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.

Sarah at (almost) 15 months

Sarah will be 15 months old on Friday! We’ve officially been out of the hospital since this morning and we start the maintenance phase (which includes outpatient chemotherapy, regular blood checks, and anything else that needs done) of her chemotherapy next week. Fun…but at least she’s home!

Due to her hospitalization (having spent 92 of the past 101 days in the hospital) and the things that accompany her illness, her development has basically stalled, and even started to regress in some areas, but we’ve seen surprising progress in other areas.

Physically she’s come to almost a complete stop from where she was pre-hospital. She’s no longer rolling or “scooting” like I reported in her first birthday post–I think because these skills went into disuse she has just forgotten them. We’re going to resume some PT (nothing serious, just low-key, 2x/week) in hopes of getting those skills back. She does sit up like a pro though! She’s reaching for and grabbing objects, and she likes to “study” them up close and go “oooooh!”

She recognizes about 25-30 signs. She signs consistently “mom” and “dad” (I’m mom, Dec is dad…thanks a lot you little shit!), “happy” and “cry”. she periodically signs “please” and “all done”. She’s getting very good at copying and probably copies about 90% of the time when we sign to her. She also responds by very enthusiastically nodding her head or very emphatically shaking it, which is funny.

She DOES speak a tiny tiny bit now! Her first word was “dad” and she will say it periodically if frantically signing “dad” does not magically manifest Dec in front of her. Her ST (one of the only ones we didn’t cut during her time in the hospital) says that she babbles very purposefully and that her formation of sounds is great. She’s a mimic in terms of sounds as well as signs and if you babble at her she’ll repeat it back. We’re thinking more words soon!

She came home on her NG tube. She’s still not particularly interested in eating by mouth and turns her head away or signs “cry” 😦 She has lost 4 pounds since starting treatment and is currently clocking in at 12 pounds 6 oz. We’re hoping that as her treatment dosages are lowered she’s showing more interest in eating and less interest in throwing up and we’ll see some weight gain. She looks like she’s wasting away and it’s so sad.

She’s completely bald and it’s super cute. I put a lot of horrifically ugly giant bow headbands on her head, because I can. Dec thinks that she needs these.

Despite what she HAS lost–weight, skills, her ability or desire to stomach solid food–she has gained some skills and some new friends on the oncology ward, and most importantly, she has not LOST her will to fight, her spunky personality, or the love she has for us. She’s the biggest joy of our life, and we’re so happy that she’s fighting and getting better and home with us. We can’t wait to see how she grows in the months to come!

Reflections (or a lack thereof) on Down Syndrome after one year

I hardly think about Down Syndrome anymore.

The reason for this is twofold. The first is that there are bigger things on Sarah’s horizon right now, and those are things that are forefront in our minds, every minute of every day. It’s impossible not to think about those bigger things, because they mean everything. Being a kid with cancer is a lot more significant than being a kid with Down Syndrome right now, and of course my focus is on getting rid of the cancer, on making it go away, which is not something I think about Down Syndrome, even if I could take it away, I would keep it around.

But the other part of this reason is just that Down Syndrome is no longer significant. It’s no longer world changing or life altering, it just…is. It was so momentous at first, so big and scary, and for awhile when Sarah was little I was obsessed with Down Syndrome. When I looked into her eyes, I was looking Down Syndrome in the face. She wasn’t Sarah, she wasn’t my baby, she was Down Syndrome, stamped in big red letters across her sweet little face.

And then, slowly, that stamp began to fade and her personality began to shine through. Her jolly nature. Her attitude. Her stubbornness. The way she prefers Dadad to me. All of the little things that make her Sarah started to chip away at the big things that made her Down Syndrome, until I started to forget. Even the hurt of her abandonment began to fade away the more time I spent with her, the more that ugly stamp faded.

Soon I wasn’t thinking about Down Syndrome much at all. There are moments, of course. When I meet other babies her age and see them toddling around when she’s just begun to sit, when I hear them saying “ma ma” and “da da” when she’s still firmly in nonsense babble territory, when I see them clap and wave and blow kisses, while Sarah is still more interested in waving her arms around catching invisible fireflies, I feel a pang of sadness. The stamp blooms across her rosy cheeks. And then I push it back. Wipe it away. Consider the perspective Down Syndrome has given me, the new outlook, the openness to joy and the celebrations of every little moment, no matter how insignificant they may appear to the outside world.

Sometimes now, I forget about Down Syndrome. The stamp is gone now, not even a trace remains. I don’t feel anger or pain about it anymore, so it has no reason to mar her pretty face any longer. I have stopped prefacing all of my statements with “this might be different because Sarah has Down Syndrome, but…”. She is no longer Down Syndrome. She is simply Sarah. Sarah whose eyes light up when Dadad walks in the room, who flirts with all of her nurses and steals their hearts away, who tries to yank her NG tube out so that she can stuff it in her mouth (at least, given what she does with the excess tubing, this is what I assume she wants to do with it…), who is full of sass and an effervescent personality that can light up a whole room, who sometimes sits, perched in her Boppy throne, with a look of concentration and contemplation on her face so intense that you can’t help but wonder if she knows more than we think.

I still fight the good fight, of course. I advocate hard, shout from the rooftops that Down Syndrome is OKAY, that it’s nothing to be afraid of, that it’s downright fantastic! I still work hard to dispel the myths, the ignorant misconceptions that people hold dear. Because that’s important, for Sarah and for all of her friends. But Down Syndrome no longer consumes my life. It no longer controls me. It’s just a part of my life, like Game of Thrones or brushing my teeth or any of the millions of other things that make up our little world. And it’s a pretty wonderful part, at that.

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.