Sarah Defies Gravity

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

Day 28/Day 67

Today, Sarah’s temperature stayed normal all day, and I was stoked, figuring we would get to go home, maybe even as early as this afternoon.

Then the oncologist dropped the bombshell. 

“we’d really rather keep her until her next round of chemotherapy is done” 

Oh, would you. Cause I’d rather not.

I know that logistically it makes the most sense, but it kind of tortures me (and Dec…Dec is still around, and I know that this blog has been very me-centric lately because I’ve been a very me-and-Sarah centric person lately…i’ve been trying to change that, but it’s hard…i guess i should save my relationship issues for another post, but let’s just say i can understand why people end up divorcing when their children are very sick. i don’t think we’re headed that way at all, but it’s so easy to become absorbed with one issue and forget about everything else. we’re trying very hard.) to think that i can’t bring her home where she’s most comfortable and happy. 

Speaking of comfortable and happy…it’s sort of scary to me, how somewhere between the first round and this last round, Sarah has suddenly started to LOOK SICK and ACT SICK. She’s lost her hair and her pudge, there are dark circles under her eyes, and most of the time she rejects food. she’s listless most of the time, if she’s awake at all. It’s depressing, to put it mildly. It’s depressing and I want it to be over.

eternity

well, we’re on day 22 here in ye olde children’s hospital. we were supposed to go last week, but even before we were discharged sarah spiked a fever that wouldn’t go down…this seems to be her MO, and her “team” is trying to figure out if there’s some way to prevent it or if it’s just a thing that’s going to happen.

This is our longest hospital stay so far. She’s spent 61 of the 70 days since her diagnosis in the hospital…an eternity, it feels like.

My sister–who I will, someday, I hope, write a post about (right now, four and a half months after her death, i still find it hard to say her name, let alone write anything about her)–spent a lot of her life in the hospital. Probably more time in the hospital than out of it, and there was always this kind of strange feeling that I could perceive after she came home from the hospital, even as a kid. It was like she wasn’t exactly a member of our family, like she was a stranger who didn’t belong in the house with us, like we should bring her back to the hospital because at any moment they were going to come snatch her away.

And that’s how it feels right now, with Sarah…it’s almost a relief to be here in the hospital still because I know that once we bring her home, we’re going to have to bring her back here again, and then again, and again. And even after this part–the chemo part–is finally over, for six years we’ll be a slave to it, for six years we’ll be slave to blood tests and counts and an oncologist who tells us whether or not we’re going to have to sign her back over to the hospital…and then after those six years, even when she’s considered “cancer free” it could still come back at any time, still creep back into our lives at any time.

maybe that’s not the way i’m supposed to be thinking, maybe i’m supposed to be all upbeat and positive; all sunshine and rainbows, but in the eternity of day 22, of day 61, it’s pretty fucking hard not to feel like, at least this way, the cancer beast has won.

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!

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. 

Still here

sorry for no update. we’re still in the hospital. Sarah is stable and happy. the sleep deprivation is definitely catching up to me. I’ll update soon.

Sarah loves the hospital

So much that she decided we needed to come back for a little while!

She was running a low grade fever when she  woke from her nap yesterday afternoon and oncology urged us to bring her in so she could be admitted since it’s probably the start of an infection and her body can’t protect itself. She has been at her diva best–when the nurse tried to put the iv in her arm yesterday night, I was distracting her by doing fingerplay with her–itsy bitsy spider and this little piggy and so on. When she realized what the nurse was doing, she wrenched her hand away from mine, whipped her head around, and screeched  at the nurse as if she was telling her to stop this injustice at once!! Fortunately, the nurse thought it was funny.

We are hoping for a short stay and that she’ll have some more home time before she begins her second round of chemo. She barfed everywhere this morning but so far she hasn’t been showing any signs of being really sick other than the persistent fever, so we’ll see.

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.

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