Wednesday, June 29, 2011

another year

Yesterday was Averys due date. That perfect date chosen by nature of all gloriously even numbers. 6.28.06. I was so naive-as most of us are when pregnant with our first child. Nothing will or could go wrong. It's going to be perfect, right down to the music you think will automatically start playing as soon as that baby makes it's way into the world (vaginally of course!)

But then the perfect due date comes and goes and you ask your OB can we induce on the 30th so the birthdate will still be all even numbers? She looks at you hopeful that you're kidding but she sees you are not. She has visions of writing a prescription or two after the birth, and not just for pain meds. Her vision is correct.

The induction is scheduled for july the 8th. July!?? But that will ruin my baby's perfect due date! well, at least I got the 8th. Anything can happen, you are told, and you might go into to labor tonight! you dont. you wait and wait and look at your swollen ankles and think how in the world could they get any larger. you wonder why it has to be the hottest summer on record and why the air conditioning at home doesnt seem to be quite up to par. you wait. nothing happens. you are going to be induced. that wasnt part of the plan and neither is the C-section you end up with. Also not in the plan? Having your mom diagnosed with ALS just a couple weeks before all of this. She wasnt happy with the "1 person rule" for the OR. "Tell them Im dying" she says-which you think is funny for a split second until you realize she actually is.

Not in the plan. As expectant mothers we are all told to "have a birth plan" which i think is complete crap and my plan wasnt even over the top. I planned to have a vaginal delivery with any and all drugs I might have needed. I planned to fall madly and deeply in love with my baby right away. I planned to be good at this. I planned for her to be healthy. Except for me getting the drugs I needed, none of that plan fell into place.

You can kind of see it my face in the photo that was taken as I first laid eyes on Avery. Some might say its a look of love and adoration-I feel like its more shock and awe than anything else. The love and adoration would follow.

You all know the rest of the story-the past FIVE years-the missed milestones, the delays, the tests, questions, the Dr's, the specialists, the "She's fine!'s" and then more specialists who wanted more tests and finally --Rett syndrome.

So here I sit once more, on this couch that held me up the night before she was born and last year at this time when I sobbed my eyes out at the thought of her turning 4. Last year was her first birthday since the diagnosis. It was a rough one with no real party. I promised here to give her a princess party this year. She just still is not a princess-y girl. So we are having a pool party with pizza and popsicles and cake. Because she is happiest at the pool. I'm sure I will be a wreck on the inside even though I feel I have come a long way since last year. Im not sobbing, so there's that.

But, her birthday is a tough time for me. Like last year I struggle with the whole party thing. Avery cant participate in most party activities-she cant open presents, or even play with those presents. Most of the time she seems as if she couldnt care less about any of it. Nolan has been talking about his birthday (in October) since November of last year-so I know it should be high on her radar and thats heartbreaking.

I keep reminding myself of the words I have heard time and time again from more experienced parents in this Rett marathon-"things calm down around 5, trust me". So, Rett syndrome, do you hear that? You've got about 9 days to loosen your grip on my girl. My big 5 year old girl.


E Rabke said...

Erica, I found myself shaking my head in agreement in so many ways while I read this. Except, Anna Catebwas born at 37 weeks! Every year the whole birthday party thing gets me! And I find myself stressing over it. I can honestly say, I just follow and watch what she likes and go with it. And she is not a girlie girl in the least! I think her favorite party to date was er pool party last year with all her friends from her typical first grade class! I can still remember the huge smile on herb face when we got in the car to go home, and she let out the biggest, "mommy"! I knew that was her thank you!
Avery will have a great birthday and just go with it! Relax and breathe, she will have fun! And I can't wait to see the pictures!

Robin said...

Erica, I could have written this post. I have had all of these thoughts and feelings. My big girl is six and I have hated every birthday since she was diagnosed.

Heather said...

I can so relate. I even cried reading your post and thinking about my daughters birthday. It feels so strange to me that birthdays can be so difficult. Thanks for sharing. It makes me feel more normal=)

pamt said...

Thinking of you and your birthday girl.

Ann Marie said...

Birthdays are so tough, Erica. I think fewer tears this year is definitely progress. I am hoping they get easier, too, though. Hugs

Smilen Champ said...

My name is Jenna and I came across your site. ur daughter is an amazing, courageous, strong and determined fighter. She is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and love it when people sign my guestbook.

Tanis said...

Erica, I feel like the other ladies who commented in saying I could've written this post!
My daughter, Melia, is 3 today and we had her birthday party yesterday. I should mention we got our Retts diagnosis on Wednesday!
Like you, this year I didn't cry but when Melia had to be taken out of the room because she was screaming and scratching while the other kids played pin the frying pan on Flynn Rider my heart sank.
Birthdays are hard!!
I'm excited to have found your blog though, I love knowing there are other moms out there who know what I am going through!!