Friday, July 28, 2006

A lot has happened over the past few days that I haven't had time to post. Let's see if I can remember it all...

On Tuesday night Brady rolled over to his stomach - this time it was seen by a REAL person! (Brady has rolled over two other times but not in front of anyone.) Tom was lucky enough to see this. He rolled over, then laid there and went to sleep. (above) What a man!

Brady has been growing and maturing in all aspects. He has constantly more eye contact, and his 3-6 month clothes are getting a little tight in the length. He seems to grasp things more, and definitely moving around a lot as well.

We went to the Opthamologist yesterday, as was requested by his geneticist that he see one before he turned one. His eyes also turn in sometimes as well, so I was very excited to go to see if he had trouble seeing or what was up. His eyes have gotten better over time, though; since he has been focusing more on things I am noticing his eye turning in a little less. The doctor has suggested to patch his left eye an hour a day to strengthen his right eye. We'll go back in eight weeks to see if this has helped. He may need glasses at some point, and although having glasses is common with William's, my side of the family is also sight-challenged! We also had a blood draw to check his calcium levels while we were at the hospital. After, my mother, Michael, Brady and I hit the Country Buffet restaurant... Michael likes to wait on us. It's great, my mother and I can talk and tell Michael to get us a Pepsi, chips, or whatever! I highly recommend it if you have an eight-year-old.

And to top off the day... we went to Bon Jovi with Nickelback opening. It was a fabulous time! I did not tease my hair big as I threatened to do, but there were definitely some '80s songs blasting through. (Thanks Mich and Sam for a great time!)

Monday, July 24, 2006

The Gift: Lessons Learned

I met up with my girlfriend last week whom I haven't seen since Brady's christening. She and I have been friends since sixth grade (we did have a year or two in high school that was, well can we say very high schoolish and we weren't that close. What we can see when we're older!). She is someone I can count on to be truthful, yet sensitive and I have always admired her for that.

We sat in her den, talking about our kids when the subject turned to William's Syndrome. She was asking questions about Brady's issues and what we've been doing. I responded with my usual about delays in toddlerhood and probably needing some help in school; healthwise we are dealing with heart issues that we are monitoring, keeping an eye on his weight, and maybe some eye issues, we find out this week. I gloss over the topics that I don't like... 55% of the children examined were found to be severely mentally handicapped, 41% were moderately mentally handicapped, and only 4% of the children had average ranges of ability... Some live in group homes with other adults with a variety of disabilities, and some prefer to stay at home with their parents.

There it is again... that little voice that is at the back of my head that reminds me that my child will never be like his brother. That he will struggle with abilities others take for granted. That voice that I squash when I talk to people about his future. It's a part of William's that I don't like to discuss. Funny, I have no problem talking about his heart condition, which is ten times more important and serious than whether or not he works behind a counter in a drugstore rather than becoming a brain surgeon. I know this. I know what's important. I know in the front of my head that him being a happy person and becoming a healthier person is more important. But it's the little voice in the back that nags me. In my solitary moments of non-optimism (I just made that word up, but it so fits) I am reminded of what he may not become.

And as I sit with my friend, I feel as if I am not being fair. I know I will have my non-optimism moments. We all secretly like the fact that with William's there are no absolutes, there are no glass ceilings. Each child is diffferent in their abilities, so some will excel where others do not. This way, we can all say to ourselves, "My child will be the one that isn't affected as much."

But then I came across a scrapbooking layout in a magazine recently. It was made by a mother whose eighth child had Down's syndrome. The mother's journaling went something like this: "We've reflected a lot on Joseph and his Down Syndrome since his birth. After all the thoughts, prayers and pondering, the one simple conclusion we've come to, the one truth we now believe with all our hearts, is simply this: Joseph's condition is a gift. For Joseph it means he will be free from so many cares in the world. He will live out his life with no guile, with no unkind thoughts. Our gift is that we have the joy of this little angel in our midst. It makes all of us want to be a little better, to reach a little higher, to love a little deeper, to be a little more grateful."

Wow. Could not have said it better myself.

Saturday, July 22, 2006

The Team is Set

Brady has been in a little growth "spurt"... he's doing his funky faces, moving all over the place (everything but the actual rolling over - although I think he did roll off the couch but I didn't technically see it), turning towards people talking, and really watching people and animals (that's him with his friend Betsy Beagle on the above). His friend Kitty was pacing back and forth watching him today, and Brady followed her every move, talking to him and moving towards her. He'll sit on your knee and ride it back and forth like a horse, grasping his tiny hands around your fingers. His 3-6 month onesies and one-piece outfits are getting two short on him, although he has no butt or waist, so I'm not sure how he'll fit into the 6-9 month clothes. Already having his bottom two teeth, his upper left tooth has broken through and the other top tooth is just about to. It seems like we've been waiting for awhile for him to move forward, and I think we're finally getting there.

His PT Lisa excitedly told us the other day that we start OT with Tara in two weeks, and Tara will be the same person we'll be able to do swim therapy with. Lisa was thrilled we're matched up with who she wanted us to be set up with and feels we have a great team for Brady. Along with Vicki, his Speech Therapist, Lisa and now the new OT Tara, we are set for awhile as they go to town on Brady.

I am always hearing the same comments from different people ... what a difference in the quality of life Brady will have because he has started his Early Intervention so early. Ironically, it was because he had a heart condition that he was diagnosed so early. What a double-edged sword. Without seeing the cardiologist, we might not have known for awhile what was up with him. I constantly read about children who were diagnosed later on -- when they were years and years old, not months, and it makes me feel for those parents who KNEW something was amiss with their child but didn't know what it was.

Wednesday, July 19, 2006

QUICK NOTE: About Lessons Learned entry

I didn't realize what gate I was opening when I wrote the entry on July 17 about Lessons Learned: True Friendships. I have received emails and calls about people apologizing for not being a good friend. Oh my!!! Quick note: if I haven't spoken to you in awhile that doesn't mean I don't think you are being a bad friend! I know there are people I can count on regardless of when I last spoke to them. There are people I will drop things for and listen if they called me after not seeing each other for awhile.

I certainly don't think that my family is more important than anyone else's (except to us!) ... and I certainly don't think that the idea of true friendships relies soley on favors or constant contact. I had friends say to me they understand where I was coming from when I wrote this entry because they too were disapointed by a friend or family member.

I appreciate all that people have helped us out with regarding Brady... big AND small. I do value all of our family and friends and know how lucky we are to be blessed with so many caring individuals. Thank you!

Tuesday, July 18, 2006

Quick Update: A Great Day in the Neighborhood

Today Brady had Speech at 9 a.m. (he's studying Spanish... hahaha) and Physical Therapy at 11 a.m. Brady was sleeping right up until Vicki got here at 9, and though usually he wakes up and stays up for awhile, today he just wanted to go back to sleep. So she was able to only work with him a little bit, massaging his gums with flavored gloves and gently massaging his cheeks. We were able to have him track a bit, using Michael as his focal point. He will always watch his big brother!

I told Brady to sleep for that hour inbetween, but he lounged with half-open eyes instead. Right at 11:01 he crashed, just as Lisa came in. No prob - she stretched him out while he slept, and when he woke up later on she worked him - sitting, rolling, standing, etc. She said he is doing great and really progressing each session - yeah, Brady!

We're all very excited to go to the Opthamologist next week - I don't know how they figure out what babies can see, but hopefully they will have some answers with Brady. He can definitely focus, but his eyes go inward sometimes, and sometimes he tilts his head and looks up, like he's trying to see you better or something. We'll see!

Monday, July 17, 2006

True Friendships: Lessons Learned from the Little One

The one problem I always had in my writing was clarity. My writing sometimes jumps from my head to my hands, without any thought process to make it better understood. It's as if I need the reader to jump into my brain to follow along. Well, I have realized a few things from having Brady that I hope to share over a few entries. It's as if he knew I needed clarity in my life and has made some parts of it much clearer. So, henceforth, is the beginning of Life Lessons from Brady. Feel free to add your own at any time!

We are blessed in our lives to be surrounded by many family members and friends who have been true angels. Things over here haven't been very easy in the past few years. We're a pretty happy family, but we've also been touched with challenges of our own. First, having difficulties conceiving for the second time and then having a child with a genetic syndrome, along with a rambunctious eight-year-old, things can get quite hectic!

One thing I have realized is where the true friendships are in our lives. You know who those true people are verse the pseudo-true. It's basically all about taking the easy way out. It's easy to be happy for someone when they have a child. It's easy to go to The Gap, buy a baby outfit and drop it off with a note and a smile. It's easy to meet up on holidays and special occasions, bounce the baby on your knee, tell the parents how adorable he is. It's easy to sympathetically nod your head when you hear of doctor appointments and even offer half-heartedly to help out when you're making the trip to Children's Hospital every week, sometimes twice a week. It's easy to ask, "How's Brady?" after not touching base for months. Yeah... we know people like that.

I used to be the one who made excuses for those people. "Everyone has a busy life," I'd say. The reality is that people make time for what they want to make time for. It's unnerving however, when the pseudos act like they are giving you the world. Sometimes I look around, shake my head and wonder where these people come from. I'll admit it-- I'm not perfect. Do I have friends or family members who I don't speak to as often as I should? Absolutely. However, I'd like to think that I am there when they need me; that I am there when they are struggling and seem desolate. As much as people want to let me give, I try to do that.

But then you have the people who call all the time to ask how it's going, to be your listening board when you need to sound off about your fears and anxieties in regards to William's, for the hundredth time. You have the people who come to the hospital every day, bring chips and salsa while your child lays on a light table for his jaundice. You have the people who call and say, "Hey, why don't I take Michael after school so you don't have to make arrangments when you're at the hospital?" You have the people who call to ask what Brady's weight was during those never-ending, all-important weight checks. You have the people who say, "Drop Brady off here so you can get out for awhile" or "Stop by and have dinner". (By the way, both those things happened this weekend.) You have the people who fit you into the doctor's schedule, who work with you so you're NOT going to the doctor's twice a week. You have the people treat you like every other new mother, excited to chat about her child even though it's about weight checks and cereal consistency - they still listen. They're reading this blog right now - heck, they know I have a blog.

Every mother who has a child with William's Syndrome will probably tell you that having their baby has made them aware of what is really important in the world. It's not like with every disaster that happens, we all get religious and lovey and good, because then... it wears off. We go back to our daily routine and we go back to our ways. Well, William's doesn't wear off. This isn't some fad or hot charity of the month. This is here to stay. So I need a little extra help right now. I need the sounding boards, the carpool help due to doctor visits and 7 a.m. appointments in town at the hospital. There are times that we all need a little more, and some times when we all give a little more. It all evens out in the end.

And that is what I have learned from Brady: true friendships blossom when things are tough. We need these people in our lives. We shouldn't settle for friendshsips that are onesided, or a farce or need that much forgiving all the time. We would never tell our children to settle for less in a friendship, why should we? I learned to not make excuses for people who just continue to disappoint. I think that was something I was told many years before, but I only just now realized it.

Thursday, July 13, 2006

Special Mothers

Read at a SAMHSA workshop

This was posted on another blog that I read regularly who's daughter also has William's Syndrome. I asked her permission to post it because it is such a great story.

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of disabled children. Did you ever wonder how mothers of disabled children are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger:

"Armstrong, Beth, son. Patron saint, Matthew."

"Forest, Marjorie, daughter. Patron saint, Cecilia."

"Rutledge, Carrie, twins. Patron saint... give her Gerald. He's used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a disabled child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.

"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see -- ignorance, cruelty, prejudice -- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

Wednesday, July 12, 2006

The Good Days...

First off, PHEW!! I've tried to get onto my blog and it DISAPPEARED! Luckily, I was able to get in another way... I republished it and now it is back. The first thing I did was copy all my entries, including photos, and saved in a Word document that I will print out as soon as I buy more ink. I wanted to keep a copy of the entries and comments, but, of course, kept putting off printing that. At least now it is saved in another format so in case anything happens again I will be all set.

I was so excited to let you know what's going on too, it figures I couldn't get on! Brady had his nine-month visit at the pediatrician. He gained seven ounces in 22 days... yahoo! That is 1/3 an ounce a day, pretty much what we were hoping he'd be at. He now weighs 12 lbs 12 oz. and is 24-1/2 inches long. We don't have to go back for a weight check now for a month. Yahoo!

It's funny, a friend and fellow blogger stated that with her son the development seemed to happen all at once... nothing, then BAM! Brady is now lifting his head up pretty good; he looks at your face for a long period (although with his eyes going every which way, I wonder what he is actually seeing, poor thing!); he's on the verge of rolling over; he will sit on your knee, grasp your fingers, and bounce bounce, bounce; he's babbling more; doing strange face stuff - see above!; and, yes, the smile is ALMOST there. I would have to say that it's only been over the past month we've seen the improvement in everything. And though I know he will plateau and work just on these skills, and then I will have to wait for the next round of development skills, I am revelling in the moment. We need to, right? Heck, I think we've EARNED it!

Here I was, just a few days ago wondering if there was something more wrong with my child because he was so far off on his milestones... and today as I sit and write about his accomplishments, I realize that I've forgotten about those anxieties. Brady has his own timetable, and I suppose I will need to adjust mine to his.

Sunday, July 09, 2006

Meet Brady: You'll Fall in Love!

Well, we're reeling from a GREAT Saturday night... Michael and I went to the American Idols concert. Yes, I can't believe an almost-8-year-old went to a concert, but it was AWESOME!! We rocked out listening to the CD on the way there, and after got dessert at the 99 Restaurant. He crashed of course three minutes into the drive home. He was very popular amongst our section - a group of mothers sat behind us and next to him was a 30-something girl and her husband/boyfriend. She danced with Michael a lot, as the women in back kept asking him who his favorite Idol was and engaging in conversation with him. I was very lucky to sit next to such a popular guy!

Which coincidentally is what I was thinking about with Brady. I notice this with other parents and what they say about their kids who have WS. It seems that the kids are particularly more endearing to strangers, they seem to melt everyone's heart when they meet. Brady definitely has plenty of guardian angels out there. I think it is only natural when you hear of a little one going through so many problems as he has, that people are drawn to them.

During the school year, I volunteered a lot at the elementary school. Of course, Brady came with me. He was VERY popular! The kids were all enthralled with him. (Funny, the little boys were more interested than the girls... always wanting to see him and ask about him. Maybe we have some sensitive souls out here in Massachusetts!) The teachers always stopped to talk to him, and the secretary was definitely a fan. It made me feel so good to know that people are out there looking out for him.

I wonder what he'll be like as he gets older... if he'll have the qualities that a lot of WS kids have, that overly-friendly, social personality. Michael is already the Social Chairperson, I can't imagine Brady being more than him! But Michael knows when to reel it in, too. I wonder if we'll be constantly trying to teach Brady to not be as trusting or... wait a minute. This is insane. I think like this then realize this is no different than what I think about Michael, who doesn't have WS. I wonder if he'll grow up happy, if he will be successful in his life, if he will fall in love with the best person for him, if he will marry, have children, if he'll move far away from home, if he outlives me. Just like every other mother with their son.

Yes, we have challenges. Yes, Brady has a heart condition. Michael has a peanut allergy. Someone's daughter has diabetes. Someone's son has dyslexia. Someone's daughter has an eating disorder. Someone's son has ADD. Don't we all have challenges? Don't we still worry even for our children who don't have delays?

People tell me I have a great outlook with Brady... that I have a good attitude and they marvel in how well I'm "doing". Yes, I have my moments. Yes, I am waiting for a smile from Brady that "should" have come six months ago. With Michael, I worried when he was a year old and we found out about his peanut allergy. (I also worried when he fell down the stairs, but that is for another entry!)

I am not trying to diminish the seriousness of WS; it makes for many challenges, some I'm sure I don't even know about yet. I know the biggest challenges are to come when we know how WS has affected Brady, when we know where his weaknesses lie. But, seriously, don't we all know adults who haven't lived to their fullest potential - who seem to be sliding around life without any focus.. who not only don't know want they want, but they don't seem to care about getting there? If I was a mother of one of those children, I would worry. Yes, I worry about Brady's life and the quality that it is, but I also worry about Michael's life. You know, it's not just something to say to make us feel better - mothers of kids with WS are really no different than other mothers. We just need to focus on different things.

P.S. Yes, the picture above LOOKS like he's getting close to that smile! I cna't wait to post some pics of that day!

Thursday, July 06, 2006

On a Quest...

I have been trying to figure out how to write about something that's been on my mind without it sounding cheesy or sad or obsessive. I have spoken to a few people about it, which has elicited blog entries, long conversations and pseudo-therapy sessions. Yes, we're talking about Brady not smiling yet.

It's silly, really. Why am I so obsessed??? I am grateful he is here in this world; I am grateful how well he is doing in general. It's like complaining about your husband not cleaning up after himself to your friend who is divorced from an abusive man. She's probably thinking, "Um, at least you're happy in your marriage." I KNOW things could be worse... yet, still here I am, thinking about it.

It's really because that's a SIGN... a sign he's happy, that he cares, that he's aware, so to speak. That he likes me! LOL It's a glimmer of hope from a year of doctor visits, and weight checks, and constantly working on things that come naturally to every other baby. It's the thought that, "yeah, well get through all this and manage."

I was able to write about this today because Brady's speech pathologist came this morning. She was very happy that his attention on a face lasted for over 20 seconds... she said this was the beginning. Smiles come from mimicking, as well as other sounds and facial gestures. If he is focusing now on faces, the smile is not too far behind. What a weight off my shoulders! Just knowing it may happen at some point with concrete evidence is enough to make me relax and go back to just enjoying this adorable little creature.

Wednesday, July 05, 2006

Happy Independence Day!

Well, out here in New England there were parts of the area getting sunshine and parts getting rain on the Fourth of July... yup, we were the rain. And if we had nothing to do, it would have been beautiful. But, because we had a small bar-b-que with 10 kids, it was going to rain... then stop... then rain... then stop... thunder... thunder... thunder... stop - all the time with humidity and bugs. We still had a great time of course, but I just wished the weather would have cooperated more.

Brady's first Fourth of July was great. He wore the appropriate clothes, all red, white and blue. He went swimming, first in the little baby pool then with me in the larger pool. He didn't cry, so I will take that as he loved it! He kicked a lot and kept looking down at the water. He even watched some fireworks that we set off in the backyard. He didn't jump as much as I thought he would at the loud noises... must be because he's used to Michael being around all the time. For those out there with 7-almost-8-year-old boys, you know they're louder than ANY fireworks!

Tuesday, July 04, 2006

Who's the mother here?

Brady seemed to be not quite happy. Because his formula is concentrated, that has usually been the reason, especially for any gassiness. However, remembering that rice cereal can act as a binder, I decided to switch him to oatmeal cereal and see if it changed anything. Since I switched him from rice cereal to oatmeal cereal he has been taking longer naps and seemed to be less irritable. I was surprised, because I didn't think the rice bothered him because he had been eating it for over a month, but I really think that was the culprit.

The funny thing was the way in which I switched him to oatmeal. You see, whenever I wondered something about Brady, or my other son too for that matter, I would call my mother. We would discuss it, plus any other related issues; she would tell me what she did when I was a baby, then we would discuss how mothers today are so different, yada yada yada. Then, I would discuss the problem with my friend who is a pediatric nurse. She gives me professional opinions, plus her own experiences. I would usually touch base with a friend or two as well. Now with Brady, add in the fact that I would then discuss it with his pediatrician, who I would see every other week, and then with his specialist too, like his physical therapist or nutritionist. Only then would I make the next move.

I am ready to admit things with Brady are definitely different than with my other son. Brady's food intake is pretty closely monitored, as well as his general health, because I need to keep an eye out for any signs related to his heart problems. I SHOULD check with the doctor if he seems exessively gassy, as that may mean a change in his formula; I SHOULD check with the nutritionist if he still seems more hungry after his feeding , as that may mean a graduation to the next food level; I SHOULD report to his physical therapist when he favors one side to another.

However, the oatmeal change just happened. I was at the store. I bought oatmeal. I put it in his next meal. He lapped it up. His irritability seemed to go away almost instantly (probably not, but that's how it felt). And we've done it the same way every meal since then. I think a friend did mention to me that rice was a binder, reminding me that it could be the reason for his discomfort, but that was the only discussion I had about it.

Wooo... what's going on?? Am I back to making decisions for my son? Could it be that I may feel that I know my son well enough now to gauge his reactions? It's very difficult with a child with Williams Syndrome -- often they don't give you much to go on, especially at only 8-1/2 months. I'm glad that I'm not totally alone on raising my children. I take great comfort in knowing that I have a huge support system out there; especially with those people who have letters after their names and are more knowledgeable than I on many subjects. And while I am just one of the many taking care of Brady, it seemed like that was all I was, one of the many, not his mother, the supreme being of all.

But with a little oatmeal... I am back to feeling that yes, I am his mother; that although my son has William's Syndrome, I still know and can make decisions about my son. It has made me feel like... his mother.