Sarah Defies Gravity

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

Archive for the category “down syndrome”

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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I would have sang out your name in those old high school halls…you tell that to Gail, if she calls.

I think it’s finally beginning to hit me, almost 2 months later, that I don’t have Dec anymore. Probably because for the first month and a half he was always here if I needed him, right there in Queens prepared to take our daughter whenever I needed and fulfill his once-weekly obligation to see her on the weekend, and take her to her appointments once a week, and now he’s not here anymore. He’s 2500 miles away living his life and I’m 2500 miles away trying to pick up the pieces of ours.

And it’s hard, you know. It’s hard. I didn’t expect it to be so hard and I don’t know how to cope with it. With appointments upon appointments and work and bills and the always-present possibility that Sarah could, at any point, relapse. With the ins and outs and intricacies of parenthood, even with Down Syndrome and cancer removed from the equation.

I want him here with me. I want him here with us. We were supposed to be a family. I’ll make it, somehow, I know I will. I’ll make it and Sarah will make it, but the idea of someday “making it” doesn’t exactly make up for the fact that I’m drowning under a pile of responsibilities and uncertainties and things that are too hard for me to manage in the now. I most certainly can see the forest for the trees, the maze for the corn…but I can’t seem to find my way out of it.

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.

This Road I’m On

Let’s face it…2012 sucked.

I thought 2011 sucked, and in some ways, 2011 did suck pretty hard. But for the most part, 2011 was full of joy, full of wonder, full of hope.

2012 was consistently, entirely, completely full of suck and fail, and by the time we were 8 months in, I was beaten, battered, and completely destroyed.

But you know? 2013 is going to be much, much better. Thanks to some wonderful people who picked me up when I was fallen down and glued me back together when I was completely broken, 2013 is going to be like a better version of 2011, full of hope and promise and joy and life.

I’m going to be honest, because I pride myself in being honest on this blog–in part because part of the mission of having this blog is to present an honest, informative, realistic portrait of Down Syndrome parenting to the world at large (as opposed to a fluffy, sunshine and rainbows portrait of Down Syndrome), and in part because it actually makes me feel a hell of a lot better–for the first time since Sarah was a newborn, last month made me really hate the fact that she has Down Syndrome. Because I did a bad thing. I began to blame Down Syndrome for all of the things that happened. If Sarah didn’t have Down Syndrome then she wouldn’t have gotten cancer (not true). If Sarah didn’t have Down Syndrome and cancer then maybe Dec wouldn’t have gotten so stressed out and he wouldn’t have left us (okay, maybe true…but aren’t I better off without him if that’s the case? YES). If Sarah didn’t have Down Syndrome I could have a second child and go to college and all of the millions of other things I desperately wanted to do that I couldn’t–or thought I couldn’t–because Sarah had Down Syndrome. I was beginning to become bitter and resentful about Down Syndrome and how it was affecting my life.

There’s still a part of me that resents Down Syndrome for what it did to my life, but things are working out. I’m not trapped in a city I hate, alone and scared…I’m moving back home at the end of the month. I’m not going to be stuck in a dead end job with the end goal of strictly supporting Sarah. I’m going to university in January of 2013 to study science and, eventually, genetics.

And Sarah? Sarah is doing wonderfully. Sarah just started crawling…and saying “papa”. The word is teeming with possibilities for both Sarah and I, and I can’t wait to see where the road we’re on leads us.

Oh I’m SORRY, Princess!

Just a quick interlude of cute…

When I’m going through a tough time, apparently my favorite activity is to lay on my bed, listen to Johnny Cash, and pretend those tears in my eyes are allergies and nothing more. And that’s where this story begins.

I guess I had started idly, without really thinking about it, singing “It Ain’t Me, Babe” to Sarah at night. It wasn’t like I would put her to bed and sing it and make a big deal out of it…it was just one of those things that started happening.

Last night she had the hardest time going to sleep. I tried E V E R Y T H I N G…a bath, a feed, new PJs, a massage, even swaddling, that’s how desperate I was. Everything I tried was met with an indignant baby squawk…so sorry for offending you, princess!

It was around 1:30 in the morning when I finally figured it out, standing outside her door while she grizzled and shouted and probably pulled all of her NG tubing out (thankfully, no)…”go away from my window, leave at your own chosen speed…” She was asleep before the song was over.

So sorry, Princess. It won’t happen again.

I just wanna be there when you’re all alone, thinking about our better days when you had it in your bones

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(DISCLAIMER: any products linked in this blog post were purchased by Dec and myself to make our lives easier and I don’t get any money from the companies for pimping them out.)

It’s amazing how quickly life has gone back to “normal”, albeit a “new normal” with Sarah home. We spent our first two days at home, but by Saturday, we were ready to get on with the rest of our lives and decided to go out for some shopping and dinner. Sarah was armed with an adorable hat that combines both a giant flower and a sassy print (my two favorite things for my little lady), a very stylish pediatric mask courtesy of the grandmas and a stroller sign from Kind Signs and she did great! While I’m sure that there were some people who think we’re overly cautious new parents, I know that it’s the best and safest way to bring Sarah out in public.

I don’t want life to stop because of cancer. It did stop, for the three and a half months Sarah was in inpatient treatment and I don’t want it to be stopped for the next three years. I want her to be able to go out and experience life in this beautiful city and I want her to be happy and feel “normal”, especially as she gets older and realizes that he life is different from other kids.

Her first round of maintenance chemo is coming up tomorrow. I’m not sure what the protocol looks like for that, I know that we’re supposed to go to the clinic at 8:30 am (ughhhhhhh) and I’m sure the lovely nurses there will give us the rundown.

Sarah is back in regular therapy now–feeding, speech, and physical. She’s LOVING speech and the ST is very impressed with her progress in that area. She’s testing at about 9 months for speech which is great! I don’t want to talk about her PT testing…too fucking depressing. Suffice it to say that it’s very behind. Feeding therapy is also kind of a bust, but the therapist is an absolute joy to work with. She’s very laid back and easygoing and says that most if not all cancer kids–chromosomally enhanced or not–have difficulties with eating and with food even after treatment is finished because they’re either scared to eat because of vomiting or simply not hungry/nothing appeals to them. She and Sarah did some fun mouthing exercises and Sarah took a tiny bit of juice by mouth. Baby steps, right?

I’m starting to feel slightly more like a Down Syndrome parent again than a cancer parent. There’s still so much that’s different, but I feel a lot more relaxed and like I’m focusing on Down Syndrome and cancer in equal measures. Cancer is going to be very consuming for the next seven years of our lives but I don’t want to be obsessed with it the way I was. I finally worked up the courage to get in touch with the social worker for therapy and I feel like that’s helping a lot. I should have done that when Sarah was first diagnosed instead of trying to handle it on my own. Maybe then there wouldn’t have been so much to fix.

Sarah at (almost) 15 months

Sarah will be 15 months old on Friday! We’ve officially been out of the hospital since this morning and we start the maintenance phase (which includes outpatient chemotherapy, regular blood checks, and anything else that needs done) of her chemotherapy next week. Fun…but at least she’s home!

Due to her hospitalization (having spent 92 of the past 101 days in the hospital) and the things that accompany her illness, her development has basically stalled, and even started to regress in some areas, but we’ve seen surprising progress in other areas.

Physically she’s come to almost a complete stop from where she was pre-hospital. She’s no longer rolling or “scooting” like I reported in her first birthday post–I think because these skills went into disuse she has just forgotten them. We’re going to resume some PT (nothing serious, just low-key, 2x/week) in hopes of getting those skills back. She does sit up like a pro though! She’s reaching for and grabbing objects, and she likes to “study” them up close and go “oooooh!”

She recognizes about 25-30 signs. She signs consistently “mom” and “dad” (I’m mom, Dec is dad…thanks a lot you little shit!), “happy” and “cry”. she periodically signs “please” and “all done”. She’s getting very good at copying and probably copies about 90% of the time when we sign to her. She also responds by very enthusiastically nodding her head or very emphatically shaking it, which is funny.

She DOES speak a tiny tiny bit now! Her first word was “dad” and she will say it periodically if frantically signing “dad” does not magically manifest Dec in front of her. Her ST (one of the only ones we didn’t cut during her time in the hospital) says that she babbles very purposefully and that her formation of sounds is great. She’s a mimic in terms of sounds as well as signs and if you babble at her she’ll repeat it back. We’re thinking more words soon!

She came home on her NG tube. She’s still not particularly interested in eating by mouth and turns her head away or signs “cry” 😦 She has lost 4 pounds since starting treatment and is currently clocking in at 12 pounds 6 oz. We’re hoping that as her treatment dosages are lowered she’s showing more interest in eating and less interest in throwing up and we’ll see some weight gain. She looks like she’s wasting away and it’s so sad.

She’s completely bald and it’s super cute. I put a lot of horrifically ugly giant bow headbands on her head, because I can. Dec thinks that she needs these.

Despite what she HAS lost–weight, skills, her ability or desire to stomach solid food–she has gained some skills and some new friends on the oncology ward, and most importantly, she has not LOST her will to fight, her spunky personality, or the love she has for us. She’s the biggest joy of our life, and we’re so happy that she’s fighting and getting better and home with us. We can’t wait to see how she grows in the months to come!

Reflections (or a lack thereof) on Down Syndrome after one year

I hardly think about Down Syndrome anymore.

The reason for this is twofold. The first is that there are bigger things on Sarah’s horizon right now, and those are things that are forefront in our minds, every minute of every day. It’s impossible not to think about those bigger things, because they mean everything. Being a kid with cancer is a lot more significant than being a kid with Down Syndrome right now, and of course my focus is on getting rid of the cancer, on making it go away, which is not something I think about Down Syndrome, even if I could take it away, I would keep it around.

But the other part of this reason is just that Down Syndrome is no longer significant. It’s no longer world changing or life altering, it just…is. It was so momentous at first, so big and scary, and for awhile when Sarah was little I was obsessed with Down Syndrome. When I looked into her eyes, I was looking Down Syndrome in the face. She wasn’t Sarah, she wasn’t my baby, she was Down Syndrome, stamped in big red letters across her sweet little face.

And then, slowly, that stamp began to fade and her personality began to shine through. Her jolly nature. Her attitude. Her stubbornness. The way she prefers Dadad to me. All of the little things that make her Sarah started to chip away at the big things that made her Down Syndrome, until I started to forget. Even the hurt of her abandonment began to fade away the more time I spent with her, the more that ugly stamp faded.

Soon I wasn’t thinking about Down Syndrome much at all. There are moments, of course. When I meet other babies her age and see them toddling around when she’s just begun to sit, when I hear them saying “ma ma” and “da da” when she’s still firmly in nonsense babble territory, when I see them clap and wave and blow kisses, while Sarah is still more interested in waving her arms around catching invisible fireflies, I feel a pang of sadness. The stamp blooms across her rosy cheeks. And then I push it back. Wipe it away. Consider the perspective Down Syndrome has given me, the new outlook, the openness to joy and the celebrations of every little moment, no matter how insignificant they may appear to the outside world.

Sometimes now, I forget about Down Syndrome. The stamp is gone now, not even a trace remains. I don’t feel anger or pain about it anymore, so it has no reason to mar her pretty face any longer. I have stopped prefacing all of my statements with “this might be different because Sarah has Down Syndrome, but…”. She is no longer Down Syndrome. She is simply Sarah. Sarah whose eyes light up when Dadad walks in the room, who flirts with all of her nurses and steals their hearts away, who tries to yank her NG tube out so that she can stuff it in her mouth (at least, given what she does with the excess tubing, this is what I assume she wants to do with it…), who is full of sass and an effervescent personality that can light up a whole room, who sometimes sits, perched in her Boppy throne, with a look of concentration and contemplation on her face so intense that you can’t help but wonder if she knows more than we think.

I still fight the good fight, of course. I advocate hard, shout from the rooftops that Down Syndrome is OKAY, that it’s nothing to be afraid of, that it’s downright fantastic! I still work hard to dispel the myths, the ignorant misconceptions that people hold dear. Because that’s important, for Sarah and for all of her friends. But Down Syndrome no longer consumes my life. It no longer controls me. It’s just a part of my life, like Game of Thrones or brushing my teeth or any of the millions of other things that make up our little world. And it’s a pretty wonderful part, at that.

Happy Birthday Sarah!

It’s hard to believe that it’s been one year since my whole life changed, since I joined the awesome, exclusive club that is Down Syndrome parenting, but I woke up this morning to an alarm on my phone telling me that Sarah’s birthday is tomorrow, so I guess it’s true.

So much has changed. So  much has happened. I am overwhelmed by all that has happened. Overwhelmed and joyous.

I can remember a year ago yesterday feeling so unsure, so scared of what our future held. I can remember feeling like my whole life was over, like the negative could never outweigh the positive.

How wrong I was! In Down Syndrome, now,  there is no negative.  There is positive, and there is a sense of overwhelming normality. But down syndrome itself doesn’t have any negative consequences. At least, not for us.

We had a big bash planned for Sarah’s birthday but given the new circumstances, we figured that she might pull a Zsa Zsa if we tried that, so we’re having a low key time with her two favorite furry friends and her three favorite people (that would be her daddy and her grandparents. I’ll be there too, even if she doesn’t want me there).

Silly though it may be, I’ve been planning her birthday for months. How no matter how we ended up celebrating,

So how did we end up celebrating?  We went out for dinner (more for the adults’ benefit than Sarah’s, of course!). Sarah had her first taste of juice and some formula through an NG tube 😉 and wasn’t interested in even smashing her cake. Oh well–maybe next year! After dinner, we all came back to the apartment. Dec and I both wrote Sarah letters and asked our parents to do the same. So, after a nice bath and getting into one of her new, cozy pairs of pajamas, the princess settled down on her throne (okay, okay, her Bumbo seat, but it’s the same thing right?) and we read her her letters, and then she got to fall asleep in her favorite spot–our bed.

I thought I might feel sad today, because of how far behind she is, how far she has to come, how I know subconsciously that she’ll never “catch up”, but you know, I don’t. I feel proud of how far she’s come. I feel grateful to be her father. And the best part? I didn’t think of that nasty c-word all day. I think it’s the first time I haven’t since she was diagnosed.

So, how is Sarah doing at a year old?

She weighs 15 pounds 8 ounces and is 25 inches tall.  She is still right smack dab in the middle of the growth charts. She may have lost a little weight since starting chemo, but this is what she weighed when she was admitted to the hospital.

She is babbling, rolling, and exploring lots! She is just starting to sit for short periods, but she’s become very aware of her surroundings recently and has started reaching for toys and putting them in her mouth. Lots of mouthing!

-She understands a lot of signs (probably 15-20) but isn’t signing yet.

-Prior to her medical challenges, she was eating pretty much everything we eat in smaller portions. She has never had a problem with food!

-She recently started sleeping 8-9 hours a night without waking. Thank GOD.

Happy Birthday, sweet Sarah. We’re so lucky to be yours.

Fuck you, cancer.

You hear that? I’m calling you out. By name.

Fuck you, cancer. I hate you.

I hate you for taking over my daughter’s body, for making yourself a part of our lives. I hate you for introducing us to the world of hospital stays and cytotoxic chemicals and a tube in my daughter’s nose and down her throat so she can eat. I hate you for preying on the most vulnerable, on those who can’t defend themselves. I hate you for trying to destroy us.

But you won’t.

I hate you, cancer, but I do not fear you. I will not let you own us. I will not let you destroy us. And neither will Sarah. Because you can damage her body, but you will never damage her spirit. She might be less than a year old, she might weigh less than 20 pounds, she may be small and delicate-looking, but brave things come in small packages, and there’s only one thing in this world that I’m sure of: she’s going to kick your ass.

So fuck you.

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