa R said...

I wish I knew what to say...I do know that I ma notso much really looking forward to that talk with Emma...Maybe the big change is moving to MD???? Love You