Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Archive for the category “acceptance”

Down Syndrome Awareness and the future of Sarah Defies Gravity

So, 31 for 21 is almost over and I admit that I didn’t put forth one single post for it. Why? Well…the biggest reason is that we’ve been busy and that there are other things on my mind, so I just didn’t have the inclination. The second is slightly more selfish. And lazy.

I started this blog just over a year ago with one goal in mind, and that was to educate and inform people who might otherwise not be educated or informed about Down Syndrome about the reality of Down Syndrome parenting through a series of daily life posts as well as “essays” or more fact-based entries about Down Syndrome such as my “Just the facts, ma’am” and “spreading the word to end The Word” posts. I don’t purport to be an expert on the topic, but I know that if you’re not “in” the community it can be really hard to find factual information because you’re typically not talking to people in the community every day, and I saw an opportunity to educate people and took it.

Though there has been some evolution of this blog over the past year, especially due to some unforeseen and difficult health challenges, I feel as though the overall theme has been maintained. This is an informative blog about Down Syndrome first and foremost.

So the idea of 31 for 21 seems a little redundant to me strictly because the entire purpose of my blog has been to educate and inform, rather than to just report on our daily lives, so there isn’t a lot left to say after a year. I do want to keep raising awareness for Down Syndrome, but something like 31 for 21 is just too difficult for me to keep up with or to squeeze out 31 posts because a lot of it would just be repetitive.

I want people to be aware of Down Syndrome and I want people to be informed about Down Syndrome. If I could have any one wish, I think it would be that people were 100% understanding and informed about Down Syndrome, and that prejudice and misinformation about Down Syndrome would disappear, because I truly believe that it’s a bigger hindrance to our children’s success and development than that extra chromosome is. If we give up on our kids just because they have an extra set of genetic material, what does that say about us as people? What does that say about us as a society? Children with Down Syndrome have infinite potential…it’s up to us to unlock it.

If you are reading this post and you would like to learn more about Down Syndrome and “bust some myths”, here are some helpful links to get you started:

National Down Syndrome Society: the national advocate for all people with Down Syndrome in the United States and probably the best source of information there is. See their articles on “Myths and Truths” and “Down Syndrome Facts” especially.

Dr Brian Skotko is the leading expert on Down Syndrome research in the US. For those looking for more scientific-based information, this is a good place to start.

downsyndrome.com, downsyn, and the Babycenter Down Syndrome board are great communication boards to connect to parents with children with Down Syndrome, and sometimes, the parents are the greatest wealth of information there is because after all, we’re living it every day.

On this blog:

World Down Syndrome Day: Just The Facts, Ma’am a semi-comprehensive factual post about Down Syndrome

A Valuable Life a frank discussion of abortion for Down Syndrome and the value of life from the perspective of a pro-choice individual

Spreading the Word to End The Word a discussion of why it’s wrong to use the R Word

What Down Syndrome Can Do For You about how Down Syndrome changed my life for the better

Perfection and Perspective on what “perfect” means.

 

Now, for the second part of this entry, and going back to what I said about being busy and having other things on my mind:

I’m not sure where I see this blog going, honestly, or if I see myself keeping up with it on a regular basis or at all anymore. On one hand, I enjoy writing and I enjoy blogging and I enjoy connecting with people while talking about something I care about, but on the other hand, I’m out experiencing life rather than writing about it and I’m enjoying that, too. There is also the matter that in January I’m beginning school to hopefully complete a degree in genetics and eventually become a geneticist and a researcher of Down Syndrome, so I don’t know how much I’m going to want to be writing about Down Syndrome in my spare time.

For now I think I feel safe saying that this is the “end” of Sarah Defies Gravity, as in there will be no more posts on this blog, or if there are, they will be few and far between. However, I plan on leaving the blog up and completely intact to serve as a resource for people who wish to learn more about Down Syndrome, because there just aren’t enough of those and I would feel like I was doing the community a disservice by removing one, even my mediocre one!

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One and One-Half Wandering Onlies

*with apologies to Paul Simon for jacking his song lyrics like that

It hit me today (okay, yesterday…) that I am, in fact, an only child.

Sort of.

I think it was because Sarah lost her lovey, which happened to have my sister’s voice in it. My sister died eight months ago next week. I still don’t want to write about the details, I still don’t want to talk about her. I know that when I do I will feel so much better, like all of the pain and hurt and feelings of fear and unhinged-ness will pour out and then evaporate (‘that’s poetic…that’s pathetic’) and I’ll feel a lot better. But I’m not ready to talk about it, and so I won’t. Because grief is a funny thing and it’s also a fickle mistress and I choose to give into it…or something.

But losing my sister made me, in a sense, an only child, and there’s the ever present reality that Sarah, too, will be an only child. That’s not a reality I like, that’s not the reality I would have chosen for her, but it’s the reality that exists and it’s the only one I have to work with, so, just like all of the other lemons life hands us, I have to accept her onliness.

Not that being an only child is so bad. I was a lot more settled in this decision when she was a newborn and we (the unit of Dec and I, back when it was a unit) made it together, but after we changed our minds, it was a reality that was a lot harder to swallow.

It’s a practical reality, and it’s a reality that will make things a lot easier and a lot better for both Sarah and myself because of the logical factors, but when it’s not the thing you want it’s hard not to want to throw something against the wall and yell SHIT! about it.

I wanted Sarah to have a sibling with Down Syndrome because even if they didn’t always get along, or their personalities clashed, there would always be someone there who understood her, someone who GOT all the things about having an extra chromosome that us lowly 46ers just can’t. And I wanted to have another child with Down Syndrome because Down Syndrome knocked me off my feet with how awesome it is, and because it’s all I’ve ever known. Down Syndrome parenting was something i wanted, and multiple children with Down Syndrome was also something I wanted.

Regardless of her sibling status, Sarah will have a good life. She has parents who adore her, she has family who adore her, she has people who have never even laid eyes on her who adore her. She has a spitfire personality, sparkling mischief in her eyes, and the will to fight. She has accomplished so many things in sixteen-going-on-seventeen months and she will continue to accomplish so many things for sixteen-going-on-seventeen months after that and after that and after that. She is beating cancer, she is crawling, she is saying Dada and Papa and NO, she is doing things and learning things and being things beyond my wildest imagination. She does not need a sibling to be whole.

Does it make me sad that she’ll never have a sibling? Yes, and it makes me sad that I’ll never have another baby. But in the end, I know that she’ll have a good life, and she might miss out on the sibling experience but she’ll gain so many other experiences. And I also know that this crazy journey started out with just Sarah and I and this crazy journey will end with just Sarah and I, and I’m okay with that. I’m okay with that because that’s the way it’s supposed to be, and because I can’t change the hand that fate has dealt us, I can only take it and own it, hand over my chips and accept twice as many in return. I can deal with that.

World Down Syndrome Day: Just the Facts, Ma’am

Today, March 21st, is World Down Syndrome Day. Why March 21st? Because Down Syndrome (or T21) is a chromosomal defect where three copies of the 21st chromosome are present. 3 copies of the 21st chromosome=3/21. Get it?

It’s also an excuse for Dadad to dress Sarah in his alumni colors of yellow and blue (can you guess where he went to school?) but I digress.

I would like to take this opportunity to give some facts and information on Down Syndrome and my wishes for the future of Down Syndrome and for my daughter.

What is Down Syndrome?

Down Syndrome is the most common genetic defect. It is a triplication of the 21st chromosome, also known as trisomy 21. It affects about 1 in 800 live births. Approximately 150 thousand babies are born each year with Down Syndrome worldwide.

What are some of the symptoms of Down Syndrome?

The most common symptoms of Down Syndrome are cognitive delays (learning disabilities), small stature/slow growth, distinctive facial features such as an absent nasal bridge, almond-shaped eyes, a small mouth (sometimes accompanied by a protruding tongue), and light colored (brushfield) spots in their eyes. Other physical signs include a single crease across the palm, short, stubby fingers or a “sandal toe” (large gap between the big toe and other toes). Not every person with Down Syndrome will have every physical feature of Down Syndrome.

What are some health problems that can occur alongside Down Syndrome?

The most common physical health problems that accompany Down Syndrome are heart conditions such as AVSD, ASD and VSD (holes in the heart), conditions of the intestine such as a duodenal atresia (“double bubble”), vision problems such as myopia, amblyopia, strabismus or nystagmus, thyroid problems, low muscle tone, hearing loss, an increased risk of leukemia (but better chances of responding to treatment, and lower risk for other cancers!), or seizures.  However, none of these things are a sure thing. A child with Down Syndrome can be born with many health problems or no health problems, just like a child without Down Syndrome.

I’ve heard Down Syndrome is more common if you’re over 35. Is this true?

Yes and no. Although 80% of children with Down Syndrome (including Sarah) are born to people under 35, your statistical chances for Down Syndrome are much higher after 35. Your chances under 30 are 1 in 1000, which goes up to 1 in 400 at 35, 1 in 60 at 42, and 1 in 12 at 49+.

What causes Down Syndrome?

Down Syndrome is caused by a triplication of the 21st chromosome. Although Down Syndrome is typically a random event, there is one form of Down Syndrome that is inherited.

What do you mean, different forms of Down Syndrome?

There are three different types of Down Syndrome: nondisjunction, Robertsonian translocation, and mosaic.

Nondisjunction is the most common type of Down Syndrome. Approximately 90% of all people with Down Syndrome have this type. This is a straight up triplication of the 21st chromosome. Every cell of a person with nondisjunction Down Syndrome’s body contains this triplication.

Robertsonian translocation and mosaicism account for approximately 10% of all cases of Down Syndrome. Robertsonian translocation is the only kind of Down Syndrome with a heritable component; that is, at least one parent is the carrier of the gene that is passed down and causes this type of Down Syndrome. Robertsonian translocation happens when one piece of the 21st chromosome “breaks off” and attaches to another chromosome. Every cell of a person with translocation Down Syndrome’s body contains this triplication. Mosaicism occurs in a similar way to nondisjunction, however, only some of the cells of a person’s body are affected, whereas some have the standard pair rather than a triplication. Because not every cell is affected, some people erroneously believe that this is a “less severe” form of Down Syndrome, however, this is not true.

So Down Syndrome isn’t a spectrum disorder?

No. Down Syndrome is not a spectrum disorder. You either have it or you don’t.

But I know somebody with Down Syndrome who can do x and y, and I also know somebody with Down Syndrome who can’t do x and y, so the first person is obviously higher functioning.

My fiance can play five instruments. I can’t play any instruments. Does that mean that he’s higher functioning than I am? No…it just means he can play five instruments.

People with Down Syndrome are first and foremost people. As people, they have a wide range of things they can and cannot do. That doesn’t mean that a person with Down Syndrome who can do X and Y is “higher functioning” than a person with Down Syndrome who can’t do X and Y. It just means that they have a different set of skills.

Can people with Down Syndrome learn (read, write, etc)?

Yes, absolutely! People with Down Syndrome may have cognitive delays that cause them to learn slower, but that doesn’t mean they can’t learn at all! With the proper help for them to reach their full potential, many people with Down Syndrome learn to do everything people without Down Syndrome can do, including reading, writing, math, and other academics. People with Down Syndrome can, and frequently do, graduate from high school and go on to college.

What is the life expectancy of someone with Down Syndrome?

Fortunately, life expectancy of people with Down Syndrome have improved greatly over time (in 1980, the life expectancy of a person with Down Syndrome was 25!)  The average life expectancy of a person with Down Syndrome is 50, however, many people with Down Syndrome live into their 60s and even longer.

Do people with Down Syndrome live full and happy lives?

YES! People with Down Syndrome can absolutely live full and happy lives. Many people with Down Syndrome go to college, get married, drive a car, and hold down steady jobs. Although they may require ongoing support, there is no reason why they would be unable to have a full and happy life.

Can people with Down Syndrome have children?

Most men with Down Syndrome are infertile, but women with Down Syndrome are largely considered to have normal fertility, so I suppose the answer is yes. I don’t know of any couples who have Down Syndrome who have had children, though.

I’ve heard that 90% of babies with Down Syndrome are aborted. Is this true?

Again, yes and no. 90% of all babies with Down Syndrome are not aborted; only those with a prenatal diagnosis. This accounts for fewer than 20% of all babies with Down Syndrome currently. However, with new technologies emerging, it’s possible that we could see these numbers increase, which is why it’s important to educate people about the reality of Down Syndrome, rather than just the scary things that they are misinformed about.

What are your hopes for the future of Down Syndrome and how people view Down Syndrome?

I hope that people will eventually stop viewing Down Syndrome so negatively. Down Syndrome is not a death sentence! People with Down Syndrome lead full and happy lives. There’s nothing wrong with having Down Syndrome. Our focus should not be on eradicating Down Syndrome from existence, but instead on promoting education and support for people with Down Syndrome and their families. I hope that someday, there will be no more misinformation about Down Syndrome.

What are your hopes for Sarah, as a person with Down Syndrome?

I hope that Sarah is, above all, treated as a person first. I do not want people to look at her and see a disability and discredit her. I hope that she is able to be a self-advocate, and that she will want to represent people with disabilities and spread the word to change people’s viewpoints on Down Syndrome.

Spreading the Word to end “The Word”

Words hurt.

You know that adage “sticks and stones may break my bones, but words will never hurt me”?

It’s bullshit.

Words are some of the most powerful weapons there are. Words have started wars, incited violence, and caused people–innocent people–to harm or even kill themselves. Words hurt, period.

And that includes the R-word.

It’s not cute. It’s not funny. It’s not “cool”.

It hurts. It hurts Sarah and every other child like her, who marches to the beat of their own chromosomally enhanced drum. It hurts me on behalf of my sister, who once told me that she didn’t like hearing that word because it felt like the other kids were saying that it was bad to be like her. It hurts people with autism, with cerebral palsy, with TBI, with dyslexia…it hurts anybody who is a little bit different, who has to work a little bit harder, but who is worth every bit as much as anyone else.

You might think it’s okay. You might think it’s “just a word”, that you don’t “mean it that way”, that I’m “too sensitive”. But let me tell you something.

When you say that word, I picture my daughter. I don’t hear “You’re so retarded” or “that’s so retarded” or “you’re a tard”. I hear “That’s so Sarah.” “You’re so Sarah.” “You’re a Sarah.” I hear “That’s so Hannah.” “You’re so Hannah.” “You’re a Hannah.”

I picture you saying it right to their faces. I picture you looking at my sweet, bubbly baby, my sister, who loved every person and dog she ever met as if she’d known them her whole life, and I picture you saying those words to their faces. It’s not just a word. It’s an attack. An attack on the most vulnerable, most innocent members of our society, and it’s not fair. It’s not right.

You wouldn’t call a black person a “nigger”. You wouldn’t call me a “fag”, or a lesbian a “dyke”. You wouldn’t use those words to mean bad or wrong or stupid, either. So why would you call someone a retard?

Today, I’m asking you to make a lifestyle change. I’m asking you to go to http://www.r-word.org and take the pledge–for today and every day–to eliminate that word from your vocabulary, today and every day. It doesn’t take much, but you can change the world just by changing your words. Do it for Sarah. Do it for Hannah. Do it for the hundreds of thousands of people in this country like them. They deserve better.

Thankful

By Thanksgiving, I won’t actually be able to blog (as we’ll be moving the next day), so I wanted to make the post about all the things I’m thankful for this year today instead. So…without further ado…here it is.

1. Dec

Dec is the longest long shot I’m glad I decided was worth it, because was he ever. The man I fell hopelessly in love with just about a year ago, who said he was not only straight but didn’t want children, has turned out to be the best future husband and father I could have ever asked to share this journey with. I am thankful for his patience, his love of Sarah and his love of me. I am thankful that he is always a good listener, and that he always wants to help–get up with Sarah in the night, take the dogs out, or just do that extra something around the house. He amazes me every day and I’m thankful I get to share my life with him.

2. My mom

Yes…really. I never knew  how much I could appreciate my mother until Sarah came along, and now I wonder how I could have appreciated her so little! She is a special needs mom (and grandma!) extraordinaire, a constant advocate, brave and funny and wise. She talks me down when I’m about to lose sight of the horizon and provides me with a constant source of new news, information, therapies, and medical advancements in the Down Syndrome world. I’m thankful that I have such a good mom, but I’m more thankful that Sarah has such a good grandma, who cares so much about her.

3. my Down Syndrome family

When I first started posting on the Babycenter Down Syndrome board, I was bewildered and completely overwhelmed by what Down Syndrome meant for Sarah, for me, and for the rest of our lives. I’m thankful that the hospital equipped me with the information about this fantastic, knowledgeable, intelligent pack of humans. Because I was introduced to them, I, too, have become a more knowledgeable human, and an advocate for my child and other children like her. I don’t know what I would have done without this group, I really don’t. I’m thankful for them beyond what words can express.

4. Sarah, of course.

What, did you think I forgot her? Of course not. Save the best for last, don’t you know?

I don’t even know what to say about Sarah. I’m so thankful that I was chosen to be Sarah’s father. That she was born with an extra chromosome. That everything fell apart, so I could put it back together.

She may only be six months old, but Sarah is already changing lives, making people better people, both on the Internet and in real life. I can’t tell you how many people have told me that they were profoundly impacted by Sarah’s story, how many people have stopped us in the street to talk about Down Syndrome, how many people we have stopped to talk to because of Down Syndrome, and because of Sarah. Her sweet smile, her warmth…everything about her is perfect, and I’m so thankful that I get to introduce this kind of perfection to the rest of the world. Of course, it’s a tall order, being the parent of something this perfect, but I’m so thankful that I get the opportunity. I just hope I do right by her, and don’t screw it up, so that someday, maybe, she might be thankful for her parents just like her parents are thankful for her.

Other things I am tangentially thankful for that do not in any way involve Down Syndrome:

Diet Coke,  the radio station channels on TV, the San Francisco Public Library, my dogs, Starbucks, Apple (for giving me my computer, iPad, phone…you know…), salted caramel biscotti, sunshine, and whoever invented Annie’s Organic macaroni and cheese.

 

Guest post, sort of: interview with Dec!

Every time I try to write a post about Dec and Sarah, I feel like it would be better in his own words. But every time I bring that up, this happens:

Me: Dec, would you consider writing a blog post about Sarah?

Dec: You have a blog?

Me: …I’ve showed you my blog.

Dec: Oh, I thought that was something different. Um, I don’t really know how to write a blog post even though I’d love to.

So I decided it would be easier on everyone involved if I asked the questions, he answered them, and I posted it on the blog. Here we go!

What is your relationship with Sarah like? Do you feel like her dad?

Feel like? Um. I don’t know. Do you? Of course I do, I mean, I don’t wake up and go “oh there’s Christopher and there’s Christopher’s kid.” yeah, I feel like her dad. She’s my baby girl. What kind of question is that?

Sorry! I’m trying to ask things people wonder about. Or that I think they do, anyway.

Well, I don’t know. Maybe it’s different for you, but she’s my baby girl. I don’t even think about the fact that she has a mom anymore. She’s mine.

How did you first feel when I told you she had Down Syndrome?

I remember when you phoned me, you sounded like a scared little kid. But I know [a friend who has DS and is in her 20s] so I wasn’t scared like you were. I was nervous when you told me her mom didn’t want her, because I didn’t know what that meant for us.

But you embraced her right away.

Well yeah. As soon as I looked at her, I forgot that I didn’t want to have kids of my own.

So we didn’t feel so different when we first met her.

Does that really surprise you?

No. What was your first impression of her?

That she was beautiful and so, so perfect. If you hadn’t have told me, I wouldn’t have known she had down syndrome, my first thought was ‘she looks just like you’. And I wasn’t worried about her future or anything, I was just happy that she got to be part of my life. It was a really incredible experience.

What are things like now? Anything harder than you expected? Easier?

I think you have a harder time emotionally than I do. I never grieved. Maybe because I didn’t have any expectations first, so I got lucky. But I’ve always just thought Sarah was the best thing that ever happened to me. The therapies are kind of more intense than i thought they would be and that bugs me because she’s just a baby. But all of that–the first little while after she was born–seems really long ago now. This is the way we’ve always been.

Can you tell me about having more kids in the future?

I think you know this! But, uh. I guess when Sarah was a couple of months old, I really realized that I wanted more kids, but I didn’t want more kids that were…

Neurotypical?

I was gonna say normal but Sarah is normal, so yeah. Neurotypical. I wanted more kids with Down Syndrome, because Sarah made such a huge positive impact, and I don’t have any interest in the experience of having a neurotypical kid. So I told you I wanted to adopt a baby with Down Syndrome in a year or two.

You don’t have any interest in raising neurotypical kids?

Nah. My only basis of reference is Sarah, and she’s perfect. Why mess with a good thing?

Anything else you’d like to add?

I guess for parents who are expecting kids with down syndrome or just had a kid with down syndrome. don’t be afraid. It’s not a curse. It’s going to be the best thing that ever happened to you and you’ll never, ever look back.

 

He’s a keeper, that’s for damn sure.

 


 

 

 

 

What Down Syndrome can do for you

Six months ago today–half a year ago!–I became, in a mixed blessing, the father of a little girl with an extra chromosome who changed my life in a big way. If you’ve never read the story of the day Sarah was born, you totally should.

But tonight I’m not thinking about the day Sarah was born. I’m thinking about what it’s like now.

My whole world changed the day Sarah was born. Of course it did, because being a parent kind of does that. But it changed in ways that were much bigger than that, much more powerful, and wonderful, and amazing, and hard. It changed in ways that have built me up as much as they’ve broken me down.

I can remember feeling so lost for weeks after Sarah was born, and at some point, I picked myself up, dug out the package that the hospital had sent me home with, and decided not to give up hope. It’s 2011, I thought, how bad can it be?

The answer, as it turns out, is pretty damn good.

Before I was Sarah’s dad, I didn’t know too much about Down Syndrome. I had never even met someone with Down Syndrome. It wasn’t that I had a bad perspective on it–it was that I had no perspective. I didn’t know what I was supposed to expect.

After six months,here is what I’ve come to know:

1. Set your expectations as high as you want, but don’t set a time limit. Sarah will be able to do everything any other person can do–on her own schedule. Rushing and forcing things will lead to disappointment.

2. People say stupid shit. None of it is true.

3. It doesn’t take a special kind of person to raise a special kind of kid. Sure, it takes a little more patience. There’s a little more fear and uncertainty. But you don’t have to be some kind of miracle worker. You don’t have to come with credentials. All you need is patience and parenteral love.

4. Down Syndrome will change everything about your life. It will take what you knew about your life, turn it upside down, shake it a few times, rearrange its bits, and then hand you the leftovers. But it will change it in wonderful, beautiful ways and by the time you’ve reoriented yourself, you’re never going to want your old life back.

Happy six months, Sarah. Your daddies love you more than anything in the world. You are perfect, and we are so astounded that we get to call you ours.

Well, meh.

Can I even consider these posts part of 31 for 21? I’ve fallen so far behind.

Life has not been easy around these parts the last couple of days. That sounds dramatic. On the immediate side, everything is fine. Sarah is happy, healthy, growing, and adjusting to her new sleep schedule (in her own bed…sniff…sniff…), Dec and I are happy and healthy and preparing to move, and life is pretty good in that way.

But there are things that are going on that are just stressing me out and stretching me thin, and it’s hard to deal with these things when they all happen at once, you know, no matter how minor.

The first one is that Sarah’s mother has asked, her words, for us to “back off”. She doesn’t want any more contact with Sarah. No pictures or visits or updates. This is, obviously, draining. Perhaps not unexpected even though the arrangement we had set up when Sarah was ~3 months old was different, but still draining. I lost a friend, but more importantly, Sarah lost her mother. Even if she wasn’t going to fulfill a maternal role in her life, she was still important!

So there’s that.

There’s also the matter of my sister, which is something that I keep struggling to talk about on this blog. My sister has special needs. I don’t want to go any further than that in the interest of her privacy, so we’ll just go with that: she has special needs, both medical and developmental, that will require someone to care for her for the rest of her life. She’s fifteen years old, functionally 5-6 in most areas.

She is a wonderful human being and I adore her. I’m glad she’s my sister. But my parents are going away for three weeks (and yes, this intersects with our apartment hunting trip. Yes, we planned for this. Yes, everything is under control) and dropping her off tomorrow afternoon, and that kind of stresses me out.

Not because I don’t want to take care of her, not because I don’t love her, but because it puts things into perspective. My parents will have to take care of her until they are too old to, and then that responsibility will fall on me. Which was fine two years ago, but now I have Sarah to contend with, Sarah who will also require some degree of parenting for her entire life. She may have more independence than my sister, but how much more? Will I really be able to handle two adult children?

And then there’s the other question–who is going to look after Sarah when we’re gone? She has no adoring older brother. She won’t even have an adoring younger brother. I don’t know what the options are going to look like by the time this is something we’re going to need to worry about, but it still scares me.

That’s the thing about this journey. There’s so much more uncertainty and fear. No matter what there are bumps along the way, but there are not quite as many bumps for those with neurotypical children. It hardly seems fair, but what can you do about it? Nothing. Just like every other hard part of this, you have to pick yourself up and keep moving forward. That’s all that you can do.

31 for 21 #5: Blogging FAIL.

I try really hard to blog every day. Really hard. But it can be tricky!

We are very busy around these parts these days! I’m not ready to blog about most of it until I’m absolutely certain what’s going on, but it’s very, very exciting!

What I do want to blog about is a feeling I’m almost ashamed to admit I have. And that is this feeling of depression and hopelessness I sometimes have, where I feel like I’m giving up hope on Sarah ever having a normal life. I hate that everything in her life is always going to be about Down Syndrome. I want people to see her as SARAH, not Sarah who has Down Syndrome. When she’s happy, why can’t she just be happy? Why does it have to be “oh, people with DS are so happy?”

I want people to see Sarah as an individual first. We do not define other people by their hair color, their eye color, the way they look, their preference on how they like their eggs cooked, or any of the other nuances of their personality, so why does it always have to be about Down Syndrome? She has Down Syndrome (and brown hair, and blue eyes, and little toes, and a pretty smile), but Down Syndrome isn’t her. It is only one part of her (wonderful, wonderful) identity, the things that make her her.

31 for 21 #2: Sarah and Dec

When I first met my boyfriend, he told me he didn’t want to have children.

He told me this before we were together–I can’t remember how it came up in conversation. What I do remember, however, is that I asked him why.

I always thought he would be a great father. He is bright, effervescent, full of energy and love and joy, and he loves children. He’s that person bending down to a baby in a stroller’s level, cooing at them, calming them instantly.

“Exactly,” he told me. “I love children, and I intend to keep it that way.”

We started dating when Sarah’s mom was five months pregnant. He came into it knowing that there would be, at least half the time, a baby in his life. He was okay with that.

One of the things that selfishly scared me most when Sarah was diagnosed was the idea that I was going to lose Dec. My world had already been put in a tailspin, the last thing I wanted was to have to deal with losing the first person I had ever really loved (now THAT is a story for another time!) on top of it.

But he surprised me. He surprised me by accepting that baby into his life as wholly and completely as if he had wanted her as much as I had. His acceptance of her–a child he hadn’t even really signed up for–was a huge turning point in my own ability to accept her.

After five months, I am continually astounded by the bond that they have, the way he has embraced her and embraced Down Syndrome, raising awareness, advocating for her, and taking a stand to be the voice for those who may not have one. He, like Sarah, has taught me a lot about being a better person, and I’m always wondering how I–a flawed individual, selfish and stubborn, obstinate, unwilling to change–could end up with these people, these sweet, unquestioningly loving people as part of my world. I don’t deserve them, that’s for sure.

Sarah thinks Dec hung the moon. Dec thinks Sarah hung the moon. From the time he gets home from work until the time we put her to bed, it is rare for the two of them to leave each other’s company. If she is frightened or upset, she seeks him out. They are truly kindred spirits, bound together in some incredible way.

Sometimes I think that they were meant for each other. That Sarah was meant to be born with Down Syndrome not to screw everything up but to draw Dec and I closer together, to give him–and me–an awakening of sorts.

He told me the other day that the only way he would ever consider having a second child was if they, too, could be born with Down Syndrome.

I can’t say what the future holds, but I think that would be just perfect.

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