Counting My Blessings

1) I am very thankful for my mother coming over Wednesday morning just so I could clean my office. I organized, threw away, divided out for a yard sale... ahhh, how refreshing!!

2) I am very blessed for Brady to have such fabulous therapists - we managed to get our first eval meeting now with the preschool for the Fall since they are all such fighters for him. The meeting went really well, and I am somewhat comforted that although we will lose these lovely ladies come his third birthday, he is going to a great school.

3) I am very thankful that I find pleasures in just simple things: finding a good book, finding 15 minutes where I can just sit; clothes that fit; the smell of the flowers as I walk in; getting info for our vacation this summer -yeah!

4) I am very thankful that I know so many fabulous "little people" - my nephew Jack came over this week and made me smile to no end with his"pleeeaaassse"; and a brother to one of Michael's baseball teammates has become my little buddy, helping me with Molly and Brady at the games.

5) I am grateful that Michael is on a baseball team that is fun for him, where the coaches are there for the kids to have a great time without stressing them out (they are 10-2!), where we on the sidelines have a blast rootin' for the kiddos.

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.

I have one blessing this Sunday ~ I am blessed to know all the mommies who have helped me, guided me, supported me, strengthened me, humored me, uplifted me, relieved me and relaxed me. I am forever grateful, whether I have "met" you in person or online. Brady has many "mothers" out there .... thank you and Happy Mother's Day!

Brady's Walk 2008 ~ a HUGE Success!

Brady's Walk last weekend was a HUGE success! Just check out this picture above - Can you believe this picture? It was taken at the Park before we started the Walk. And it isn't even everyone - another six were not in the picture. Plus the MANY more who donated but were not able to come to the Walk. I think I counted 85 people AT the Walk. How amazing!

And how touching ~ how do I even thank all the numerous people who supported Brady's Walk? I received checks from people in the hundreds who did not even know Brady, they just knew someone who knew us. Since having Brady and experiencing the support from strangers, it has changed Tom and me profusely and forever.

The day was beautiful; the threat of rain disappeared and the skies were sunny and bright. Of course I was late getting to the Park, but the amount of people milling around waiting just blew me away. We quickly passed out tshirts and bracelets, took a couple of pictures, then we were off! Walkers, strollers, scooters, bikers, we all headed off around the lake.

We had six WS families there (you'll see in the picture here): Brady, of course, Michaela and her family, Lucien and his family, Coleman and his family; plus two people we hadn't met before - Truman and his family and Brianna and her family. It was exciting to meet the other families, who live not too far away. I hope we will get together with them again in the near future. I know we all see similarities with our WS kids, but Truman and Lucien were identical! They both had that tousled curly brown hair and big grins on their faces.

After the Walk, most of us headed to Ang's house for lunch and fun. Our Music Therapist Danielle and her mother had the whole sound system set up and sang for hours for the crowd. They were phenomenal! After lunch and dessert, we had some raffles that were a big hit. It was relaxing to just be able to talk to everyone, although you never have time to talk for long, of course! I did had out some special flowers to our host, Angela; my sister Kathleen, who donated her February Tastefully Simple profits for the Walk; and Laura for being the New England Chairperson for the WSA and being such a great source of information and support. I was a tad bit emotional (well... just a tad! LOL) but I am in awe of these people who have helped so much.

Thanks to everyone who brought food to the party; thanks to Danielle and her mom for the entertainment; thanks to (another) Kerry who designed the logo; thanks of COURSE to Ang for hosting -- nine months pregnant to boot! Right now... we have raised over $2,700 ~ plus there is still more money coming in! Woohoo!!!!

I will put together Brady's Walk 2008 movie over the next few days. I have a ton of pictures to sort through. I am so excited to have had such a glorious day and to have been able to meet more friends with WS. Thank you all so much!

Brady has decided "I'll show them. They want me to move on forward? I'll show them!"

I know this is his thought process. You see, nap time, bed time, it's always the time to pull yourself up, stand on the side of the bed and chatter until someone picks you up! Please leave that door open so I can stretch my neck out around the dresser and spy you in the hallway, while standing in my crib. If I spot you, I might start jumping around and wiggling my way around the bed.

Can we even GET mad over this? :)

The countdown is on! Only a week left until Brady's Walk and we're really excited! I still have some details to do for it, finalize food details and such, but the tshirts and bracelets have been ordered, flyers done, emails sent. I hope some of our WS families can come and I hope we have nice weather! We're gathering at a friend's house for the after-party with food, music and some surprises. If you need details, email me and I will get them right out to you.

We had our new ST Rebecca today who is extremely SMART. She is so hands-on with Brady. She had him obeying her when she said "Stop" shaking the rattle and "shake" it. I never really saw him "obey" like that before... it's amazing all the things I realize AFTERWARDS that he can do. I must start challenging him more, because I think he is not as far off as I think he is

On Friday mornings for the past month, I have been dropping Brady off at our Early Intervention childcare center at 9 a.m. to his Developmental Therapist Julie, and then picking him up at 11 a.m. He's had Circle Time, Snack, played outside with other friends, and done arts and crafts. He did his first project there, a big green shamrock with paint and glitter. This is a great program for him and a great sample of what's to come next October when he turns three and starts preschool.

He's had some good days, some bad days. We're getting to the more frequent bad days.

In the past, Julie has reported to me that he seems to get upset and startle with the kids. She was thinking the very bright hospital-like room and the other kids bothered him. I didn't buy it - Brady's been in lots of situations where there is a lot of kids and he is fine; in fact, he is very interested in watching them. My house is hardly a quiet one. I bring him to the store with me because he loves watching people and looking up at the lights. But there was definitely something not right, and I do believe Julie is a good therapist so I was ready to listen. We talked about starting up the brushing again to help in this sensory overload. I also made a note to make sure he had eaten a good breakfast since one time he was definitely hungry.

Brady's PT was at the school with him on Friday as Julie was out. When I came in to pick Brady up, I saw him sitting on Lisa's lap, head buried in her chest, almost asleep, with red cheeks. Not a good sign. She saw me walk in and said immediately, "OK, we need to have Tara (his OT) come and observe him, because he is definitely having sensory issues." As soon as I had left two hours earlier, he cried for awhile, then was fine, did great feeding himself, then when they went outside he freaked out, almost a panic attack, as Lisa described. I have NEVER seen him have any sort of anxiety issues, nor had my mother or Tom. Lisa acknowledged there was a new kid at school that day who cried off and on and that set Brady off. I know he is very sensitive to other kids crying, he gets upset for them. (What a sweetheart! :) )

Lisa said they are going to make some changes in the room, turn off one of the fluorescent lights, make a quiet reading area for the kids which will be Brady's quiet area too. But the biggest revelation was what Lisa thinks might set him off in the beginning: he misses me! She said a few times when I have gone to work and left him with her for PT at home with my mother, Brady has cried lately. And --duh!-- it is very common for 2-1/2 year olds to have separation anxiety from their parents -- WS or typical. We're always thinking about the WS factor in things, we forget about the regular stuff! I said Brady goes to others very easily, but Lisa pointed out I am usually there. Even though he has known Lisa almost his whole life, I am not there.

I never went through that with Michael. Michael was and is a very social kid, asking store clerks where to find things and asking other kids n the playground to play. At his first day of preschool it was "Bye, Mom!" I suppose if he was a little sad to see me go, I might have thought of that with Brady. It's nice to know Brady likes me!

I am hoping we will be able to soothe Brady and keep the playgroup and enjoyable experience for him. (Although it is nice to know that the consensus is he really likes me :) )