What life is like living with Velocardiofacial syndrome aka 22q11.2

My personal experiences living with a genetic disorder.

I was born on February 10 1983. I just turned 33 years old. See photo…

My husband is 11 years older then I am. We met online though a mutual friend 11 years ago this Feb 23rd we celebrate 11 years being togetherness. Dec 29 we celebrate 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 year old step son. We also picked up a few things for our 8 year old. At check out the cashier, a older lady looked at me in her matter of fact voice and felt I needed to be informed of my misfortune of looking too young to have given birth to a 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 where 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 phase 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 ? See photo of him below next to me at dinner.

Back on to my tale of day in the life of Mandy thats me. 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 peroid! she was shocked I managed to get married too. In her good for you tone. I almost wanted to say yep and I can wipe my butt daily. Go me. I kept quiet. If you know me you know thats hard for me.

I was rather calm about this moment then I have been in past when others have said the same thing to me. I have tell you I have been there done this before oh I am so tired of it all the time.

Many places many times with different people tell me l will appreciate it when I am in your 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.

Usually I would have come back with a sharp remark about how she looked way too old to still be working at her age, usually, but today I didn’t.

I did say that one time to another commenter in the past in my teens because I get it way to often I didn’t know I had 22q velocardiofacial syndrome then.

I also have said something snappy in past come backs of my bruised ego 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 to inform me of how young I look. I remind myself to relax because I look young it could be worst I could always have had no ears to hear this lady.

so…
This time my response to her I said, That is how life works! Funny isn’t? How I am not formed to fit your image and that is ok because I know its how God made me Flaws and all and I know who I am in his image. I went on nicley as she listened in shock and I said to cashier lady your comment is irreverent nor will it change how I look any time soon. Thanks for stating the obvious. I am sorry you feel that way. I wish the compliment would have been on this cute dress I found.

I left with the lady to ponder wth?

I was un effected I didnt 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 a adult I have 22q velocardofacial syndrome and not everyone I meet needs to be informed of my genetic disorder because it not what or who I am. I didnt tell her oh its my missing chromosome making me look young. I wasnt ever going to run into this lady again. I dont plain 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 and I refuse to shrink down for this ladies confort or anyone elses comfort because I may make a few other people inscure in their judgements on how I should look at my age.

I ended up walking away feeling like a boss lady.

Thanks for reading.