An open letter to my Mocha “Mookie” Latte (March 15, 1999 – July 24, 2016)

My heart is incredibly broken as I write this letter because I had to say goodbye to you yesterday.  I know you are in heaven jumping fences, chasing squirrels, running with the horses, rolling around in the smelliest of things, passing out high fives, riding in a jeep with the top down and your tongue out, blowing (sneezing) on others to get their attention, giving hugs to your uncle Donny, Great Grandpa Bopots, fur brothers, and fur sisters as they welcome you home.  Even though it was so hard to say goodbye, I know it was right for you.

Thank you so much for everything you gave me over the years. I am the luckiest human because I had you. You will always be my princess and moo-moo mutt. You left paw prints all over my heart and soul.  I loved holding you like a baby even on your last day here with me, something I will cherish until I hold you again.  I am so thankful I was able to hold and cry with you in those last moments before saying goodbye. I can’t stop crying and thinking about you, I miss you so much already. 

I will never forget the first day I met you when I came home from a long day at work.  You were the happiest puppy and you were instantly mine from the moment I met you.  I may not have brought you home, but it was fate that brought us together and allowed me to be your mom.  You gave me the greatest joy in the 17 years you were here with me on earth. What a great run we had.  I couldn’t have asked for a better daughter, best friend, and life companion.  You were so smart, funny, loving, athletic, and were always there for me when I needed you the most. I don’t know why you chose me, but my only hope is I was there for you as much as you were there for me.

When you were a puppy and I took you to meet your Uncle Donny, Aunt Tricia, and Cousin Andrew you were so excited.  Andrew was maybe 1 year old at the time when he came running at you full speed and jumped on top of you like a pro-wrestler, you didn’t growl or bite him.  I was so proud of you for that, I know it hurt.  You were so incredibly amazing with children.

I know we moved a lot in the early years, but you always handled it so well. When I brought home your baby brother Tyler Bob, you welcomed him with open arms even though he is a typical Chihuahua. He barks a lot, pulled on your ears, used the floor as his personal bathroom, well… you know the rest. You were the best role model for him even though he didn’t retain anything you taught him.  Thank you for being so patient with him, you were the best big sister.  He is really having a hard time when I leave the room since you are not there to cuddle with him.  He is really going to miss you. I don’t know if Jackson will understand that you are not coming home from the doggie hotel, but I know you made such an impact on his life.

I have the best memories of when you were younger and could jump in my arms, or that one time through the sunroof of my car without leaving a scratch on the roof.  I also remember the time you scared me to death when you jumped our 5ft. fence in the city, ran down to cross a busy street, was tapped/hit by a car, and came running back to me jumping in my arms.  The squeal of those tires haunted me and you for a long time. You never did that again, well at least at that house.  I giggle about the one time you were at grandma and grandpa’s jumping the fences and met a horse for the first time. I will never forget that big smile on your face and that horse as the two of you ran around like you were the best of friends.  Sorry I didn’t have a smart phone back in to capture that memory. That horse’s mama was not so happy about any of it, but it was worth watching you run like the wind. I know that last year was hard for you when your back legs didn’t work as good as they used to, but I didn’t mind carrying you up the stairs to bed at night.  We always thought you would be carrying me up those stairs with my knees.

You made me laugh a lot over the years. I loved how you would have whisper conversations with me. Funny moments that still make me laugh like the time you caught a squirrel through the fence and his tail popped off, or that the time you brought mamma a squirrel when I wasn’t home. She didn’t laugh like I did, but it was funny. 

You loved to look out the window and watch over the house, you were so protective of those you loved.  When mama got pregnant I remember you freaking out when the dishwasher or dryer ran.  You loved it so much when people came to visit that your whole butt would wag not just your tail. I loved seeing that smile on your face when you greeted me at the door when I came home from wherever I had been.

Because of you I became a dog person, or maybe I am just a Mookie person because as long as Tyler is still around the jury is out on that topic.  You filled my life with so much love and happiness.  I love you more than words can say.  I have so many more wonderful memories of you and I am so lucky they will be with me forever. For these reasons I am leaving this letter open as I continue to think of you…

Love always, 

Mom 

Sad face... ; - (

You know...  the one that pops up when you are looking for a video on YouTube and it doesn’t play on the device you’re watching from, or the video has been removed.  We call that sad face in our house, Jackson understands that phrase.

Sorry I haven’t been blogging.  I started a new job as a team lead this year and I have been super busy getting into the swing of things.  Jackson has found a new obsession with my computer as well, so I can’t sneak away to write or share my stories.  Aside from that we have had so much going on, some good some bad, but I am sorry for not keeping everyone up to date on our journey.  Sad face...  ; - (

Sara and so many of our Fragile X families shared facts each day during the month of July on FaceBook, Twitter, Instagram...but I missed the mark this year.  Sad face....  ; - (  So for my followers, here are the 31 Shareable Fragile X Facts from the National Fragile X Foundation. Study them, there will be a quiz later.  I haven’t been on the FaceBook much, but it is important to share these facts.  Also...July 22^nd is National Fragile X awareness day in case you didn’t know.  So many of our friends and family wore green to show support for our family and they tagged us on the social media.  I played softball the night of the 22nd and brought a temporary tattoo for my friend who has black and gray art on her body, she wears it well.  And hey ladies...she is single.  She was so excited, put it on, and exclaimed she was going to a real one.  She boasted that it would be her first color tattoo and that very weekend I got this text message and picture, “Let Jackson know I respect the challenges he has every day...  Let him know I think he ROCKS!!!”  The love and support our family receives is so amazing and I am so grateful to have such wonderful people in my life.

Sara and I don’t talk about the bad days or times that our brought us by the letter F and the letter X on the Intra-webs.  We always share the positive, the inch-stones, the fun, and the laughter.  Sometimes it is hard to find something positive to share though because you are exhausted and this is one of those times.  In the House that Jack Built, we are going thru one of those times. Over the past few weeks Jackson has been struggling, mostly in the evening time.  This is a common story you might read about from my fellow FX bloggers, or you might have heard while attending a conference or workshop for Fragile X.  Our Fragile X kids come home with good reports from teachers and aides, but then fall apart when they get home because they are exhausted from all the sensory input, working so hard to exist with their peers, and doing all the right things to accomplish their goals.  Home is where they can exercise their demons. Home life doesn’t have the same structure at school, even if we follow the same routines day in and day out.  Heck we all have our ways to unwind, relax after a long day (booze).  Towards the end of the school year we noticed that Jackson’s hyperactivity was off the charts. So after much deliberation we consulted with our doctor and we upped one of Jackson’s medications.  The first week of adjustment he took a few naps, but then we saw a drastic improvement from the constant jumping up and down nonstop hours upon hours. Now we are two months in this new dose and we have an ubber- crabby, agitated, aggressive, tantrum, preservative-speech, high anxiety, self-injurious, out-bursting 6 year old.  Is it the medicine? Is it because summer school is over?  Now camp is over? Are we not doing the right things?  Providing him enough supports at home? Not giving him enough sensory breaks?  Sad face...  ; - (

The last few days have been extremely hard on all of us.  A few weeks ago I injured back and discovered my body is really 41.  When you can’t bend over to tie your shoes without lightning bolts shooting down your leg for two week.   Hmmmm...it prompted me to see a doctor to tell me what Google told me which was I gots the Sciatica.  Sara is on a tri-weekly ear infection, chest congestion, drainage, allergy attack since this spring.  If that is not bad enough, there is the headaches.  These headaches are fairly common in the Fragile X carriers.  Sara participated in a sleep study that proved she is a chronic snorer which also plays a huge role into the morning headaches.  She is soon to be fitted for a device to help with that...but if you add up that with not getting sleep, we are a house of Snippity-Snips Crabasaurus Rex.  Sad face...  ; - (   

<- Note: we just started introducing essential oils in our house and they have been doing wonders for the Sciatica and the headaches. We are work in progress...>

Fast forward to last night...  I get home from work.  As I open the door I am greeted by my bouncing boy, “Na-na’s HOME!  Eeeeeee!”  Then he bolts back to the sliding glass door.  The neighbor behind us was getting their grass cut.  Sara is using our new essential oil cleaner to wipe down the counter tops as the lawn care dude finishes and leaves.  We all sit at the table so Jackson can tell me about his day.  Sara starts the conversation, prompting Jackson to finish.  Goes something like this:

Sara: “Jackson, who came over to see you today?”

Jackson: “Casey!”

Sara: “Not Casey, but Miss Ssss”

Jackson: “Sar-rah!”

Sara: “Where did we go...”

Jackson: “Bowling...”

Sara: “Yes, downstairs she took you to play bowling...but where did we take Ma-ma’s car”

Jackson: “Lib-ary!”

Sara: “What did we do at the library?”

Jackson: “Com-com-com-cuter”

Sara: “That’s right, Miss Sarah helped you on the computer. What else did we do?”

Jackson: “Two books...”

So the two of them will go back and forth to tell me about Jackson’s day before I go up and change into shorts.  When I get back downstairs, Jackson is in the recliner rocking and watching Lady Antebellum YouTube videos.  Sara leaves the room as I sit on the couch.  My body melts into cushions, it was a long day, when I see a flying iPad heading my direction out of the corner of my eye. My reflexes move my arm quickly to protect my head as it slams into my not-so-funny-funny-bone, just happens to be the same arm of my tennis elbow so I can’t stop my loud reaction, “OUCH!” Damn that hurt I thought as Jackson bolts up and takes off for the dining room window saying, “Boo-boo, sad” as he slams his head into the window.  Sara puts herself between him and the window, points him back into the living room.  Sad face...  ; - (   

Things come to a brief calm as we quickly discuss the dinner plans and who is making things. Sara stays with Jackson, while I go cook.  I can hear her reading his new books and they are giggling and having a great time.  This completely melts my heart to listen too as I try to forget about my long day at work and my throbbing elbow.  Did we cause this by prompting him while he was hyperaroused from watching the lawn boy?  Are we meeting his sensory needs? Reminding myself... BIOLOGY, BIOLOGY... he didn’t’ mean to hurt me. Sad face...  ; - (   

Dinner is now served...everyone is at the table. 

Jackson: “GEEN-BEANS!”

Sara: “Yes, first chicken – chew-chew-swallow, and then green beans”

Jackson eats a few bites before he starts taking the food out of his mouth throwing it across the room, some of which hits me in the face and gets in my hair. I don’t make eye contact, or say anything, just keep eating.   Good thing we have dogs as they clean up the floor. The verbal prompts are getting to be too much, so Sara grabs his visual aide.

Jackson: “Na-na ALL DONE, Na-na all done....”

Lately Jackson has been perseverating on those at the table being done with their meal.  Doesn’t matter if we have full plates or not.  We are still trying to figure out how we should respond.  This night we keep pointing to his visual, not talking to him or each other, as we all finish our meal.  There is a lot of trial and error when learning to live with Fragile X.  Sad face...  ; - (

Jackson and Sara leave to go do their nightly FaceTime with Pat and Sinky as I clean up. Typically as a reward, Pat will play guitar for Jackson for making good choices at dinner, but no reward this night. Sad face...  ; - (

Once dinner is cleaned up and FaceTime is over we tell Jackson he can earn a walk or ride in Na-na’s car if he can make good choices, keep a calm body, nice hands, listen, and take his medicine over the next 30 minutes.  Jackson asks for the timer and it is set for 30.  That is a long time to wait, but as he is watching the timer on my iPhone he is perseverating on it. 

Jackson: “1, 2, 3456, timer done!  I, 2... 10, timer done!”

Sara and I discuss how this hasn’t been working lately because he is getting too excited and hyperaroused while watching the timer, which if you haven’t figured out yet will lead to a bad choice.  Sad face...  ; - (   

Jackson: “1, 2, 3456, timer done!  I, 2... 10, timer done! Jackson POOP!”

Sara: “Jackson, do you need to go the potty.”

Jackson: “Yes! Timer DONE!”

Sara leads Jackson to the restroom while I shut off the timer.  By the time he is done and comes back into the room he has forgot about the timer.  Sara goes in the kitchen and takes her medicine and Jackson heads to the window where he spots the neighbors new puppy.

Jackson:  “Puppy....WOODS!”

I go over to him while he is looking at the puppy running around.  We watch for a little while, then the puppy goes inside, just in time for his medicine.  After the medicine routine, Jackson grabs his shoes...he is ready for his walk/ride.  We tell him he did a great job at following directions, keeping a calm body...ask him if he wants to go for a ride or a walk.  He chose ride.  We all get in my car and head to the “Deer watching” spot.  The deer are not out though...so we wait for a little bit, sing the deer song a few times, and Jackson asks for school.  So we start to drive out of the subdivision to drive by school, when Jackson gets too excited and smacks Sara several times on the arm.  So we turn the other direction and head back home.  Jackson figures out that we are not driving by school and gets upset.  He slaps Sara a few more times before we make it home. Sad face...  ; - (

Hoping we can find a calm in the storm we offer him two calming choices once inside...  either he can rock in the chair while listen to headphones, or he can lay on the floor with this weighted blanked while we work on deep breaths.  Jackson wants none of those options and heads for the dining room window.  Maybe the deer are out there, maybe Charlie and Adam are playing catch, and maybe there is a hop-hop.  He is shouting all these things while on his mission to the window.  While he is heading to the window Sara and I look at each other with defeated expressions. Then WHAM! Jackson slams his head into the window, none of things he wants is outside the window. WHAM!  I head over to stand between and guide him away.  For the next 45 minutes Sara and I act as a wall barrier between the dining and living rooms. We are not speaking, just holding him close, letting him press his head against us, letting him push while getting pressure on his joints, letting him scream and cry, letting him calm himself down without anyone else getting hurt, once and awhile guiding him to his soft pillow and weighted blanket without words. In my mind I am playing over and over, “Remember it’s the biology”. Sad face...  ; - (

It’s nights like these that break your heart because you know he can’t help it.  It’s nights like these you play over and over in your head, what did we do wrong?  Should I have grabbed the Calm Down Book sooner? Should I have not let him go for a ride? Should we have not done FaceTime?  Should we have not had him sit down after lawn boy was finished and tell me about his day? Is this the right dose of medicine for him?  It’s nights like these you want to tell Anxiety and Hyperarousal to Fuck-Off or tell the ABC’s of behavior to take a Fucking hike!  It’s nights like these that keep you up at night when everyone else is sound asleep.  It’s nights like these that are always in the back of your head...  I know we will get thru this, we figure out the equation and find the right supports, but for now..... Sad face...  ; - (

Rewedding….

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: http://frageelayx.blogspot.com/2011/09/happy-anniversary.html.  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. 18^th, 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: http://en.wikipedia.org/wiki/Rights_and_responsibilities_of_marriages_in_the_United_States  and same-sex marriage: http://en.wikipedia.org/wiki/Same-sex_marriage_in_the_United_States. 

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.  Yup...you 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.    

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 6^th 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 14^th 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....

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….

Nana's home...

I recently started a new project at work that is sucking my brain cells completely out of my head by the end of each day.  I sit on a Bridgeline all day assisting contracted field technicians through upgrading laptops for the top producers of the company.  My team wrote a script an app that backs up copies all the producers’ data (documents, pictures, settings…) and restores all the data to the new laptop. I wrote the document outlining every step from running the script app to get the data, unplugging the old equipment, and plugging in the new equipment with pictures to help them get through it all. The document is very basic, written so any audience should be able to follow it or at least I thought it was.  We used this same documented process for the previous project in which we migrated 30,000 plus machines, I just updated some of the pictures.  Unfortunately the document is not fool proof from some of these techs and at times makes me question my abilities in technical document writing.  I walk the field tech through each step reading them word for word off the document they have right in front of them. Apparently it makes more sense when they hear my voice reading aloud to them then when they read the words off the paper themselves.  It’s not fun like reading Pete the Cat books to Jackson while singing and do fun cartoon like voices, it more like reading a TV instruction manual over and over.  That gets real old having to it multiple times throughout the day.  Then you throw in the fact that these field techs can’t plug in displays, USB devices, or the power adapter without guidance. WOW!  It’s a head scratcher to me how some of these techs are qualified for this job. By the end of the day my brain is complete mush…add in the extreme traffic all the way home I am more gone than a very dead zombie.

I pull into the garage, turn off the car, and sit for a brief moment taking multiple deep breaths before entering the house.  I definitely don’t want to take this rough day into my loving home and I wish this nagging headache would just go the <insert expletive here> away. While entering the key into the door I can hear the dogs going crazy as their toenails tippy-tap on the floor.  I can also hear Jackson jumping up and down.  I open the door, the dogs are right at my feet making it nearly impossible to walk in.  Jackson is jumping up and down, flapping his hands, then falling to the ground. 

“NANA HOME, NANA HOME….eeeeeee….NANA HOME” Jackson says. “NANA HOME, NANA HOME….NNNEEEEE….” If I don’t respond soon, Jackson’s will get stuck in this pattern like a broken record. 

“Yes Jackson, nana is home...  are you ready for a hug?”

Jackson starts to stand up “NANA HOME, YES! HAPPY…” hands are flapping as he starts to jump up and down.  This…this right here makes that long day at work seem like a thing of the distant past and it jolts me awake from my zombie like funk.  

“Are you ready for a hug?” I ask once more.  The jumping stops and his arms reach up for me.  He’s ready.  I quickly pick him up, I squeeze tightly as he puts his arms around my neck and lets go just as fast.  “Kiss” I say.  He quickly leans towards my face; I get one quick kiss in, and set him down fast. If I hold on too long, I get a head butt to the lip.  I treasure these quick moments, they are the best part of my day. “Can Nana take the dogs out now?” I ask.

“Nnneeeee…YES!” Jackson responds with hands flapping rapidly just before he takes off sprinting towards the living room. 

Nana’s home….

Still Catching Up....

***Disclaimer: This post has been sitting on the editors table awaiting some pictures.  I am not sure if I will ever have time to sort through the pictures before the year goes by and this post is lost.  I want to get everyone caught up on the Hamilton household so I can get back to post more regularly.  So here is December...without pictures.***


December 2013 - Since I am not getting any younger….and I “point and click” for a living since my senior year of college, I developed a case of tennis elbow.  I had physical therapy for the month of November and it was wrapping up in the beginning of December.  The Windows 7 project and excessive overtime now behind me, it was time to get caught up on being with my family, friends, and rest…must needed rest.  Last year I was not able to do much shopping for Christmas because the project consumed all of my free time.  This year I was able to go with Sara to shop for our families.  I would say the majority of our gifts came from Target, a familiar place for Jackson to shop and it is one of his favorites.  He likes to try on the hats and asks for your phone to take a picture. I have tons of random pictures in my phone of Jackson wearing/trying on hats at Target.

We took Jackson to Milk and Cookies with Santa hosted by Life Skills' TouchPoint. Every year the event gets better for Jackson.  Not to mention Jackson’s communication has really taken off, so he can express what he wants and feels with words more and more everyday vs. pulling our hair or banging his head in frustration.  “Oh my Gosh Josh” was in attendance again this year, he remembered Jackson from the previous year and Jackson remembered him.  Sara and I have learned how to take turns waiting in line for each of the activities and bringing Jackson over when one of us reach the front of the line.  This year for the first time Jackson was able to get a balloon animal.  He requested a blue deer.  Jackson also got a candy cane tattoo on his hand and he really enjoyed the choir singing on stage.  We lasted longer this year than we have before and got an awesome picture with Santa.  We also attended our local firehouse with Santa event.  Jackson had a blast and was able to get a picture with both Mr. and Mrs. Claus. 

Sara and I attended the annual OBG Christmas party.  Kim and Jordan hosted this year and it was Mexican themed food.  Thanks to all those who make me a special side dish without onions.  We played an awesome game where there was this wrapped gift and each of us took turns rolling dice.  I can’t remember what you had to roll to get a chance to open the gift with oven mitts on, but it was a blast.  I think my abs still hurt from laughing so hard.  It was great night, filled with love, laughter, joy, cheers (lots of cheers), and of course Karaoke.

I took the two weeks off between Christmas and New Year’s.  Jackson helped decorate the tree this year; however it was more fun for him to pull the ornaments off and throw them.  We wised up and use plastic Christmas balls that we bought on clearance after Christmas the year before.  Christmas morning is still hard for Jackson.  This year Sara woke up with cold, Jackson had a runny nose…and mine had just started, not a great start to the morning. Even though Jackson is starting to understand the concept of presents, it doesn’t coincide with his typical morning routine.  We are still learning the best way to approach the day, each year we learn more.  First Jackson gets his morning bar with his yogurt filled with medicine.  Then we move to stockings.  Jackson is done with the excitement about half way through his stocking, and then he is wants to be in the living room with his iPod.  After bringing him back to the Christmas tree for what seemed like a million times, and picking him off the ground after he melted down to the floor, we moved the presents to where he wanted to be. Then we get ready to head over to Sara’s parents’ house.   Yay, mimosas and breakfast…yummy.  We made sure Jackson got as many breaks as he needed  during present time. After a few gifts, he was done so Sara and I took turns being with Jackson while the rest of the family enjoyed sharing gifts.  Jackson did really well through the excitement, having an iphone with Zac Brown available helped a lot. After all the gifts are done and the family phone calls are made to thank those who sent gifts from afar, we head downstairs for a tradition of game play.  Once the games are done, we pack up and head to my grandma’s for snacks, desserts, and more gifts.  We were on high alert as little Emma is becoming more mobile and my grandma has lots of little nick-knacks and collectables.  My dad saved the best gift for last; he bought Jackson a snare drum.  Jackson jammed on that, giving grandma a near heart attack.  Her reaction was priceless…it’s hard for grandma to understand boys even though most of her grandchildren and great grandchildren are mostly boys, she raised 3 amazing daughters. I am sure she slept for a week after our visit.  Jackson was excited to see his cousins and Auntie Tricia.  I think my favorite part get my niece to fall asleep in my arms.  Jackson’s favorite part was when Emma pooped and had to go lay down to get changed.  He still talks about it to this day… “Emma…POOP! Down…” followed by giggles.  The night came to an end and we were all exhausted.  Sara was such a trooper feeling as bad as she did.  We survived another Christmas.  LOL!

While Sara’s brother was in town we were able to go see a Clownvis show.  It was a nice night to get out and about after a week of being in the house nursing sick people, including myself.  We had a blast….

A Surprise to Remember...

November 2013 Catch up continued.. 

We hosted Thanksgiving for the second year in our new home.  This year we missed having my sister-in-law and crew, they had several places to visit during the day of festivities, so it is completely understandable.  I did miss them for sure though.  Just in case I smoked two turkey breasts this year since we ran out the year before.  My traditional turkey came out better than it ever this time.   My mom and grandma brought over the hors d’oeuvres for pre-meal.  Sara’s dad and Katelyn made yummy deserts.   It was a great feast and I enjoyed every bit of it.  I love to cook and it is great to have a house big enough for everyone to be comfortable and enjoy each other’s company.

November, even though I worked the most of it turned out to be the best month of the year, but just when I thought to myself it couldn’t get any better, my wife surprised me for my 40^th birthday.  My birthday is in January, but in order to pull off the ultimate surprise you must do it in advance and she did not disappoint at all.  I did not suspect a thing.  Since I had been working so much, we planned a date night.  Generally how we do date nights, one of us comes up with the plans for the night, depending on whose idea it is to have a date night.  Since it was Sara’s idea, it was hers to plan, however being extremely nervous to give away the surprise she was finding it hard to come up with a way to get me to the destination. 

Luckily she had Andie in her back pocket to help because she would have definitely given away the surprise.  Andie had text me that morning to see if we had something going on, but Jackson had my phone…watching trash truck videos.  So naturally I was not responding to the text, so in panic mode Sara found a way to leave the room and get Andie to call me.  Oblivious to everything it was not hard to convince me to go to the destination as I have been there a few times before, Kirkwood Station. It has a huge key element for me, it’s a brewery and it has great food.  They also have an 80’s tribute band that performs once a month and for years I have wanted to see them, so that was an added bonus.  We set a time to meet there for dinner and the night was planned. 

We had someone coming to the house to be with the little man and Sara’s mom was going to come by later to pick him up.  What didn’t make sense to me was why someone was going to watch him for an hour before going over to grandma and grandpa’s to spend the night.  My darn logic was planning a takeover and I obviously did not know the plan was so they could be part of the surprise, opps… so in fear of blowing the surprise Sara canceled the short (which was really not a short) in-between babysitter.  Like any night Sara and I go out, Sara has a wardrobe catastrophe.  So while I am trying getting ready she is in search for a specific shirt and can’t find it.  She goes in to panic mode and Jackson is clearing our dresser of items, then coming into the bathroom and clearing the sink, going from place to place.  Sara is near panic attack mode, I think most ladies can relate to this feeling.  Instead of handling it like I should, I blow up and take Jackson downstairs so Sara can find her shirt.  After looking in every place she could think of, she is giving up hope and is almost in tears.  So I have her come down and take a watch over Jackson to go find this missing shirt.  After a few places, I find it…but the house is now completely turned upside down.  I go back down, hand Sara the shirt to she can go put on her face to match.  To this day I am not sure if this was stall tactic, or just a typical get ready because this happens a lot when we do go out. 

We head out to drop Jackson off at the grandparents.  I was a huge jerk over the missing shirt and nervous about being late.  Sara thought perhaps we could get pre-drinks somewhere before meeting up with Andie, but we were running too late for that.  We dropped Jackson off, but Sara was trying to stall a little bit while we were there. I am still not catching on to anything because this fairly routine for going out on date night, I am not suspicious at all…after 20 minutes of going over Jackson’s night routine and the going to bathroom twice.  Sara wants me to stop at Quick Trip to get cash money and a red bull and, we are finally on our way.  I am chomping away at a piece of gum because I get nervous going to restaurants, it’s my thing.  I am also nervous because Andie is always 15 minutes early and I figured she would be waiting for us.  I used to be 15 minutes early to everything myself, but then I met my wife and then we had a son that has the “mosey”, so I am learning to adjust to being late to everything.  I still have a long way to go. 

It is the weekend after Thanksgiving and football-wise Mizzou vs. Texas A&M, so I spoke to the parking Gods all the way to the destination because Saturday nights in Kirkwood bring in lots of people without special events.  The Gods answered giving me a great spot, but this made Sara nervous because she was afraid I would recognize some of the cars, again though…I was more worried about being late so I wasn’t paying any attention.  Kirkwood Station was packed with Mizzou fans.  Andie and Christie met us at the door, I was worried that we wouldn’t have a table with how crowded the place was, but Andie eased me as she said she had one in the back.   I paid our cover, which apparently was already paid for, however they were able to hide that from me as well.  I am ranting to Andie about our adventurous evening as I think I see a friend at the bar.  I slowly start to turn to Sara to tell her, hey…  “I think Donna and John are here” when blamo tons of people turn around and scream “SURPRISE!”.  I grabbed Andie by the arm in shock and said, “Who the F*CK is this for…, what the hell” and in true Andie fashion she answered, “You, you big dumb a$$!”  In complete shock I of course retaliated, “This is isn’t for me…  No… It can’t be.”  Then Andie pointed out the signs that were hanging around with my name on them.  I couldn’t believe all the people that were there as I panned around the room.  My family, my college softball teammates, my flag football teammates, my slow pitch ladies team, my co-ed team, childhood friends of the family, old co-workers…   It was crazy, it was overwhelming, it was amazing, and I felt like I was going to vomit.  I am not one to be the center of attention and everyone was looking at me.  Quickly Sara handed me a beverage and I am sure she needed one for herself with all that stress of planning the perfect night for me.  Every detail was thought off..  from ginger ale for my Jack, to the signs, to the cozies, to the 80’s band that would playing later.  If this is what 40 is, hot damn I am ready for it.

Some of the decorations

There was food and whiskey cupcakes, without planning the Honey Jack girls were promoting that night and bonus I got a free kick a$$ hat.  I was in too much shock to eat which did not help my cause, however much like this season of HIMYM where Lily gets “The Kennedy Package” I was never empty handed. “Thank you, Linus!”   The evening was much like my wedding night, a room full of people you love so much and want to talk to, but there doesn’t seem to be enough time to visit with all of them.  I am so grateful for all the people in my life and to have almost everyone I care deeply about to be in one room together it best gift I could ever ask for. It felt like the night was flying by too fast, and then That 80’s Band took the stage.  I seriously did not leave the dance floor and they played 3 sets.  BEST LIVE BAND EVER!

The night went on and people slowly left, it was late and I was good and drunk. I headed the restroom to pee and vomit, it was a great night.  Sara had already packed up the car and it was time to go. I passed out on the ride home.  I didn’t not properly thank my wife for a very well thought out evening, but managed to make it home before vomiting again.  Then next morning reminded me that I am not in my young 30’s anymore, holy hangover batman.  I was in bed for the majority of the day, so hats off to all….mission accomplished. The party was completely epic!






Watching the brand perform

Brandon, Emma, and Katelyn

Flag Football Gang

My Sophie