Tuesday, February 23, 2016

Destination... Prom! The Intro

I've been promising I would make time to write... yet I haven't.  Then this happened today:



And it's fair to say, it's upped writing about Parker going to prom significantly on my to-do list :-)  I've decided to break "Destination... Prom" out into chapters.  Each chapter will share with you a part of our journey to prom. While I know what some of the chapters will be already:
  • The Promposal
  • The Plan
  • The practice dinner
  • Tux Shopping
  • Practice, Practice, Practice
  • Grand March
  • Prom!
  • Recovery, Lesson's learned
I don't know what they will include until they happen.  I also don't know what new chapters will be written along the way.  That's the funny thing about our journey through life, no matter how well planned we are - the reality is it's all out of our control. The best I can do is to be prepared to roll with whatever changes come our way in the most positive way possible and share them with you along this journey. 

Other things will happen during our destination to prom.  Allison will be going to Washington DC with me and over 130 other Fragile X Advocates (including my mom!) for her first ever National Fragile X Foundation Advocacy Day!  Which is definitely something I'd like to write about.  I have a list of over 25 topics that I jot down as they come to mind and are "written" in my head that I need to take the time to type into this sometimes neglected blog.  

The point is, on our destination to prom, life will continue on.  Through our practicing, our countdowns, our preparing - life will go on and I will do better (fingers crossed) about sharing those paths along our journey as well.

For those new to our journey and the blog - a quick who's who, it's a short list which makes is super quick.
There is me/mom/Holly - I have the pre-mutation of the Fragile X gene, also often referred to as being a "carrier". I had no idea I carried this gene mutation until shortly before Parker's 4th birthday when he was diagnosed. We can now trace the gene mutation in our family for 6 generations - yet no one, not a single one of us knew until late March of 2013 when Parker's test results came back.  I am also possibly the coolest person in the entire world for 1 simple reason, I am the mom to the amazing Parker and Allison!  It's fair to say my world revolves around them, which is exactly how I like it :-)
There is Parker - Parker is 16 and was born with a genetic disability called Fragile X Syndrome. Please take time to read more about it! He's pretty moderately affected and more importantly the most amazing young man you could ever meet (I'm not at all partial!)
There is Allison - Allison is 13 and was also born with Fragile X Syndrome, however, for many reasons (including because she is a girl and has 2 X chromosomes) she is very, very mildly affected.  The truth is, if Parker had never been tested, I would have never known there was anything unique about the way Allison's brain works. While she has her challenges because of fragile x, they are hurdles she can more easily jump. She is, the most amazing young lady you could ever meet (again, not at all partial here!)

Let's get started!  Destination... Prom!  The Intro :-) 

Our lives revolve around the calendar.  Allison fondly refers to me as "CPM" or "calendar planning mom" , which she finds much more amusing than I do. The reality is, planning and calendars make our lives easier. They keep us on schedule and they keep Parker in the know. It helps him to prepare for what's ahead and to be able to cross off what is completed. Having a start and end to things in his life is important and creating a monthly calendar is a very easy way for me to make that happen and keep us all on track!

Late last summer our 2015 - 2016 school calendar arrived which meant Parker and I would immediately sit down with a highlighter and figure out what on the calendar was for him and what was for Allison.  (our calendars are color coded too...) Parker loves (loves) school dances.  Not because he likes to dance necessarily but because he loves to have a "hot girl" by his side as he escorts them to dinner and the dance, just like every other boy his age.  He feels included, he feels special, he feels like a regular boy in high school. So, his eye is quickly scanning the calendar for "Homecoming" and anything resembling the word "Dance".

I knew at this point the word "Prom" wouldn't pop out to him and, because I was not ready, I did not point it immediately out - instead I just made a mental note of it until after Homecoming when he wanted to know what dance was next.  (Homecoming, I must add where he went with one of the cheerleaders, Sierra, - a beautiful, friend since grade school with a heart of gold who picked him up and drove him to dinner and the dance - talk about independence and feeling "typical" - that did it! I can't resist... see the adorable picture below!)


Parker and Drew!!  Drew, the most amazing friend - ever!

Back on track here... after Homecoming, Parker wanted to know what dance was next.  In November I finally broke down and told him about Prom.  He was instantly intrigued and full of questions. Mostly, "Who am I going with?"  I just couldn't. I couldn't answer. I couldn't guess. I couldn't promise. I just couldn't. Which, is hard for me. What I could do is put it off. So I told him, like any "good" mom would (it's ok to cringe) that we "aren't allowed to talk about prom until after Christmas because all of the prom stores are closed until January." *I never claimed to be perfect --- but it worked and bought me time.

In January, Parker was  so very focused on "Dressing like Dan" (a blog for another day) that prom wasn't the top obsession on his mind the first couple of weeks - and then, it returned. Daily he asked (and by "daily" I mean at least 600 times a day) "Who I go with?" All I could say is "I don't know. Because I didn't and it took my anxiety to new levels even thinking about it so I tried not to.  Because, you know, if you put something off it just goes away... right?  Ok, not for me either but it's all I could do at that time.

And then... the letter from the school arrived in my mailbox. All 3 pages of the "how to's" and "details" of Prom 2016.  I had no choice but to face prom and make the leap. I wasn't ready. I was scared about what may or may not happen and how I would help him through this. I did an amazing job at overthinking until finally, I took a deep breath and put it out there for the world.

On January 28th, 2016 at 4:28 pm, just as I had done for every dance prior to this for high school - I made a Facebook plea.  I want to say, as "easy" as this may appear, it's honestly one of the hardest things for me to do. It's scary. I never know what will come of it. I never know what people's reactions will be. All I can do is focus on what Parker needs and pray for the best.  With that I hit the button and the following was posted...

"Super, incredibly amazing, handsome 16 year old boy (named Parker) is looking for a date for Canton's prom on Saturday, April 23rd. 
He's been asking me since November, today the note came home about signing up so it's time for this mom to swallow her anxiety, bite the bullet and find her son a date for Prom. 
Grand March and Prom. He's ready. He's asking daily when we can shop for something to wear and more importantly who is going with him. Who can help me make this happen?
Please message me if you are interested in accompanying Parker to Grand March and Prom. :-) "mile emoticon
And then... the wait, very anxiously, began.

What has happened since that time, has completely blown me away.  (in the most amazingly wonderful way!) 

I hope you will continue to follow our journey on our Destination... Prom and the other paths life takes us on along the way.

Coming soon... Chapter 1... Promposal, the Great Ask  :-)



**Parker was born with a genetic disability called Fragile X Syndrome. Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of autism. Fragile X has been in our family for at least 6 generations yet we had no idea until Parker was diagnosed in March of 2003. Please take time to learn more about Fragile X Syndrome and all fragile x related disorders at www.fragilex.org 

5 comments:

  1. Lord,, you are one amazing person and Mum. Just saw the video of Parker and the tie being presented to him by the young lady, so went to your blog. It is so wonderful to see how you are working to ensure both of your children have normal lives with all the complexities it can involve. Bravo CPM... well done :)

    ReplyDelete
    Replies
    1. Thank you so much! I am only amazing because of the incredible gifts my children are to me and the incredible perspective they have brought to my life :-)
      They are my world. In return I do my best to make our world a better place for them!
      Thank you for reading a for being a part of our journey!

      Delete
  2. You are absolutely amazing ! Your children are blessed to have you as their mom and you are blessed to have them!!I look forward to his prom !! I hope he has a awesome time!! Can't wait to read more... God Bless you all!!

    ReplyDelete
  3. You are absolutely amazing ! Your children are blessed to have you as their mom and you are blessed to have them!!I look forward to his prom !! I hope he has a awesome time!! Can't wait to read more... God Bless you all!!

    ReplyDelete
    Replies
    1. Thank you so much! We are, indeed, very blessed! Thank you for reading and following our journey!

      Delete