Sarah Defies Gravity

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

Archive for the category “love”

One and One-Half Wandering Onlies

*with apologies to Paul Simon for jacking his song lyrics like that

It hit me today (okay, yesterday…) that I am, in fact, an only child.

Sort of.

I think it was because Sarah lost her lovey, which happened to have my sister’s voice in it. My sister died eight months ago next week. I still don’t want to write about the details, I still don’t want to talk about her. I know that when I do I will feel so much better, like all of the pain and hurt and feelings of fear and unhinged-ness will pour out and then evaporate (‘that’s poetic…that’s pathetic’) and I’ll feel a lot better. But I’m not ready to talk about it, and so I won’t. Because grief is a funny thing and it’s also a fickle mistress and I choose to give into it…or something.

But losing my sister made me, in a sense, an only child, and there’s the ever present reality that Sarah, too, will be an only child. That’s not a reality I like, that’s not the reality I would have chosen for her, but it’s the reality that exists and it’s the only one I have to work with, so, just like all of the other lemons life hands us, I have to accept her onliness.

Not that being an only child is so bad. I was a lot more settled in this decision when she was a newborn and we (the unit of Dec and I, back when it was a unit) made it together, but after we changed our minds, it was a reality that was a lot harder to swallow.

It’s a practical reality, and it’s a reality that will make things a lot easier and a lot better for both Sarah and myself because of the logical factors, but when it’s not the thing you want it’s hard not to want to throw something against the wall and yell SHIT! about it.

I wanted Sarah to have a sibling with Down Syndrome because even if they didn’t always get along, or their personalities clashed, there would always be someone there who understood her, someone who GOT all the things about having an extra chromosome that us lowly 46ers just can’t. And I wanted to have another child with Down Syndrome because Down Syndrome knocked me off my feet with how awesome it is, and because it’s all I’ve ever known. Down Syndrome parenting was something i wanted, and multiple children with Down Syndrome was also something I wanted.

Regardless of her sibling status, Sarah will have a good life. She has parents who adore her, she has family who adore her, she has people who have never even laid eyes on her who adore her. She has a spitfire personality, sparkling mischief in her eyes, and the will to fight. She has accomplished so many things in sixteen-going-on-seventeen months and she will continue to accomplish so many things for sixteen-going-on-seventeen months after that and after that and after that. She is beating cancer, she is crawling, she is saying Dada and Papa and NO, she is doing things and learning things and being things beyond my wildest imagination. She does not need a sibling to be whole.

Does it make me sad that she’ll never have a sibling? Yes, and it makes me sad that I’ll never have another baby. But in the end, I know that she’ll have a good life, and she might miss out on the sibling experience but she’ll gain so many other experiences. And I also know that this crazy journey started out with just Sarah and I and this crazy journey will end with just Sarah and I, and I’m okay with that. I’m okay with that because that’s the way it’s supposed to be, and because I can’t change the hand that fate has dealt us, I can only take it and own it, hand over my chips and accept twice as many in return. I can deal with that.

Oh I’m SORRY, Princess!

Just a quick interlude of cute…

When I’m going through a tough time, apparently my favorite activity is to lay on my bed, listen to Johnny Cash, and pretend those tears in my eyes are allergies and nothing more. And that’s where this story begins.

I guess I had started idly, without really thinking about it, singing “It Ain’t Me, Babe” to Sarah at night. It wasn’t like I would put her to bed and sing it and make a big deal out of it…it was just one of those things that started happening.

Last night she had the hardest time going to sleep. I tried E V E R Y T H I N G…a bath, a feed, new PJs, a massage, even swaddling, that’s how desperate I was. Everything I tried was met with an indignant baby squawk…so sorry for offending you, princess!

It was around 1:30 in the morning when I finally figured it out, standing outside her door while she grizzled and shouted and probably pulled all of her NG tubing out (thankfully, no)…”go away from my window, leave at your own chosen speed…” She was asleep before the song was over.

So sorry, Princess. It won’t happen again.

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.

Sarah is nine months old!

(I’m taking a little break from the Internet, but I wanted to update for Sarah’s nine-month birthday, since it’s kind of a big one.)

Happy nine months, Sarah! I can’t believe that nine months have gone by so fast, and that today, you are officially “out as long as you were in”.

You have changed our lives in your short nine months on this planet. Mine, your Daddy’s, your grandma and grandpa’s, your lola and granddad, and all of the other people who have had the pleasure to meet your sweet little roly-poly face.

At nine months old, you are still sweet and happy, but your ever-widening diva streak is, well, ever-widening. You have the look down pat, and sometimes I feel like I’m looking at a little tiny teenager.

You eat lots of different types of food! Whatever we eat, you eat a chopped-up-tiny version. You’re still working on teeth, but you have two sharp little fangs, one on each side of the top of your mouth. We like to joke that you’re part vampire. They are VERY sharp!

You still vastly prefer your bottle, though. We’re working on it.

Our tiny dainty miss weighs 13 pounds and is 22 inches tall. You wear size 3-6 months and size 0-3 months clothes, and everyone is always surprised when we tell them you’ll be one year old in April!

You still tolerate having shit put on your head, which is good, because I really like headbands.

You still rock your glasses. We opted to keep your Miraflex glasses for a little while longer because the Specs4Us still look frighteningly fragile.

You roll. You laugh. You babble. You sit unassisted for periods of up to 30 seconds. You are curious about your surroundings.

You are beautiful and we love you so much. Happy 9 months, baby girl. You’re the best thing that’s ever been mine.

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.

 


 

 

 

 

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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