Christmas pics

Christmas trip

Dear Scarlett,
What a Christmas we had. We were in Chicago with Nonnie and Pops and basically my entire side of the family. Santa had to bring you a suitcase this year, so you could haul all your loot back to San Francisco. You got books, clothes, stuffed animals, a sit and spin, art supplies, temporary tattoos, puzzles, and cowboy boots. I got The Heart is a Lonely Hunter from my Secret Santa (Shishie) and a day at the spa from Nonnie. It was a fantastic holiday, despite the fact that you were still recovering from an ear infection. On the last day of your antibiotic, you suddenly sprouted hives all over your body. On Day 2 they traveled to your face and you looked like a (very cute) little puffball. We took you to the doctor three times in one week, and you seem to be in better shape now.

But those ears! They just keep getting infected, and we are now following Dr. Becker's suggestion to eliminate gluten and dairy from your diet. This is apparently the new thinking in pediatrics, and was seconded by the doctor we saw last week. I've been off of gluten for more than 7 months after testing positive for an allergy, so I am actually convinced that this will mostly be easy, even though you are a dairy queen of the highest order. The real issue will come when we go out for a meal and try to order something that is not grilled cheese or macaroni and cheese. Or a spoon and cheese.

Also, we are not allowed to call it a diet and are not supposed to mention to you that you are eating different food. Tonight you had [gluten-free] chicken tenders and broccoli for dinner, and [almond milk] ice cream for dessert. You were quite pleased, finishing everything on your plate. We'll try this diet for a couple of weeks and see what happens. Dad is skeptical, since we're not actually sure what should happen, and therefore what success might look like. But we're willing to try, because I think the next conversation is going to be about putting tubes in your ears.

But back to Christmas. I have to admit that I barely saw you. When Nonnie and Pops are around, you don't really let me or Dad put you to bed, get up with you in the morning, dress you, or look directly at you. You are Nonnie's girl. On our last morning, I came into your room to find the two of you fast asleep in each other's arms. And I am not complaining about sleeping those extra hours every day. That really made it feel like a vacation. We got to see most of our Oak Park friends, and you especially enjoyed a dinner out with Sigrid, and a play date at Amanda and Dan's house.

Today you told me, "Amanda's friend did not hug you."

"Who didn't hug you?" I asked.

"NO," you said. "YOU. Amanda's friend did not hug YOU."

"Who is Amanda's friend who didn't hug me?"

"Noah."

Ah yes, Amanda's good friend Noah, also known as her two-year-old son. We exchanged a high five at the end of the morning. The things you notice are fascinating to me. I actually feel like I got lots of hugs and love on our trip. We had a delicious Christmas Eve dinner at Aunt Carolyn's house, with something like 40 people. You were a big hit in your sparkly blue dress, and when you left early with Pops, you blew everyone kisses and began belting out a song on your way out. Later you told me that you had a tantrum in the car and cried and cried. You are always telling on yourself.

So we're back home in San Francisco, and the exciting news is that Nonnie and Pops will be moving here for two months to take care of Baby Jack while Shishie goes back to work. They have their own apartment in a great neighborhood and we will get to see them all the time. I just hope I get to see you, too.

Love,
Mom

Walk with Me, Suzy Lee

Dear Scarlett,
In August, Dad and I went to the Outsidelands festival in Golden Gate Park. It was a three-day concert, with tons of different bands, and it was, in true summer San Francisco fashion, cold. But we went every single day, leaving you with Nonnie, Pops, Shishie, Uncle Rob, Uncle Mike, and the very new Baby Jack. My legs were starting to get weaker (and they're never very good when it's cold), so Dad helped me walk from stage to stage. Some of them felt like they were miles apart, but we saw every act we had planned to see. Amadou and Mariam were one of my favorites, along with Sigur Ros, Of Monsters and Men, and Beck. On the main stage on Sunday, we saw Jack White sing We're Going To Be Friends, and right there, in the middle of that freezing park stuffed with all of those other people, I started to cry. The song just made me think of you, starting school that month and growing up.

I'm not one of those people who wishes that babies didn't grow. Nonnie says that sometimes to you and Baby Jack, that you should please slow down and stop growing so fast. And I know she only means it in the best of ways, she just loves you so much the way you are now. But I love to see you grow, love to see the new things you can suddenly do, and the changing patterns of your words and skills. I am terribly excited to have a real conversation with Jack that doesn't involve me reading to him from the nearest magazine while he tries to nurse on my shoulder (although I love that, too.)

I think what made me cry was the feeling that you are going to start having experiences that I can't fully control, that I'm not even present for. That you will make new friends and that this will be wonderful, but will also leave you vulnerable in a way that makes me kind of uncomfortable. I never want to see you hurt or sad, even though I know it's ridiculous to imagine that you won't be, or that you can't handle it. I once read that parenting is not for the faint of heart, that if you don't want to see your children upset, you are in the wrong business. And of course, meeting new people and becoming your own person is a good thing.

In the weeks leading up to you starting preschool, I was mostly just excited. And now that I see how much you love it, it's just another thing in our life that makes me happy. You are fine being away from me and Dad, completely confident and secure in the fact that I will always be there to come get you at the end of the day. In fact, that's exactly what you say: "Mommy always comes back." That's what I said to you the very first time I left you at Recess with a babysitter.

And to be honest, I think this was another reason that I cried. Because time is passing, and with it, certain things are becoming less certain. My illness is a part of our everyday lives, but I don't think you're hyper aware of it yet. I guess part of me does want to hold on tight to what we have now. But another, bigger part knows that we have so much more to look forward to. You're going to continue to amaze me with your feistiness and your new abilities. And I promise you that I will do everything I can to show you what it means to be strong.

Last week, we were in the kitchen making breakfast. You were cracking eggs, I was trying to figure out what to do with a pan full of bacon grease, and I heard you start to sing. "Books and pens...Suzy Lee...by the tree. I can tell that we are gonna be friends." I asked how you knew that song, and you said Daddy taught it to you. I looked over at you, and to my surprise, I just started laughing.

Love,
Mom

Brave Girl

Fabulousness

Dear Scarlett,
Your new favorite thing to do is dress up. This includes putting on your Halloween costumes in November, trying on every one of my shirts, wearing your cousin Danielle's bra, and dancing around Gap Kids with ill-fitting sweater dresses sausaged over your own clothes. Most mornings, you change your clothes no less than 5 times, and you are a big fan of polka dots, which you refer to as "plums." But by far, the best new article of clothing in your collection is a zebra coat from Nonnie.

Your ability to converse with us completely blows me away. You've always been verbal, but now you're telling lengthy stories and chatting like a little adult. You still think adding the word "poop" to any sentence is hilarious. Here is a brief conversation from this morning:

You: Mommy, there is cat vomit--watch out!

Me: Where? I don't see it.

You: It's in the living room. It is round and poopy. Come see it.

[We go to the living room. There is nothing there.]

You: Oh, maybe it is behind the bench. Let's check it out.

[It is not behind the bench. You made the whole thing up. I tickled you and you laughed like crazy.]

Last week, I took you to vote on Election Day. It was right around naptime and, after posing for a few pictures with my secret ballot folder, you threw a sign at the nice man in charge and then pulled all of the voter pamphlets out of their drawers and flung them onto the ground. That is not democracy in action, Scarlett, that is just anarchy. I took you home. That night I went out for sushi with Amy and Rebecca, and toward the end of our dinner, we found out that President Barack Obama had been reelected! It was big, exciting news, and a step in the right direction for the kind of future I want you to have: one full of opportunity, choices, self-worth, and lifelong learning. Plus a sweet wardrobe.

I love you,
Mom

The 31 Days of Halloween

From me to you

Dear Readers,
First off, thank you for reading the blog. Obviously, if I just wanted to write private letters to my daughter, I wouldn't do it on the Internet. But it's fun for me to share the moments in our lives and all of her milestones and antics, which is why I do it in this public way. Over the course of Scarlett's 2.5 year life, there have been things I have kept to myself (many of them involving potty training). Actually, I've often thought that I would take the blog down completely at some point while she's still young so that there's no (or little) chance of it coming back to embarrass her. Of course, I would save the letters for her. But for now, the purpose of the blog is as much to keep people updated on our lives as it is to leave a journal for Scarlett.

Which brings me to this next part. There is something major that I've kept off this blog, and I want to share it now. This summer I was diagnosed with a neurological disease called Amyotrophic Lateral Sclerosis (ALS.) You may know it as Lou Gehrig's Disease, or you may not know it at all. I didn't. I had heard of it, but really had no idea what it meant to the people who had it and to their families. Now I know far too much about it, and yet still not enough, because no one knows why I have it or how to cure it. It started last summer when I just kept falling. Such embarrassment! I fell going up the stairs, I fell going down the stairs, I fell when I was trying to jog, I fell when I was pushing Scarlett's stroller along a perfectly flat street. Rob was incredulous, but not worried. He thought I had too much on my mind, that I wasn't paying attention, that maybe I needed different shoes. My grandmother told me I was too thin. But everyone agreed that I should see a doctor. So I went to a nurse practitioner in September of 2011, after months of random falls. She did some blood work and a few weeks later, I got a letter in the mail saying that my levels all looked good and there was nothing wrong. I decided to try running again. I could get about three minutes into a run before my feet simply stopped lifting off the ground. It was ridiculous. I, who have run marathons, could make it only a few blocks. OK! ONE marathon. Still.

I had always envisioned myself getting back into running shape after Scarlett's birth. I joined a stroller fitness class when she was 6 weeks old, and huffed and puffed around Alamo Square and Buena Vista Park with a handful of other like-minded moms. It felt great. But I never really had a good, long, productive run. I wish I could remember my last good run.

I consoled myself with thoughts that this was something that would go away, that I just needed to get out there more often and train my old, achy body again. I had just turned 33. So on a trip to Chicago to visit my parents, I set off on a run to my grandma's house. It was a run I've done a hundred times, about a mile. When I was in good shape, I would run all through town, hit the high school track for a few miles, and then end up at my grandparents', high on endorphins and fresh air. This time, I couldn't make it more than two blocks before I had to walk. Determined to get through this, I picked up running again after a couple of minutes and bit it--hard--right across from my former junior high school. I had been out on my feet for about 12 minutes. With blood trickling from my knees, I decided I couldn't show up to visit Nana, so I walked home, angry and frustrated.

When I got back to San Francisco, I saw another nurse practitioner, who sent me to a podiatrist. I had decided that I had a pinched nerve, and the podiatrist thought that might be the case. He told me I wasn't using the muscles in my feet that other people used to run and walk, and that the problem was likely originating somewhere in my back. This, he said, might explain why I had been waking up with insanely painful cramps in my legs every morning. The muscles I was using were exhausted from doing a job they weren't meant to do, literally keeping me on my feet. The panicker in me did great with this information. I tiptoed out of his office and flung myself into the car, sure that I was doing more damage with each step.

The podiatrist said that the person I needed to talk to was a neurologist, so I did that next. I'll never forget that day, because it's the first time I heard the letters ALS as a possible theory for what was going on with my body. The neurologist, a second-year resident with zero bedside manner, watched my arms for what he called fasciculations. My arms obliged, over and over, though it was the first time I had ever noticed the twitches. After that, I noticed nothing else. Cramps, twitching, muscle weakness and atrophy: turns out it's the recipe for ALS, especially obvious in someone my age because there's almost nothing else it could be. We traveled other avenues, did tests, and even a three-month series of intravenous treatments to rule out some other kind of neuropathy. But nothing worked, and in June, the doctors found that the disease had spread from my legs to my arms. This allowed them to classify me as an ALS patient, albeit one who only showed signs of lower motor neuron disease.

At this point, nearly 4 months after that diagnosis, I can feel nothing unusual in my hands or arms. My disease is isolated for now to my legs and feet. It's getting worse there. Though I used to walk all over the city with Scarlett, I can now make it no more than a few blocks before my legs begin to quiver and my feet just won't lift anymore. At these times, I literally feel like I could be blown over by a strong gust of wind. What does this all mean for life with a rambunctious two-year-old? It's been tough. There are times when she doesn't want to leave the park or her preschool, and I know that any other parent would just be able to pick her up (not fun, but at least possible) and wrestle her to the car. I don't have that option, and so I find myself appealing to her in a rather unattractive way to please just help me out and walk to the car. It usually doesn't work. What does work is telling her that she can have a treat, so yeah. I never really wanted to be the parent who bribes her kid. But I never wanted to be a mom with a disability either. Compromises.

I have spent some time feeling sorry for myself, and more time feeling angry. I don't like that this disease is taking things from me, that it will take more before it's through, and that there's nothing I can do but "hang in there" as the doctor who eventually diagnosed me said. But I have come to realize that I'm lucky. I'm lucky that my brand of ALS is moving slowly, that I can still walk at all, that I can take Scarlett to music class and dance with her, that I can cook dinner for my family and spend an amazing Fall day at a pumpkin patch (pics to come.) I'm lucky that I have my incredible daughter, my patient, solid husband, my family and my friends. When all else fails, I think: what if it was Scarlett who had the disease and all I could do was watch? That usually shuts me right up.

This year, as tough as it has been with the waiting, the declines in health, and the ultimate news of my diagnosis, has afforded me time to get used to the idea that my life is not going to be the life I had planned for. And although I can't always reside in a state of calm and acceptance, I am working towards it. I will probably write about this more, maybe even start a new blog about it if there is enough to say.

I'm still hopeful, by the way. People overcome diseases all the time. Cures get discovered. I'm hanging in there. Still loving so many things about my life. Still thanking you for reading this.

Love,
Sarah