I remember the day of my ultrasound...as we drove I thought of the baby inside of me - most women want a baby girl...I really didn't care, I just wanted it healthy. I have 2 boys, was raised with 3 brothers, I know boys - a girl seemed rather scary to me, especially since I remember what a spitfire I was and history tends to repeat itself. Plus, I hated pink and already had a large collection of Thomas the Trains, Hot Wheels and Godzillas, so a having a boy would be logical.......
So when the ultrasound showed a picture resembling the drunk girl sitting on the Xerox machine at the office party, there was no doubt in anyone's minds....we were having a girl.
It's amazing how quickly the mind shifts...my thoughts turned to shades of lilac, petal pink and sunshine yellow. Flowers, bows, pigtails, dolls, ruffles, sparkles.....these things eeked their way into my Monster Truck world and I accepted them with open arms and a happy heart. And things were girlie and fun for almost 2 whole years....and then it started - Regression.
First to go was the pigtails....Emily could no longer tolerate accessories in her hair, nor could she tolerate the shampooing and brushing - the sensory overload was far too much. Mournfully I packed up all the bows, bands, and barrettes - shoved them to the back of the closet where they didn't stare and taunt me with their girly-ness. Eventually, I also packed up my dream of Emily having beautiful long blond hair like her mom used to have and cut it in a short bob for easier management.
Then, the clothes...nothing with frills, glitter, rhinestones, embroidery, any embellishment of any kind for that matter. No long sleeves, tank tops or sweatshirts. No leggings, tights or cute little jeans. Emily dressed like most lazy teenage boys - cozy jammy pants and oversized shirts.
Going through the girls clothing department was a tortuous nightmare - 90% of the clothes there she would refuse to put on. That goes for shoes as well....All the cutesy sandals, glittery slides and kicky boots...shot down in screaming flames.
And finally, the toys....Emily had no interest in baby dolls, kitchen sets or Barbies. No dress up, no pretend play, no nothing girly at all, despite all my empty hopes.
That was the beginning of Autism, and I have fought uphill every day of my life to change some of that. Emily's hair is still short, still accessory-free, but shampooing and brushing are no longer huge screaming matches. Clothing is still a sticky-wicket, but she likes what she likes and I do not fight that battle anymore. Somedays she has gone to school in a soccer jersey with a big full pink tutu and crocs and I don't bat an eye. Toys....ahhh toys. Toys revolve depending on what she is watching at the time (Little Einsteins, Elmo, Teletubbies), but one constant the past few months has been a Raggedy Ann doll ("Dolly") that she takes to school every day and sleeps with. This makes my heart explode with joy in so many ways - She likes a doll (YAY!), she plays with it appropriately (YAY!), and she can say 'Doll' (YAY!) Finally, and the most precious, is that Dolly belonged to my Nanny, and it sat on her bed everyday of her life after my Grandfather passed away, and when she died a year ago, my mother gave it to me and now Nanny's great-granddaughter holds it, cherishes it, and I know she is smiling in heaven (SUPER YAY! ...with a little sob).
....Emily has come a long way in 3 years, and in those 3 years I have struggled and fought with my feelings of Autism and her - the balance of still mourning things that are lost combined with the celebrations and joys of who she is and what she has accomplished. It's a delicate balance that will never go away - she will grow, and age, and there will be things she cannot do, and that will hurt....but there will be many, many things she will be able to do, some better than others, and for that, I celebrate her life and the impact she will have on the world.
.....But, the mourning never really goes away.....
My brother had a baby girl a few days before Christmas. And I was not happy. I wanted Emily to be the only granddaughter, the only niece, the only girl cousin. I wanted her to be unique, special, but in a completely normal way. I realize it sounds shallow and petty, but keep reading....
Emily's cousin J was born a month after her and in the beginning everything was great and so much fun to have them sit together and look cute and compare fun stories - and then she regressed....no longer was it fun to hear stories about J.
When J started talking and eventually spouting funny little quips, I laughed with everyone - until I got home and listened to Emily shriek and grunt and scream...and I wept.
When J started potty training, I listened to all the stories of bribery and star charts - and then went home to scrub feces out of my carpet and off my walls for the 3 millionth time...and I wept.
When J sent his artwork to my parents and they put it on the fridge, I marveled at it with them - and then went home to my daughter who couldn't hold a pencil, much less draw a circle...and I wept.
All of J's accomplishments and milestones....tortuous reminders of just how much Emily wasn't. It was so in my face, so RIGHT THERE, and I mourned for that child that couldn't keep up with her cousin. It stung like frigid water to the face, it burned slow and deep like an ember, and for close to 2 years, the comparison in my mind was almost unbearable.
I fought, prayed and struggled and worked through all those feelings and it was hard. I now celebrate J for everything that he is (and he IS awesome), and I don't even think twice about what Emily is not when J is.... Everyone at some point, to some extent, compares their kids to others, it's human nature, and I am no different. But in this case, I HAVE to be different, I cannot compare Emily to anyone but herself and the bar I set for her, and that is how it has to be - for my sanity and her success.
But when M was born, all those feelings came back...and not in a tap, tap, tap "Hellooooo, Im baaa-ack!" kind of way, it was more of a SLAM! SMASH! "I'm fucking BACK."
Except this time it had a new twist on it, and to someone who has not been in Special Needs Shoes, my reaction might seem shallow, petty, and selfish, but to me - Very. Painfully. Real.
Again, I did not want another girl in the family, I wanted Emily to be the only one. I didn't want anyone else to compare to her. My mother was so full of joy, but all I saw in my twistyness was her chance to finally do all the girly things with M that she couldn't do with Emily when she was little. All the Baby Dolls she gave Emily that were cast aside, M would accept with open happy arms. Tea sets, Barbies, play makeup, pretending....all things Grama gets to do with M that she never got to do with Emily. I saw milestone pictures of M in my head - in adorable little outfits that Emily would never wear, with adorable little pigtails with adorable little bows that I never got to do. I can hear M's cute little squeaky voice that will fill ears with happiness that with Emily I waited so frickin' long to hear...and the thought of hearing something along the lines of, "Now, which one of your granddaughters is the one with Autism?" crushed me.
In my head, she ceased to be "Emily" and became, "the one with Autism".
My family is loving and supportive, and I am truly, truly blessed for the wonderful advocates they are for Emily - my logical side tells me that everything in the paragraph above is all bunk, and I know that. But the funny thing about feelings is that they just HAPPEN, right or wrong, they are there. Emotions don't really care about logic, fairness, or right, they just show up and demand to be noticed and then you have some choices to make - do you crumple them up and bury them deep down inside? Or perhaps tear them up into tiny pieces and deal with a piece at a time? Or meet them face on and bear the cross they have in store for you?
I will always, to some extent, mourn that part of the little girl that I never got. Depending on my mood, walking down the girl aisle of the toy section can be anywhere from a fleeting sting on my heart to a "stop-the-cart-so-I-can-cry" punch to the face. When I want to buy something for Emily, my husband has to ask me, "Are you getting it because YOU want her to play with it, or does SHE really want to play with it?" ...the American Girl catalog that comes in the mail - that gets thrown away. The clothing section is still a painful place to be, and I imagine with Emily's sensory issues, will always be, but I also understand that is small potatoes compared to other obstacles we have dealt with, or will deal with in the future....that doesn't make the hurt, the mourning, the emotions any less - remember, emotions do not care about logic and reason.
So I dance the dance - the balance of logic and emotion. I will bear my cross and work through my emotions over and over and over until they are very small and the logic takes over. And when the time comes to hold my niece in my arms, I want to be able to celebrate her for all that she is while not comparing all that Emily wasn't. I want to be able someday to put those emotions in a box in my head and look up to the heavens and tell my Nanny,
"You were right....This too shall pass"
