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.

Special Mothers

THE SPECIAL MOTHER
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."

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.

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!

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.

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!

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.