Birthday Girl

Happy Birthday, baby!

We love you!!

Thank you, Ava

Oh I believe there are angels among us

Sent down to us from somewhere up above

They come to you and me in our darkest hours

To show us how to live, to teach us how to give

To guide us with the light of love

-Alabama

Ava Mae Monahan came to us December 21, 2005, after a pregnancy about which everyone had an opinion. Dusky and unresponsive, small and imperfect, but a precious miracle that took hold of us that morning and hasn't let go.

Ava has tightened family ties, and created new ones. Deep-rooted connections that never would have existed but for her. Bruce, Geri, Paul & Arline, Matt & Lizzy, Becky--I am honored to know you and share in the love we have for our niece and granddaughter. She is a blessed gift.

I Made a Mistake!!

I made a mistake while adding links to Ava's site. I accidentally omitted a crucial "s" in Brady's link. So, if any of you were directed to the lesbian/bisexual site, I APOLOGIZE!!

She's a Big Girl Now

Our baby girl is growing up. She will be one year old December 21. It's been quite a ride!

Ava can clap her hands, sit up, sleep (almost) all night, and light up your world with her pretty smile. It seems she is in a growth spurt now, and is filling out her 12-months clothing pretty well. She is so funny...one minute she's wrapping her little arms around you and planting a slobbery kiss. The next she looks you in the eyes and says, "Arrrgh!", hoping for your pseudo-terrified reaction. Grandma Geri taught her that trick!

Ava is learning about speech. One night I offered her a choice between her bottle and her pacifier. Lo! and behold...she reached out for her bottle and said, "Ba-ba". I KNOW she knew what she was saying. Also, I heard her trying to say "Papa". She stretched her bottom lip up over her top lip and blew air to make the "p" sound. Needless to say, Papa is gonna love that one!

I have been working out of town for the last couple of months, so I can't stop in to visit Ava everyday. Sometimes I miss her so much it hurts. She never fails to brighten my mood. After Christmas I will not be traveling anymore, thank God! Life just isn't fun without my daily Ava-fix:-(

Here are some recent pictures for you to enjoy. The date stamp on them is incorrect. All were taken recently. I will be posting more goodies soon. Until then, be healthy and happy!

Meet the Parents

Shame on this grandma for not introducing you to Ava's parents! Actually, I have moved up in the world and am trying out my new scanner. I am pleased to introduce my family: Justin, my oldest son; his fiancee Laura, the best mommy in the whole world; and of course, beautiful Ava before we had any idea that something was seriously wrong. Aren't they beautiful? I am still learning how to adjust the image quality, so bear with me. Still, I love this picture and I am delighted to share it with you.

I am so proud of the fact that these kids, 18 and 19 at the time, have met their challenges head on. They are good, loving parents. Justin works full-time so that Laura can devote every possible minute to Ava's care. I applaud them both. Thanks to them, I have met my soulmate.

Blogger, Behave!

Hopefully these pictures will actually post!


Isn't she sweet?

They're Here!

Ava has two teeth! We thought they would never arrive, but two of the little devils sprouted last week. Laura discovered them by accident when Ava decided to bestow a slobbery kiss on her, and Bam! that hurt! She is going to look just adorable when they grow a little. We think maybe it was my mom's promise of a big steak that finally convinced Ava to get busy. Unfortunately, the poor kid also got a fever, runny nose, and cough to go along with her pearly whites. Nobody rides for free, huh?

We did have a little excitement over the weekend. My ex-husband, Dan, finally decided it was time to meet his granddaughter. Yep, 10 months old and she had yet to be introduced. Funny how folks have different priorities. Anyway, Ava just kind of looked at him as if to say, "I'm sorry..have we met?" My brain says it's a great thing that Ava gets to know her "other" grandpa, but my heart is hard. Where the hell was he when I was calling constantly to update him on her condition when we truly thought she would die???? There was a point when she was in the hospital that I literally thought I would never stop crying. No kidding, it was brought to my attention by a "friend" at work that I should think about Ava on my "home time" and just concentrate on work during my "work time". Yeah, right. The poor baby's colon protruded out of her body looking for all the world like a piece of raw meat.

I need to remember that the people who love and care for Ava are right here where we belong. And we ain't going anywhere!

I really want to post some links to other websites and blogs on here but sadly, I don't know how. Please help me, or I will have to ask my 13 year old son. And he already thinks I am from another planet.

Until next time, be well everyone!

She loves me!

Good news! Ava spent the weekend with me. I do believe she is crazy about me! As you may have guessed, it's a mutual attraction. She is starting to give hugs--arms around the neck, head on the shoulder hugs! I can't even put into words the effect those hugs have on me, heck, on all of us. It's like a full-body sigh. Aaaaaaahhhhh.

We discovered something else. Ava has developed the ability to experience empathy. Dominick and I pretended to cry, just to see what she would do. Sure enough, her bottom lip stuck out and you could tell she was on the verge of tears. Amazing. To top it all off, I was playing a Carrie Underwood CD and snuggling with her (Ava, not Carrie!), and she started to whimper at "Jesus, Take the Wheel"! Our baby has a sensitive soul. Or else she just doesn't like country music?

It is really becoming apparent that Ava has very little interest in children. Our little neighbor girl, Makiah, came to visit this weekend. She loves babies. Ava wouldn't even look at Makiah, but was nuts about Makiah's mom. It's like children don't even exist for her. Kind of flattering if you are the adult, but what do we do about it when she starts school? I really don't know what to expect. Laura met Madison, who also has WS, recently and Madison's mom said that she had no interest in kids, either. She still doesn't have many friends in her age group. Adults are another story..she loves 'em all. Excessively. I guess we will cross that bridge when we come to it.

I was revisiting my WS literature recently. Ava has so many of the signs and symptoms. Clinodactyly, sunken chest, SVAS et al, hammer toes, strabismus, long philtrum, full lips, turned up nose, starry eyes, digestive and feeding issues, poor gross and fine motor skills. Thank God she doesn't have hyperacusis or hypercalcemia. Some days I can barely wrap my brain around WS. I just can't understand how such a tiny deletion can be responsible for so many physical issues and then bless a child with such a beautiful, loving personality. Maybe I'll never understand. I guess in the end it really doesn't matter. I love Ava so much that NOTHING else matters!

I have some pictures for y'all, but blogger is being really stubborn and, well, you know how it goes.

I'm Baaaaack....

Gosh, it's been a busy time since my last post. See, I decided to take a second job to help make ends meet. Bad decision. The only thing I accomplished was losing valuable time with my family. So last weekend I QUIT. Best thing I ever did!

Here's an Ava update: She is my perfect angel, and I can't imagine my life without her! But you knew that:-) Anyway, she has seen the neurosurgeon, the cardiologist, the pediatrician, and the eye doc recently and guess what?? No change, no need for any surgeries (except for her eyes), and wonder of wonders!! she is gaining weight. A whopping 14 lbs. 12 oz. and 26" long! She is starting to get the chubbies on her thighs and feet. She is filling out her size 2 diapers quite nicely, and wears size 6 to 9 months clothing. And her smile is just HUGE! She is starting to give hugs and kisses and you can just tell that she is just plain happy. Thank you, God, for bringing her to us!!!!

Even though I haven't been posting, I have been reading everything I can from all of you. And I sense a different tone in your posts. I think most of us are getting to the "acceptance" part of our grieving processes. At least I am. I love Ava so much. I don't think it would be possible for me to love her any more than I do, even if she were "normal". Seriously, I can actually FEEL the goodness that seems to emanate from her. I think only someone whose child or grandchild has WS can really understand what I mean.

On an interesting note, Early On Michigan made arrangements for Laura (Ava's mommy) to meet with another family whose child has WS. The meeting was fantastic! Laura was so excited, and so hopeful, after meeting Madison. Madison is 14 years old and attends regular middle school, although I am sure she has a modified curriculum. She met Laura and Ava at the door with an enthusiastic "Hi, I'm Madison and I have Williams Syndrome! And you are BEAUTIFUL!" Ok, how can you not love a child like that?? Laura says Madison's vocabulary is really impressive, and her personality is very sweet. She told Laura that she thinks Ava would make a good professor someday, like Albert Einstein! Madison's mom has taught her to give people "high-fives" instead of hugs, because often people are uncomfortable with unsolicited affection. I get to meet Miss Madison soon, and I can't wait. And to heck with high-fives...I want a hug!

Thank you for all of your wonderful posts. You have no idea how many times a day I hop on the net just to quickly catch up on your lives. Nancy, you make me laugh daily (or sob uncontrollably). Shawn and Teresa, you make me want to be the best grandparent I can, because you guys wrote the book on family. Lisa, it broke my heart to see pictures of Tatum in the hospital. Too close to home, you know? Kerry, your beautiful Brady. And Avery, and Daven, and Szabi, and now sweet Emerson. What would I do without you guys? You understand, and you make all this stuff bearable.

Be well, all of you.

Angels Among Us

Danny Schaub was a very good friend of Ava's parents. He was more like family than just a friend. He was kind and gentle and caring. In fact, he was to be Ava's godfather. Tragically, Danny died before Ava was born. He was so young, too young to die.

The other day Laura reported to me that she thought Ava saw an angel! She said it just chilled her, because Ava suddenly looked up, startled, and then let loose a big smile and a sigh. There was NOTHING there to see, but whatever it was, it comforted Ava.

What do you think? Is it possible that our little angel has her very own guardian angel? Is it possible that Uncle Danny really is looking out for her? Is he playing some celestial version of "peekaboo"? I like to think that God does take care of the little children, especially those who suffer.

Angel of God, my Guardian dear, to whom His love commits me here, ever this day be at my side, to light and guard, to rule and guide. Amen.

Thank you, Danny, for keeping watch.

What if?

Thanks to a little insomnia I have been watching an old Mel Gibson flick, The Man Without a Face. Mel is a disfigured recluse who begins, somewhat unwillingly, a friendship of sorts with a young boy who asks him to provide tutoring so that he can pass his boarding school entrance exam. It turns out old Mel is really a great guy and provides the mentoring this kid really needs. Yada yada. Anyway, my mind started wandering and in popped Ava! Right now Ava is really small for her age, so any delays are somewhat overlooked because she can "pass" for a younger child. I wonder if, as Ava gets older, people will see only her impairments (for lack of a better word at 3:00am) instead of the great kid inside. What if people whisper the "R" word about her? I know in my heart that we love her as much as humanly possible. I know that she will have every available opportunity to learn. And I try to tell myself to take it one day at a time. But still, what if?

Make mine a tonsillectomy with a side of kidney failure, please!

I am a card-carrying member of the "Sandwich Generation"

My son had a T&A on September 13. What fun! Thank God for Vicodin and the Family Medical Leave Act. If only the Vicodin were for me:) Anyway, the surgery went well and his GIANT tonsils and adenoids are gone forever! Hopefully no more infections, snoring, or sleep apnea. Mr. Dominick is healing nicely. However, I am not used to being home this much with him. It seems we are starting to get on each other's nerves. I think both of us are ready for this to be over. And frankly, I am tired of buying ice cream.

In addition, my mom has developed some issues that are making me a bit nervous. It appears she is in kidney failure, Stage 3-almost Stage 4. Ugh! So far she has had an MRI and will see the nephrologist next week. It's so scary when a parent's health begins to fail. To top it all off, I am an only child, so there is no one to share this experience with. I am not liking it, but really, I am very confident that she will be ok. Or maybe I am in denial.

On September 18 I discovered the indescribable joy of having a colonoscopy. Unfortunately, I flunked it by engaging in a little apnea and subsequent coughing fit. Doctor said the camera was jumping too much to get good pictures. Can you even imagine what that must have looked like?? Oh my God! My ass jiggling all over the table and these people that I sometimes have to see at the grocery store witnessing the whole thing?? I am so humiliated. Anyway, now I have to get fitted for a CPAP machine and also have a barium enema. Does it even get any better than this??

Now, on to Miss Ava! She saw the eye doc recently and it was decided that surgery is the only way to straighten her eyes. No glasses yet. They will continue daily patching and hope that her vision gets stronger. She has a followup visit in October, I think, so maybe they will recommend something else at that visit. The doctor, Linda Angell, is wonderful! She's very kind and soft-spoken and Ava really responded to her. So, here we go again...back to the operating room. Surgery will be scheduled as soon as clearance is received from the cardiologist. Doctor just wants to make sure that Ava can handle the anesthesia.

Ava went to the cardiologist on September 14. I couldn't attend that appointment because of Tonsil Boy, but they tell me everything went very well. She will have a sedated echo next week, which hopefully will give us more good news.

Sometimes when I write about doctors and appointments and tests I feel like I am writing about some other baby. Because our baby is the picture of health and happiness. She is so sweet and loving and gives 1000 percent more than she takes. It is impossible not to love her! She puts up with us very patiently. Even when we try to dress her funny.

Gotta go now. Since I am on the computer I will have to check out all my favorite kids. So look out Brady and Erik and Tatum and Clare and Avery...here I come!!

I've Fallen and I Can't Get Up

Is it just me, or is HTML a secret code that the average person cannot hope to crack? I have been trying to format my posts in an attractive, easy-to-read fashion. Ain't happenin'. I am hopping around from browser to browser trying to make things work. AARRRGH! All my pretty italics, bolded items, paragraph breaks...GONE. I have checked out every help page I can find. Still ain't happenin'. Okay, I am obviously no "spring chicken". I wasn't raised on technology. I learned to type on an IBM Selectric typewriter...had to use and eraser with a brush on the end to correct mistakes. My first car had only an AM radio, but I did purchase an FM converter so I could listen to some decent tunes while cruising Main Street on Saturday night. My high school yearbook devoted an entire page to our one and only "computer terminal". Yep, the "terminal" was in its own room in the library with a sign on the door that actually said "COMPUTER TERMINAL". 'Cause no one would have known what it was without a sign. HOWEVER, I usually can manage to get around on this machine without too much trouble. SO WHY CAN'T I MANAGE TO FORMAT THESE POSTS??? If anyone knows where I can look for some advice will you please send me a link?

Oh, The Places You'll Go! (maybe)

...Wherever you go, you will top all the rest.

Except when you DON'T
Because, sometimes, you WON'T

I'm sorry to say so
but, sadly, it's true
that Bang-ups
and Hang-ups
CAN happen to you.

Dr. Seuss nailed it that time, didn't he??

One of my co-workers became a new grandma 5 days ago. Baby Alexia is beautiful! Pink-cheeked and perfect. I'm so happy for my co-worker. So why am I so sad for me?

Occasionally I give in to the "why me's". As much as I love Ava just the way she is, I can't help but grieve for what she isn't. I have read the literature. I know it's normal to feel this way and to expect it once in awhile. But man, it just seems to blindside me sometimes. I SO wanted my granddaughter to conquer the world! I had this whole scholar/prom-queen/college grad/published author thing all mapped out. Most likely, it's just not going to happen.

I sometimes am just overwhelmed with respect for the other WS families out there who are navigating this crazy maze we call WS. It is no picnic dealing with sick babies and the endless APPOINTMENTS that come with the territory, not to mention that niggling sense that something bad could happen at any time. (Niggling?? Where in the world did that word come from??) Our family is lucky, because Ava had a great-aunt with WS. At least we have some first-hand knowledge to use. Or maybe it is worse this way. We KNOW the bad things that can happen. However you choose to look at it, this is tough stuff!

On a lighter note, Monday Ava has an appointment (yep, another one!)with her ophthalmologist for a followup on her strabismus. For six weeks her eyes have been patched on alternate days--left eye three days, right eye four days. None of us has seen any improvement, so it looks like the next step will be glasses. Can you just see this little tyke with GLASSES??? Too cute!

Beach Baby

She wore an itsy-bitsy, teeny-weeny, PINK polka-dot bikini! It appears our Ava is a bit of an exhibitionist...hope she outgrows that!!

She has to dance!

I visited Ava tonight after work. I love that girl!!!! After work there is nothing better than her contagious smile to erase all the garbage that I have carried around all day. This kid has an electric smile, no kidding. Huge grin, crinkly eyes, and a total-body wiggle that lets you clearly see that she's happy to see you! I think she equates my visits with her chance to dance. OT says that Ava needs to have lots of tummy time, crawling practice, and must sit, not stand. Unfortunately, Ava's favorite activity in the whole world is standing up and rocking from side to side--DANCING! I just cannot make that girl sit when she so obviously has the music in her--She has to dance. WS kids are known to have an affinity for music. Some have actually become very accomplished performers. I think Ava is headed in that direction, for sure. And if I and her other grandparents have our way, she will have every opportunity to enjoy the music that she so obviously feels in her soul.

Ava's Garden

Ava's Garden grew when it shouldn't. All the beautiful plants in my little plot are volunteers. They popped out of the ground and flourished, even though nothing was planted or nurtured. They are lush, blooming, and just won't give up! To me this is perfect symbolism for our beautiful daughter, granddaughter, and niece.

Ava Mae was born December 21, 2005, after a difficult pregnancy. Her mommy, Laura, whom I love like my own, miscarried TWICE in her first trimester. Ava's siblings didn't make it, but our precious girl held on with all she had. She was born at 38 weeks--small, initally unresponsive, and with severe feeding issues. I have never felt so overcome with emotion as I did the evening she was born. I stood at the nursery window and just sobbed. It's true what "they" say: Being a grandparent is so much better than being a parent!

I knew something was "odd" the next day when I visited the hospital. Ava's philtrum was exceptionally long. I dismissed it, thinking that it was just a family trait or something. Several weeks later I took Ava to her pediatrician appointment. At that visit the doctor sat down, looked me in the eyes, and said, "I know you have concerns and so do I. " My mind was reeling when he started on this litany of signs and symptoms. He mentioned her long philtrum, low-set ears, feeding issues, prolapsing rectum, abdominal pain, heart murmur, and on and on. His suspicion was that she had a genetic defect, most likely cystic fibrosis. I can't even find the words to express the devastation I was feeling. And the worst part was that I had to go home and tell Laura and her family what the doctor said. And so it began.

Since then Ava has had a positive FISH test for WS, three surgeries to repair her prolapsed rectum, long hospital stays for IV antibiotics, visits with a cardiologist, geneticist, GI surgeon, GI specialist, endocrinologist, and ophthalmologist; and therapy with Early On of Michigan for feeding issues and developmental delays. Whew! Our baby is high-maintenance! But considering the hell she has been through, she is doing remarkably well. She has a smile that lights up her whole face!

I hope to post regularly on this site so that our friends, relatives, and fellow WS families can chat and learn from each other. I also think that journaling is darn good therapy for the writer!