Saturday, May 17, 2008

I am getting tired of my old line, "things are really crazy here" as to why I haven't posted lately. I have the video almost done on Brady's Walk --just still figuring out the dang-#%& music! I will get it eventually; it took me a little while with last year's too. Hopefully that will be posted over the next day or two.

Back to my first point -- yes, it has been crazy, with baseball, school projects, transition meetings (yep!) but I have to say I don't think that is my only reason for not posting. It is easy for me to post to ask for advice or to vent; but when things are the way they are for us right now, I find it hard to come to the computer and write something out every day.

Brady is doing... really well. He has been progressing very well, very fast. We went to see the preschool Brady will be going to in the fall about two weeks ago, then met with the therapist team from the school this week so they could evaluate his needs (he will have his IEP meeting in September for his October start date). When we went this week, the preschool director was amazed at how much he has progressed in just those two weeks. He has been pulling to a stand for a while, but now he is doing it more correctly and very quickly. He is starting to cruise a bit more. He is still taking his milk from his bottle, but everything else is by straw (he just couldn't do the sippy cup, but his ST says this will be more age-appropriate anyway). You can play with him more; he enjoys toys now. You can make him laugh. We told him to say goodnight to Michael, and he tried to kiss him :)

And the list goes on. I think this explosion started after we went to Kentucky in January and really took off after his eye surgery. (Who knew how blurry things were before surgery??) I had always heard 18 months is the age that "everything happens" developmental-wise. Well, I have begun to think of Brady not as a 2-1/2 year old, but as a 1-1/2 year old, since that is really where he is. In that line of thinking, coincidentally he is about 18 months old now.

I am excited and relieved and .... content. Having to wait for so long to see some kind of development, but knowing it would happen, I finally feel that my optimistic attitude has earned its stay. I know he will come to more challenges and obstacles, but we have been waiting so long for this child to "show up" and he finally did. All the other WS kids I know have hit these milestones long before Brady. I finally feel like we have a "kid" versus a "baby".

It's not hard for me to be positive and to be happy for the way Brady has gone on, and I definitely like to give the kid his props for achieving so much. I celebrate each new facet in his life, then move on to the next.

I have another revelation to share... I am past, and have been for quite some time, the feeling that WS has "ruined" our life. I am sympathetic to those who are still struggling, because it is a hard peace to find, I think. I will always be a shoulder for those people, because I know sometimes it is only time that helps people find that inner peace. Sometimes it is only coming across families who have had much worse conditions than WS. I think that has a lot to do with my thought process.

I don't wish for my son to have his heart condition, or have to be extra careful with his calcium intake or in the sun. Because of his radio ulnar synostosis, I need to be taught how to help Brady catch a ball or even eat with a utensil. But I see changes in me and Tom that would not have come with WS in our lives. Patience. Respect. Care. Optimism (in Tom, not me LOL). Loyalty. Knowledge - of what is important in life. Understanding. It has been said that special needs children are only born to those mothers who are able to "handle" being a mom to a special needs kid... I also think the special needs kids are born into families who need them.

Sometimes I feel overwhelmed in what has to get done, but I have never felt that I was drowning. Sometimes I am fearful of what is to come in the future, but I am so very Scarlet O'Hara and "think about that tomorrow". LOL Sometimes I worry what would happen if I was to drop dead tomorrow.... but all these things are what every mother feels regardless of her child's development. In fact, most of my worries are based on tomorrow, not today. "Today Brady took a BITE out of an Oreo." "Today Brady grabbed Tom's arm so he could drink more Pepsi." (Today momma gets a big bill from the dentist LOL) "Today Brady had a great day at playgroup, not ONE cry!!" I can't worry if Brady will have friends when he is eight - he's not eight yet. (And then I just think of Michaela anyway :) )

Am I only content because Brady is progressing? No, I have always been optimistic among my vents and letdowns. I am sure I will still have them! But no different than the ones I have for Michael or Tom LOL.

Life is what it is... this is my life and here we are.


Julie said...

I generally have the attitude that you have except for today, but I know it will pass. There are going to be rough days. I don't think I have ever thought it ruined our lives, just made it a little more challenging. I am so glad Brady is doing well. You know when Noah's ped discovered the excess wax and cleaned his ears his speech took off. I bet that is the same for Brady's eyes surgery.

Nancy said...

There are so many FABULOUS people and things that come with having kids like ours. Stuff that would have never come without WS. I still can't say I wouldn't change anything if I could...but I have learned it's okay to make peace with myself, anyway, and accept my feelings for what they are no matter what they are.

I'm glad you are doing so well and love to read your blog. You are one cool chick.

Kathleen said...

Your post just reminded me...I was up early this morning with Cooper and caught an A&E Biography of Cher. She was talking about her role in Mask - where she played the mom of the boy with - I don't know the real name of the disease - but they call it "elephant man disease." Anyway, Cher was talking about the real mom of this boy - she was around a lot during the shooting. At one point, she was showing Cher a picture of the boy's second grade class and she said, "you'll be able to recognize him easily - he's the tallest boy in his class." That was how his mom saw him - just the tallest kid in his class - not his special needs, or his significant disfigurement, etc. Pretty cool mom.

Every minute counts.... said...

From the movie Meet the Robinsons- " keep moving forward" that has to be my new moto. Don't look back so much and just enjoy where you are today.
I think that we have grown here too( okay Chris not me, I have always been this way :) in the same areas your family has.

Glad things are going well.

Amy said...

I am way over the woo is me my child has WS as well. It is just so normal now. Obviously I think about it all the time as I am always working with Avery to advance, and there will always be DR. appointments, and medical issues, and stuff. But hey, that's my life. Brady is doing great! I am soooooooooo proud of him, his time has come. School will be great for him next year.

Teresa & Shawn said...

Well said and beautiful, Kerry. I, too, don't feel ruined by WS anymore. In fact, more and more, I am actually thankful that Clare has WS because it has made her the gorgeous little person she is. We can't wait to see you and Brady this week and Brady's "new" eyes!!