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.


  1. Wonderful as always, Becky! I am so glad things are better for Sophie and your whole family with the Frisium.

    I love what you said about how your world is so wonderful b/c of LD! Kate has made me slow down, not be concerned with material things, and realize what is important. I don't know what my life would have been like if she were born "neuro-typical", but I do know that I like the person I see in myself much more than what I probably would have been. I have Kate to thank for that.

    I love the picture of LD on the horse - she's a natural! It must make your heart sing to see that. So, so awesome! I'm so happy for both of you.

    Wishing LD and her very special, important, and wonderfully brilliant Mommy a VERY happy birthday! Can't wait to see you at the Gala!
    Love kelly

  2. Thanks Kelly! I love the sentiment about how Kate has helped you see a better person in yourself. I would completely agree with that. And I love seeing her on a horse because I was/am horse crazy myself. It's just amazing to see your children enjoy something you enjoy.

  3. Beautiful! I still remember meeting LD when I was with BD (Bigger Diva -- sorry Jessica!) and the hotel people tried to put us all in one room.

    Although it appears that my two are typically-developing (aside from O's minor orthopedic issues), knowing LD and BD and all the other people I know has made me not take any milestone as a given. That sounds silly and cliched but it really is the most amazing lesson that I've learned from visiting this world.

  4. Thanks Lesley. That was a crazy night! If I knew then what I know now, I would have fought harder for them not to make you guys trek all over St Louis with a tired young adult! But BD really did make part of that meeting for me watching her sign and be so gloriously opinionated. It was a breath of fresh air to meet all of you.