About

Hi, I’m Melissa Welin and this…this is my blog.

I am married to an amazing man, Eric, and we are parents of two boys with fragile X syndrome.

Our oldest was diagnosed with fragile X syndrome in March 2006 at the age of 22 months. He was given an additional diagnosis of PDD-NOS in July 2006. Our youngest son was diagnosed at 13 months and was given an ASD diagnosis shortly thereafter. This was about 4 years before my husband and I adopted him. Fun fact, neither of our boys actually have autism! Fragile X symptoms are often confused with autism. It’s estimated that 6% of the population diagnosed with autism, actually has fragile X, so we encourage anyone with an autism diagnosis to get tested for fragile X.

I began blogging many years ago to keep myself sane but I keep doing it because I remember how terrified I was when we received our diagnosis. When I searched on the internet for information, I found a lot of scary facts and gut wrenching lists of symptoms but nothing about what it was like to live with it every single day. I just needed to know that there was life after the diagnosis, maybe even happiness, and I couldn’t find that.

We were desperate to connect with local families for guidance and support but we weren’t able to find that so, in August of 2010, my husband and I started a local support group to be that support for other families.

There are still families out there who find themselves feeling alone and my hope is that, if you are one of them, you can see that there is humor and love and joy still to come…even if you don’t yet believe you’ll ever get there.

I offer up our youngest child as proof! After 9 years of living with fragile X and everything it brought into our lives, we signed up for a second ride on the roller coaster. While many people think we’re crazy, and sometimes we think we are crazy, we did it because our son and the other kids & adults we’ve met over the years who also have fragile X are quite simply the most amazing people we have ever met. Who wouldn’t jump at the chance to double their amazing-ness?

Please friend me on Facebook if you haven’t already or send me an e-mail. There is nothing more important to me than being there for other parents.

OK, that is about the end of the serious…let’s get to the more important stuff…

Facts about me

  1. I’m married, he’s pretty awesome. He’s also a web designer, if you need one.
  2. We, really and truly, called our oldest child Monkey (you’ll see this used a lot early on before we started using our real names.) We had to teach him his real name before he started preschool.
  3. Our kids are The Dudes…we have Big Dude and Little Dude. Caleb uses Anthony’s name and “Little Dude” completely interchangeably.
  4. We have a second child because Big Dude decided he wanted a baby boy when he was 4. It only took him 7 years to convince us to deliver up a brother for him. He now wants a baby girl…no announcement coming anytime soon.
  5. I’m a fragile x carrier.
  6. I swear a lot. Sorry.
  7. I randomly *bleep* out my curses here. There is no rhyme or reason to it. I’ll *bleep* B*tch in the same post I let a Fucker fly.
  8. There is no rhyme or reason to most of what I do.
  9. I like to number things. It gives the illusion of rhyme AND reason.
  10. I like love pumpkin eggnog/muffins/ice cream/pie/seeds, etc. If you put pumpkin in it, I will eat it. Or I will, at least, very seriously consider eating it as long as it isn’t gross. I wouldn’t eat pumpkin guts, I don’t think.
  11. I love have a deep and abiding passion for cheesecake.
  12. I do not even have words to describe my feelings for pumpkin cheesecake. I might eat pumpkin guts if they were on pumpkin cheesecake.
  13. Wine is a necessity, not an option. Riesling, please!
  14. I like to dance, not the normal “Hey let’s play music and move to the rhythm” kind but the “Let’s randomly start shaking body parts inappropriately when excited” kind.
  15. Number 14 is not at all related to number 13.
  16. I cannot tell you how many times I’ve been asked, “What are you doing?” when I break into dance and, yet, I cannot stop myself.
  17. I have zero rhythm. It’s truly pitiful; you should see me on the Wii Fit.
  18. If you ask, maybe I’ll let my husband record it. I’m pretty hard to embarrass.
  19. Fuck is my favorite word ever but Mommy is a very close second. When you wait more than 4 1/2 years to hear your child speak, both sound equally sweet.
  20. My skin was itching over the idea of ending on number 19, I prefer even numbers. Please see number 5.
  21. The reasonable thing would be to edit this list and end on number 20. Please see number 8.
Skill Set Become my BFF
  • Swear while maintaining an otherwise ladylike demeanor
  • Facebook AND walk at the same time without running into anything
  • Talk my husband into anything
  • Find humor in just about anything, including vomit, poop and soul crushing meltdowns in public
  • Burp on command
  • Convince myself that next time it will be better no matter how fucking awful this time was

 

2 thoughts on “About

  • January 9, 2016 at 10:44 pm
    Permalink

    I have a son his name is Alex he will be 13 on March 1st I to this day still have never met or spoke to someone who has a child with Fragile X syndrome.

    Reply

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