Tuesday, October 31, 2006

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.

Monday, October 23, 2006

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.