In less than a decade I will endure the lengthy, costly, emotionally difficult process of legal guardianship.
Hold that thought for a minute...
So it used to be that gay & lesbian couples didn't have the right to marry, while plenty of heterosexual couples took it for granted & in some instances, abused the privilege altogether.
I would hope that most people want to marry for the same reasons-- whoever they are-- for love & commitment. This is a rite of passage that my son will likely never know. I am not saying this out of self pity or feeling sorry for him-- I don't feel sorry for him because he enjoys the most that he can out of life every day & he is happy. There are plenty of people in this world who do not enjoy the most out of life & never do get married even though legally they can (I am not stating that as one related thought, though-- I am just saying...)
That being said, do I still think it sucks that certain decisions were already outlined for Hayden (before he was even born)? Yes. But I also believe there is a power much greater than all of us, who trusted me & my husband with the privilege of raising Hayden. And that is why he was granted to us.
If the debate over marriage equality was just limited to emotional & social aspects, then this would not be an issue of civil rights. People who marry have the privilege of more legal protections & benefits than I can list. The piece of paper we call a marriage license essentially safeguards us & our families.
For the first time in history married gay couples (who, first of all, can be called married gay couples regardless what state they live in...) are now legally entitled to: hospital visitations, child custody, adoption, parenting rights, medical decision-making power, automatic inheritance, standing to sue for wrongful death of a spouse, spouse & child support, access to family insurance policies, & exemption from property tax upon death of a spouse... to name just a few.
I do not think about rainbows when I ponder this landmark Supreme Court ruling, although maybe the bright colors help. I simply believe the government made a decision to give others a chance to make their own decisions.
As far as I'm concerned it translates to nothing more than basic human rights.
I had no choice over the fact that I knew I wanted to spend the rest of my life with a man. But at least I knew that some day I could. In less than a decade I will endure the lengthy, costly, emotionally difficult process of legal guardianship. Most of the time I use my blog (in one way or another) to communicate why I am endlessly advocating for equal dignity in the eyes of the law for my son. For someone I love. Albeit differently than a spouse, but does it matter?
Do you have any idea how much I wish that my son's basic human rights were a non-issue?
I will not insult people who disagree with me. But I will forever stand behind the government's decision in favor of something so sacred. Marriage? Yes. But more importantly: equality.
--
Fragile X Syndrome is a genetic disorder that we never even heard of until our son was born. FXS is the most common inherited form of intellectual impairment & the number one known single gene cause of autism. I'm here to raise awareneXs and blog our story.
Clouds, May 2010
Sunday, June 28, 2015
Monday, June 22, 2015
the big ten
Double digits. The big 1-0.
My not-so-little guy...
He is ten.
I have always said Hayden's most prominent feature is definitely his smile. He wears it often & he wears it well.
I may not be able to expect that every person he comes in contact with is going to understand everything about him, but I do expect people to continue to notice how he is just like them. And I do expect his uniqueness to be viewed as opportunities of acceptance. Hayden is someone worth getting to know & my hope is that he always continues to be thought of & included.
And I wish for those who are close to Hayden to realize this privilege.
I pray that he will grow to understand that every time I think I can not possibly love him more, I still do.
Even through all of the frustrating struggles when I feel drained. Especially after those immeasurably tough days, or a weak moment of mourning over what could have been... I not only remind myself how far we've come, but that there will never be a cap on his progress. And I do believe he is aware of this, & that is why he is so content with this life he knows.
It all comes down the fact that I only wish for Hayden a life of endless comfort & effortless happiness. So far in his first ten years on this earth, he has damn near mastered the latter (may that never, ever change).
My Hayden. My love. He might be the reason sometimes I can barely wait to put my head on my pillow at night... but he is also the number one reason I want to get up every day.
Hayden, you're just a cool kid. I love your interest in tools, & cars, & trucks, & hitches, & tires, & fixing things... I love your interest in money & I hope that you have a lot of it... & I love that there are so many different genres of music that really speak to you... & I love your attention to detail... & I love that you still get excited about wearing something new & that you not only take pride in looking nice, but also insist on play clothes when you're doing your thing outside with your shed... I love your favorite uniform of choice when you mean business-- jeans, a white T, & work boots... I love that you appreciate a really great doughnut but couldn't care less about candy, chocolate bars, ice cream, or cupcakes... I think it's funny the way you eat meatballs sometimes as if they're keeping you alive but you have zero interest in a hamburger... & how you looove pizza, yet you will not go near macaroni & cheese if I paid you...
But my favorite thing is when the people closest to you are really excited to see you, because you tend to reciprocate their enthusiasm. It is genuine & shows the purity of your heart.
Our life with you may be different, but it is never boring. You are an interesting & loving person. I could not be more proud to be your mom.
Happy Birthday H-Man!
--
My not-so-little guy...
He is ten.
I have always said Hayden's most prominent feature is definitely his smile. He wears it often & he wears it well.
I may not be able to expect that every person he comes in contact with is going to understand everything about him, but I do expect people to continue to notice how he is just like them. And I do expect his uniqueness to be viewed as opportunities of acceptance. Hayden is someone worth getting to know & my hope is that he always continues to be thought of & included.
And I wish for those who are close to Hayden to realize this privilege.
I pray that he will grow to understand that every time I think I can not possibly love him more, I still do.
Even through all of the frustrating struggles when I feel drained. Especially after those immeasurably tough days, or a weak moment of mourning over what could have been... I not only remind myself how far we've come, but that there will never be a cap on his progress. And I do believe he is aware of this, & that is why he is so content with this life he knows.
It all comes down the fact that I only wish for Hayden a life of endless comfort & effortless happiness. So far in his first ten years on this earth, he has damn near mastered the latter (may that never, ever change).
My Hayden. My love. He might be the reason sometimes I can barely wait to put my head on my pillow at night... but he is also the number one reason I want to get up every day.
Hayden, you're just a cool kid. I love your interest in tools, & cars, & trucks, & hitches, & tires, & fixing things... I love your interest in money & I hope that you have a lot of it... & I love that there are so many different genres of music that really speak to you... & I love your attention to detail... & I love that you still get excited about wearing something new & that you not only take pride in looking nice, but also insist on play clothes when you're doing your thing outside with your shed... I love your favorite uniform of choice when you mean business-- jeans, a white T, & work boots... I love that you appreciate a really great doughnut but couldn't care less about candy, chocolate bars, ice cream, or cupcakes... I think it's funny the way you eat meatballs sometimes as if they're keeping you alive but you have zero interest in a hamburger... & how you looove pizza, yet you will not go near macaroni & cheese if I paid you...
But my favorite thing is when the people closest to you are really excited to see you, because you tend to reciprocate their enthusiasm. It is genuine & shows the purity of your heart.
Our life with you may be different, but it is never boring. You are an interesting & loving person. I could not be more proud to be your mom.
Happy Birthday H-Man!
--
Wednesday, June 3, 2015
a perfect ten
Yesterday was Hayden's last progress meeting of the 2014-2015 school year. We spoke about his general trend of non-compliance lately (more so in the morning vs the afternoon), task avoidance, & so forth. The interesting thing is that his treatment regimen this year has been helping very well... but for whatever reason(s) he is also going through a phase of simply not wanting to do work.
But I need to put yesterday's progress meeting into perspective. Because the truth is, H has also made some amazing strides that are not to be dismissed.
When I got to the school I stopped at the front office & had the best greeting ever. Apparently one day, recently, a certain third grader took it upon himself to fill in for the secretary when she was away from her desk. He was only supposed to be delivering something to the front office, but he had bigger plans. The child was caught on camera & I had the pleasure of watching said video on the secretary's cell phone... of my son pretending to do her job. One of the aides captured a couple of stills, as well:
I am telling you he has nearly all of the faculty over there wrapped around his finger (naturally I am perfectly fine with this). I can't count how many times we randomly run into people from school-- just around town for example-- & we're told how much they love our son & that his picture is on their refrigerator. Over the years I have given many thank you notes & many holiday cards, to many people who work with him. And it's beyond heartwarming to know how many kitchens are adorned with his contagious smile.
So anyway, back to yesterday morning at the school... next stop was to the Child Study Team room where we were meeting. Fast-forward near the end as we were wrapping up our conversation, & I heard the most fascinating story...
Apparently H's third grade classmates from Gen Ed were in the library giving mini presentations about books they read. H wanted a turn too, but instead of giving any sort of book report he stood in front of the room & (so I was told) spoke about friendship... or the importance of friendship... & about his buddy J who he had brunch with the day before. They said he was articulate & confident, & that even the librarian herself practically had her jaw on the floor. He thanked his audience when he was done, & the 20 or so students that he was speaking to clapped for him.
There are about 50 levels of amazing right there in that one update.
But without even listing them, the other little background piece is that we ended up having a scheduling conflict for this brunch date (that he spoke so well of), which we had planned many weeks prior. It turns out that the t-ball program H joined with his cousin was going to be giving out awards that day, as well as taking a team picture, & enjoying a snack together after their game. There is still one more game scheduled for this Sunday, but long story short it was decided they would do all of this at the second-to-last game instead of the last game.
I knew that he would be missing t-ball, but my heart sank when I found out everything else he would be missing too. An email went out just a couple of days prior & that's when we learned all of this. But as quickly as I felt bad about it, I also got over it... because the bottom line is that I knew we would not be able to reschedule brunch before the prepaid ticket expired. (The children's brunch tickets had been donated for our location Education Foundation fundraiser, so they were purchased back in March at the time of the event.) And this kid from school is such a gem of a friend to Hayden that I really did not want to cancel anyway.
Brunch was amazing... our little family of three with their big family of five... & the kids were nothing short of awesome. And the fact that this little event ultimately led to my son standing up & speaking in front of his whole class...
I can't even. Absolutely priceless.
So like I said, yesterday was Hayden's last progress meeting of the school year. We spoke about his general trend of non-compliance lately & recent task avoidance.
But as you can see, as far as I'm concerned the meeting was a perfect ten.
--
But I need to put yesterday's progress meeting into perspective. Because the truth is, H has also made some amazing strides that are not to be dismissed.
When I got to the school I stopped at the front office & had the best greeting ever. Apparently one day, recently, a certain third grader took it upon himself to fill in for the secretary when she was away from her desk. He was only supposed to be delivering something to the front office, but he had bigger plans. The child was caught on camera & I had the pleasure of watching said video on the secretary's cell phone... of my son pretending to do her job. One of the aides captured a couple of stills, as well:
I am telling you he has nearly all of the faculty over there wrapped around his finger (naturally I am perfectly fine with this). I can't count how many times we randomly run into people from school-- just around town for example-- & we're told how much they love our son & that his picture is on their refrigerator. Over the years I have given many thank you notes & many holiday cards, to many people who work with him. And it's beyond heartwarming to know how many kitchens are adorned with his contagious smile.
So anyway, back to yesterday morning at the school... next stop was to the Child Study Team room where we were meeting. Fast-forward near the end as we were wrapping up our conversation, & I heard the most fascinating story...
Apparently H's third grade classmates from Gen Ed were in the library giving mini presentations about books they read. H wanted a turn too, but instead of giving any sort of book report he stood in front of the room & (so I was told) spoke about friendship... or the importance of friendship... & about his buddy J who he had brunch with the day before. They said he was articulate & confident, & that even the librarian herself practically had her jaw on the floor. He thanked his audience when he was done, & the 20 or so students that he was speaking to clapped for him.
There are about 50 levels of amazing right there in that one update.
But without even listing them, the other little background piece is that we ended up having a scheduling conflict for this brunch date (that he spoke so well of), which we had planned many weeks prior. It turns out that the t-ball program H joined with his cousin was going to be giving out awards that day, as well as taking a team picture, & enjoying a snack together after their game. There is still one more game scheduled for this Sunday, but long story short it was decided they would do all of this at the second-to-last game instead of the last game.
I knew that he would be missing t-ball, but my heart sank when I found out everything else he would be missing too. An email went out just a couple of days prior & that's when we learned all of this. But as quickly as I felt bad about it, I also got over it... because the bottom line is that I knew we would not be able to reschedule brunch before the prepaid ticket expired. (The children's brunch tickets had been donated for our location Education Foundation fundraiser, so they were purchased back in March at the time of the event.) And this kid from school is such a gem of a friend to Hayden that I really did not want to cancel anyway.
Brunch was amazing... our little family of three with their big family of five... & the kids were nothing short of awesome. And the fact that this little event ultimately led to my son standing up & speaking in front of his whole class...
I can't even. Absolutely priceless.
So like I said, yesterday was Hayden's last progress meeting of the school year. We spoke about his general trend of non-compliance lately & recent task avoidance.
But as you can see, as far as I'm concerned the meeting was a perfect ten.
--
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