Sarah Defies Gravity

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

Archive for the month “May, 2012”

Here we go again

Sarah was re-admitted to the hospital for her 2nd round of treatment last Monday. she’d just been discharged from the hospital for a week when we were re-admitted, so she was pretty pissed off to be back.

This second go around is harder, I think because it’s harder to be hopeful and optimistic when you just want to get it over and done with. Her numbers are looking very good this time, and she’s really responding well to treatment, but I just want it to be over now. I wish we could go back to before she was diagnosed and make it all magically better. 

I’ve been falling behind on blogging, but I’m trying to get back into it. Not much to write about!

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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.

Home sweet Home!

We are home as of this morning! we have to come back next week, but we’re HOME for now and that’s the sweetest thing of all. Sarah is having a nice nap in her own crib and loving every second of it.

I was going to be discharged from the hospital once. And then I took an arrow to the knee.

(sorry, I couldn’t resist the overused meme/Skyrim reference there….nobody took an arrow to the knee!)

So, Sarah’s journey to be discharged this time around seems like it’s neverending. We may be at the light at the end of the tunnel, but we’re also going to have to come back in two weeks or less for treatment, so I don’t know if you can count that as the light at the end of the tunnel or not!

The most recent hurdle has been dehydration. Before that, it was that stubborn infection! She kept spiking a fever even after her antibiotics. I’m just keeping my fingers crossed she doesn’t get c-diff. But dehydration is what we’re looking at now, so we’re stuck here for at least a couple more days while she gets some IV fluids. Our favorite.

For once I’m glad for Sarah’s lack of mobility–she’s still bored here, but at least she’s not a toddler who is accustomed to running around. We haven’t had to modify her activities too much, even though I think she misses having floor time, and of course, going out and seeing all the sights and sounds.

But this is not forever.

Pain

We are on day 8 here at the hospital. Sarah is doing great, but her immune system is fragile and she is really better off here in isolation than she would be at home. She will probably end up remaining here right through to the end of her second chemo. 

The big thing right now is that she’s in pain. Bone pain is fairly common in children with leukemia, but it’s never easy to see your baby in pain. She cries a lot. She’s never been afraid to use her voice, but it’s such a sad, pitiful cry. It’s “help me, daddy” when I can’t help her at all, and though I’m not opposed to painkillers, it’s still hard to see your one year old doped up so that she doesn’t feel the pain anymore. She shouldn’t be in pain to begin with. 

Comparitively, though, everything is very good. Her treatments are working as they should. She’s responding very well to them. This bump in the road (readmittance) is normal. Her down syndrome, combined with modern medicine and the power of positive thinking, is working to our advantage. I hate to complain and scream and cry when things are good, comparatively. She is not dying. She is still fighting. 

But it’s still not easy. It never will be. I’m just living every day, moving forward, to the time when this will be a very distant memory. I’m scared to lose her. That’s not even a question. My sister died four months ago, and that’s still fresh in my mind. But I know that the odds are working in our favor. Iknow that Sarah is going to be fine. I can’t let the fear consume me when there’s so much to be positive about. 

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