Sarah Defies Gravity

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

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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.

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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!

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.

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.

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.

Rabid

Baby-rabid, that is.

I don’t know what it is, but both Dec and myself have been talking about babies a lot lately. More specifically, having another one. Maybe it’s because Sarah’s first birthday is just around the corner–we’ve realized we can survive with a newborn and an older baby with Down Syndrome and we want to do it again.

There’s a lot we have to do before we can think about having another child. Sarah needs to be formally adopted by Dec first. We’re hoping that her BM will sign her parental rights over in late April and then we can begin that process. THEN we have to think about our move back to California. Once both of those things are done, then we can worry about giving Sarah a sibling. So for now, I guess we’re going to have to keep enjoying our little sweetheart and dreaming of someday soon having a little Jace or Dany.

I don’t know if I can handle that.

Divine Intervention

I don’t necessarily believe in God. I was a Christian for a number of years, and while I don’t necessarily harbor any negative feelings or resentment for the idea of religion itself, it’s not something I’m interested in, and I lack any kind of faith necessary for religious beliefs. Or so I say.

There’s a lot of me that wonders if Sarah’s existence was not some kind of divine intervention.  By all accounts, it wasn’t the “right” time for us to have a child, and it certainly wasn’t the “right” time to end up in the situation we ended up in. 

But it worked. And it feels so natural that I can’t help wondering if this is what was supposed to happen, if this was exactly the right time for some sort of divine intervention to step in and rock my world. 

Maybe this is the reason so many parents of children with Down Syndrome believe in God. I don’t want to be trite, I don’t want to say that Sarah is an “angel”, but it still makes me wonder if her existence was a divine message.

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