Sarah Defies Gravity

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

Archive for the month “October, 2011”

Away we go!

We got the apartment we made the offer on! We were actually really nervous about it because it’s in a good area in Brooklyn, it was exactly what we were looking for, and it’s close to Sarah’s new pediatrician. We move in on November 25th, so it seems strange and a little scary to be in our very last month (last few weeks even!) at this house.

I’m so relieved we found a good pediatrician for Sarah, and we have referrals to therapists starting when we get there. I think New York is going to be a good place for Sarah, medically, and I hope we find a home there too.

I’ll admit it, I’m a little nervous. I’ve never lived anywhere that wasn’t in the state of California. Until I was 19, I lived in the same house! And until this week, I’d never even visited anywhere out of the state of California. Which makes this all kind of overwhelming, but really exciting at the same time. I’m not sure how I’m going to feel without the League of Extraordinary Grandmas (ie my mom, Dec’s mom) standing by, but I look forward to the new adventure, the new chapter in my life, and the opportunities that I’ll have and that Sarah will have.

Not much to report on the Sarah front. She’s a baby, she’s doing baby things…geez, why didn’t anyone tell me that Down Syndrome would be so…normal? She did FANTASTIC on the plane, and…oh, I guess I can tell this story, because it was a little cute.

On the way to New York, there was a small issue where they split up the seats, so it was Dec & the baby on one side and my sister & I on the other side. The lady that Dec was sitting next to was thoroughly charmed by Sarah, and kept commenting on how she was SO cute and SO well behaved and how did we get SO lucky? To which Dec cheerfully replied “Well, we think her designer genes help.”

Silence. Glance down at Sarah (who was not in fact wearing designer jeans). Silence. Finally I felt the need to step in and clarify that he meant that our daughter has Down Syndrome, and that sometimes the Down Syndrome community refers to it as “designer genes”, and that we were lucky to have a baby with Down Syndrome.

Poor, occasionally clueless man.

still around!

Don’t worry…I haven’t abandoned this blog. We are right in the thick of our apartment hunting trip, so I’m not finding a lot of time to blog. We’re flying back to SF on Friday…and probably going to put an offer in on an apartment we saw today tomorrow…so…keep your fingers crossed…or rip mine off for abusing ellipses…either way…I’ll see you all on Friday!

What Down Syndrome can do for you

Six months ago today–half a year ago!–I became, in a mixed blessing, the father of a little girl with an extra chromosome who changed my life in a big way. If you’ve never read the story of the day Sarah was born, you totally should.

But tonight I’m not thinking about the day Sarah was born. I’m thinking about what it’s like now.

My whole world changed the day Sarah was born. Of course it did, because being a parent kind of does that. But it changed in ways that were much bigger than that, much more powerful, and wonderful, and amazing, and hard. It changed in ways that have built me up as much as they’ve broken me down.

I can remember feeling so lost for weeks after Sarah was born, and at some point, I picked myself up, dug out the package that the hospital had sent me home with, and decided not to give up hope. It’s 2011, I thought, how bad can it be?

The answer, as it turns out, is pretty damn good.

Before I was Sarah’s dad, I didn’t know too much about Down Syndrome. I had never even met someone with Down Syndrome. It wasn’t that I had a bad perspective on it–it was that I had no perspective. I didn’t know what I was supposed to expect.

After six months,here is what I’ve come to know:

1. Set your expectations as high as you want, but don’t set a time limit. Sarah will be able to do everything any other person can do–on her own schedule. Rushing and forcing things will lead to disappointment.

2. People say stupid shit. None of it is true.

3. It doesn’t take a special kind of person to raise a special kind of kid. Sure, it takes a little more patience. There’s a little more fear and uncertainty. But you don’t have to be some kind of miracle worker. You don’t have to come with credentials. All you need is patience and parenteral love.

4. Down Syndrome will change everything about your life. It will take what you knew about your life, turn it upside down, shake it a few times, rearrange its bits, and then hand you the leftovers. But it will change it in wonderful, beautiful ways and by the time you’ve reoriented yourself, you’re never going to want your old life back.

Happy six months, Sarah. Your daddies love you more than anything in the world. You are perfect, and we are so astounded that we get to call you ours.

Back to our regularly scheduled blobitude

Remember when I said that Sarah was rolling, and I was all smug and proud of myself because rolling is awesome, yo?

Yeah. About that.

Sarah started rolling on October 3rd. Sarah rolled consistently from October 3rd til October 11th.

Guess what Sarah no longer does?

If you guessed “roll”, you would be correct.

I don’t know why she stopped, but when you put her on her belly and then try to physically roll her over, she gives you this look like “wtf is wrong with you?” and cries. Don’t even get me started on what she does when you try to roll her from back to belly.

Her PT is not concerned. I am actually not concerned. I’m slightly annoyed at myself for being all gloaty about how Sarah was rolling! Rolling! Right on time and everything! Only to have Her Highness now exclusively want to sit propped up, or lay on her back, and watch the world go by.

I figure that in two years or so when she’s walking everywhere I’ll miss the days of Sarah the Blob, who stays where you put her.

Right?

Well, meh.

Can I even consider these posts part of 31 for 21? I’ve fallen so far behind.

Life has not been easy around these parts the last couple of days. That sounds dramatic. On the immediate side, everything is fine. Sarah is happy, healthy, growing, and adjusting to her new sleep schedule (in her own bed…sniff…sniff…), Dec and I are happy and healthy and preparing to move, and life is pretty good in that way.

But there are things that are going on that are just stressing me out and stretching me thin, and it’s hard to deal with these things when they all happen at once, you know, no matter how minor.

The first one is that Sarah’s mother has asked, her words, for us to “back off”. She doesn’t want any more contact with Sarah. No pictures or visits or updates. This is, obviously, draining. Perhaps not unexpected even though the arrangement we had set up when Sarah was ~3 months old was different, but still draining. I lost a friend, but more importantly, Sarah lost her mother. Even if she wasn’t going to fulfill a maternal role in her life, she was still important!

So there’s that.

There’s also the matter of my sister, which is something that I keep struggling to talk about on this blog. My sister has special needs. I don’t want to go any further than that in the interest of her privacy, so we’ll just go with that: she has special needs, both medical and developmental, that will require someone to care for her for the rest of her life. She’s fifteen years old, functionally 5-6 in most areas.

She is a wonderful human being and I adore her. I’m glad she’s my sister. But my parents are going away for three weeks (and yes, this intersects with our apartment hunting trip. Yes, we planned for this. Yes, everything is under control) and dropping her off tomorrow afternoon, and that kind of stresses me out.

Not because I don’t want to take care of her, not because I don’t love her, but because it puts things into perspective. My parents will have to take care of her until they are too old to, and then that responsibility will fall on me. Which was fine two years ago, but now I have Sarah to contend with, Sarah who will also require some degree of parenting for her entire life. She may have more independence than my sister, but how much more? Will I really be able to handle two adult children?

And then there’s the other question–who is going to look after Sarah when we’re gone? She has no adoring older brother. She won’t even have an adoring younger brother. I don’t know what the options are going to look like by the time this is something we’re going to need to worry about, but it still scares me.

That’s the thing about this journey. There’s so much more uncertainty and fear. No matter what there are bumps along the way, but there are not quite as many bumps for those with neurotypical children. It hardly seems fair, but what can you do about it? Nothing. Just like every other hard part of this, you have to pick yourself up and keep moving forward. That’s all that you can do.

31 for 21 #8: Sleep Training

For the first three months of Sarah’s life, she was a fantastic sleeper. We were waking her up every 3 hours so that she could it. It was amazing.

After 3 months, it started to go down hill. She was waking up regularly for feedings and having a hard time going back to sleep. 3 and 4 months were the worst. When she turned 5 months, it seemed like we had established, on her terms, a schedule.

But as it turns out, the baby cannot always rule the household, even when we’d like them to, and that wasn’t really working out for us, so we have attempted to sleep train her. Her new schedule goes as follows:

8:00 am: wake up

10:00-11:30: nap #1

1:30-3:00: nap #2

6:30: beginning of bedtime routine, bath, massage, stories, songs.

7:30: bedtime

She feeds twice during the night now, once at midnight and once at 3:30-4 am. She seems a lot happier and well-rested, but we have a problem. We bedshare, and when anybody goes to bed (my fiance at 10 pm and myself at midnight) she awakens. Which is fine at midnight, but right now she lays awake until then. Any suggestions?

(I guess that if sleep is the biggest challenge we have right now–which it is–we’re doing pretty good!)

31 for 21 #7: Can I cheat on this? (and Sarah’s EI today!)

I still suck at this. It’s going to be more like 15 for 21 at this rate. I think I’m going to try to go for 21 for 21 and call it even.

So, at Sarah’s EI appointment today I got referrals to doctors in NY, so I’ll be making some phone calls in the next couple of days. I’m also trying a new naturopathic/neurodevelopmental approach thanks to this wonderful group on BBC (can we talk about how much BBC has helped me in the last 4 months or so? Because it has. I love BBC), with Dec’s blessing, so that should be interesting. I guess what I’ll have to do is try to figure out a schedule of therapy and natural/neurodevelopmental approach that suits us best.

Sarah’s EI went swimmingly for other reasons (does anybody even say ‘went swimmingly’ anymore? whatever, it’s hip to be anachronistic)–they told me she is doing GREAT. We only see the EI once per month, but she is right on track to where she should be and even ahead in some respects. That makes me feel good as a parent; I’ve tried so hard to be the best parent I possibly can be for Sarah and it’s showing!

One of the most exciting things about NY is that I am hoping that Dec will be able to be at more of her appointments. He is hoping that in his new position he will have more flexibility to take the time out of his workday to attend at least some of them. It would be great to show him what’s going on with her in that respect!

I have yet to break the news to her mama. She knew we were considering it, but we haven’t told her officially yet. I know there won’t be any problems there–she has limited contact with her and it’s perfectly legal for us to take Sarah out of the state, but it’s still going to be hard to tell her that the option for her to just come over should it finally seem appropriate is going to be eliminated. I guess that is something that will have to wait and see.

31 for 21 #6: AAAAAAAHHHHHHHHHHHHHH

I said in my last post that we are making some big life decisions over here. I’m trying to keep quiet, but I am, in the immortal words of the Pointer Sisters, I’m so excited and I just can’t hide it!

As some may remember, I was going to stay here while my boyfriend moved away in December, and that we would be joining him in a few months. Well, as soon as I made that decision, I knew it was the wrong one, and after some agonizing, we finally made the decision that Sarah and I will be going with him in December! We are going apartment hunting at the end of this month and then our move date is December 1st. So begins the very stressful journey of transferring Sarah’s care. I am going to talk to her EI on Monday and get some referrals for peds and therapists in NYC. Wish me luck!

And then tonight, we had dinner with his parents, and we had agreed that we were going to tell them that I was moving with him. Dec decided that his was not nearly dramatic enough, and so, when he told his parents that we had something to tell them, he then proceeded to get down on one knee and ask me to marry him! We had talked about getting engaged when I moved down there (since it’s legal in NY…yippee!), but hadn’t said much else on the subject. I cried! In front of his parents! But I did say yes. I mean…was there any other answer?

Now I have a lot to do in the upcoming weeks. I’m pretty sure I can handle it. I hope, anyway.

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31 for 21 #5: Blogging FAIL.

I try really hard to blog every day. Really hard. But it can be tricky!

We are very busy around these parts these days! I’m not ready to blog about most of it until I’m absolutely certain what’s going on, but it’s very, very exciting!

What I do want to blog about is a feeling I’m almost ashamed to admit I have. And that is this feeling of depression and hopelessness I sometimes have, where I feel like I’m giving up hope on Sarah ever having a normal life. I hate that everything in her life is always going to be about Down Syndrome. I want people to see her as SARAH, not Sarah who has Down Syndrome. When she’s happy, why can’t she just be happy? Why does it have to be “oh, people with DS are so happy?”

I want people to see Sarah as an individual first. We do not define other people by their hair color, their eye color, the way they look, their preference on how they like their eggs cooked, or any of the other nuances of their personality, so why does it always have to be about Down Syndrome? She has Down Syndrome (and brown hair, and blue eyes, and little toes, and a pretty smile), but Down Syndrome isn’t her. It is only one part of her (wonderful, wonderful) identity, the things that make her her.

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