Prom and an attempt at normalcy

I am having a little bit of a freak out that my daughter is turning ten in a month. Double digits. I am not ready for that. Mainly because her birthday also means the anniversary of her Rett Syndrome diagnosis is just around the corner. I can get stuck in that “ugh, this sucks, why me, why Brooklyn” around this time of year…….then I am on facebook this morning and I read a post about PROM DRESS SHOPPING that one of my fellow Rett mammas wrote.
Suddenly turning ten and thinking about eight years with Rett Syndrome seems insignificant.
Prom. Ugh.  Prom. I can’t bring myself to think that far ahead. To be honest because I can’t – it hurts WAY TO MUCH.
As I read each word she typed it is like I am there, with her, experience every thought, every emotion. Because one day I will be. I am typing this through the tears tapping down on my keyboard. This is real. This is another part of life that Rett Syndrome takes away. It takes away the”normal” for our girls.
Here is what she wrote:
A letter to the mom in the dressing room next to me,
Today we both had a special day… Shopping for prom dresses with our senior daughters. Maybe it was rude, but I couldn’t help but listen in on your conversation. I heard you and your daughter laughing. I could hear the love in your voice when you teased her about the slit in the dress being a little too high and the neckline being a little too low. I heard her call you mom, but I knew you were more like friends. I could even hear your oh so subtle gasp when she walked out in that form fitting black dress covered with sequins. I’m not surprised… I think I gasped too. She looked incredible! As much as I wish it weren’t true, form fitting dresses and round tummies with feeding tubes do not go together. So the dresses we were trying on were big… gypsy worthy big! I was crouched on the floor trying to keep my daughter from falling over because her scoliosis keeps her from sitting up straight when she’s tired. I could see you and the proud way you looked at your daughter. I watched you and your daughter through the gap in the curtain. I envied you. I wondered if you ever think about how very lucky you are? You see, even though it was a special day, it was also a very emotional day for me. Another milestone event that I am losing out on. I will admit, shopping during the dinner hour on a Wednesday night was probably not one of my best ideas. While your daughter twirled in front of mirrors, my daughter sat on the floor of the dressing room rubbing her eyes and falling over. I put huge tulle dresses over her head, but then I had to attempt to stand her up if I had any chance of getting the back zipped up. I had to keep her towel close by because taffeta is not very forgiving when it comes to drool. I pretended I was having fun both for my daughter’s sake and for anyone listening in on our one-sided conversation. If they had any pity for me, surely my over the top excitement and fake smile should dispel any myths. I narrowed it down to two dresses and even though I held both dresses up for my daughter to demonstrate her eye gaze skills, she wasn’t interested in the least. I picked the white and aqua dress, not because I liked it the best but because I thought maybe, just maybe, if my daughter could talk, or walk, or use her eye gaze skills… That would be the dress she would choose. I also used my infallible decision making method of eeny, meeny, miney, moe… I figured I had a 50/50 chance of getting it right, unless she didn’t like either. Who knows, maybe she doesn’t even want to go to prom. I heard you joking with your daughter about doing extra babysitting jobs to help pay for the dress. As I handed the cashier my credit card, I was more than willing to pay an absorbent amount because I reminded myself that I’d never have to buy a wedding dress. I drove home, fed my daughter, and got her ready for bed. The dress is still in a plastic bag hanging in my van. The dress… Another attempt at normalcy. Another reminder of how much has been taken away.
Ugh – Shelley Albertson Schmidt I love you so much. Thank you for sharing this. I know McKenna is going to look AMAZING – she always does – I tell you all the time how beautiful she is. But I get it, that does not help. It does not take away the hurt, the unfairness of it all, it does not take away Rett Syndrome.
Oh my friend, how I want to take away Rett Syndrome from McKenna, from Brooklyn, from all the girls – so they can tell us they want that dress that is WAY too short or the one that is about $100 out of our price range, so they can talk to us about boys, and prom, and give us that “mom….you are an idiot” attitude.
Until – then….know that I love you and I love McKenna. I am honored to call you my friend I pray that prom is an amazing experience for her and come prom night I hope you feel all of our love, strength, and encouragement coming your way.
ShelleySchmidt and Mckenna
My beautiful friend Shelley and her amazing daughter McKenna

5 Responses

  1. Cathi borge April 16, 2015 at 3:17 pm | | Reply

    As a mum to a little girl with Rett Syndrome in Gibraltar I am truly touched by your blog. My daughter is 8 in June and about to do her first holy communion and I am experiencing similar feelings, so nice to know I am not alone. Thank you.

  2. Connor lee April 18, 2015 at 7:09 pm | | Reply

    I have a sister with Rett syndrome, her name is Alyssa lee. I often think how lucky I am to be able to say I’m full or I’m hungry or can we have something else. I think to myself how lucky I am to be able to run and play and be a kid and that the chance of my sister ever being cured are very slim and that she will most likely not ever be able to talk without a talker or walk and run and play and take control of her body all will probably never happen.

Leave a Reply