Sarah Defies Gravity

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

Archive for the month “November, 2011”

We’re here!

We arrived in New York on Friday. The flight was uneventful, we found out that we would be in our apartment on Monday, I cancelled Sarah’s EI appointment and rescheduled it for next week, but Sarah had a hard time sleeping that night (the time change, her ears probably hurt, the hotel room…you know, stuff.) and I ended up staying up with her literally all night, until Dec finally woke up, took pity on me, and let me sleep. Saturday we took it easy, figured out what kind of transit we needed to get to basic places (grocery store, Sarah’s therapy, Dec’s work, Sarah’s pediatrician) from the apartment, and then went out for dinner. I spent all of late Saturday night/early Sunday morning/mid Sunday morning throwing up. I suspect food poisoning–Dec ate something different than I did at the restaurant and he hasn’t shown any symptoms yet. I was functional enough on Monday to parent Sarah and sort of help with the moving proceedings, but we basically set up the couch, the bed, and that was it. Everything else we own is still in boxes. I’m just glad we decided to hire a company, because there’s no way I would have been able to participate in the actual moving.

We won’t have Internet or cable until next week, but we’re using our phones for internet synced to our computers. Dec starts work on Thursday, and hopefully by the end of the week I’ll have more of the apartment unpacked and we’ll be getting used to life here. Right now it doesn’t really feel like we live here, so hopefully that feeling will start to go away as life gets back to normal!

Advertisements

In New York!

We made it! Watch this space for the long entry coming soon, I am too tired to move.

3 Days To Go!

Just 3 more days until our big move! I’ve been busy as heck trying to get everything sorted out, and now we’re ready–everything is packed up, and we’re moving to the hotel here tomorrow morning, and then flying out Friday morning at 8 am!

I’m feeling…okay about it. Did you know that until we went apartment hunting, I’d never been out of the state of California? Sad, but true, so there are some mixed feelings there.

Sarah’s new EI phoned today and asked if we’d be able to start the following Monday! Uhhh…okay. We won’t even be in our APARTMENT on Monday. But I wasn’t going to say no to that, especially because Sarah will be going on 2 weeks without services at that point. So at least some things will be consistent!

Thankful

By Thanksgiving, I won’t actually be able to blog (as we’ll be moving the next day), so I wanted to make the post about all the things I’m thankful for this year today instead. So…without further ado…here it is.

1. Dec

Dec is the longest long shot I’m glad I decided was worth it, because was he ever. The man I fell hopelessly in love with just about a year ago, who said he was not only straight but didn’t want children, has turned out to be the best future husband and father I could have ever asked to share this journey with. I am thankful for his patience, his love of Sarah and his love of me. I am thankful that he is always a good listener, and that he always wants to help–get up with Sarah in the night, take the dogs out, or just do that extra something around the house. He amazes me every day and I’m thankful I get to share my life with him.

2. My mom

Yes…really. I never knew  how much I could appreciate my mother until Sarah came along, and now I wonder how I could have appreciated her so little! She is a special needs mom (and grandma!) extraordinaire, a constant advocate, brave and funny and wise. She talks me down when I’m about to lose sight of the horizon and provides me with a constant source of new news, information, therapies, and medical advancements in the Down Syndrome world. I’m thankful that I have such a good mom, but I’m more thankful that Sarah has such a good grandma, who cares so much about her.

3. my Down Syndrome family

When I first started posting on the Babycenter Down Syndrome board, I was bewildered and completely overwhelmed by what Down Syndrome meant for Sarah, for me, and for the rest of our lives. I’m thankful that the hospital equipped me with the information about this fantastic, knowledgeable, intelligent pack of humans. Because I was introduced to them, I, too, have become a more knowledgeable human, and an advocate for my child and other children like her. I don’t know what I would have done without this group, I really don’t. I’m thankful for them beyond what words can express.

4. Sarah, of course.

What, did you think I forgot her? Of course not. Save the best for last, don’t you know?

I don’t even know what to say about Sarah. I’m so thankful that I was chosen to be Sarah’s father. That she was born with an extra chromosome. That everything fell apart, so I could put it back together.

She may only be six months old, but Sarah is already changing lives, making people better people, both on the Internet and in real life. I can’t tell you how many people have told me that they were profoundly impacted by Sarah’s story, how many people have stopped us in the street to talk about Down Syndrome, how many people we have stopped to talk to because of Down Syndrome, and because of Sarah. Her sweet smile, her warmth…everything about her is perfect, and I’m so thankful that I get to introduce this kind of perfection to the rest of the world. Of course, it’s a tall order, being the parent of something this perfect, but I’m so thankful that I get the opportunity. I just hope I do right by her, and don’t screw it up, so that someday, maybe, she might be thankful for her parents just like her parents are thankful for her.

Other things I am tangentially thankful for that do not in any way involve Down Syndrome:

Diet Coke,  the radio station channels on TV, the San Francisco Public Library, my dogs, Starbucks, Apple (for giving me my computer, iPad, phone…you know…), salted caramel biscotti, sunshine, and whoever invented Annie’s Organic macaroni and cheese.

 

Blossoming

That’s what Sarah has been doing the last couple of days. Blossoming. And that accounts for my radio silence these past couple of days, too. It has been hard, sometimes, to enjoy the simple joys of parenthood because I was absorbed in the bigger things; namely, Sarah’s therapies and the triumphs we were experiencing there. I felt like I was missing out on a huge part of Sarah’s babyhood because I was so busy focusing on the big things.

But for awhile, she wasn’t making much progress beyond what she was doing in therapy (which of course carried over into our “personal life”). She was kind of a blob, really.

She’s been rolling again. And smiling. And chatting. She’s loving sitting in her Bumbo and exploring the world around her. We started solids on Monday, to…mostly disastrous results, but we tried oatmeal and apple sauce tonight and she loved it and didn’t projectile vomit! She’s sweet and interactive, and really starting to be more like a baby and less like a newborn…finally! She laughs all the time now and it’s the cutest thing, she has this husky little old man voice.

And more and more, I’m loving being Sarah’s father. I’m loving getting to experience this amazing tiny person. This is what parenthood should be all about…and I’m so happy to be living it.

Guest post, sort of: interview with Dec!

Every time I try to write a post about Dec and Sarah, I feel like it would be better in his own words. But every time I bring that up, this happens:

Me: Dec, would you consider writing a blog post about Sarah?

Dec: You have a blog?

Me: …I’ve showed you my blog.

Dec: Oh, I thought that was something different. Um, I don’t really know how to write a blog post even though I’d love to.

So I decided it would be easier on everyone involved if I asked the questions, he answered them, and I posted it on the blog. Here we go!

What is your relationship with Sarah like? Do you feel like her dad?

Feel like? Um. I don’t know. Do you? Of course I do, I mean, I don’t wake up and go “oh there’s Christopher and there’s Christopher’s kid.” yeah, I feel like her dad. She’s my baby girl. What kind of question is that?

Sorry! I’m trying to ask things people wonder about. Or that I think they do, anyway.

Well, I don’t know. Maybe it’s different for you, but she’s my baby girl. I don’t even think about the fact that she has a mom anymore. She’s mine.

How did you first feel when I told you she had Down Syndrome?

I remember when you phoned me, you sounded like a scared little kid. But I know [a friend who has DS and is in her 20s] so I wasn’t scared like you were. I was nervous when you told me her mom didn’t want her, because I didn’t know what that meant for us.

But you embraced her right away.

Well yeah. As soon as I looked at her, I forgot that I didn’t want to have kids of my own.

So we didn’t feel so different when we first met her.

Does that really surprise you?

No. What was your first impression of her?

That she was beautiful and so, so perfect. If you hadn’t have told me, I wouldn’t have known she had down syndrome, my first thought was ‘she looks just like you’. And I wasn’t worried about her future or anything, I was just happy that she got to be part of my life. It was a really incredible experience.

What are things like now? Anything harder than you expected? Easier?

I think you have a harder time emotionally than I do. I never grieved. Maybe because I didn’t have any expectations first, so I got lucky. But I’ve always just thought Sarah was the best thing that ever happened to me. The therapies are kind of more intense than i thought they would be and that bugs me because she’s just a baby. But all of that–the first little while after she was born–seems really long ago now. This is the way we’ve always been.

Can you tell me about having more kids in the future?

I think you know this! But, uh. I guess when Sarah was a couple of months old, I really realized that I wanted more kids, but I didn’t want more kids that were…

Neurotypical?

I was gonna say normal but Sarah is normal, so yeah. Neurotypical. I wanted more kids with Down Syndrome, because Sarah made such a huge positive impact, and I don’t have any interest in the experience of having a neurotypical kid. So I told you I wanted to adopt a baby with Down Syndrome in a year or two.

You don’t have any interest in raising neurotypical kids?

Nah. My only basis of reference is Sarah, and she’s perfect. Why mess with a good thing?

Anything else you’d like to add?

I guess for parents who are expecting kids with down syndrome or just had a kid with down syndrome. don’t be afraid. It’s not a curse. It’s going to be the best thing that ever happened to you and you’ll never, ever look back.

 

He’s a keeper, that’s for damn sure.

 


 

 

 

 

Stuff…I’m going to miss you.

Moving from a spacious house into a less-spacious apartment means that we’re having to put a lot of our stuff into storage, so yesterday, we rented a UHaul and put everything we won’t need into storage. Our house is oddly empty now, and it’s weird, because I barely noticed that stuff while it was here, and now that it’s gone, it’s glaring at me. But you know…once we’re moved into the new place and adjusted, I probably won’t even notice that the stuff is gone, because everything is right where it should be in that new place.

But I thought that presented an interesting parallel for my mindset lately. I’ve been kind of wallowing in (a large, deep pool) of self-pity the last few days. I’m tired, stressed out, and even though we’ve found GREAT care providers for Sarah, it’s still a giant headache getting her care transferred and making sure that she doesn’t go too long without therapy (although in NY, we’ll be getting in-home therapy…cool!), and slowly starting to dip my toes into exploring the possibilities of working (on a logistic level, it’s just not going to work now. Maybe when Sarah is in school and getting some of her services through the school), and I find myself growing resentful.

I hate that DS makes everything harder, and I hate myself for thinking that it makes everything harder. I should have enough perspective to think DS is a piece of cake. At least I haven’t had to spend any time with her in the PICU. At least she will have a meaningful, independent life. At least…blah blah blah. It still sucks, let’s be honest.

Because it’s just like the stuff that I put into storage. I expected something different. I got used to that idea, and then, when I was good and used to that idea–when I forgot that stuff was there–I put it in storage, and I got something completely different. And right now, it’s pissing me off, because I’m still thinking about the stuff that used to be there.

But one day, when I’ve been living in this apartment for a little while, I won’t even remember that stuff. I’ll forget it ever was here, because I’ll be enjoying this stuff so much.

I’m just not quite there yet, and that’s okay. Right?

Post Navigation