Monday, April 3, 2017

Blessings

Dear Jules,

Today could have been, well, shitty.  Literally, it was.  You've been in between constipation and diarrhea for a while now, and today was one of those "blowouts."  You'll be glad to know that I'm not going to talk about poop for this entire blog post, although the issue has been consuming my life lately.   The situation could have been rough; I get a call in the middle of teaching to come get you and clean you up--give you a bath.  This, as many working moms know, could have thrown my entire day off the rails.

But I'm blessed in your Daddy, who called me immediately and asked whether he should do it.  I decided to go (I was in office hours at the time), but I'm able to be back at work because of Addison's mommy, who has been taking care of you.  She has been such a godsend; she gets what you need because her little girl also has special needs.  She reads with you, does homework with you, and then Addison is there to play with you and to be your really special friend.

Today, when Ms. Heather drove away with you and Addie in the backseat, I looked at your little smiling heads peeking up over the windowsills and got a lump in my throat.  You both looked so very happy to be with one another, and I knew that, no matter how shitty this day could have been, we are really very blessed.

Let me take a brief detour and tell you the amazing story of how Addie and Ms. Heather came into our lives.  You were about one, and we enrolled you in Kindermusik.  It was a regular class, and I honestly had no idea that Addie had special needs until we met her again, years later, in therapy, and then at Chick Fil-A.  We kept on meeting and, when after school care wasn't working out this year, I called Heather and asked whether she could take care of you.  You and Addie have been thick as thieves ever since, and she even got us to join Miracle League, which has been so inspirational to watch.  You and Addie are both on the Braves- here's a picture of you two together:

As Ms. Heather said, you will have a lot of great friends (and I'm grateful for all of them!), but it's really special to have someone who just "gets you," who doesn't see you as someone who has to be taken care of, who sees you as her equal.

What a blessing.


Friday, January 20, 2017

A Historic Day

Dear Jules,

Today, January 20, 2017, is a historic day, a day filled with much celebration and rejoicing.  People who don't know us might assume it's because our country is inaugurating its 45th president, Donald Trump...but anyone who knows me and the issues important to me knows that cannot be the case.

And yet today we celebrate someone who will (and already has) changed the world: you.  As you turn six, I think about all of the people whose lives and ideologies you have already touched and affected, starting with myself.  When you were born, I knew nothing about Down Syndrome, and I was scared, not sure I was "up to" the job of being your mom.  But you are so awesome, and Down Syndrome, I have learned, is just a part of the amazing person you are.  You've also taught this lesson to Dad (pretty quickly!  you've always been his pride and joy), Nagyi, Grammy, Papa, your Godparents, our friends and colleagues, your friends at all of the schools you've attended...and I think your inclusion and presence in our world will help people think a little bit differently.

So on a day when "difference" isn't what most people are celebrating- when we have to hear a pastor give a sermon about "God's chosen" president- I celebrate the fact that God chose you to be my daughter, to teach me to let go of my need to control everything and see where life will take me.

But since it is inauguration day, here is you watching Obama's 2nd.


Wednesday, November 9, 2016

Digging Deep

Dear Jules,

I'm very sad today: sad that a man who made fun of a reporter with a disability, a man who has said really hateful things about Muslims, about women, a man who joked about the act of rape, will be our next president.  I'm sad that you and I couldn't celebrate the first woman president of the United States, even though she won every single debate and had a much more complex, nuanced view of world issues.  I want to say more but need to acknowledge that I'm sad.

So where do we go from here?  Well, I think we need to dig deep, to figure out what it is we stand for and to fight for it.   This is, thankfully, something our family is really good at.

Both Nagyi and Nagyapa, your grandfather you never met, grew up in communist Hungary.  It was a very stifling, totalitarian government: they told everyone what books to read, what history to learn, what groups to join, what jobs to do, how to think, how to act, and more.  My father literally fought for his beliefs, joining in the 1956 Hungarian revolution and then escaping from the country, telling no one in his family so that the government could not persecute them.  He always sent presents and money to his family, including to my aunt, who was intellectually disabled.  At that time, and even now, people with intellectual disabilities were treated very badly in Hungary, but he always kept in touch with her and taught me to see her as an individual.  Her embroidery is something I remember and, to this day, envy.  She was a talented woman.

Nagyi also fought for what she believed in; when she applied to college, she was asked to join the communist party but refused.  This almost cost her the opportunity to go to college.  Your great-grandfather, my grandfather, also fought hard: he also refused to join the party and believed in the power and strength of education.  Although he was a Latin teacher and a school principal, he was forced to become a peasant and then work on the railroads.  He had precious little time with his family, but he always made sure to tell stories about Hungarian and world history (he even told some of them to your daddy), and he always made sure to play his violin.  Oppression and fear could not keep him from his music.

My grandmother, your great-grandmother, believed in her religion, Catholicism.  Even though going to church was looked down upon (and could even be punished), she went almost every single day of her life and raised her children as Catholics.

Growing up, I heard stories about communist Hungary.  It sounded horrible, it was scary when we went to visit to see all of the soldiers, and I wasn't sure it would ever change, but my family kept being true to their values, their beliefs.  Eventually, it did change; it's not perfect, but it's no longer a totalitarian society, and people are relatively free to speak their minds.

My point is not that Trump's America will be totalitarian; I don't want to get into that here.  My point is that, no matter what the situation, good people have always dug deep into themselves to figure out their core values, their core roots...and then they have figured out a way to maintain those and effect change in their worlds.  It's definitely easier when society is with you: it's the difference between running a 5K and a marathon.  But if we dig deep and stay true to our values, we can affect our friendships, our families, our schools, and, in some small way, our society.  So I will continue to advocate for disability rights, to make sure that bullying is never, ever tolerated in our schools, to do my best to treat people equally, no matter their race, ethnicity, sexual orientation, disability, or station in life.  And, because I believe words matter, I will be very vigilant lest the discourse of this political campaign begin infecting our schools, our workplaces, our communities.  It won't be easy, it won't be painless, but it will be right.  

In one of my classes today, I was teaching the Ode and thought I would show this video of an ode read at Obama's 2008 inauguration.  It's about the small things we live with every day, and about how each little act results in a new day, new potential.  I honestly thought it would go well with Hillary Clinton's election, but I think it also works well now: it's good for us to remember that we are products of our ancestry and that, by looking back, we continue to move forward.  So here it is.



Love, Momma

Monday, November 7, 2016

The Personal Is Political

Dear Jules,

Politics is a messy game, but, as a famous person once said, the "personal is political."  In other words, people can say that they won't "talk politics," but the life choices they make, the people they choose to accept, the way they feel about government, the roads they use, even the schools they attend, are all political choices.  As a woman, the clothes you wear are often construed as a political statement; it's interesting, for instance, that a woman wearing a "pantsuit" is a big deal for some reason, whereas for me, a suit is just a suit.  Or that a woman can wear something and be "asking for" rape...I honestly hope that, by the time you read this, you won't understand that one.

This is my third try at writing this, but I want to explain to you why this 2016 election feels so intensely (even more than usual) personal.

Some people are born with privilege: they are men, born in the United States, are white, speak the language perfectly, and don't have any (visible) disabilities.  I honestly don't think that there are as many of these people as we would think, but these are the people targeted by the Trump campaign this year.   To be honest, I'm one of these people, but even those of us with privilege should be cognizant of those who don't have it: people who, like my parents, were immigrants to this country and had to prove themselves over and over again.  My mom used to tell me that, every time she spoke, people would answer her slowly, as if she couldn't understand them.  She had the equivalent of a Masters degree from a Hungarian university (a good one!), but she would have had to go back to a community college to teach in the USA.  The constant need to prove yourself wears you down and makes you feel like less than.  

My African-American friends also have to prove themselves all the time.  It's sad when my friend, a brilliant violinist, isn't appreciated for her talent, or when she has to teach her teenage daughter to be especially careful around the police.  This same friend attends Emanuel AME church, where her friends' kids knew to "play dead" during the deadly massacre that happened over a year ago.  Constantly afraid of the police, having to prove that you're not a criminal, having to prove that you are smart and talented, makes you feel less than.  

Our gay and lesbian friends have also struggled with this.  Only a few years ago, they were finally able to be married (some of them have been in relationships longer than my straight friends have). If they want to have children, they have to either pay a lot of money or try and find an adoption agency that will work with them.  Many of the "Christian" agencies will not.  And if they are "lucky" enough to have a child, they have to prove that their child will grow up "normal," whatever that means.  As my friend Leigh Moscowitz observed in her book, they have to take on all the conventions of a straight marriage.  Constantly being afraid to hold hands with your loved one, having to prove that your marriage is valid, that you are entitled to be a parent, makes you feel less than. 

As a woman, I've struggled with this.  I'm 5'3", and I look young for my age, so people constantly question my intelligence.  People at meetings have talked over me, people have called me "Julia's mom" without learning my name, people have even called me "Ben's wife" or, worse, "Mrs. Benjamin Rogers."  My students call me "Miss Rogers" all of the time, but they call male colleagues without Ph.D.'s "Doctor."  Constantly having to prove that you are equal, having to prove that you can handle being a mom and a career woman, makes you feel less than.

And then there's you.  While life for people with Down Syndrome is better than it used to be, it's still, as you know all too well, not great.  Right now, as you go to Kindergarten, we have to prove that you have "what it takes" to be included in a regular classroom.  However, you can't have too much, or your services (we have Medicaid to handle the therapy and the constant doctors' appointments) get taken away.  Other students don't have to prove that they are worthy of being in a regular, public school, Kindergarten classroom, but you do.  Constantly having to prove that you're good enough, that your Down Syndrome doesn't define you (you're NOT always happy!!!), that you are a worthwhile member of our society, makes you feel less than.

Finally, I get to "equal to."  Hillary Clinton's slogan is "better together," which implies working together:  not trying to prove anything, but using everyone's strengths for the greater good.  Whether she means this or not, I can't tell: the problem with rhetoric is that it's hard to tell.  But I DO know that you wouldn't be in Ms. Walpole's Kindergarten class if Hillary Clinton had not co-sponsored the IDEA Act: the Individuals with Disabilities in Education Act.  Basically, this act entitles you to be educated in the "least restrictive environment" possible, which, for you, is a regular education classroom.  We had to work hard and argue hard to make this happen, but without this act, you wouldn't even have the chance to prove yourself.

None of us should have to "prove" that we are worthy of being in the world, in the United States, in our families, in our schools, in our workplaces.  By virtue of being who we are, by virtue of being diverse, we are making our communities stronger: better.  So if anyone is reading this, or if, in future years, you have no idea why I voted the way I did, I want you to think about the IDEA act, about the wonderful work that Hillary Clinton has done for African-Americans, lesbian and gay Americans, female Americans, and Americans with disabilities.  The political IS personal, and her actions say far more than words ever could.





Wednesday, May 18, 2016

Family Ties

Dear Jules,
Don't worry- this is not a post about that cheesy show from the 1980's (although I doubt that they even re-run it any more, so you might have to look it up).  It's actually about the feeling of being somehow, inextricably, connected to someone: and how those connections serve to connect us to others.

I think a lot about connections every May 18th: the anniversary of my father's passing and the birthday of my closest friend, your aunt and Godmother Cindy.  It's strange that it's been fifteen years since my father died, and I often think about this quotation from Charlotte Brontë's Jane Eyre when I think about him:

I sometimes have a queer feeling with regard to you - especially when you are near me, as now: it is as if I had a string somewhere under my left ribs, tightly and inextricably knotted to a similar string situated in the corresponding quarter of your little frame. And if that boisterous channel, and two hundred miles or so of land some broad between us, I am afraid that cord of communion will be snapt; and then I've a nervous notion I should take to bleeding inwardly.

I love this for so many reasons: every May 18th, I feel that I am "bleeding inwardly"; while the wound might scab over and become less immediately painful, it never really heals.  And I love the analogy of a string tying us to the people we love, tightly, so that we have an almost physical connection, a "communion," as Brontë puts it.  I feel this way about my immediate family and about my closest friends.

I've written in other letters about my dad.  On our wedding bouquet, which you will inherit someday, you'll see attached a little statue of the Virgin Mary that my dad, unbeknownst to me, carried with him everywhere.  So today I went to this little shrine and talked with him about you, about your daddy, about all the things he had missed:

It makes me truly sad that he never saw me get my Ph.D., get married...and, most of all, that he never met you.  He would have absolutely adored you.

And yet I feel that God gave me a huge gift the year that my dad died.  It was the year I grew really close with your aunt Cindy, and I think it no accident that, on a day that string snapped, I was reminded of another string: one that would only grow stronger and more enduring.  I had been living in Worcester, Massachusetts, teaching at Assumption College, and I was so very lonely, so anxious, so unsure of what would happen with my life: my career, my relationships, all of it.  My second year in Worcester, Cindy moved there to teach at Worcester Academy, and we became really, really tight.

Right after your grandpa died, I remember going back to Worcester to pack up all of my stuff; I would be heading to Chapel Hill to begin my Ph.D.  I worried that the connection between me and Cindy might also snap, and it just felt like too much to bear.

But Cindy has become part of my life, part of my family.  We do have more than two hundred miles between us, but she was my maid of honor at our wedding (for which I can't, for some reason, find digital photographs, but you have the album).  When you were born, I asked her to be your godmother, and she flew down here for the baptism:


We've made sure to see one another at least once a year since then, and our relationship has only grown.



Our last visit to Montclair was for New Year's Eve, and it was a perfect way to ring in 2016:

Losing my dad sucked, and nothing will ever, ever replace him, but I am glad that I also have someone to celebrate this day.  Your aunt Cindy has always felt like family and, in a way, she now is (if godparents count).  She is so very kind yet firm, funny yet sensitive, wacky but incredibly down to earth, and, well, just...unique.  On this day, her birthday, I'm grateful that God put her in the world, into our lives, and into my family.

Sunday, May 15, 2016

Losing a Friend

Dear Jules,
It's been a while, and I need to post about a lot of things- to remind myself, I want to post all of my research about inclusion and also about running and body image.  But right now, all I can think about is my colleague, Conseula--and since that's a hard name for you to say, you might remember her better by this:
We didn't spend too much time with her, unfortunately, but let me tell you--she got so very excited every time she saw you.  I remember the first English Day, when I brought you with me, and she insisted on holding you the entire time.  "I looove holding babies!" she said, completely at ease with this show of emotion in an academic setting.  Every time she saw you, she would come in for a hug; even this year, when she was the associate provost of our College, she stooped down to hug you if ever she saw you.  I know she was busy and super-important, but she never let that get in the way of her feelings, her passion.

Sometimes I feel awkward as an academic.  I think I can't get too excited about what I'm reading, and I definitely can't admit to reading "trash," or people will think less of me.  I also remember talking about an article she was working on concerning the place of emotion in literary analysis.  And that's the thing about her: she was smart as a whip, she could talk jargon until the cows came home, but she also was okay with excitement, with reading romance novels, with squealing in the middle of English Day when she saw a baby to hold.

So many people were closer to her than I, and I feel guilty for even writing this.  After all, many people could memorialize her so much more effectively.  Other than the random run-ins with her (just recently, I dropped my wallet on the street and she brought it in to your preschool so that I would get it), and a short period of time during which she and her husband borrowed our car, we did not get to see her enough.   I do remember when I was interviewing for my job, and she took me to breakfast, and we just had so much fun chatting.  It was one of the moments that, for me, crystallized my decision to teach at the College.  Later, she guest lectured for my classes whenever I needed her to and got my students excited about Octavia Butler and comic books.

But I'm writing this because I want you, when you're older, to remember this person, and to remember how much, and how unconditionally, she loved you.  I'm sure you will get to know her daughter, who will one day be one of your babysitters (I'm getting there, Frances!  We are super bad about going out).  And I know you will see a lot of her in Frances, and you will see, through her amazing daughter, how much love, intelligence, passion, and conviction this person had.  I'm grateful that Frances--and Cate, too--live near us and are a part of our lives because I want you to get to know them.  She lives on in them and, some day, I hope that a bit of her will live on in you.

Monday, March 21, 2016

Closer to Home

Dear Jules,
So often in life, it's the grand gestures that command attention.  I'm all about symbolism and grand gestures, so today, on 3/21, Down Syndrome Awareness Day, I went all out.  Got my nails painted--a lot of people at the nail salon asked me "why I liked blue and yellow so much," and I got to explain why I chose these colors on this special day.  "So," they asked me, "when are you going to do it again?"
"Next year," I said, "on March 21."
"Why March 21?"
"Because Down Syndrome is Trisomy 21, which means that people are born with an extra copy of the 21st chromosome--therefore, they have 3 copies of the 21st chromosome.  March 21st is 3/21, which is why it is DS Awareness Day."
It's amazing how many people don't know that...and how many people are too embarrassed to ask.

Honestly, I did not know anything about Down Syndrome before you were born, and I welcome the questions.  I welcome the opportunity to teach anyone about why you might do things a bit differently than others, and why I wouldn't have you any other way.

Those of you who follow this blog or my life know that I just ran a marathon to support LuMind RDS.  I took lots of pictures, raised $1780 for LuMind, including sales from Bravelets, and had a great time.  We even made the symbolic gesture of running across the finish line with you.
But today, I want to talk about the little things: the things closer to home.  You all know about my advocacy, but do you know that Ben practices letters with Julia every morning?  Even on their drive in, he has her practice her words by saying "Hello, mailbox.  Hello, water.  Hello, tree," etc.  And she repeats all of the words after him, even taking the initiative to say "hello" herself.
That's just one example of a little thing, closer to home, that is nonetheless as helpful (if not more helpful) in helping Julia live the fullest life possible.

The truth is that I hope to God that we will find treatments for Alzheimer's so that Jules doesn't have to deal with early onset, as 60% of those with Down Syndrome do.  I hope that we can find drugs that make it easier for her to learn, to remember (not, I must emphasize, to "cure" DS).  And these are all of the things I ran my marathon for.

But when Julia was one, not walking yet, we found that the solutions closer to home- the treadmill training I've written about in this blog, and especially the Charles Webb Center, were the things that helped you achieve your goal of walking.  I've written about the Webb Center before as well -- please read that post if you haven't.  The point is that they got you walking, they worked on your confidence, they worked with you day in and day out.  These people are rarely in the newspaper and, even when we do the Avondale 5K to raise money for them, they don't receive the credit they deserve.  But what they are doing is no less significant than pioneering a new drug or coming up with new studies.  They are working on everyday skills, helping people live their best lives...right here, right now.

And for this reason, I'd like to give a shout out today to the Disabilities Foundation of Charleston County.   Their mission statement makes me tear up, because it's exactly what I want for my daughter, and for all people (with our without disabilities):

WE VALUE

The health, safety and well-being of each person
Dignity and respect for each person
Individual and family participation, choice, control and responsibility
Relationships with family, friends and community connections
Personal growth and accomplishments
Full community inclusion and participation

Dignity, respect, choice, connections, and inclusion are all things near and dear to my heart.  They not only run the Webb Center, but they also work to provide housing, jobs...and they have a bakery that employs people with special needs!

Again, it's not a grand gesture, but providing someone with employment, a place to live, a place in the community...these things are priceless.  So today, on World Down Syndrome Day 2016, I celebrate everyone that has helped Julia (and continues to help her) become the person she is, the person she is meant to be.