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What is life like for an Adult living with 22q vcfs digeorge syndrome?

What is life like for an Adult living with 22q vcfs digeorge syndrome?

What life is like living with Velocardiofacial syndrome called 2q11.2 deletion syndrome Digeorge

I was born on February 10 1983. My husband is 11 years older than I am. We met online through 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 9-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 9 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 9 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 disbelief 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 boy’s 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 what the ?

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 it’s my missing chromosome making me look young...'. I wasn't ever going to run into this lady again. I don't plan on returning 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. -

The story of how we found out we have 22q11.2 deletion syndrome

The story of how we found out we have 22q11.2 deletion syndrome

Offering hope

Offering hope