Author: Amanda Ripsam-Blogger and Advocate
What life is like living with Velocardiofacial syndrome aka 22q11.2
Date:04 January 2017 I was born on February 10 1983. My husband is 11 years older then I am. We met online though a mutual friend 11 years ago and last Feb 23rd we celebrated 11 years being together. Dec 29 we celebrated 8 years of marriage. Husband is 44 and has three teens entering adult hood. Adam and I have an 8 year old girl named Bella. Just giving detail as my story continues.... it is the numbers that shouldn’t matter that do matter. Let me explain that living with velocardiofacial syndrome, a mild form of it, has its moments that make me wonder often why me? My young appearance is one of the things about the disorder I would like to change.
Adam and I went shopping for clothes for my 16 years old step son. We also picked up a few things for our 8 year old. At check out the cashier, an older lady, looked at me and felt I needed to be informed of my misfortune of looking too young to have given birth to an 8 year old! If her jaw could have hit the floor it would have when I handed the lady the sizes of boys pants and explained who these were for. I think she might have had a heart attack from disbelif or she thought I was making up stories. Then lady notices my husband coming to the register with more items. Cashier lady had a conversation with my husband while he was picking out boys clothes earlier and it clearly didn’t face her we were a couple! I was picking up girl clothes on the other end of the store. I wonder why she didn’t feel the need to inform him of how young he looked or even mention how young I looked to him?
Not only did cashier lady feel the compulsive need to inform me of how I am too young looking to have even been a mom, she was shocked I managed to get married too.... In her good for you tone.... I kept quiet.
I was rather calm about this moment then I have been in the past when others have said the same thing to me. I can tell you I have been there and done this before... oh I am so tired of it all the time.
Many times different people told me l will appreciate it when I am in my 30s. Here I am not appreciating any of this! Not at all. When does grey hair and wrinkles start? and how long before I start to age? I used to get teased in school too for looking younger.
I also have said something snappy in the past and would have asked for an apology.... I did not say any of those things. Instead the me today at 33 has dealt with others before who felt the compulsive need to inform me of how young I look. I remind myself to relax because I look young and it could be worst... I could always have had no ears to hear this lady.
So…
This time my response to her was: That is how life works! Funny isn’t it? How I am not formed to fit your image.
I left with the lady to ponder with?
I was un effected, I didn't allow it to ruin my day like comments would have in the past. I’m liking this confident me.
Numbers do matter when you have a genetic disorder as an adult. I have 22q velocardofacial syndrome and not everyone I meet needs to be informed of my genetic disorder because it is not what or who I am. I didn't tell her: 'oh its my missing chromosome making me look young...'. I wasn't ever going to run into this lady again. I don't plan on returning back to the store either.
I blog and help others but I personally am not branded with 22q across my forehead. I am so much more!
Thanks for reading.