Sarah Defies Gravity

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

Archive for the category “Dec”

I would have sang out your name in those old high school halls…you tell that to Gail, if she calls.

I think it’s finally beginning to hit me, almost 2 months later, that I don’t have Dec anymore. Probably because for the first month and a half he was always here if I needed him, right there in Queens prepared to take our daughter whenever I needed and fulfill his once-weekly obligation to see her on the weekend, and take her to her appointments once a week, and now he’s not here anymore. He’s 2500 miles away living his life and I’m 2500 miles away trying to pick up the pieces of ours.

And it’s hard, you know. It’s hard. I didn’t expect it to be so hard and I don’t know how to cope with it. With appointments upon appointments and work and bills and the always-present possibility that Sarah could, at any point, relapse. With the ins and outs and intricacies of parenthood, even with Down Syndrome and cancer removed from the equation.

I want him here with me. I want him here with us. We were supposed to be a family. I’ll make it, somehow, I know I will. I’ll make it and Sarah will make it, but the idea of someday “making it” doesn’t exactly make up for the fact that I’m drowning under a pile of responsibilities and uncertainties and things that are too hard for me to manage in the now. I most certainly can see the forest for the trees, the maze for the corn…but I can’t seem to find my way out of it.

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This Road I’m On

Let’s face it…2012 sucked.

I thought 2011 sucked, and in some ways, 2011 did suck pretty hard. But for the most part, 2011 was full of joy, full of wonder, full of hope.

2012 was consistently, entirely, completely full of suck and fail, and by the time we were 8 months in, I was beaten, battered, and completely destroyed.

But you know? 2013 is going to be much, much better. Thanks to some wonderful people who picked me up when I was fallen down and glued me back together when I was completely broken, 2013 is going to be like a better version of 2011, full of hope and promise and joy and life.

I’m going to be honest, because I pride myself in being honest on this blog–in part because part of the mission of having this blog is to present an honest, informative, realistic portrait of Down Syndrome parenting to the world at large (as opposed to a fluffy, sunshine and rainbows portrait of Down Syndrome), and in part because it actually makes me feel a hell of a lot better–for the first time since Sarah was a newborn, last month made me really hate the fact that she has Down Syndrome. Because I did a bad thing. I began to blame Down Syndrome for all of the things that happened. If Sarah didn’t have Down Syndrome then she wouldn’t have gotten cancer (not true). If Sarah didn’t have Down Syndrome and cancer then maybe Dec wouldn’t have gotten so stressed out and he wouldn’t have left us (okay, maybe true…but aren’t I better off without him if that’s the case? YES). If Sarah didn’t have Down Syndrome I could have a second child and go to college and all of the millions of other things I desperately wanted to do that I couldn’t–or thought I couldn’t–because Sarah had Down Syndrome. I was beginning to become bitter and resentful about Down Syndrome and how it was affecting my life.

There’s still a part of me that resents Down Syndrome for what it did to my life, but things are working out. I’m not trapped in a city I hate, alone and scared…I’m moving back home at the end of the month. I’m not going to be stuck in a dead end job with the end goal of strictly supporting Sarah. I’m going to university in January of 2013 to study science and, eventually, genetics.

And Sarah? Sarah is doing wonderfully. Sarah just started crawling…and saying “papa”. The word is teeming with possibilities for both Sarah and I, and I can’t wait to see where the road we’re on leads us.

Are these the droids you were looking for?

Yes, Dec and I broke up. Maybe not entirely. When he told me he wanted to leave I gave him a “grace period” of six weeks. He can take those six weeks to work on himself or give this other guy a second chance and if he decides in those 6 weeks that he was missing out on us, then he can come back with no questions asked, with the caveat that therapy happens. I doubt he’ll be back in six weeks, but I can’t say that for certain. No, I don’t plan to withhold Sarah from him. He has legal guardianship and I need to talk to an atty. about what that means for custody but Sarah is his child and he is her father and I, unlike some people in this equation, am not a flighty asshole.

R-E-M-I-S-S-I-O-N, find out what it means to me

Yes, it’s true…after three rounds of chemo, Sarah’s levels are good enough that she is officially considered “in remission”! We are so excited. Everything is looking so beautiful for us right now–Sarah is in remission, things with Dec and I are better than ever, and all of the negative emotions that were consuming me are starting to go away.

This isn’t the end of the road, of course, just the next leg of the journey. Sarah will now undergo 24 months of maintenance chemotherapy. This will be conducted outpatient and will be a lot easier on us than the treatment has been, but she’s still “sick”. We’re remaining positive about the outcome of maintenance chemo and not worrying yet about relapse or any other nasties. We’re going to enjoy this rather more pleasant leg of the journey and having our sweet, brave fighter baby at home with us!

I’m planning on doing a little post about Sarah’s development and how it was affected by the hospitalization, treatment, etc a little later on, but i just had to blog the good news!

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.

 

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.

 


 

 

 

 

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.

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.

31 for 21 #2: Sarah and Dec

When I first met my boyfriend, he told me he didn’t want to have children.

He told me this before we were together–I can’t remember how it came up in conversation. What I do remember, however, is that I asked him why.

I always thought he would be a great father. He is bright, effervescent, full of energy and love and joy, and he loves children. He’s that person bending down to a baby in a stroller’s level, cooing at them, calming them instantly.

“Exactly,” he told me. “I love children, and I intend to keep it that way.”

We started dating when Sarah’s mom was five months pregnant. He came into it knowing that there would be, at least half the time, a baby in his life. He was okay with that.

One of the things that selfishly scared me most when Sarah was diagnosed was the idea that I was going to lose Dec. My world had already been put in a tailspin, the last thing I wanted was to have to deal with losing the first person I had ever really loved (now THAT is a story for another time!) on top of it.

But he surprised me. He surprised me by accepting that baby into his life as wholly and completely as if he had wanted her as much as I had. His acceptance of her–a child he hadn’t even really signed up for–was a huge turning point in my own ability to accept her.

After five months, I am continually astounded by the bond that they have, the way he has embraced her and embraced Down Syndrome, raising awareness, advocating for her, and taking a stand to be the voice for those who may not have one. He, like Sarah, has taught me a lot about being a better person, and I’m always wondering how I–a flawed individual, selfish and stubborn, obstinate, unwilling to change–could end up with these people, these sweet, unquestioningly loving people as part of my world. I don’t deserve them, that’s for sure.

Sarah thinks Dec hung the moon. Dec thinks Sarah hung the moon. From the time he gets home from work until the time we put her to bed, it is rare for the two of them to leave each other’s company. If she is frightened or upset, she seeks him out. They are truly kindred spirits, bound together in some incredible way.

Sometimes I think that they were meant for each other. That Sarah was meant to be born with Down Syndrome not to screw everything up but to draw Dec and I closer together, to give him–and me–an awakening of sorts.

He told me the other day that the only way he would ever consider having a second child was if they, too, could be born with Down Syndrome.

I can’t say what the future holds, but I think that would be just perfect.

So Glad You Are a Child Of Mine

Although you see the world different than me

Sometimes I can touch upon the wonders that you see

In all the new colors and pictures you’ve designed

Oh yes, sweet darling, so glad you are a child of mine

Child of mine, child of mine, oh yes sweet darling, so glad you are a child of mine

You don’t need direction, you know which way to go

And I don’t wanna hold you back, I just wanna watch you grow

You’re the one who taught me you don’t have to look behind

Oh yes, sweet darling, so glad you are a child of mine

Child of mine, child of mine, oh yes sweet darling, so glad you are a child of mine

Nobody’s gonna kill your dreams or tell you how to live your life

There’ll always be people who make it hard for awhile but you’ll change their heads when they see you smile

The times you were born in may not have been the best, but you can make the times to come better than the rest

I know you will be honest if you can’t always be kind

oh yes, sweet darling, so glad you are a child of mine

Child of mine, child of mine, oh yes sweet darling, so glad you are a child of mine.

– Carole King, “Child of Mine”

My mother used to sing that song to me when I was very little, and I always assumed I would sing it to my children, too, because it’s a sweet sentiment. I just never realized how much of it would apply after Sarah was born.

Sometimes it still blows me away, five months in, how much having a child with special needs changes your life, your perspective, everything. Not in bad ways. For the most part, anyway. Just changes things. Knocks you on your ass, so to speak. There’s so much that I took for granted and never even thought about before Sarah was born, and then she came along and changed everything, including the way I hear this song.

To me, it fits so perfectly to celebrate Sarah’s extra chromosome, especially “although you see the world different than me”, “there’ll always be people who make it hard for awhile”, and “I don’t wanna hold you back, I just want to watch you grow” and, to be honest, when I asked my mother to send me a copy of the song so I could learn the words, I had a moment, and for once it wasn’t a wallowing-in-self-pity, I-wish-my-child-didn’t-have-Down-Syndrome!!!!!!!! moment. It was a moment of, ironically, “I’m so glad my child has Down Syndrome”. A rush of love for her not only in spite of that little bit of wayward genetic material, but also because of it.

It might sound strange, but I’m glad Sarah has Down Syndrome. I’m glad that I was given the opportunity to be the parent of such a remarkable little human being. I’m sometimes frustrated that I can’t talk to parents of “normal” kids and compare my kid with theirs, but mostly, right now, I’m in a good place. I am so glad, as the song says, that she is a child of mine.

My boyfriend told me today that he would only consider having a second child if he could somehow guarantee that they would have Down Syndrome too. Considering that I was the one who wanted children and he didn’t, this is a big deal!

I need to do a post soon about his relationship with Sarah. That has been one of my favorite things about this process, and I think that another one of the millions of reasons why I’m glad Sarah and her extra chromosome are part of my world is because of her profound relationship with Dec, and because of how much she changed, for the better, my relationship with Dec.

(of course, it also serves to hurt like hell that he’s going away in only two short months. December seems so fucking close and May seems so far away. That, too, is another post for another time.)

 

 


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