Precious Blake

In Loving Memory of Blake Hill

Rest in peace, baby boy.

We love you.

Our deepest sympathy to Troy, Whitney, Brandon and all who knew and loved little Blake. May God grant you peace.

The Monahan's

Kim, Justin, Dominick, Laura, and Ava

Ava's Home!

Ava was released from the hospital today. Basically, the past week was wasted time. Yes, she is feeling better and is now tolerating her feeds. However, we left today with no real plan of care. It's almost impossible to get the doctors to listen. It's completely impossible to get them to act. Consequently, Ava is in the same situation she has always been. Wait and see. Oh, and did I mention she has now picked up a nice respiratory infection? Just another benefit of hospitalization. Oh well, at least she is home.

We were able to visit with Whitney and little Blake. Whitney is such a beautiful girl. Pretty, smart, kind, and totally devoted to making her baby well. I don't know how she finds the strength to keep going. The PICU is not a happy place. It's noisy and just plain scary. Yet Whitney puts a smile on her face and just does what has to be done. I am so proud of her.

A HUGE thank you to Amy! She drove all the way from Indiana to visit Blake and Ava. What an amazingly thoughtful woman. Unfortunately, when she arrived Laura and Justin had gone back to the hotel to rest because Laura was just too ill to sit with Ava. So what did Amy do? Played with Ava for nearly an hour so that the nurse could take a break! See what I mean?

I am an inconsistent blogger. I don't provide as many details as I should, and I certainly could post more often. Still, all of you put up with me. When times are hard the WS grapevine kicks in and everyone rallies around. I don't know many people who have such a wonderful support system. I can't thank all of you enough. Your advice and good wishes keep me, Ava, and our whole family going strong.

Much love to all of you!

PS: Tatum's mommy, Lisa, is crazy. I have witnesses.

Update

First of all, let me just say that I have had all I can take of Williams Syndrome. Happiness gene, yeah, right.

Second, I have been avoiding all of you because it breaks my heart to hear about illness and surgery and angry outbursts from our kids who are blessed with the aforementioned happiness gene. I am currently unable to make sense of a genetic deletion that can bless a child with a beautiful personality and the gift of empathy and at the same time curse him with life-threatening cardiac issues.

Third, my sweet Ava is in the hospital again. This time it was a nasty virus that took her down. She was an inpatient for a week at Sparrow hospital, went home for a day or two, and now is at U of M. The poor baby just cannot eat or drink. Consequently, she dehydrates really quickly and really severely. Her doctors were concerned that her organs were beginning to shut down, but it seems that that crisis has been averted. It looks as though she will be getting a j-tube, which hopefully will get the food where it needs to be without causing such chronic vomiting. I hope so, because she has been steadily losing weight. She is lethargic and just not "Ava". I'm keeping my fingers crossed that she will turn a corner soon, because she has been too sick for too long.

Last, but certainly not least, please pray for Whitney and her family. Things are as bad as they can get for her. Blake's prognosis is very poor. Laura and I feel very blessed to have met Whitney and Blake yesterday. She's such a sweet person, and little Blake is trying so hard to survive. Unfortunately, they are so far from home that it's very difficult for their family to be here. Thank goodness Troy is here right now, because Whitney should not be alone. I don't even know what else to say. It's just incredibly sad.

"Suffer the little children to come unto me, and forbid them
not: for of such is the kingdom of God." Mark 10:14

Ava's First Haircut

Great-grandma gave Ava her first haircut last weekend. Isn't it cute?

Good News

I was beginning to think my Christmas spirit would never kick in this year. I didn't send any cards. I wrapped the gifts haphazardly, basically just covering the important parts and slapping a self-adhesive name tag on the top. No bows this year. I didn't play my Christmas CDs. I didn't even decorate the tree until December 23rd. I finished my shopping on my lunch hour, December 21, at Walgreens, of all places. It felt like I just barely managed to go through the motions this year. Fortunately, everything changed at the eleventh hour.

For the very first time ever, my son, Justin, invited me, my mom, and Dominick to come to his home for Christmas Eve. Ava just wasn't portable this year. And you know what? It was wonderful! We munched on nachos, veggies & dip, potato salad, and drank Jagermeister. What a combo, huh? It worked for us just fine, thank you. Ava was an absolute doll all night, giggling and hamming it up. I bought her a Fisher-Price musical stage, which she adored. It has a mirror on it, which was covered in Ava kisses in no time. We all enjoyed ourselves very much, even though our evening was completely different than our usual celebration. I guess sometimes it is good to shake things up and just let go.

The best news is that Ava has made such good progress that she is now off her 24 hr feedings. She now is able to eat pureed foods and clear liquids by mouth all day, with the tube feedings just at night. She has gained 2 1/2 pounds since December 13. Awww, just like her grandma!

By the way, I am officially "the best mom in the world" according to Dominick. It seems Santa brought Guitar Hero III. Apparently GHIII is the hot game this year, because we sure have had a lot of company since Christmas Eve. I hope the novelty doesn't wear off too soon, because I haven't seen Dominick enjoy himself this much in a long time.

Dominick took the picture attached to this post on Christmas Eve. That's our tree, alright, but it seems to look much prettier in the picture. Good job, Dom!

I wish all of you, and us, a very happy New Year!

The Latest News

These pics aren't brand new, but they are so Ava, I had to share.

Whew! Things have been just crazy chaotic around here. I have taken to leaving myself voicemails, writing notes, and setting two alarm clocks just to minimally function. My Christmas tree STILL looks like a lonely green stick in the corner of the living room. No time to decorate this year. My Christmas baking consists of a bag of bonbons I purchased at the dollar store. I haven't even had time to return phone calls. *sorry, Linda* Pathetic, isn't it? Best of all, I had to report for jury duty this morning. Thank goodness the defense attorney used one of his peremptory challenges to get rid of me. As stressed out as I am these days, his client, who was charged with domestic assault, would have been killing time in the county jail.

On a lighter note, Ava is doing so much better. The visiting nurse has been, um, visiting every day, which is such a help for Laura. Ava still is refusing most foods by mouth, but her color is great and her spirits are high. It does my heart good to hear her laugh! I'm wondering if all these extra calories are giving her more energy. She even seems to be talking more. Today she said "Bompa", bye-bye, and luv ya. She has started hugging her stuffed toys. Also, instead of just passively enjoying her television shows she seems to really get into them now. She laughed out loud at something that Moe, the Doodlebop, did on today's episode.

I believe that your prayers and good wishes are healing our sweet little Ava. Thank you all so much for your concern and great advice. It means so much to us to have all this kindness and compassion bestowed upon us. Ava has a long way to go, for sure, but she has a great mom and dad and lots of friends and family to help make things bearable.

I love Ava so much. She's all I want for Christmas~

Happy 2nd Birthday, Ava!

She's Home!

Ava came home today! A little groggy, a lot sore--but she is HOME. Funny how her equipment-tubing, pump, etc.-isn't nearly as intimidating out of the hospital setting. Now she is just my sweet, funny granddaughter again. I missed her.

Now that the immediate crisis has passed, it's time to get down to the details of caring for a child who is tube-fed. I have no experience whatsoever. I have lots of questions and concerns, as do Laura and Justin. Ava is still retching and gagging. She is refusing anything by mouth, except for the ever-present Mam pacifier. We tried to get her to lick a popsicle tonight, and even touching the darn thing with the tip of her tongue just disgusted her. Danielle, our local WS expert, says that this WILL pass. We have no choice but to believe her. Danielle has also invited us to a G-tube group that meets at the mall on Tuesday evenings. After the holidays I am hoping that Laura, Geri (her mom), and I can attend. We need all the help we can get.

I am scared, yet anxious to start learning. It's either that or give up having Ava for the weekend, and that is not an option. Laura said that Ava has to return to U of M in a few weeks to get a "button", which should make it much easier for Ava to return to her normal activities-or maybe a new version of normal. Until then I guess we all just muddle through the best we can.

I need advice about something. Laura is not eating, except when Ava is sleeping. She feels it isn't fair to eat in front of her. Laura is a tiny little thing, probably a hundred pounds soaking wet. How can I convince her that it's OK for her to eat in front of Ava without guilt? I don't want Ava to think the whole world stopped eating because she did!

This grandma is signing off and going to bed. I was 3 hours late for work today because I was too exhausted and stressed out to function. I will update again soon, hopefully with some pictures of Miss Ava.

Good night.......

Ambivalence

Update: Ava had a stat upper GI today (Monday, December 17, 2007)because the docs can't figure out why she can't stop vomiting. She's even vomiting in her sleep, poor baby. Our feeling is that she is being overfed, but the experts don't agree. They are keeping her yet another night for observation. We are praying that she is better soon. She deserves better than this.

Ava is still in the hospital. The poor little thing keeps falling through the cracks, so to speak. Someone "forgot" to write orders for her pain meds, consequently her morphine was taken away and replaced with simple Tylenol. Every time she moves she does that silent scream that tells us she hurts so bad she can't even speak. She has been retching and vomiting. Her g-tube keeps backing up. Her doctor has the bedside manner of Hannibal Lecter. Michigan is in the midst of a wicked snowstorm that is threatening to paralyze traffic. And Ava's birthday is five days away.

What have we done?

Ava's hospital stay hasn't been all bad. We were blessed last evening with a wonderful nurse, Martha, whom Ava loved immediately. As soon as Martha said hello, Ava started smiling and blowing kisses to her. Also, some angel saw to it that orders were written for Tylenol with codeine, which really seems to help. To top it all off, John, the host, brought Ava a VCR and a collection of Barney videos, which she seems to adore. Boy, does that bring back memories! That purple dinosaur is going to live forever.

Best of all we have been receiving great advice and moral support from Danielle, a WS mom from Michigan who is an amazing source of information. Her little girl has been through this exact procedure, so Danielle has practical advice that is invaluable. Still, we are second guessing the decision to have this surgery. How do you know you did the right thing?

Surgery Update

It's 12:05 a.m. and we just made it back to the hotel. It's been a long, difficult day but we survived it. More importantly, Ava survived it. When I left the hospital she was resting in Grandma Geri's lap, snoozing the best she could. She was in so much pain tonight. She was given morphine for pain, and Tylenol to help bring down her 101 degree fever. The surgery was a success, thank goodness, but Ava has a long road ahead. All of us are hoping that she can grow and thrive now that the constant vomiting will cease.

We arrived at the hospital at 11:30 a.m. only to discover that pediatric surgeries were running at least two hours behind due to some procedures that took longer than anticipated. Perfectly understandable, but poor Ava, she had to go without food or drink for many hours. True to form, she did it without complaint. Thank goodness for Mam pacifiers! The great part is that instead of having to go from one place to another, the staff comes to the patient. We just hung out in the pre-op waiting room, and nurses, doctors, and support staff seamlessly coordinated their visits with Ava. She was such a happy baby, all hugs and kisses for anyone who would give her a glance. She's such a little trooper. Because they needed to insert her IV prior to sedation we weren't allowed to escort her to surgery. Not a problem, she held her arms out to the doctor and let him carry her off. What a great kid.

Friday will bring g-tube training. I am confident that Laura will be an expert on tube feeding by the end of the day. She has been remarkably calm and focused. I, of course, have been of very little help. I cry when I see Ava in pain. Now, I am supposed to be providing moral support here, but unfortunately I seem to fall apart when I see that baby cry!

Thanks for keeping Ava in your prayers. I'll post a progress report soon. Until then, Happy Friday!

Ava's Birthday and Heather's Post

Ava Mae will be two-years-old December 21, 2007. From an Apgar of 2, to a beautiful, vibrant, thoroughly loved little girl. My heart is so full of love for this child. She is the sun we orbit, the glue that bonds two families and countless friends. We are so blessed.

If you are so inclined, you can send birthday wishes to her at turner_laura122105@hotmail.com.


Caleb's mom, Heather, posted a story that really choked me up. If you haven't yet, head over to her blog and read A Good Story and remember to bring some tissues. You're going to need them. Her story reminded me of something that happened in our community less than a month after our own tragedy during the summer. It was so upsetting to my family that I couldn't even write about it until now, thanks to Heather. It hurts to read about April but, sometimes we are faced with worst-case scenarios that open our eyes.

My guess is that all of us from time to time worry about what will happen to our special needs kids when we are old, infirm, or otherwise unable to care for them. I know I worry about Ava. The story Heather tells is a heartwarming reminder that sometimes people really do care. And also a reminder that it is never too early to plan for our kids' futures, even when we aren't sure we can get through today.

I am a nervous wreck about next week's surgery. I will post from the hospital, hopefully, and keep you all informed about her progress. Until then, have a blessed week.

Feeling the Love

I grew up last Saturday.

The Great Lakes region of the Williams Syndrome Association held a holiday gathering in Troy, Michigan. Dominick, Laura, Ava, and I packed up the car and drove a couple of hours south to our very first WS gathering. All the way there Laura kept telling me she was very anxious, sweaty palms and all. I, of course, being wise and mature, assured her there was nothing to be

afraid of, that we were going to have a great time. Besides, the party was being held in a church, and how scary could that possibly be?

When we walked in the door I was humbled, rendered speechless. All these faces, WS faces, and I was momentarily stunned. Ava's peers. This is her future. This is as good as it gets.

The next thing I knew, Ben Monkaba, beautiful Ben, welcomed us personally. A huge grin on his face, he thanked us for coming and directed us to the check-in area. Next, a lovely young woman (also WS) offered to take our cake that we brought to share. Another young lady appeared and took our coats. And all of us felt IT. That church was literally bursting with love. I have never experienced anything like it, ever in my life. Even Ava felt it. She was in her glory, smiling and hugging anyone she could. She even suckered Terry Monkaba into cuddling with her and carrying her around the room.

After we got settled and the introductions were out of the way, music therapy began. Ben Monkaba and Louie, the music therapist, led the group expertly. Everyone joined in, even the kids with hyperacusis. They just sat at the back of the room. We sang Christmas carols, shook our jingle bells, and just had a rousing good time. Ava didn't quite know what to do, but I could tell she was thoroughly enjoying the music. She was swaying to the beat and just taking it all in. Heck, everybody was loving it. We took lots of pictures, but I don't think it is appropriate to post them without consent. I wish I would have thought of that before the party ended!

We met a number of really kind people, exchanged some phone numbers, received great advice, ate lots of yummy food. It's a brotherhood (or sisterhood), this WS thing. By virtue of having a child with WS, you belong. No questions asked.

The evening was capped off with a live band, of which two members have WS. Ben Monkaba kicks butt on the drums! It was so cute. The teenagers were dancing next to the stage, arms waving as though they were at a rock concert. I half expected to see some Bic lighters flashing. Even Ava got up and danced, toddling along with some of the older folks. It was a beautiful, enlightening, and comforting evening.

WS is not the worst thing that can happen.

Update: Ava is spontaneously standing up and walking these days. Not all the time, because crawling is still so much faster. Still, she's progressing now in measurable ways. She has also learned how to open cupboard doors. Ouch.

Her surgery is scheduled for December 13. Please pray for her. She is our world.

Lovin' my family...

Durn Good Vittles at the Middleton Diner

Thanksgiving was fantastic!

I welcomed the morning somewhere around 10 am, drank some coffee, and caught the tail end of the televised parades. Ahhhh. No stress! No waking up at 4 am to stuff a bird. No panic attack because the potatoes are runny. No giant pile of dishes to wash while everyone else watches football. And best of all, I had pumpkin pie for breakfast, with whipped cream on top. Mmmm.

The Middleton Diner is quite a landmark around these parts. Owned and operated by Mennonite folks, the diner looks like a greasy spoon from 1960. Remember that chrome table your grandparents had? It's at the Middleton Diner, along with the vinyl covered chairs that completed the set. Waitresses dressed in homemade cotton dresses with matching aprons scurry around filling coffee cups. I felt like I was 6 years old again, having dinner with my grandparents after church. The food was great, the company even better, and I really couldn't be happier.

Ava is doing so well these days. It's hard to believe that in a week or two she will have surgery. None of us is looking forward to it, dreading it maybe. I just hope she adjusts well to the g-tube, and that there aren't any complications. Please include her in your prayers!

Pie and Gratitude

My favorite holiday will be here in three short days. Every year I take a few private moments to ponder those things for which I am grateful. At first I thought I wouldn't be able to create even a short list, because 2007 has taken some devastating twists and turns. I, and my family, have faced death, disability, financial problems, and loss. Yet, we always seem to muddle through, usually stronger and wiser. The following are a few of my blessings:

• My neighbor, Gwen. She is kind and thoughtful and always willing to lend an ear. We meet over burning leaf piles, cross paths with our lawn mowers, and share great kid stories. What would I do without her?
• My mom, Fran. Always each other's right hand gal. We take care of each other in many ways. Whether it's a listening ear or twenty bucks until payday, we are there for each other.
• My children, Justin and Dominick. They are opinionated, strong people who never cease to amaze me.
  
• Laura. My almost-daughter-in-law, mommy to Ava. I love that girl's sweetness and total dedication to my granddaughter. She never gives up. She's realistic about Ava's limitations, but she is determined that Ava will have every opportunity to grow and learn.
  
• My friend, Geneva. Faced with infertility, she and her husband adopted FOUR special needs siblings. In addition, she manages a very successful home business, home schools her children, cares for her elderly mother, and is a home improvement guru. She installed her own satellite dish, garage door opener, dishwasher, sink, faucet, tile, and suspended ceilings. She is an expert seamstress, grows a beautiful garden, and preserves those same fruits and vegetables. Once I visited her and found her at the clothesline, skinning a rooster! Oh, yes. He was picking on the hens, so she killed him, skinned him, cleaned him, and cooked him for dinner. Geneva is my hero!
• My job. I know I complain quite regularly, but I am truly blessed to have steady employment. Michigan is in dire straits these days. Anyone who has a job and health insurance is lucky indeed.
• Ava, my beautiful Ava! Always in my heart, every minute of every day. She gives love so freely. She can light up a room with her smile. She suffers without complaint and gives so much more than she takes.
  
• My blogging friends. Your kind words, knowledge, and valuable advice get me through the tough times like nothing else can.
• Our American soldiers. No matter what your opinions about the war, these young men and women sacrifice so much for our country. Give them a shout out at LetsSayThanks
  
• PUMPKIN PIE. My mom makes the most delicious pumpkin pie. Just the right combination of flaky crust, sweetness, and spice--with a huge dollop of whipped cream. Oh yeah, life is GOOD!

Have a wonderful Thanksgiving!

Melancholia

Usually when I post about Ava I like to emphasize the good, minimize the bad. Unfortunately, a missed dose of Effexor XR and the ill-will of the estrogen goddess have me in a funk. I don't feel like sugar coating anything today.

Like all kids with Williams Syndrome, Ava has a myriad of health and developmental issues. Here's a tidy little list for you:

• SVAS, or supravalvular aortic stenosis. Always there, lurking, waiting for an inopportune time to send Ava to surgery. Probably responsible for her cold, somewhat blue extremities.
  
• Spina bifida occulta. Sometimes referred to in our family as "Ava's double butt crack". A bony protrusion from her tail bone, with deep dimpling. You can literally grasp it with your fingers. Feces get stuck in the dimple, and the skin over it actually bleeds. The doctors seem to think it won't cause any problems. Yeah, right.
  
• Chronic constipation, even with daily laxatives.
• Severe gastroesophageal reflux with aspiration. Daily vomiting and retching. Inability to eat much more than Gerber puffs, stage 2 baby foods, and Pediasure, all in very small amounts.
  
• Anxiety. I can see it worsening, and it scares me.
  
• Sensory issues. Ava scratches and digs at any exposed skin. She is a "picker". She loves to jump, shake her head vigorously, and spin things.
• Visuospatial issues. Ava sits, crawls, stands VERY CAREFULLY. She is unable to stack blocks or put toys in a bucket.
  
• Speech delays. She can say mama, amma, wha-ah-yah, and sometimes dada.
  
• Gross and fine motor delays. She can toddle a little, but not much. She cannot point or pick up a cheerio with her thumb and index finger. She has adapted though, and can shovel in the Gerber puffs with her other fingers.

Ordinarily I don't dwell on Ava's disabilities, but this week has been so hard. I am so worried about her. She has a cardio appointment next week in preparation for her upcoming Nissen surgery. She had to miss her photography appointment today because she couldn't stop vomiting. And she has started grinding her teeth. Anxiety, I suppose. It just isn't fair, you know? It hasn't helped that at work we have had an influx of very healthy babies born to some moms who really shouldn't even be allowed to parent kittens. I know I should be grateful that Ava's health issues aren't worse. I know it is not my place to judge others. But sometimes it just hurts. And you, dear readers, are the only people who understand.

The Latest News

Finally we have a date for Ava's fundo surgery. If everything goes as planned, Ava will be at Mott Children's Hospital in Ann Arbor on December 13. Her surgeon, Dr. Hirschl, comes highly recommended and has a list of credentials as long as my arm. I am confident that he is one of the best and will take good care of our girl. I sent along a full page of questions with Ava's mom and dad, and the doctor patiently addressed all of them.

I am so afraid of Ava having general anesthesia. I think it scares me more than the surgery. I know the benefits outweigh the risks, but even the tiniest possibility of losing Ava makes me physically ill. Fortunately, her heart is holding its own. The SVAS is not improving, but it also isn't getting any worse.

I haven't elaborated much on Ava's reflux problems, but she suffers so much. The poor little thing retches and vomits daily, sometimes many times a day. If her tummy is bothering her she can gag just looking at a sippy cup. She's still on a twice daily regimen of Prevacid and Miralax, and three doses per day of Reglan. This has been going on since she was born, with no improvement. So, yeah, she needs the fundo surgery. Who knows? She might even make it past 19 pounds once she stops vomiting.

I have had such a hard time writing anything lately. It feels like work! It's either ADD or just plain laziness. I have so many things I would like to share through this blog, but I can't seem to force myself to get the details from my brain to the keyboard. I apologize and hope to get my groove back one of these days.

Correction!

Well, it turns out Ava is NOT having surgery this Friday. She will visit U of M for her preop visit, which is much easier for this grandma to swallow. I can handle not attending the preop visit, although I am sending a list of questions for Laura to ask the surgeon. This surgery is completely freaking me out. And for me, the only way to rid myself of fear is to learn. Somehow, knowing the details demystifies the procedure and makes the fear manageable. Hopefully, this esteemed surgeon/professor/department head will have a personality and be willing to talk to Laura in layman's terms. Sometimes docs with the best credentials are complete duds when it comes to people skills. I'm keeping my fingers crossed.

Ava loves to play peek-a-boo. She covers your eyes with her hands and you have to ask, "Ava! Where are you??" And I do mean you HAVE to ask. Otherwise the hands don't come down and she shouts "A-Buh!" Well, this weekend we were playing yet another game of peek-a-boo, her hands covering my eyes, when all of a sudden my "Ava!" was followed by the cutest little voice exclaiming, "Wha-ah-you!" I couldn't believe my ears! This is a child who has an extremely limited vocabulary, basically mama and amma, with an occasional A-buh when asked her name. And now she wants to know wha-ah-you?

I'm right here, baby, anytime you need me!

I love you, Ava, more than sunshine or ice cream, gentle rain or love notes.

You're the best thing in my world.

*kisses from Grandma*

Diary of a Mad Grandma

I apologize for staying away so long. I have been so distracted for the last month that blogging just didn't get it's turn at the top of the list. Also, I have been a total grouch.

Here's an update, in a nutshell:

1. Mom had surgery.
2. Mom is fine, but feeling very sorry for herself, which of course DRIVES ME CRAZY.
   
3. The house is falling apart. The water heater croaked, the kitchen plumbing died, the lawnmower is broken, the car is on empty, and Harold has fleas.
4. A tree fell on our house last week after a nasty thunderstorm. Of course there wasn't enough damage to warrant the insurance company buying me a new roof. Just a big mess for me to clean up. Darn.
5. I have plantar fasciitis, which makes me feel, and walk, like a very old woman.

Ava has had quite a month. She had a pH probe a few weeks ago, the results of which were very disappointing. It seems our Ava will be having a Nissen fundoplication on November 2, 2007, at the University of Michigan. I am all for anything that will improve her quality of life, but this particular surgery just scares me, especially the G-tube that comes with it. I am so afraid that all her hard work at feeding therapy will be lost. And I just cannot bear seeing Ava in pain.

To add insult to injury, I can't have time off work for Ava. You see, I will be in an Emergency Preparedness meeting November 2. I won't be available for Ava and her parents, because I must be trained and ready to respond to the needs of the PUBLIC. However, I was told that, "If you truly feel this is an emergency for YOU, then an exception COULD be made. But our HOPE is that you will attend the meeting." Yeah, right.

On a lighter note, our little girl walked! Oh, yes she did--all the way across the room! She toddles side to side, looking ever so much like little Clare. Mind you, she can't do it on her own. You have to stand her up and tell her to walk, but she does it. I am so proud of her!

Role Reversal

My mother had shoulder repair surgery Tuesday. Her doctor, a tiny redhead who looks just old enough to buy lottery tickets, did a bang-up job of making Mom whole again.

There were a few problems post-op, including an O2 level that seemed to hover around 80. Poor girl, she now seems to be developing a respiratory infection, accompanied by a nice fever. She is bruised and bloodied, somewhat loopy from the Vicodin, and really, really sore.

Strangely enough, I am ENERGIZED by all this excitement. THIS I can fix. I can bathe her, dress her, speak with her doctors, pass meds, administer breathing treatments. I can transport her to appointments, curl her hair, smooth lotion on her skin. I can tuck her in and kiss her goodnight. It feels completely natural, and necessary, for Mom and I to switch roles for a while. She has been through so much this summer. It's her turn to be nurtured. Please keep her in your prayers, OK?

Now for some good news. Ava has finally called me by name. Yep, my new moniker is....

Drum roll please....

AMMA

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.