Wednesday, October 26, 2011

Happy Birthday Darling Girl!

Six years ago today, my darling daughter came into this world with her mom throwing a fit.  Little did either of us know that this was going to be a pattern for the next six years – mom throwing fits to make her Little Diva’s life a bit easier.  

I had just fired my obstetrician because he wasn’t listening.  I spent a decent part of my pregnancy talking to the doctors in the practice about what to expect in the delivery room.  I had heard stories from the trenches of moms who were denied epidurals until it was “too late” or who asked to avoid other unpleasantries and were overruled in the heat of the moment.  So we had had several very calm discussions about what I wanted and what they would agree too.  And here I was ready to push and the doctor announced he was turning off the epidural.  I fired him on the spot.  He and I argued for 15 minutes but I refused to budge.  It’s amazing what the pain of a contraction can do to your will when the going gets tough.  He said, “You can’t take the epidural home you know!”  and I replied, “Yeah, I get that you idiot.  All I am asking for is the chance to push before you turn it off.”   Twenty minutes later, epidural in place, LD was born.  Now you may argue that this argument was actually about making my life easier, and that’s true, but I really wanted LD to enter a room that was reasonably calm, not with her mom blubbering and coming apart at the seams because she’s a wimp when it comes to pain.

Little Diva at hippotherapy.
I can’t believe it’s been six years.  Since that time, I have had a lot of fights to fight on behalf of Little Diva, but it’s Little Diva who has done the majority of the hard work.  She’s works hard in therapies to gain body strength and is now able to walk with assistance or in a gait trainer.  Her fine motor skills are improving slowly but surely.  She isn’t able to isolate her fingers enough to be able to use the tablet PC yet, but we’re working on it.  Importantly, after finally obtaining Frisium three weeks ago, she is no longer seizing and appears to have regained all those skills she had before our seizure crisis in August. Right now, life is really good.

Everyone tells you that being a parent will change your priorities, but people tend to say this in a way that makes it sound like the experience will be similar to a root canal.  They talk about how you’ll never sleep again and you’ll forget your husband’s name and the kids will drive you crazy.  And it’s all true, especially the sleep part when you child has Angelman Syndrome.  But somehow it was never made clear to me how much it wouldn’t matter to me that my priorities would change. How I would spend so much time just enjoying my children and laughing with them.  I know we all love to bond over stories of how hard it is to parent and I am sure there will be posts galore here eventually on precisely that topic.  But for today, I want to remind myself about the wonderful world I now live in because Little Diva is part of it.

Because Little Diva is in my life, I more easily see the pure joy in bubbles or whistles or the wind blowing through one’s hair. I appreciate the drive and need for independence more because I see the wonder on her face when she powers her tricycle by herself.   I value every accomplishment she obtains, no matter how trivial, because I know how hard she has to work to achieve it.  And because of this, I never take for granted the accomplishments my son achieves either.  They are magical in their own right and deserve to be acknowledged and celebrated.  Because of Little Diva, I have met some of the most amazing people on the planet.  I have never been a fan of the sentiment that God gives special needs kids to special people, but after meeting so many parents, teachers, and caregivers in our community that are extraordinary, it makes me wonder.  Because of Little Diva, I have new friends I would never have met that have enriched my life more than I can say.  I have strengthened ties with old friends and family, because their support has been unwavering and important, even when I fail to write or call for months on end because I am scrambling to deal with life as I know it.  Because of my Little Diva, I have more faith in the world and the people in it than I did before she arrived.

I dropped off cupcakes today at her school and her daycare.  While she will probably lick the icing once and eat applesauce instead, she will be surrounded by friends at both places singing happy birthday and celebrating.  And knowing her, she’ll be sitting there smiling and laughing with the joy of being alive.