Wednesday, July 22, 2009

A week ago today...

A week ago today our family grew by 2 feet. Skylar Reese Baker joined the family at 4pm. She was 8 lbs., 1 oz, and 20.5" long. Skylar has dark brown hair, blue eyes, and long, delicate fingers. She looks a bit like Gavin, but really has a look that is all her own. She had enough hair for the nurses to put a little bow in it. Awwww....

Gavin & Ainsley have taken to their new roles really well. Gavin knew what the new baby gig was all about and is doing a good job of teaching Ainsley how to be gentle with a baby. Skylar is doing well and soaking up all of the love & attention from everyone. She's adjusting well to being home and is settling into a routine.

It's fun to have a new baby at home again. I'd forgotten just how small 8 lbs. is, how small their diapers are, how soft their skin is, how good it feels to fall asleep with them while relaxing on the sofa. It's only been two years since we were there with Ainsley...Sad to realize how much I had forgotten. Sweet to be able to savor it again, and hopefully do a better job of remembering.

Saturday, July 4, 2009

Bill of Rights

Happy 4th of July!! This is Adrian's first 4th as a citizen, so we went out with some friends last night to celebrate.

To celebrate our family on this holiday, I'm posting a "Bill of Rights for Parents of Kids with Special Needs" that I found on a blog called "To the Max."
* * * * *
We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder "What if..." every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes--just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people's ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the griving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK--at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don't have to look into another child's eyes and answer the question, "What's wrong with him?"

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children's challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be "special" but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children's disabilities.

* We have a right to talk about how great our kids are when people don't get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they're infants, preschoolers and elementary school age, but when they're in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that smpathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us--or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

* * * * *

Thursday, July 2, 2009

2 weeks left!!

Only 14 more days 'til we get to meet our baby girl! The C-section is scheduled for July 17th, 7:30am. Adrian & I have a few more things to do to get ready for her arrival. Gavin is camping with Mimi Julie & Papa Ken this weekend, so we've got plenty of extra time to prep. Thanks, Mom & Dad!!!

Ainsley has been learning some new tricks lately. She's started to stand on her own--without pulling herself up on furniture or the closest available leg. She'll straighten her legs, put her toosh up in the air, then straighten to a stand. She applauds herself and gets irritated if you don't do the same. We make a big deal out of it everytime, especially Gavin. He's so proud of her and will occasionally knock her down while giving her a hug & kiss. Woohoo, Beanie!!

Ainsley is starting to communicate a lot more. It's her own "language" some of the time but it gets her point across. She clearly understands what we say to when we ask her to close a cabinet that she shouldn't be in. Usually she follows the instructions; other times she just turns & smiles. "Message received, Mom, but the stuff in here looks like more fun than my toys--thanks!"

The cooler weather this week has been a welcome break from the heat & humidity. Gavin has a T-ball game tonight and it will be a GREAT night to be outside. Finally! Now we just need it to stay this temperature for a bit longer. Makes the last weeks of the pregnancy so much more enjoyable. It hasn't been bad, and the end is soooo close. It will just be nice to be able to hold Gavin & Ainsley a bit closer. And of course to hold our baby!!