Thursday, August 30, 2007

Wise words

I was blog-hopping and found an amazing post on a blog written by a mother whose four-year-old daughter has Down syndrome. Check out her post, titled Hope and Normalcy, Part 2, then read the rest of mine:

I have noticed changes this summer. Changes in me, I think, but changes in others as well. I know people look at me with pity, with concern, with wonder that I have a "great attitude" for all we're "going through". I appreciate the concern, I don't want to appear rude. But, seriously, I have found that there are plenty more worse things than having a child with William's syndrome.

I can reiterate a lot of what Michelle wrote - just change Down syndrome with William's syndrome. Did I wish for my son to have WS? Of course not - life may be harder, his health will be riskier. And the stupid question would be would I sacrifice him to have a child without WS? Of course not. And about the "bad things" -- He'll have delays. He may live with us longer. He may not be a rocket scientist. He may have hard times growing up and maturing. (Ahem, all of these happen to "normal" people as well.)

I know people are trying to do their best to show me they care and are trying to be supportive. But I don't need or want people to act guilty their child is superseding Brady in development. I don't need people to look at me, sigh, and tell me how great I'm "doing", while patting my back in sympathy. My life is my life. Yes, we have countless therapy and doctor appointments. We are always trying to help Brady gain weight. We will always be in the middle of some "project" we are trying to help Brady with. You can show me support. Just don't show me sympathy. Seriously.

My girlfriend's friend's baby died when he was eight months old from a rare disease. Our PT know another baby who is living on borrowed time at 13 months. I know more than one person who can't even have children -- do you think they would mind having a baby with developmental delays? Our ST knows of a family where the father of five children died in an accident. I know a family whose son drowned at four years old.

For those of you who wonder why I have a "great" attitude -- THIS is why. How can I be sad over Brady when things like the above happen all the time? I am not some super-human. I am not extremely optimistic. I am actually very REALISTIC. Having William's syndrome is not the worst thing to happen.

Now you know my secret. Thank you, Michelle, for a great post and for making me realize why I may need support, I personally don't need sympathy. Just look at that cute little bugger :)

Tuesday, August 28, 2007

Goin' to the zoo, zoo, zoo... how about you, you, you...

We're in the last week before school starts so we're doing a few more fun things than normal. This is my bribery for Michael since we have to go to Children's on Thursday for the nutritionist appointment. (He'll probably get lunch out and the arcade for that visit!) Yesterday I took the boys and Michael's friend to Ang's house for swimming. After a lengthy nap, Brady came swimming too - he loved splashing and watching his buddy James thrash around.

Today we went to the zoo -- it is only 15 minutes or so from the house and when Michael was little I was a member, probably going once a week. It has a great playground and you can bring your own lunch, so even just to do something different we would head over there. I haven't gone in probably over a year, and so much has changed. It has definitely expanded, with fancier lunch areas and it even has a train that goes around the perimeter of the zoo.

This was Brady's first trip to the zoo, and he managed to sleep during most of it. I did get a couple of pics in and he got excited watching the pony show. He is enthralled by animals, which only gives Michael a better argument that we need a dog or cat. He follows their every movement and never seems to take his eyes off them. He doesn't seem scared, just interested.

In fact, he seems more interested in EVERYTHING. The big joke around here was that there was never a need for Brady to crawl, because he wasn't really interested in going anywhere, getting anything, going towards something or someone. Now, he spends some time laying on the floor rolling around to his toys... still not always purposeful, but definitely a little more thought-provoking. He has become very vocal, and I am wondering if his now-daily habit of three meals a day of baby food has helped bring that along. He's still not interested in chewing harder food; he will sometimes just put things in his mouth that's presented to him(like a chip or popsicle) but then just get the taste. Hey, we've gotta start somewhere!

I feel like I am getting to know Brady a bit better. You know right when babies are born they kind of just hang around, they are just "there"? For me, Brady was like that for a long time - he only showed real emotion when he was hungry and that was it. He was freakin' adorable and snuggable, but.... there wasn't a lot of else there. He has definitely "woken up". He is determined. He is playful --loves Peek-a-boo. He hates Mixed Vegetables -- and this is hard to figure out if you have a WS kid- you don't know if they don't LIKE something, CAN'T eat it, or CAN'T tolerate it. It's a major move! :) He gets excited. He smiles.

Ahh.... he smiles.... who'da thought I would be taking that for granted now?? Just read my first 100 posts :) :)

Tuesday, August 21, 2007

Yesterday we met with our new therapist - an Educator named Julie. She will be basically playing with Brady for an hour a week (Who knew that was a job??). Our PT called her to join the team because both PT and OT spend so much time working on Brady's low tone that they are not doing some of the normal PT and OT stuff. That's where Julie comes in. She will co-treat with one of the therapists once a month, then come alone for the other three weeks of the month. I really like her - she was very down to earth and easy to chat with.

I do plan on signing up for a class at the Y with Brady, just for fun. He gets so much attention, but such little time with other kids. I was planning on swimming lessons, but I think instead I'm going to do a Mommy and Me and Music class for one to three year olds. I think the age range will be good; he will be where he should be, but not everyone will be so far ahead of him. Michael is also signing up for a skateboarding class - ER, here I come!

Trying to find a class time was pretty frustrating though; between his therapy appointments, me trying to work a day or two, and Scouts, it took quite a bit of maneuvering. Hopefully there will be openings in the classes I want and I won't have to start over.

Monday, August 13, 2007

Since vacation, the weeks have been flying by and it seems school is inevitably drawing closer. Fall is my favorite time of the year -- the weather, the back-to-basics scheduling, getting ready for Christmas (yikes! 135 more days!).

This past weekend Michael, Brady and I went to my friend's three-year-old son's birthday party. It was held in this fabulous artsy craft store where the kids played with imagination-type toys -- kitchens and castles and blocks -- and then chose a wooden trinket to paint and bring home. For girls, there was a small jewelry-type dresser or wooden pocketbook; for boys there was a treasure chest or collection box. Michael chose the collection box and began designing his creation and painting.

Each chair at the paint table had a name plate where the guest was to sit to create. Brady had his own spot, which I smiled to myself, thinking, that they must just have them for all the kids at the party, regardless of age. Then I noticed my friend's niece skip over to her labeled chair, plop down and proceed to tell her mother what colors she wanted on her dresser she was painting. She grabbed a paint brush and stuck it right in the pink and purple, swirling it over the drawers and top. I glanced over at Brady, calmly laying back in his stroller watching the kids. It dawned on me that this little girl was a month older than Brady. Not two years, not three years... one month.

This realization made me turn my head to watch the twin girls running around so much they weren't even painting -- they were the twins in the baby seats at last year's party, also Brady's age. A little knot I wasn't expecting began to grow in my stomach... knowing and dealing with Brady being delayed is one thing - to actually see it in front of me is another. While I know my friend very well, I only see these other people at the birthday party every year and I am not aware if they know Brady has WS. I have girlfriends who have babies younger than Brady and their children are excelling right past him, but I don't notice it as much -- maybe because they are in this boat with me and I never feel the need to explain or make up for the differences. I am genuinely excited when this little one takes his first steps or that one says "momma". For some reason, these strangers put more of a heaviness in my heart. They didn't do anything or say anything; it was just all me.

I did pick up Brady and painted his fingers so he could decorate the box... he wasn't too keen on that, but after he had some of his bottle he was better. He started getting really fussy, but, relieved, I noticed it was because he was due for his nap. I finished feeding him and laid him in his stroller where he proceeded to just chill. I was able to sit and chat with my friend for quite awhile while the other parents ran after their kids, who ran around the store picking up toys and throwing them around. The little devil inside of me just smiled.

Thursday, August 09, 2007

One day, two six-year olds were having lunch...*

Trey (eyeing his brother's Cheetos): "You know, Luke, there's carrots in Cheetos."
Luke: "No there isn't!"
Trey: "Yeh - why do you think they are orange?"
Luke: "Mom! Is there carrots in the Cheetos?"
Mom (nearby, who is trying not to laugh): "No, Luke, there are no carrots in Cheetos. They have cheese in them. I think that's what makes them orange." ("that, or some chemical," Mom muses to herself...)
Luke: "So there...."

After Trey watches Mom walk into the kitchen, Trey says to Luke: "You know, Luke, I read in a book one time, 'Some cheese is made out of carrots.' "
Luke: "Mom!"
Mom (eyeing Trey suspiciously): "So, you read that in a book, Trey?"
Trey (trying not to laugh): "Yeh, I read it in a book, Mom."

* This is a true story. The names have not been changed.

Tuesday, August 07, 2007

Another brick wall....

So here we go again... another brick wall. We're trying to get the splints for Brady's hands and a strap for his glasses. After going a couple different avenues, we are still empty-handed, no pun intended. We went to a very distinguished medical pharmacy today and the technician spent quite a bit of time trying to find our items. Nope. Nothing small enough or big enough.

I am pretty sure that Children's Hospital should have what I'm looking for - I was just trying to escape from going there in August since Brady and I will be there five times in September. September is our "annual" visits month, so we are seeing everyone and having an echo -- all on different days, of course. So tomorrow I will make calls to the orthopedist and opthomologist to find my best course of action.

On a sidenote - we're on Day 4 of Glycolax (sp?) which is prescription strength Miralax. We've been going great (ha - no pun intended). I've noticed he doesn't have that afternoon crying moment we've had for the past couple weeks, so now I feel bad knowing he was uncomfortable probably!

If you like Pina Coladas...

On Saturday, Tom and I abandoned both kids and went to a cookout hosted by my boss and friends, Sharon and Mike. Tom's brother took Michael to a baseball game, complete with clinic and autograph signing, and Grandma took Brady, who ended up having a fever all day that only went down with Tylenol. He was still a cheery little guy and ate well, so we're not sure what came over him for the weekend, but since he was with Grandma we weren't too worried.

Tom and I headed out, ready for an hour trip onto the Cape, which turned into a two-and-a-half hour trip due to a seven mile back-up on the bridge. Luckily, we steered off the highway and went back roads for awhile, actually having a pleasant ride down. We zipped through towns on a glorious bright day, which made the ride much easier to take. Needless to say, when we arrived at their house on the water, we were ready for some appetizers and drinks.

The nine of us sat on the deck, overlooking the ocean and taking advantage of the warm summer breeze. Their yard was a plush green carpet, upon which I immediately kicked off my shoes and pounced on as I made my way to the over sized hammock that was resting near their dock. Three of the other women quickly joined me and it became a game of who was going to stay on.

Two people went out on the Jet Skis and we followed them out into the open water on Mike's boat. I am not a big fan of boats, but I was fine scooting out into the open shore and riding fast. Then Mike stopped the boat and we floated in the water for awhile; here is where I noticed my sea legs starting to cave in! I held my own and suggested heading back in. After a few ribs and another fast ride, we got back to the house where I gleefully jumped ship.

Our dinner was fabulous: steak kabobs, grilled chicken, potatoes, sweet corn, Caesar salad; and dessert was no less delicious - chocolate cake and strawberry cheesecake. The day was wonderful and even with the long ride in, it didn't really take away from our relaxing mode.

Tom and I don't always remember to take the time to go out on our own - and every time we do we say, "We've got to do this again!" Michael had a fabulous time spending the day with his uncle and Brady likes the attention from anyone, so it's nobody's fault but our own that we don't plan more days like this. However, with two kids and work and doctor appointments and just life in general, it's hard to remember to slow down now and then. That's always the lesson, though, isn't it? Slow down, smell the roses; take time for yourself; yadda yadda yadda. I'll try to remember as soon as I get one more thing done...

He's getting bigger every day...

Friday, August 03, 2007

It has been pretty routine for us over here - slowly getting back into therapy appointments after being on vacation. Brady's PT is still on vacation so we only had OT and Speech this week. At OT we settled on getting Brady splints for his hands - out of habit, his thumbs stay rested in the middle of his palm. Our OT and PT wanted him to wear splints during bedtime to start re-teaching the thumb to move out. I am going to a specialty medical store to get those. I am also trying to get a good band for Brady to wear so he will leave his glasses on. The optometrist gave us one, but Brady pulled it right off! Smart little sucker. I have a lead on another office to go to for that. We also had weight check this week - after doing great on food all month Brady gained a whopping ounce! It always happens when he is back on food as opposed to being on formula for the month. Our pedi only let us out without changing his formula because we have a Nutritionist appointment in a few weeks. Plus, after a good calcium level check, she gave us the go-ahead to use Miralax, which we will start tomorrow once I figure out how to make it. That will hopefully lead to more eating as well.

My mother is on a genealogical kick right now. A distant cousin has already put together a genealogy tree of the family and my mother has been filling in the holes. I was glancing it over the other day, and commented on how confusing it was. Coming from an Italian heritage, children were named after grandparents. First son, paternal grandfather; second son, maternal grandfather; first daughter, paternal mother; second daughter, maternal mother. And all the children did the same thing. For example, my grandfather and his brother both had children named Joe, Laura, Peter and Sadie. As I read down the lines, I kept reading the same names over and over. Joe, Peter, Laura, Sadie. Joe, Peter, Laura, Sadie. Here a Chuck, there a Chuck... a couple Mary Roses and Rosalies.

My parents didn't completely stick to it - but both their father's names were Charles anyway, so it was a good thing they didn't have two sons. At a family reunion many years ago, we photographed all the "Joes"; all the "Chucks"; all the "Petes". I have two cousins named Chuck; two cousins named Peter; two of us are named for my grandmother; and many are in some way named for an aunt or uncle.

My mother was adding in the newborns and other babies born to my cousins. I read some of the younger generation: Cooper. Natalie. Grant. Brady. Sam. Trey. Alex. Many parents utilize the middle names now to honor someone, instead of the first name. For instance, both Cooper's and Natalie's middle names honor a grandparent who is no longer with us. Doing this gives people a chance to pick a name they really like, but still remember someone with the second name.

I like tradition. We did it ourselves: Michael Thomas is named after his maternal father and father; Brady Joseph is named after his maternal uncle and the Brady Bunch LOL. However, I don't think my brother, sister and I will have to distinguish between which "Michael" we are yelling at (well, my mother and I do! LOL). Times have changed. People don't always follow the same rules, same traditions that were so prevalent years ago. The continuity is not there. Does anyone have a grandmother named Tiffani? If not, somebody will, in about 40 years probably.