Sarah Defies Gravity

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

Archive for the month “April, 2012”

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.

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.

Day 10/Day 3

10 days in the hospital, 3 days since we began treatment. Home may be on our horizon on Monday! We’ll then come back here and do it all again. Well, not the two week hospital stay, I hope!

Sarah is just not herself lately. Well, that’s not really true. Her diva is in full force! But you can tell that she’s not feeling so great. The nausea medication helps, but not enough, and it’s hard watching your baby vomit, scream, vomit, reach for you, repeat. Once it’s over, though, she goes right back to charming everyone she meets and snuggling. We do lots of snuggling. Of course, sometimes I’m not good enough and all she does is whine until daddy shows up…then of course all is well!

Here’s what I know, though: Our girl has the dragon’s blood, and she’s kicking this thing’s ass.

Exactly one week til the little miss’s first birthday. We probably won’t be spending it the way we planned, but we’re sure to make it special somehow.

and we’re off!

sarah was deemed healthy enough to start treatment today! she felt pretty yucky afterward, and I can’t explain the emotional aspect of the whole experience (so what else is new, Christopher?) from the parental perspective, but in a way, it was a relief that this has started, because the sooner it starts, the sooner it will be over.

who knew that I’d be saying “I’m glad they deemed my 11 month old healthy enough to inject cytotoxic chemicals into her bloodstream”. it really does change everything.

The C-Word

I know people have been checking the blog hoping for something bigger than the vague updates I’ve given on BBC, and I kept putting it off and putting it off, all morning, all afternoon. I told myself “after you phone the grandparents, then you put it on your blog” and I just kept procrastinating.

Sarah has been sick for a bit, and was admitted to the hospital for IV antibiotics. Due to the symptoms she was presenting, they opted to do a LP to rule out something more sinister.

Well, something more sinister decided it needed to work its way into our lives. It looks like we’re going to be here for awhile.

I’ve always been so thankful for Sarah’s good health. Gloated, even. What an idiot I was.

Fuck fuck fuck fuck fuck.

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