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.    

Light at the end of the tunnel part 2..

July 2013 - We celebrated 4^th of July at my parents’ house, it is a tradition to watch Poppy blow up stuff. Sara worked a BBQ cook-off fundraiser at the beginning of the day, while Jackson and I spent the day in my parents’ pool.  Usually the head index in the STL is 115 this time of year, but this summer has been so mild with temps dropping down to the upper 60’s overnight.  So I will say the pool wasn’t it normal 84 degrees…but it wasn’t too cold to enjoy it which was a good thing because Jackson was not getting out especially when his cousins came splashing in.  Since Fireworks a family favorite, it was easy to get the boys out of the pool and start drying off with the thought of being able to blow stuff up.  Jackson has never really watched or shot fireworks yet, but my nephews and sister had bought kid friendly ones.  Jackson loved them; Sara however did not like the larger fireworks that my dad was testing.  The issue that developed as time went on was when Jackson liked running towards his older nephew who lighting firecrackers.  It was exciting to watch Jackson’s face light up, but it was difficult to keep far enough away for safety concerns so Sara and Jackson went home before the big display.  I however stayed and watched the big display.   It has been a few years since I have been able to, but since we had two cars this year, it was nice to be able to watch because it did not disappoint.
 
I only worked 1 weekend; however I was sick as dog.  I blame the public pool for getting sick and I got the bronchitis….aint nobody got time for that.  I had to miss a softball game; those who know me well know I was really feeling really awful to miss a game.  Jackson came down with some sort of stomach bug and had a seizure. He came out of the seizure without emergency medicine, which was the first time he has ever done that. Jackson was running a fever, so we gave him some IBProphen which got the fever to come down and we gave him an anti-seizure pill, so scary.  We emailed EBK and called our STL neurologist.  EBK responds within 10 minutes, STL neurologist took two days to call back. Jackson seemed to bounce back from this event, he didn’t have any more seizures, and we took him in to get his levels checked. 

August 2013 – The softball season wrapped up and we placed 2^nd in the softball league.  Other exciting news we got to have dinner with some amazing FX families, Cindy Roger’s, Mouse Scharfenaker, and Tracy Stackhouse. These amazing 3 ladies traveled to STL for a FX workshop which we also attended. I can listen to them a million times and learn so much every time.  After dinner we met up with our Kansas City FX moms for drinks because we can’t brag about our amazing kids enough and adult libations are fun.  It was fun going to the workshop tired and slightly hung over. I worked the following weekend, ugh is this project done yet?!? 

The St. Louis Sports Hall of Fame inducted Sara’s grandpa and we were able to attend the luncheon.  It was awesome to hear stories from the other dugout legends who were also inducted into the St. Louis Sports Hall of Fame at the same time.  Jackson is doing really well in school, but they are concerned because he will stop bouncing for a few seconds and become non-responsive for a few moments, then he is back to himself, but seems tired. Sara picked him up one day when one of these episodes occurred, but he was completely fine when they were home.  A week later he seemed really tired, he took a nap after school and after dinner he wanted to take a nap again.  Shortly after dozing off he had a seizure.  We had to administer the emergency medicine to get him out of this one. We again got in touch with both his docs, same thing EBK responds right away and the STL doctor takes a day or two.  Two options we had were increase his dosage or switch medicine since Jackson has been on this type for over a year.  After much consideration we went with increase in dosage first. The first week make Jackson very sleepy in the morning and not his normal self at school, so we scaled back only added the increased dosage before bed.  Since then he hasn’t had any more seizures that we know about, the school reported another gazed episode in September since the increased dosage.  We have not seen these episodes, so we aren’t sure what is going on, but are monitoring it for sure.

September 2013 – I like this pattern of only working 1 weekend. This was a busy weekend month…I am happy to report that I was able to complete my stair project and get the French drain put in.  Of course our mild summer weather was completely gone and I swear it was the hottest weekend for me to complete this outdoor project, however it was the cheapest weekend to purchase all the mulch and drainage rock I needed. September is another big birthday month…my little brother, my dad, my nephew, and Sara’s mom all have birthday’s to celebrate.   
 
My nephew celebrated his 9^th birthday Minion style and sister-in-law hosted a party for him; Jackson is so excited to spend time with his cousins.  It was also Sara’s best friend’s wedding month to which she was the maid of honor.   


Sara tossed Cray a fun bachelorette party that I got to DJ for. I haven't done that in years. There was a guest appearance by Sonny and Cher.  The night was full of surprises….I will leave it at that.  The wedding was absolutely beautiful and was at one of our favorite places for a weekend getaway at Overlook Farms.  We had celebrated our 5^th anniversary there and were lucky celebrate our 7^th anniversary there since the wedding fell on the same weekend. 

October 2013 – We attended a FX Symposium and Jackson’s teacher and aides attended with us.  It is a so great that his team wants to learn more about Fragile X.   

My dad and I traveled together to Bridgeport, CT to attend a memorial service for my cousin Carolyn.  We don’t get to see my dad’s side of the family very often.  It was really great to catch up with my aunts, uncle, and cousins although the circumstance was difficult. My cousin Carolyn was a kindred soul who touched so many peoples lives with her beautiful smile, amazing art work, and giving personality. The service was wonderful and Carolyn is much missed. I really enjoyed getting to spend time with my dad, something we don’t get to do 1 on 1 often enough.  It wouldn’t be a true Hamilton trip without a funny event.  I rented the car and was the driver for the weekend.  The first night we needed to go pick up my aunt Carol. Her flight was delayed and for a long while we thought we might be waiting at the wrong airport…but she finally came through the gates to which she announced a drink was in order.  We were about 40 minutes from our hotel, but I had noticed our hotel was near two liquor stores less than a block away each direction. Unfortunately they were both closed when we arrived, but I saw a bar sign that was lit up, so we went with that.  Walking into the bar they had very loud thumpa-thumpa music playing, so I turned to the bar tender to ask if that was OK if we took our drinks outside because the music was so loud when I noticed on the TV behind was a nude man rolling around on the beach.  I then quickly turned back to my family with an embarrassed look on my face to see they had noticed the same thing as their eyes got wider. I quickly asked them if they wanted to go outside to have drinks and they all politely said yes.  I could tell everyone tried to keep from busting out laughing at my mortified look when I asked them if they still wanted to have a drink.  My family is very excepting of my lifestyle….and I am so lucky to have that, but leave it to me to take my family to a gay bar with nude dudes on TV.  Aside from that October is special in our house because we have Halloween and Sara’s birthday on the same day.   

Sara tried to craft our costumes so we could be a family of mummies.  Between my working and traveling, the sewing machine acting up, and life…she did not get to complete our costumes to what she wanted them to be, but Jackson looked so good.  I started to come down with a cold, but I wasn’t going to let me keep that down to make the day special.  I hung up a peg board in the hobby room so sorry could hang all her crafty tools, got Jilly’s cupcakes, made my Jack chili, and this year we added hot Apple Rum Cider.

November 2013 – The first weekend I was so sick with the bronchitis again and sinus infection.  I slept the entire weekend and missed my BFF’s house warming gathering.  Last year I missed her birthday because of work, this year I miss her house warming because I am sick.  I feel like the worst friend anyone can ask for these days.  I also missed Flag Football Nationals and Hall of Fame ceremony where two of my teammates were inducted. Eddie and T-Rod congratulations I am so proud of you both, sorry I missed it.  I was able to provide some photos for the videos and I know I was there in spirit.  The following weekend I had the privilege to go on a mini vacation.  I was still getting over being sick, but I got to spend the weekend with my softball ladies on Dolphin Island in Alabama.  Tracy McFadden thank you for owning a house down there because I so needed a weekend get away from everything….actually I think I need a month, but I am very greatful for the weekend. Upon returning home I had to work two back to back weekends, but the good news is the project is OVER!! The month seemed long, but with Thanksgiving and an amazing surprise celebration it was easy to missing working 15 days in the row...

I have a few more exciting posts about November to write..  so stay tuned