Saturday, March 17, 2012

Dear Hayden Michael

Dear Hayden Michael on your 7th Birthday

Seven years ago you made me what I always wanted to be, a mommy. March 18th, 2005 was the best day of my life. I didn't know at the time but my pregnancy with you would be my last. I didn't know but many of those special moments would be my firsts and my lasts. I am so grateful that I cherished every moment of them. The first time you kicked me, I was trying to take a nap. The first time I got sick, I ate hot fries dipped in frosting. That one might have been my fault. The first time I heard your heart beat. The first time I saw your face on an ultrasound. Opening up that piece of paper that told us you were a boy. The first time I heard you cry. The When they placed you on my chest my whole life had new meaning. My life for the first time had a purpose and everything clicked into place.

Watching you grow and learn has been a pure joy. Every Milestone has been a triumph. You have made me a better person than I ever thought I could be. You have made me a better mommy than I ever dreamed of being. You bring the sun through the rain. You bring laughter through the tears. You bring the dreams through the hopelessness.

I only hope I can be half of what you think I am. The unending love you have for me brings me to my knees. The trust you show me humbles me. Thank you for being the most amazing boy a mommy could ever ask for.

Please know that I will screw up it's what mommy's sometimes do. I promise to always love you unconditionally and always believe in what you can do and never underestimate all that you will become.

Your mommy

Thursday, March 15, 2012

Off And Running!!!!

Well today is day number 1 for Hayden on the STX-209 open label medication. We're off and running. We are so excited and so scared. I keep telling myself not to expect too much. Then I hear the stories of the kids who are on it and think Wow just Wow. Kids who were not speaking a word and are now speaking in sentences. A boy with so much social anxiety he couldn't talk to his peers at all just asked a girl to the prom!! Because. of. this. medication. How darn exciting is that. Now Hayden is on it and the sky is the limit. Yep I am going to expect too much but what an amazing feeling to have something tangible to reach for. I cannot wait to see what this does for Hayden. Not that he could be more awesome but wow I can't wait for his awesomeness to grow.

Our foster care situation has been dramaless. Which has kind of been nice. It's been slow and I'm getting very few calls. I don't know why it's slowed down and I haven't asked...yet.

Saturday is Hayden's birthday party. My baby is going to seven...SEVEN! Wow when did this happen? I thought I would try something a little different this year. I decided to ask Hayden for input on his party. It is his birthday after all. Imagine how surprised I was when he knew exactly what he wanted. EXACTLY. I can barely get him to tell me what he wants for breakfast let alone everything he wants at his birthday party. So this could mean one of two things. A) he is really starting to care about stuff like this -or- B) He thinks I stink at party planning. I'm going with (A). I would like to ask that everyone coming on Saturday keep in mind this entire party was planned by a SEVEN year old, right down to the kind of ice cream being served.

I had to pull out a pic of Hayden at four because I couldn't remember what his birthday theme was. It was bugs for anyone who might be wondering. I will say I made the cutest darn bug cupcakes. See cute right?

Public Service announcement:
I was standing in line at Target the other day and had a complete internal battle with myself. Please note that I said internal. The battle was about at what age is too old to have a word on the butt of your pants. I'm not taking about the name of your jeans but a full blown word. I have figured out the answer because I am a complete and utter genius. You are too old to have a word on you butt when the first thought in your mind after reading the word on someone else's butt is: "sister if your butt is juicy you need to seek medical attention cause that just aint right to have a juicy butt" Since this was my first thought I guess I am too old to have words on my butt. Besides what would my pants say: "Hey I like cupcakes don't judge" and that's just too much to have printed on a pair of pants anyway.


Monday, March 5, 2012

Advocacy and Stupidity

March wow it's here already. March has always been one of our busiest months. Those of you who follow my blog regularly know that not only is March Hayden's birthday month but its also the month that we recognize Fragile X Advocacy Day and Spread the word to end the Word day.
So on the same day, March 7th, we advocate for Fragile X and we advocate against stupidity.

Fragile X Advocacy Day: March 7th
On this day 150 Fragile X advocates from all around the country are meeting with Congress to help secure funding, advance research, and spread the word about Fragile X Syndrome. Mike is one of those advocates again this year. I think this makes 3 years in a row that he has traveled to D.C. with our fragile X family to advocate for our little man and many others just like him. I cannot tell you how proud I am to be his wife. I cannot tell you how awesome it is to be part of this amazing and supportive FX family. How cool it is to think that today in Washington D.C. our stories will be heard, our pictures will be seen, our letters will be delivered. Our representatives will see a picture of Hayden and our family. How cool is that? How great is it that these amazing advocates spend their own time and money to make sure our voices are heard. From the bottom of my heart I thank each and everyone of you for being such amazing people.

Spread the word to end the word day: March 7th
Some day I hope that we will live in a society that no longer needs a day like this. Someday I hope everyone realizes that when you say something is "retarded" no matter how you are using it, it's painful to someone. I don't like it when it's used as a medical term. I don't like it when it's used to create awareness and I especially don't like it when its used as slang. I signed a petition years ago to never use it and to call people out when I heard it. I NEVER use it and you most definitely would never hear me use it to describe Hayden in any way. Not to create awareness and not to describe his disability. Stop using it! Because what you are are loosely referring to as retarded will never come close to what my little boy is. It will never describe the goodness that radiates from him. I am thrilled to say that our school district no longer uses the term. For the first IEP in two years I did not have to hear the word uttered once. I did not have to ask them to not say it. I cannot tell you how awesome it was. I want to say thank you to our family and friends who no longer use the word around us. I REALLY want to say thank you to our family and friends who have stopped using the word all together. It means an awful lot to our family to be respected in this way. Those of you out there that continue to use it as slang; grow up and STOP. Show some respect for the people around you. If you need a list of other words you could insert in place of it let me know. I will be happy to send you one.

Happy Fragile X Advocacy Day,
Tina and Hayden