Monday, November 3, 2014


Sara and I were married in 2006 in our hometown of St. Louis, Missouri.  On our 5th anniversary I wrote about our engagement and wedding and you can read story that here:  Here is a picture from our 5th anniversary.  We found an amazing bed and breakfast near St. Louis in Clarksville, Overlook Farms.  It was an amazing overnight stay and a perfect way to celebrate 5 years together.

Unfortunately in 2006 the only place we could get legally married in the US was Massachusetts and you had to reside there in order to obtain/maintain a legal marriage.  Neither of us wanted to move away from our families, so we had a little ceremony in front of our family and closest friend followed by a celebration a.k.a. reception.  It was an amazing day that wasn’t legal, but that didn’t matter to us as long as we could make a life commitment to each other.  It was the greatest day of my life.

Shortly after we were married we bought our first house in 2007.  We were approved for a loan with Sara’s amazing credit and both our incomes, that wasn’t as hard as we thought it would be.  Once we were settled in we started planning for our 1st baby.  After 1 year and 5 tries Sara got pregnant; it was very emotional roller coaster.  I learned a lot of things about getting pregnant; it’s not that easy as one may think. We welcomed Jackson into our world in 2009, the second greatest day of my life.  

Unlike hetero couples who get married, have children, and automatically get rights…we had to hire an attorney to get all the legal documents to protect us if something were to happen to one or both of us.  Power of attorney, living will, name change, adoption…the list goes on. Since same-sex marriage is not recognized and we have all the “legal” paper work, a judge can still rule not in our favor or best interest if something were to happen to one of us.  Jackson is not biologically mine so we had to follow the Missouri laws on adoption.  It was another emotional roller coaster in addition to the costs of getting pregnant and attorney fees, but on Aug. 18th, 2010 I became Jackson’s second parent making it the third greatest day of my life. 
The US has come a long way since 2006 with 21 32 states legalizing same-sex marriage, but there is still a long way to go.  Missouri is now recognizing same-sex marriage established in other jurisdictions, but doesn’t issue marriages licenses to same-sex couples. In June 2013, the Supreme Court struck down section 3 of the Defense of Marriage Act (DOMA) and required federal government to treat legally married same-sex couples on an equal basis with heterosexual married couples.  The economic impact of this ruling is huge for our family.  I still have state taxes coming out of my paycheck on health insurance that my hetero co-workers do not have to pay for their spouses.  It’s work in progress.

Wikipedia provides great resources if you are interested to learn more about marriage rights and benefits:  and same-sex marriage:

Fast forward to July 2014….our family traveled to Orange County, California for the National Fragile X Conference.   Sara’s parents traveled with us to also attend the conference.  Sara’s brother and sister-in-law live in Los Angeles so as an added bonus we were so lucky to spend some time with them while there.  The icing on the cake while in Orange County Sara and I got legally married.  I married my wife twice.  It was crazy emotional just like the first time. guessed it...the forth greatest day of my life. 

Instead of a reception we headed to the beach, not a bad substitute.  When we arrived at the hotel to get ready for the beach we were greeted in the hotel lobby by a friend of whom we have become very close with from a club we never knew we wanted to join, the great Holly Usrey-Roos.  She greeted us with a huge hug and surprised us with flowers.  It is very comforting to be accepted in our new found family in the World of Fragile X and we have been so lucky to meet so many amazing people in this journey.  I don’t even have the words to explain it, but it means the world to me and my family to be embraced whole heartedly.

Even though our honeymoon the second time around was attending a conference hosted by the National Fragile X foundation and we only saw the sun a few times while in California, I wouldn’t have traded it.  We continue to learn more everyday Living the Fragile X way. The conferences and workshops we attend provide us these great tools to help navigate through each day.  Through our Community Support Network we continue to meet other families like ours who have been there, done that, going thru that, and then some.  So far in the 3 years since Jackson’s diagnosis I have made so many friends who are more like family and for that I am eternally grateful.    

Wednesday, August 6, 2014

The modern day Pat…

Ever feel like everyone is looking at you..   trying to figure out who or what you are?  I feel that way a lot. 

The sneers, the dagger gleams, the shooting beams, the awkward stares…   It pierces through my entire body, makes feel less confident, and creates an overly extreme existence of anxiety. 

The worst is when I have the urge to use the restroom; I hold it as long as I can when I am in public places.  Unfortunately sometimes nature wins and I have no choice, I must go.  The closer I get to the doors with the gender signs that read Men or Women, Boys or Girls, Gents and Ladies, my heart begins to race… my palms sweet…  it gets harder to swallow.  I take a deep breath, straighten my shoulders, and push my chest forward trying to reveal my barely B’s, my perky little breasts… just hoping if someone is staring or someone is on their way out…they see my booblets and not question, “Why on earth did “that” person open the door with a skirt on it!”  

If you really want to know… I sit to pee, I belong in here, I have all the right parts….but to many I just look like teenage boy.  Sure that might seem like a compliment in a way just turning 40, yup I get carded to purchase booze, but really it is awkward and uncomfortable. 

There are so many others…like me.  The ones that dress and look like boys.  I know I choose to dress the way and keep my hair short.  I always preferred slacks over dresses, boots over heels.  I am so comfortable being me, the tomboy next door and it hasn’t been easy.  

Growing up sometimes was hard; don’t get me wrong here I had a truly amazing childhood.  I played every sport I could, when the sun came up I was outside until my mom whistled for me to come home for dinner.  I explored caves, swam in the creek, and played army in the woods….I loved every minutes of it.  My brother got all the cool toys, the cars and the G.I. Joes, while I got the Barbies and the dolls.  I got cool stuff too, like my dirt bike, softball gloves, and whatever music I wanted to listen too.  I don’t resent my parents for buying me gender appropriate toys; I love them for supporting me and trying, and oh…let’s not forget cleaning up my wounds from playing rough like the boys.  I did play with my Barbie’s, just not as much as some of my other friends.  Barbie married G.I.Joe and not Ken in my fantasy world. 

When all my friends started to wear makeup and bras in middle school and I was still playing in the dirt and wearing wife beaters under my shirts.  When we had to start changing for gym class; I was shy, embarrassed, and underdeveloped to say the least.  I always waited for everyone to leave the dressing room before I started to change.  I was bullied for being a tomboy, for being different.  I started hating going to school and my 6th grade year I would come up with ways to come home sick.  I had very few friends back then, some of which stuck up for me when the other girls were mean to me.  I will never forget them for doing that…that had such an impact on my preteenhood  to teenhood, they taught me how to rise above the hate and the bullying, and that not all girls are mean. 

My tomboy awkwardness followed me into High School, but I found Track and Field, a sport where I could be an individual athlete and a teammate, exceling in both.  By trial and error coach finally placed me where I belonged and I was really good in my events…as a freshmen I moved up to varsity in the middle of the season.  This helped boost my confidence, but it didn’t take away the anxiety of changing in the locker room.  If I got there first I could change quickly, but if I got there when others were there I would change in a bathroom stall or I was late to the fields changing after everyone else left.  Track was like a huge family, they accepted everyone and their uniqueness.   I made so many friends and had the time of my life being a member of the Track and Cross Country teams. 

I went to a Baptist college where the student lobby was divided by athletes, religious groups, and book worms.  I wore my hair super long and in a ponytail back then.  I still was a tomboy that dressed in girl clothes, even had a boyfriend here or there, nothing serious. Believe it or not, I even wore pink, but I was so uncomfortable and didn’t understand why.  The best part about being a girl in my mind during the college years was ladies night at the night clubs where girls drink free.  I didn’t come out to myself until my junior year of college and it took several years after that before I came out to my family and close friends. You couldn’t be gay and live in the dorms at a Baptist college at the time, I don’t know if much as changed there since I attended.  So I stayed in my closet at school; only some of my cloesest friends truly knew….the rest just pondered or assumed. 

Right out of college I got a job for a small company thanks to my college softball coach.  I was very lucky…but I still wasn’t publicly out.  The tomboy in me was dying inside day in and day out as I dressed business casually for work in blouses and dress pants.  I don’t like wearing clothes that are tight or form fitting.  It’s not that I don’t’ like my woman parts.  I just didn’t like that I was a toothpick a stick holding up clothes, so skinny, some people even thought I was ill. I am a very modest person.  I like to wear clothes that are baggy, lose fitting.  Basically what I am trying to say is the grunge era was awesome for me.

During this time I played softball several nights a week.  Fast pitch, slow pitch, competitive, non-competitive, co-ed, womans… whatever softball team I could I find, I played.  I went through a lot short term relationships over those years, all the while not being out to my own family.  It wasn’t until I was in a long term relationship that didn’t work out, my heart was broken and I needed someone to share the experience with. That was when I came out to my family.  I was 26 years old, I just took a new job at a much bigger company, and I was going through so many life changes all at once….it was then I realized I needed my family more than anything.  It was then I also realized my fears of coming out to family were all for nothing, my family embraced me with open arms and accepted me in every way.  It was fresh start for me in so many aspects.  My grandpa asked me if I was happy, and even though I had just been through a bad break up and proudly answered “Yes”.  My grandpa grabbed my arm, pulled me close, and said, “That’s all that matters to me, you will always be my princess.” It was then I knew everything would be OK.

My new job was business attire; it was hard for me to shop for new clothes. Did I mention I am not a fan of wearing woman’s clothing? This make shopping for clothes really hard.  I started off at my new job keeping quiet about my personal life, but after a few happy hours and someone outing me to my team, there was no reason to hide.  Shortly after starting the job, we moved buildings and our attire changed to business casual, then shortly after that my team merged with a group that wore khakis and logo polo shirts.  Things couldn’t fall into line more perfectly to help me with my uncomfortable attire.   It was then when I stopped shopping in the woman’s department for everything except bras and swim tops.  Then…I turned 30 and it was time for another change.  I walked into a salon with a picture of Sharon Stone with short hair and said, chop it off.  The hairstylist was nervous, I would be losing 6 inches of long, thin, straight hair.  She said once it’s gone, I can’t put it back on.  I didn’t care, I wanted short hair.

I was completely comfortable for once in my life now sporting a hairstyle that suited me well.  It was about that time when people in the office who worked in different departments starting giving me strange looks, especially when I used the restroom.  I remember I was coming out the bathroom and this woman that was walking in asked me if I was finished in there.  I was confused as to why she would ask that, and then it dawned on me; I was in Khaki pants and a logo polo that means I must have been the maintenance man working on a broken toilet. 

Several years ago I changed positions within the same company and went from wearing uniform polo’s and khaki pants back to business casual again.  When I pulled up the dress policy for women, I cringed as I noticed it had not changed since I started there.  What am I going to do?  I went shopping for clothes; it was so hard for me.  Luckily I had Sara to help me out; she loves shopping and thinks I am hot in just about anything especially if I wear something form fitting, so it was fun for her.  I settled on a few woman pairs of slacks and blouses, grabbed a pants suit, and lady shoes.  I was terrified in these clothes and it showed.  When I showed up on the first day of my position a friend who was my coworker replied, “Hamilton, what the fuck are you wearing?” as soon as he saw me.  It took everything I had not to cry, I was already embarrassed to wear these clothes even though that was what I was supposed to wear.  I soon started going back to khakis and button up shirts because my management didn’t care what I wore and after a few years the company is now business casual.  I still don’t really fit in the woman’s category for casual wear, but its close enough. Even though I work for a strong LGBT supporting company and there are only 5 other women who work on my floor…I still have to stick my chest out when I use the restroom because woman from different floors come down/up to use our restroom.  Really?  Go back to your floor then I think to myself.

One would think after all the years of stares and sneers; I would be numb and over this fear of using public restrooms, but it is still there.  I don’t flinch much when someone calls me sir, buddy, or young man, but the bathroom is like a booby trap you know that there, but you can’t avoid it.

Two weeks ago we attended the 14th National Fragile X Conference in Orange County California.  So many wonderful families, doctors, therapists, even teachers attended this wonder event that occurs every two years.  Thanks to Facebook, blogs I follow, and many other opportunities I have met many of these amazing people who are living life the Fragile X way, just like my family.  I feel like I have known so many of these people for most of my life, they are like long distance relatives you get to see once in a while and wish you could see more often.  I have read several fellow bloggers posts on their take of the conference and the experience they had since the conference. They are honest and talk about the anxiety they had when meeting new people for the first time, how it affects them physically and emotionally.  They are excited because for one week they feel that no one is judging them when their child melts down in the lobby of the hotel because everyone there has been there, done that, or in their same shoes.  Love, ultimate support, validation for all that we do for children for one full week, it is a wonderful feeling and experience to share.  There were so many times I felt exactly that way during the conference, but not to take away from their amazing blogs or experiences there were so many times I felt the exact opposite.   This was our second conference, so I have met a lot of people in the Fragile X community before this trip. The love and support I received from those who already know me…know Sara…know Jackson far outweigh this feeling of judgment.  I hope you  know who you are… some belong to our support team in St. Louis, some our relationship has formed over social media, some I met you for the first time at this conference.  I cherish these friendships so much and look forward to getting to know more about each of you personally.  When will I see you again? Miss you already!

Maybe I am over reading things…maybe there weren’t stares or glares, but some of the facial expressions I received when making eye contact on the way in or the way out of the ladies room made it hard not to assume.  I encountered a mother and daughter in the restroom and the mother’s reaction was verbal between the stalls.  I am sorry if I scared the daughter, but I was not out of the bathroom before the mother made some very hurtful comments to her daughter on why there was a boy in the girls bathroom.  After this incident, I started going out of my way up to our hotel room because it was do difficult to deal with my anxiety.  I am not sure if this mother follows the Fragile X webring, but I hope that if she does, stumbles on my post, takes this experience as a learning experience, maybe judges less, and teaches her children acceptance of everyone.  This experience encouraged me to write this blog and I went back and forth about even posting it, worried I might offend someone.  

I heard from so many other parents at this conference that one of their biggest fears is their child being accepted by their peers or how they get anxious when people stare at their family when their child has a meltdown, or the mom has to take their teenaged boy in the public restroom because he doesn’t have the motor skills to wipe or pull up their pants all way.  I believe it is important to also hold ourselves accountable to accept those around us just like we want other to accept our children.  You don’t have to agree with my lifestyle choice, but know this…I am happy with my life, I love my wife, my son is my world, and I am proud of my choices.  If you have a question about why I dress the way I do, or why I have short hair, I will point you to this blog post or tell you in a different setting other than the bathroom I am having near panic attack in.  Over the years I have contemplated just going in the men’s room, it would probably be easier or more accepting of others....

Friday, June 27, 2014

Guess what day it is…

“TRASH TRUCK…  FRI…FRI…FRIDAY!!” says the little man as he wakes up with the biggest smile on his face. Friday is Jackson’s favorite day because we have not 1, not 2, but 3 trash trucks that come to our house.

That smile and excitement first thing in the morning is pretty much an every morning occurrence in our house. Jackson sits up in his bed every morning requesting “Faffles”.  Faffles in our house means Waffles in other homes. Before his love for faffles, there were breakfast bars. That pure happiness first thing in the morning is something you wish you could bottle up sometimes for yourself or share with those non morning people.  Jackson has always been happy in the morning.  We were so lucky to have a happy baby that slept good at night. 
I used to be a morning person in my younger years, surviving on 4 hours of sleep ready to take on the day.  I wasn’t a Jamba Juice or Starbucks barista in your face morning person, but the morning kind that wakes up with a smile fully refreshed, ready for a conversation…unless I was really hung over. Hey…don’t judge…you were there once too.  When Sara and I first started our relationship I learned early on that she was NOT a morning person.  Sara took time to wake up, have some breakfast, mabye some coffee before she was ready for a conversation. I sometimes forget that until the morning snapper head reminds me.  Teeheee…I love the morning snapper head with her hair all tussled out of place.  I think it was when Jackson turned 2 and sleep started to become a struggle for him was when I started to lose my morning person self. The long nights that came often of me walking him up and down the hallway facing away from me and then working in front of a computer all day started to take its toll. I think when my morning self completely left my body was when Jackson started having seizures at night. I developed a sleep with one eye open with awareness technique and that morning person was forever lost.   
Even with a bright cheery 5 year old first thing in the morning, it is hard for me to find the joy in getting out of bed, but I do look forward to the mornings he wakes up before I leave for work. That means I get a good send off with a sticky kiss followed up with, “WUV OOOHHH, DAY.”  Translation: I love you, have a nice day. 

Happy Trash Truck Friday everyone….