The times, they are a'changin'

It's official. My baby is not a baby anymore. My 14-year-old son, Dominick, is a high school freshman. It happened in the blink of an eye. Just yesterday I was carefully assembling his backpack and pinning notes to his shirt. I was the snack mom, cubing his favorite colby-jack cheese to share with his classmates. My refrigerator was covered with assorted glitter-covered construction paper love notes professing "My mom is the best mom because...". I JUST removed the black silhouette of his Kindergarten head, made with the help of an overhead projector and an underpaid teacher's aide. I am grieving, folks.

Dominick tells me that EVERY DAY he is invited to "get high". HE IS ONLY 14, FOR GOD'S SAKE! The girls are getting on birth control. They are surreptitiously making appointments at the STD clinic--yes, they are! The boys are shaving in the morning, and boasting about "getting with" said girls between classes. It's a veritable hormone factory at that school, I tell you! The girls are downright cruel to one another, lifelong friendships forgotten as they compete for boys. And the boys? Too busy worrying about the other boys' sexual orientation and who has the biggest biceps. It's like 1982 on steroids.

This is what our kids with Williams Syndrome won't experience. I think Laura, my sweet, optimistic Laura, summed it up best:

When other mom's are bailing their kids out of jail, I will be home, snuggled on the couch with Ava watching Lifetime movies.

Enough said.

It's a Wonderful Life

After several months of literary constipation, I am back. I have a million things to say, which makes it even harder to write! I am afraid that once I start writing, I won't be able to stop. Or maybe I won't be able to start. Consequently, you are getting small talk. Nothing of great significance here. I'm saving the important stuff for a rainy day.

Justin, Laura, and Ava enjoyed a few days of R & R in Bellaire, Michigan, over the Labor Day holiday. For those of you unfamiliar with Michigan, Bellaire is located on the second joint of the ring finger (think MITTEN). Justin's paternal grandparents, whom I LOVE, arranged for a family reunion of sorts. Everyone had a great time, and it certainly didn't hurt that Justin's cabin was about 50 feet from "The Brewery". Walking distance, if you get my drift. Thank goodness. Why does beer taste better when you are at the lake?

Ava is looking good, isn't she? She is changing every day. She's a long, lean, groovin' machine. I have to get a video of her rocking out to her CDs. It's as if the music just takes over and she loses control! She does everything at full throttle. Even her temper tantrums. I cannot begin to tell you how satisfying it is to watch Justin deal with Ava as she throws herself to the floor and proceeds to do "The Worm" better than a drunken bridegroom. Hee hee.

Last, but certainly not least, Ava stood up all by herself and took one step! Only one, and she hasn't attempted to actually walk since, but you have to start somewhere, right?

Princess

Doesn't Ava look like a little fairy in this photo?

Dominick, I, and my mom are heading up to visit the Mackinaw Bridge area this weekend. I think hanging out near the Great Lakes will be a great way to relieve some stress. Something about the sight and sound of water that soothes the soul. Hopefully we will have some pretty pictures to post when we get back.

Have a great weekend!

"If you can't say anything nice..."

..."then don't say anything at all."

I apologize for my absence. I haven't been able to focus on anything but my family since Memorial weekend. My mom is very needy these days, for good reason, and I am her only child. I haven't been able to concentrate on much of anything besides getting all of us through the day with our sanity intact. Yeah, we have a little co-dependency issue going on, but what do you do?

I just finished catching up on Nancy's blog. I feel like I have been punched in the gut. If you haven't already, you should read God's Hands

I love Miss Ava more than life. She is such a beautiful child. But I, too, see WS seeping into her, both physically and intellectually. It hurts so much to see other people size her up, wondering why she isn't like their children. Right now she is so cute, but as she gets older people will pull away. They won't understand that our girl has faced insurmountable obstacles in her short life. How can they know? I certainly don't want to take on the task of educating the world about Williams Syndrome.

I think therapy is in my future.

Healing

Life goes on. The thank you cards have been sent, dishes returned to their owners, offers of help politely refused. When friends ask, "How are you?", we all reply, "Fine", and sometimes we mean it. But still there is that emptiness, that nagging ache that won't go away. Except when Ava is visiting.

Last weekend Justin, Laura, and Ava spent the weekend with us. It was just what I needed. My girl is so full of love that I simply cannot dwell on the negative. She gets so excited to see me that she just wiggles all over. She is almost 18 months old and I still get breathless at the sight of her. She puts her little hands on either side of my face, plants a sloppy kiss, and then wraps her arms around my neck. Is there anything better? I don't think so. I love her so much.

Update: Ava can drink from a straw! She loves the taste of caesar salad. She can eat almost anything you put in front of her, including cat food. (And Harold the cat is not happy about THAT!) She is crawling very well, and does that climb-your-leg thing if you don't pick her up. It seems that every day she is learning something new. And all of us are loving every minute of it.

I want to thank all of you for your kind words, support, and prayers after Charlie's death. It meant so much to me. I haven't had the emotional strength or energy to comment on your blogs lately, but I am becoming more engaged in the world around me every day. One thing I have to add: If any of you have family members who are depressed, or if you feel that way yourself, please ask for help. Each of us is important to someone, more than we know. For information on suicide or depression, please visit www.suicide.org

Impotence

Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.

I am numb, profoundly sad, and feeling GUILTY GUILTY GUILTY that I couldn't stop him. I did all the right things. I held him, told him I loved and needed him, hysterically begged him to stay. But it wasn't enough. Today my mom's life partner decided that life wasn't worth living. He calmly walked down the hall to their bedroom, lay back on the bed, put the cold, blue steel of his .22 pistol in his mouth and pulled the trigger. Click, click, bang.

So here I am, at almost 5am, awake and alone and trying to make sense of today. Trying to figure out why this quiet man who has been my family for sixteen years decided that today, today, was the end of the road. Why it didn't matter that we love and need him. Why my pitiful attempt at CPR didn't do anything except make a mess. Why I felt his pulse disappear right under my fingertips. Why, aside from the blood on his face, he looked so totally at peace.

Charlie hasn't felt well in a long time, he told my mother today. He believed that he was seriously, if not terminally, ill. He simply could not take the pain anymore, both physical and psychological. He matter-of-factly told her that he was going to kill himself today. That she should leave and come to my house, because he would prefer that she not witness his suicide. And that it would happen even if she stayed.

Mom came to my house today at 2pm, crying hard and asking for help. She told me, "Charlie's going to kill himself."

"Oh, no, HE'S NOT," I replied. And I ran faster than I ever have. I called 911, drove maniacally to their house, and proceeded to beg Charlie to care about himself as much as we care for him. It didn't work. By 2:10pm the deed was done. Neatly, with as little fuss as possible.

So now we are left to analyze the past days and weeks. What did we miss? What could have stopped this horrific tragedy from unfolding right in front of our eyes? And how do we remember Charlie's life without reliving his death?

I pray that God gives us the strength to heal. Because right now it feels like we all took a bullet today.

In Memory of Charles R. Hindall
"Charlie"
December 9, 1933 - May 27, 2007

Peace, my friend

A Rose is a Rose

As some of you may know, I work in public health. This affords me the opportunity to make contact with every freak of nature in the tri-county area. Our agency offers family planning services, STD testing and treatment, WIC, and immunizations. Sometimes all on the same patient.

Caller: Hi, I need to be checked for
dirtiness.

Me, unfazed: Ok, can you come in today?

Caller: Yes, and while I am there, do you do surgery? I
think I have a feather in my ear.

Me: One moment please *pressing the mute
button*

Me: Oh. My. God. while spitting coffee on my computer.

Nutritionist, meeting with WIC client: So how is Junior doing with his cereal?

Client: I don't know how people feed that stuff to their kids. Every time I try, it just blows off the spoon.

As interesting as though encounters were, young parents' attempts at creativity in the baby name department just make my job a never-ending hoot! I may never know how young LuckyBoy got his moniker, but it's a sure bet that he is never going to run for political office!

I can tell that all of you chose your children's names with care. Invincible Erik, the Norseman. Beautiful Clare, with her quiet dignity. Abigale, with her blond braids and kind nature. Feisty Emerson. Sexy Tatum. Exotic Gianna. Sweet, nonthreatening Ava, who loves unconditionally.

And then we have JaFreeda. DaChristian (as opposed to DaSinner?) Mikayla/Makayla/Mequella. Tank (who weighed in at a whopping 5# 15oz) RV (named after the place he was conceived?) JerMichael (not MY Michael) ANYTHING with an apostrophe. It never ends. Have these people never heard of saints and angels? When all else fails, pick an apostle and run with it! Little Tyrongela will be eternally grateful.

PS: The picture of RockStar Ava was too cute not to share. ~K

She Can Do WHAT????

Never underestimate the power of Ava. In the past couple of weeks she has made remarkable progress! My girl has been EATING. Real food. Sloppy joes, cookies, deli meat, green beans. All followed by a satisfied "Mmmmm". Only families dealing with WS can really understand our (my) complete JOY at this turn of events. Woo-hoo! Yeah, the bites are tiny and she can't handle a lot of food, but she is EATING. Wow. Watching her enjoy tastes and textures is like winning the lottery. Today she gave me a kiss after I had a drink of Diet Pepsi and Laura and I had to laugh when she exclaimed, "Mmmmm." It must have tasted good!

I mentioned earlier that Ava has begun to crawl. Every day she is improving. She can crawl, pivot around into a sitting position, pull herself up on furniture, and yesterday she began to cruise from object to object. Laura tells me Ava is "into everything" but I don't believe my perfect granddaughter could possibly be naughty.

In other news, we had a couple of birthdays last week. Justin turned 21 on May 11, and I turned 43 on May 10. My age doesn't really bother me until I think about the fact that my baby is 21! It seems just yesterday he was starting kindergarten, all dressed up in his polo shirt and khaki pants, soccer-themed backpack in tow. Yes, I dressed him like a little nerd. Imagine my horror when all the other boys were wearing athletic shoes and Teenage Mutant Ninja Turtles short sets. Poor Justin. No wonder he rebelled as a teenager.

Mothers Day was fantastic. I, my mom, and Dominick hit the breakfast buffet. Let's just say they didn't make a profit off our table! After breakfast we did a little shopping, giggled a lot, and then visited the kids. Ava was in great form. My mom just loves that baby. It's funny, because my mother cannot seem to speak English to Ava. Usually she starts out with, "Hello precious girl! Come see da gommies!" Ava kind of tolerates it, but she gets this confused look on her face that seems to say "And they think I have problems??"

Side note: Be careful, because this could happen to you. Dominick and I were in the grocery store Sunday and I decided to check out the premade margaritas. As I was perusing the various liquors Dominick opened his BIG MOUTH and said, "Mom, you should probably get the great big bottle. At least then we won't have to come back here EVERY WEEKEND." I just know the man standing next to me thought I needed rehab. Darn kids!

Happy Mothers Day!

Cheese!

It seems my girl has fallen head over heels in love--with the camera. She knows just what to do. OK, I admit to a little bias, but is she not the cutest little tyke when she crinkles up her face in a great big smile? She positively glows! Wouldn't it be nice if we all could hold on to that innocence and lack of affectation?

Ava's language skills are improving. She has progressed from "Bah!" to a chorus of gong-gong-gong la-la-la oon-dah. Oon-dah, obviously, means Grandma. We have learned, undeniably, that Ava does NOT have hyperacusis. She is so loud! Her voice is loud and, shall we say, her other bodily sounds are just as powerful. And she expects applause for all of it! She loves those positive affirmations. Hey, Nancy--what was it Jack Handey said? I'm good enough, I'm smart enough, and darn it, people like me! Or something to that effect.

Speaking of Nancy: She told me a while back to be patient, that Ava would "wake up" soon. Amen to that. Ava is wide awake and ready to rumble. Since I began writing this post last week Ava has begun CRAWLING(!) and also pulled herself to a standing position while holding onto a chair. Can you believe it? Thirteen months of therapy and then one day she just decides that it's time to make a move. Wow.

I included the picture of Ava's feet for two reasons. First, I wanted to show off her new shoes. She absolutely hates them. They make her cry just looking at them, probably because she is not willing to sacrifice comfort for beauty. *smart girl* Second, check out those toes. I hope that they don't cause problems when she starts walking. Through the list serve I have learned that this problem is quite common and that whether or not it causes problems is unique to each individual. So I guess we just wait and see.

The group picture is Laura's family, the Turner's. Clockwise from the top left they are Great-grandpa Paul Turner, Grandma Geri Turner (holding Ava), Grandpa Bruce Turner, Great-grandma Arline Turner, Aunt Lizzy Turner, and of course, Laura. Isn't Ava lucky to have so many people who love her?

The smiling girls are Laura and her best friend in the whole world, Tiffany. Tiffany and her husband and baby are living in Ft. Campbell, Kentucky because her husband is in the Army. It's been very hard for these girls to be separated. Tiffany's husband will be deployed to Afghanistan in September. At that point Tiffany will come home to be with her mom until he comes back to the states. Say a prayer for him, OK?

Frustrated with Blogger, Anyone?

Four times I have tried to post this week. Four times I got an error message about blogger's network problems and try again later, please. Is anyone else having these problems?

I have new pictures of my girl to share. As soon as the cyber gods call a truce I will post an update.

Have a great day!

Venting

My mom has a great blurb: Whoever said life was fair hasn't lived it.

Ain't that the truth.

I was so excited to have a granddaughter. I wanted so much for her-college, boyfriends, a career. I felt that we DESERVED a healthy baby. Laura didn't smoke, drink, or eat unhealthy foods. She exercised daily, got lots of rest, and took her vitamins religiously. And even though Ava was unplanned, no family could have loved her or anticipated her birth more than we did. Enter Williams Syndrome.

I work in public health. Day after day after month after year I talk to women who, with their "fiances", are popping out one healthy baby after another. No matter the drug use, welfare dependency, multiple fathers, unemployment, chlamydia, siblings in foster care: they always manage to keep making more healthy babies. And bitching about how hard it is to be burdened with children. At one point I seriously considered taking a leave of absence because I HATED THOSE WOMEN!!!! I actually said to one complainer, "Well, aren't you LUCKY to have such a healthy baby!" It was all I could do to be civil, let alone give a damn about any of them. Sadly, if I let myself think about those days too much the rage comes back just as harshly as ever.

So what changed? I met all of you! Although we are all scattered, I know that a quick post or email will bring the support that I and my family need. I found this network because Teresa, WONDERFUL Teresa, sent me an email through the listserv with a link to her blog. It was the best thing that ever happened to me. Clare Bear's picture popped up and she looked like she could be Ava's sister. And then came Tatum and Erik and Brady and Szabi and Avery and Emerson and Abi and Daven... And suddenly I didn't feel alone or singled out any longer. Every accomplishment your kids' achieve gives me hope for Ava. Your tears and anger validate my feelings. I truly don't know how I could manage without you.

I am so proud of all of you, of us, because navigating these waters has been, and will continue to be, the hardest job any of us will ever have. Yep, even those of us who are just grandparents. It's ok to feel sad and angry. I like to think that we are a real help to each other, even if it is only online. Who else could possibly understand?

So, Nancy, please don't feel alone. Keep sharing your feelings and know that we are all in this together. 'Kay?

PS: This picture was Ava's very first. All I could say (between racking sobs) was, "Oh my gosh, she has Julia Roberts' lips!"

Love you, Baby

I love Ava, I love Ava

Yes, I do! Yes, I do!

Gamma loves her baby,

Gamma loves her baby,

Ava Mae

Ava Mae.....

Doesn't everyone make up silly lovesongs?

The Avanator

Ladies, I need advice to pass on to Ava's mommy. It seems my girl has begun to morph into a manipulative monster, albeit a very cute and funny little monster. It seems she is hitting and biting others, and gagging herself to get attention. It boggles my mind that she could POSSIBLY need MORE attention. Believe me, she gets plenty. So what should Laura do? Ava is too young for timeouts, spanking is not an option, and yet it hurts when the Avanator smacks you in the face! Worst of all is the evil look in her eye as she is smacking you. Once she gets over her irritability she is all love and hugs and smiles again.

All kidding aside, Ava has certainly developed some behavioral issues. The gagging part is no laughing matter. She vomits regularly...every day...because she either stuffs her hand or a toy in her mouth until she gags. She won't settle for anything less than Laura's undivided attention, and gagging and retching is her weapon of choice if mommy doesn't comply. So what do you do? It's getting so problematic that the feeding therapist suggested that maybe Ava needs a psychologist!

Just when you think you have this whole WS thing under control some other issue pops up and the fun starts all over again. I am actually somewhat jealous of some of you, although I am not proud of it. Ava cannot eat anything with texture-nothing but stage 2 baby food. She can't even eat those teething biscuits that dissolve into goo the minute they make contact with saliva. She is working on using a sippy cup but gags most of the time. Often she can vomit just by looking at food. She isn't mobile, although she has begun to roll around. Her sensory issues are getting worse. She is a scratcher and a wheel spinner. (Sheesh...nice labels) I guess we are all just getting impatient. We want to feed her real food. We want her to grow and learn new skills. And none of it is happening fast enough. It would be so nice to know just how disabled she really is and what we could reasonably expect of her.

I am trying really hard to feel grateful for Ava's relatively good health, and I know that we are luckier than so many families. But darn it, is it wrong to want it ALL for your grandbaby? I love her so much!

PS: The pic was taken in July '06. At that point Ava was crazy about standing up and dancing to the ring tone on my phone. So when the photographer needed a way to get her to smile..Voila!. We held hands and danced.

Whew....We Made It

Ava's surgery was a smashing success! She's feeling a little weepy, and a lot sore, but thank goodness it is over! At first it looked as though the doctor over-corrected the strabismus, but we are hoping that it is just a matter of her eye needing to heal. She was in quite a lot of pain post-op so Dr. Angell suggested alternating between Tylenol and Motrin every three hours for a couple of days. She cried...hard and inconsolably....for quite some time in recovery. Laura said that she would calm down for a bit until she heard another baby cry...and then came the sympathy tears. Bloody sympathy tears. Even when she is hurting our little one still feels others' pain.

This afternoon Ava started to perk up a bit. And here is the amazing part: our girl started doing things she has NEVER been able to do before. Laura gave her a little pink puppy Grandma Geri bought her for Easter. It must have been just what she needed, because Ava started hugging the puppy and rocking forward and back with it, as if she were comforting it. She has never been able to master moving her upper body while sitting. Also, she reached over from a sitting position to give Uncle Dom a hug. I don't know if it's just coincidence, but it seems as though her vision has improved drastically since this morning. Can you imagine trying to function in a world that just doesn't look right?

One thing is clear. If love heals, then Ava will be just fine. Today she had me, Grandma Geri, Grandpa Bruce (Papa), Uncle Dom, and Laura to love and cuddle. And she also had all of you sending out love and concern. Thank you all for your kind words. It means so much to all of us.

Love, Kim

PS: Tatum is next in line for eye surgery. It's not too early to start praying for a successful surgery and rapid recovery:) We love you Tatum!

The Big Day

Tomorrow is Surgery Day. As you can see in the picture, it NEEDS to happen. I am so excited for Ava, but at the same time I am terrified that something will go wrong. Fortunately, her surgery will be performed at EW Sparrow Hospital, which is our regional trauma center. My logical brain tells me that Ava will be fine. So why am I so worried that I will have to learn the answer to 'how will I survive without her???'

Yesterday I took her Easter gifts to her, just in case she isn't feeling well on Easter Sunday. Ladies, I highly recommend purchasing a dump truck for your daughters! Ava LOVED it. She also loved the plush duck puppet that quacks out several tunes, but the truck really got her going. *Nancy, my granddaughter is a wheel spinner!* It didn't help that I flipped the truck over and showed her how to spin to her heart's content. I don't know if it's a good idea to encourage the spinning; I do know that Ava loves it!

I will let you all know how the surgery goes. Happy Easter!

Update

It's Friday, after 4pm, and I don't feel like working anymore. What a perfect opportunity to update you all on Miss Ava.

March 14 was a great day. I was lucky enough to take my girl to the geneticist. She sees Dr. Netzloff at Michigan State University's Endocrinology/Genetics Center. Our visit was great! Ava was in a happy mood, she looked adorable, and the weather was warm. Dr. Netzloff is a very dapper, white-bearded gentleman. Ava, of course, thought he was the cat's meow and chatted him up like he was her best friend EVER. He described her as having "a loquacious personality if I have ever seen one!" And he would be right. The kid never stops babbling! We discussed some of Ava's sensory issues, especially scratching, which she does every time air hits her bare skin. We talked about esotropia, clinodactyly, pectus excavatum, hallux valgus, "cocktail party personalities", and various other peculiarities she shares with many people with WS. It felt so great to speak with someone who actually "gets" it. And the best part is....DRs MORRIS AND MERVIS HAVE INVITED AVA TO JOIN THEIR STUDY!!!
We didn't have to seek them out; they came to us! Apparently MSU's genetics department have shared some details about Ava's family history and it piqued the good doctors' interest. They are working on proving that families whose genetic blueprint includes an inversion on the tail end of chromosome blah, blah, blah have a greater chance of producing a child with WS. Ava was chosen specifically because of her paternal aunt who had WS. Strangely enough, other family members have certain idiosyncrasies that correlate with WS symptoms. Laura's dad has pectus excavatum; Laura could only learn math by singing the problems; Laura and her dad are quite musical-you should here the beautiful voice on that girl! *proud mother-in-law grin* So, I am excited and pleased that my precious Ava can maybe help others in some way.

Laura is trying to provide opportunities for Ava to gain some social skills. Every Monday they pack up their Williams Syndrome Association backpack and head to the local library for the "Shake Your Tail Feathers Lap Sit Story Hour". They listen to stories, do crafts, sing songs, dance, and generally have a rip-roaring good time. Except Ava hates the kids. But she LOVES the mommies. After all, the world DOES revolve around Ava and wouldn't every mommy want to give Ava hugs and kisses? Oy, I see this becoming a problem someday!

We went to the pediatrician this week for her 15 month well-child visit and immunizations. Miss Ava weighs a whopping 17 lbs 11 oz, and is 29 inches long. She has low muscle tone in her arms, but her torso and legs are rock-hard. Believe me, she didn't get that from my side of the family!
The pediatrician, Dr. Jonathan Gold, feels that developmentally Ava is somewhere between six and nine months old. I agree, for the most part. However, she is learning something new every day. Who knows? Maybe soon she will start to surprise us all.

The pictures I posted are a couple of months old, but they are so Ava! The one with the pursed lips is her "Am I scaring you?" look. Check out the earrings...Laura won't allow piercings, but she grudgingly gives in to clip-ons! I am going to have to scout out old ladies' garage sales to find some bling for the baby!

Last but not least: Ava's favorite game is "SCARY MONSTER". It goes like this:

Ava: AAAAARRRRRRGGGGGGGHHHH!

Laura: Oooooh, scawy monster!

Ava: *Grin*

PS: I don't have the energy to reflect on WS anniversaries or the listserv. But the posts from those of you who have are so beautiful and heartfelt. I love you guys. Every day you make me laugh, cry, and think. Thank you:)

PPS: Ava's eye surgery is scheduled for April 6, Good Friday. The plan is to straighten just her left eye with the expectation that her right eye will straighten on its own. Wish us luck!

Granny Has Writer's Block

I haven't posted lately because I DON'T KNOW WHAT TO SAY. Every time I sit at the computer my mind goes blank. Tonight I decided the content of the post doesn't matter. It just seemed important to touch base and say "Hi".

Since I posted last I have a new office, a new nephew (actually a first cousin, once removed, but I am still Aunt Kimmy!), an extremely bad lipid profile, and a slightly deformed spine which causes me nasty aches and pains. My son's track team has started practicing, he's entered puberty-GOD HELP ME-and our phone never stops ringing. My mother is ornery, the cat has fleas, and my tires need rotating. It's a good thing they don't tell you in high school what "real life" is all about!

Ava Mae is doing really well. She is still a peanut, weighing in at a hefty 17 lbs. This week I will be taking her to her appointment with the geneticist. I am looking forward to the visit. Hopefully I will be able to quiet my mind long enough to compile a list of questions for him. I am seriously considering breaking into Dominick's Ritalin stash just to see if it will help me focus.

I have SO enjoyed reading everyone's posts. Sometimes it's the only "Me" time I get. If I get inspired sometime soon I will try to churn out a post with some substance. Wish me luck:-)

Hey

When my babies were born I loved them with everything I had. I lotioned and powdered, did the photo sittings, attended preschool graduations...You all know the drill. I love both of them just as much today. But I have to tell you, ladies, there is NOTHING that can compare to being a grandma. If it is at all possible I love Miss Ava Mae more than life itself. That child has taken hold of me. She is ALWAYS with me whether I am at work, driving down the road, whatever. She is there. Doesn't matter that she is not "normal". That little girl's hugs and kisses and smiles help me remember that life is precious. Lucky me, I don't have to worry about therapies and IEPs and the myriad of details that come with the WS territory. I just get to love her!

By the way, Uncle Dom turned 14 on February 15th. Of course we had to go out for dinner. Miss Ava came along and was a social butterfly. She did her best to respond to our repeated efforts to get her to say "Ma-ma". Yep, she replies with a loud and proud, "Bah!" She also sprouted about eight arms and managed to throw her toys, tip over my coffee, and choke herself on a spoon. Business as usual!

Love to all,

Kim

PS: Thought I would let you know before you saw it on the news: I am the father of Anna Nicole's baby.

It's All Good

I read too much. Every day I check in (and on) my cyber friends to see how everyone is dealing with the dreaded Williams Syndrome. It seems that many of us feel that if our children can get this therapy, that supplement, that surgery, all will be well. I applaud everyone's hard work and diligence. But I am also realistic. (I am also perimenopausal, so take everything I say with a grain of salt - or estrogen, if you can spare some!)

I love my Ava Mae with everything I have, yet I know that there are some things that just aren't going to happen. Oh, we will see to it that she has every opportunity possible. She will have her surgeries, her specialists, her OT, PT, etc. She will be constantly and unconditionally loved. At the same time, I will not let myself be crushed when it becomes apparent that there are just some things she won't be able to do. Let me tell you why.

As some of you know, Ava had a paternal great aunt who had Williams Syndrome. Paula Jean Turner was born February 26, 1949 - long before Williams Syndrome had been "discovered". She was a beautiful little girl, but it became obvious that something just wasn't right. Her WS diagnosis didn't come for many years. She suffered the usual feeding issues, kidney problems, hypercalcemia, abdominal pain, anxiety, and so on. Early intervention was somewhat primitive in those days. Paula attended elementary school and later participated in "educational workshops". She lived at home with her parents until her death in May 2006 at age 57.

Never mind the negatives. Paula was so sweet and kind. She was truly a ray of sunshine. She loved being with people, and displayed so much enthusiasm for every good thing that came her way. She loved church, reading, family, music, and Ava! She could play piano, speak some Spanish, and seemed to enjoy life very much. Laura tells me that Paula never lost her ability experience pure joy. Oh, Mylanta! she would exclaim. Paula also had a long-term boyfriend, Bernie, who loved her forever. At her funeral, the minister told us that "Paula never met a stranger." What more could any of us ask of our children than to be universally loved?

It's so easy to get dragged down by all the negative aspects of this damned syndrome. I think all of us secretly hope that our children or grandchildren are higher-functioning, that they have a lesser degree of WS. I cry about it myself, especially when other people seem to notice that Ava is different. But at least for today, I am going to be grateful for Ava-just the way she is.

Love, Kim

PS: Yesterday Ava smiled at me and waved bye bye! My heart is singing!

It's All About Ava!

Here are some new pics for you to enjoy. Isn't she just precious? And her momma is so pretty.

It seems like Ava is changing so much these days. She is eating stage2 foods very well, not needing as much formula, and sleeps at night with just a quick wakeup for a drink. Not bad, considering. The poor baby is trying so hard to learn to crawl, but she just can't get it yet. Still not much to report on her language skills. Again, she is working on it. Her personality, however, is in full bloom! She is so funny. She certainly loves her people, especially her mommy. But let's face it...what's not to love?

I have had a such an aversion to writing lately. I think part of it is reading all those list-serv messages depresses me so much that I don't even want to THINK about Williams Syndrome. I prefer to live in my own delusional world where Ava is perfect. When I think about all the things that are "wrong" this pervasive sadness takes over and then I have a hard time shaking it off. And I am only a grandma; I can't imagine what it would be like if I were the parent and had to take on such overwhelming responsibility. I applaud all of you! Anyway, I love all of you so don't give up on me yet!