July 22nd

Couldn't let today come to a close without some sort of blog post. Fragile X Awareness Day is a day when people all over the country & all over the world put extra effort into raising awareness about fragile x syndrome, & fragile x- related conditions. July is also Fragile X Awareness Month so there's been a fair amount of awareness in my social media feeds, & that will continue for another week or so. But today is the official annual Awareness Day on the calendar. 

Fragile X Awareness is important so no one feels alone. I happened to speak with a couple of parents today who recently reached out because they needed help with something. Even being an ear for someone else can have a reciprocal calming effect, too. But if I didn't have the comfort of family, friends, & other parents in the fx community... I don't know how I would even put one foot in front of the other. 

Fragile X Awareness is important because individuals with disabilities either need to advocate for themselves, or need people to advocate on their behalf. If we do not shed light on societal issues that can further hinder their way of life, then not only does this unnecessarily hurt them but it also creates a societal burden. What they need are appropriate protections & opportunities... so they can be contributing members of society. 

For me, the biggest reason why fragile x awareness is so important....
There are many, many genetic disorders. But when it comes to inherited genetic disorders, that puts the importance of awareness in a whole different category.

In my family we traced the gene back to my maternal great grandmother, who had no idea she was a carrier. And certainly never knew it was fragile x syndrome that made one of her three children so different from the other two. And then my grandfather, who by the way was a physician, would have no idea that he was a carrier & would pass this gene to all three of his daughters (also in carrier form). He would have no idea why he had tremors later in life, to the point that he could barely walk (FXTAS, Fragile X-associated Tremor- Ataxia Syndrome). Of course his three daughters (my mom & her sisters) wouldn't know that they were all carriers. His son, who would also become a doctor, would not carry the gene as it can't be passed from father to son.

One of his daughters would have FXPOI (Fragile X-associated Primary Ovarian Insufficiency), & the other two daughters would have children. It's a flip of a coin whether or not a woman passes the gene, & my mom's sister did not pass it to either her son or her daughter. Then my mom had her first child, my sister, & the gene was not passed to Jenna either.

I was the last chance for that gene to make an appearance & no one had any idea that it did. I was born with a full mutation of fragile x syndrome but because females have two x chromosomes, sometimes the other one compensates. Which is exactly what happened in my case. Even though I am not a carrier like most moms, still the full mutation would give me a 50/50 chance of passing on the fragile x gene... which again, we were unaware that I had.

And that brings us to Hayden.... the reason for my commitment for raising awareness. I don't know that the perspective of all this can even scratch the surface of just how grateful we are, but if you participated today (or this month) THANK YOU. For posting on social media, wearing green, or donating to Hayden's annual fundraising page for the NFXF. And a special shout-out to the anonymous donor, thank you so much. 

Fragile X Awareness is only effective because of amazing people like all of you. 

--

Sammie

Thanksgiving weekend of 2014 we went to a local pet rescue center to meet a prospective dog to adopt-- a chocolate lab puppy which Hayden would not go anywhere near. Then one of the women working there asked us if we had met Sammie. We did not recall seeing a Sammie on the website so she told us she was a 5 year old hound. We had our hearts set on a retriever, but she suggested Sammie's disposition might be better for Hayden. So they called up Sammie's foster mom & a little while later a young woman came in with a dog who didn't seem all too enthusiastic about being there. Turns out she was a long-legged coonhound mix which was a breed we were not at all familiar with. 

But within a minute or so none of that really mattered because Hayden just casually accepted the leash from the foster mom & literally started to head out of the building. This is a child who barely cared about visits to the zoo & generally speaking showed little or no interest in animals. But with that, of course Dan scrambled to catch up with him & grab food & a bed, while I was suddenly writing a check. Next thing we know we were on our way home with a strange dog & welcomed a new family member into our completely unprepared-house.  

We soon learned she was not 5 but going on 7, & after looking through her paperwork (yes, she actually had a fair amount of it) we also learned we were her fourth home-- two were in Georgia & two were in NJ. Her first family named her Sammie-Sweetie & it appeared everyone after that kept it. If they thought she was so sweet we don't know why they let her go, but they all did. We kept her name to avoid confusing her but dropped the Sweetie part (we thought Sammie was fine as-is). 

Sammie fit right into our family. We quickly realized she was 50% sweet & 50% stubborn (maybe 60/40). She would like schedules & predictability, & would not like if things were out of routine. She would never be just hungry-- she would get hangry. And she would almost always act like she was doing us a favor when we pet her-- eventually start barking until she got a treat. It's as if she was trained to expect a prize for sitting there & tolerating having her belly rubbed or her back scratched. Other times she would practically push her head into us-- either our hand, or our leg-- because she didn't want us to stop. But she'd still expect a prize for her attention efforts. She would generally be an impatient dog & also would not listen too well. We would learn she was not a fan of other dogs, but she was a people-person (or a people-dog) especially with adults. She would not exhibit much athleticism (playing catch, etc), but she would certainly be on high alert if a Fed Ex, UPS, or garbage truck was coming up the road. It wasn't long before we realized just how much she would have in common with Hayden.

She joined our family over Thanksgiving weekend six & a half years ago, & sadly left us this Independence Day weekend. This morning, July 3rd, we had to put her down. She was 13 1/2. She was the absolute sweetest pain in the ass, probably much like a human teenage daughter, but with unconditional love mixed in. She completed our family. And rescuing an adult (almost senior) coonhound instead of a retriever puppy turned out to be the very best unexpected plan we could have ever imagined.

I don't know whether or not she'd be impressed with a rainbow bridge, but as she slipped away I whispered, "look for the trucks & the cookies." 
 
R.I.P Sammie Capela
January 2008 - July 2021