Archive | December, 2012

Dear TigerOne: New Year’s Eve 2013

31 Dec

Dear TigerOne,

It’s New Years Eve and you have been fussy all day. You finally fell asleep around 10 and I got to take a long hot bath. It was the first time I bathed in about 3 days and it was heavenly. By the time I got out of the bath your father was asleep and snoring on the floor next to your crib. Did you know that one of us sleeps in the nursery next to you every single night? We do that so that if your apnea alarm goes off because you stop breathing in the night we can respond as quickly as possible. I’m told that eventually you should outgrow the apnea, and honestly that day can’t come soon enough. Coupled with the regular stress of being a new parent, we deal with the stress of knowing that you could easily die in your sleep. Sometimes in the middle of the night I watch the rise and fall of your little chest while reviewing how to do infant CPR in my head… I try not to worry about it too much, but I’m your Mom. That’s my job.

Anyway, I’ve gotten off topic. It is New Year’s Eve and I can’t bear to wake up your Dad to give him a kiss at midnight.
He is really exhausted from working hard all day and then coming home to care for you, so I’ll let him sleep. You’ve got a really good Dad. We both lucked out on that front.

So I’m sitting up alone basking in the light of our dried out a Christmas tree reflecting on 2012. The central focus of this year was bringing you in to this world. You were conceived in January and I gave birth to you in November. During those 10 months you and I spent a lot of time at my office, we rocked out at Coachella, went on day trips to the coast, flew to Portland, swam a lot at the pool, and had lots of other little adventures. There were lots of good times with you on the inside.

The last few months of 2012 were pretty insane. They were filled with some intense highs and lows. We were burglarized right before you were born and had a lot of valuable stuff stolen. You didn’t want to be born so I had to have a long induction. I got to have the amazing experience of birthing you naturally, and then I spent 3 long weeks at your bedside in the NICU. We had your brain scanned and learned that you have Joubert Syndrome. Eventually we got to take you home from the hospital and soon after I turned 30 while wearing you in a carrier and toasting mimosas with my friends. Last week we shared our first Christmas as a family. Life certainly hasn’t been dull since you came along.

I am hopeful that 2013 will be a little less dramatic. I think we’ve earned that after the past few months. This year I’m planning on
learning more about your diagnosis and helping you thrive in every way that we can. I’m really looking forward to seeing your personality blossom. I’m excited about lots of cuddle time and laughs and am ready to soak up every ounce of these sweet baby moments before you turn into a little boy. It’s going to be a good year.



Wright’s Law

28 Dec

On Christmas Eve, the New York Times featured a video called Wright’s Law on their website. It profiles a high school science teacher who has a son with Joubert Syndrome (JS). He seems like a wonderful teacher and an incredible father.

Watching this video was the first time that I had the opportunity to see someone with JS other than my son. The boy in this video, Adam, is pretty severely affected by the syndrome and while I know that JS is a broad spectrum disorder and we won’t know how TigerOne is affected until he is older, it was pretty emotional to see how JS affects this child and his family.

Ever since we got TigerOne’s diagnosis we have hoped for the best while bracing ourselves for all of the potential manifestations of the disorder. I dream that my son will be able to walk and talk one day, but have no idea if he ever will. It’s easy to get lost in the overwhelm of his possible future. This video reminds me that no matter how it all shakes out, the power of a parent’s dedication to their child is epic. Despite the challenges that JS might bring, love lives.

Wright's Law

Wright’s Law
DECEMBER 24, 2012
By Zack Conkle

Jeffrey Wright uses wacky experiments to teach children about the universe, but it is his own personal story that teaches them the true meaning of life.

Dear TigerOne 12/25/12

25 Dec

Dear TigerOne,

Happy first Christmas, my sweet boy!

We are spending the holiday with your Auntie, Uncle, and cousins in Sacramento. Your littlest cousin is romping around, he is 3 and he calls you his “Cousint”. He is really looking forward to a time when you are older and can play together, and has promised to teach you how to eat yogurt when you get bigger.

This morning you spent a long time in your bassinet transfixed by the Yule log flickering on the TV. Later in the afternoon we headed over to have dinner with your Great Grandparents and your Great Auntie. How cool is it that you get to have so many Great family members in your life? You weren’t very impressed with your gifts; a ladybug rattle, a travel sleep sheep, a monkey shaped binky holder, a shark onesie, a pirate octopus doll called Captain Calamari, a giant stuffed gorilla, and a of couple cute hats. Not a bad haul for someone not even 2 months old! I think you’ll appreciate the toys in the coming months, and since you are a fiend for white noise the sleep sheep will be of great use on the way home.

This year I think I you got to enjoy the true meaning of Christmas, spending time with family. In the next few years toy fever will probably take over and it will be a while before you realize that Christmas isn’t just about Santa and sweet treats and twinkly lights. It’s about fun traditions, making new memories, remembering good times, and sharing space with the folks who love you most. This is the beginning of a lifetime of magical Christmases together.



first christma

New Life Comes

23 Dec

One of my best friends is in labor right now.

I sit here miles away, remembering what that experience was like for me less than two months ago. I’m sending her thoughts of love and strength, while cuddling my own sweet baby boy in the early morning light. TigerOne’s breath falls sweetly on my neck. Outside rain is steadily falling, and inside ocean waves crash continuously on the white noise machine. There is no time in this moment. Only me and this tiny being, flesh of my flesh, his heart beating in my arms. There is nothing like this feeling.

It is the Eve of Christmas Eve and another new life is making its way into this world. I’m so thrilled for my friend to finally meet the mysterious and beautiful creature she has been growing and nurturing all of these long months. For her to experience tender moments like this, where it feels like there is no one else in the world. I cannot wait for her to know this kind of love.

Dear TigerOne 12/13/12

13 Dec

Dear TigerOne,

Today you took your first trip to Christmas Tree lane, which has been a holiday tradition in Alameda for about 1000 years. Last year your father & I went for the first time and I talked a lot about how this could be a family tradition for us and one day we would bring our little one to share all of the bright twinkling lights with.

I put you in the ergo carrier to keep you warm and we strolled the lane as your Papa snapped lots of pictures. Between bouts of fussiness you sucked my pinky  finger and calmly took in the bokeh of the holiday twinkle as I sang Kanye’s “Lights” and “Rockin’ Around the Christmas Tree”.

On the way home to give your you 9 pm feeding you were so hungry that you ate 45 mls out a bottle. That’s a personal record for you. Last week you were eating 2 mls 1 drop at a time out of a syringe. Today it seems like you can’t suckle down that milk fast enough. Everyday you impress me with your ability to learn so quickly. When that bottle goes in your mouth you get an extremely focused and serious look about you. I can tell that you are working very hard to learn how to eat, and your work is paying off. I know this sense of determination will serve you well as you face other challenges in this life. Everyday you continue to make my heart explode with pride.

I adore you, my sweet little reindeer.



Dear TigerOne 12/12/12

12 Dec

Dear TigerOne,

Today you are 5 weeks and 5 days old and you drank from a bottle for the first time. You had 17mls of breast milk in physical therapy & you swallowed it all like a champ. Ok, so you may have gotten a little eager once or twice and sputtered a little, but still — I am enormously proud of you. A month ago you could barely suckle a finger and look at you now! Seeing you eat with your mouth lit up a light at the end of this tunnel known as your NG tube. Keep up the fierce progress my sweet boy.

Dear TigerOne 12/10/12

10 Dec

Dear TigerOne,

Today we took our first long walk in the stroller. We went to a cafe with a friend of mine and then you came with me to my Drs. apt. You spent the whole visit snoozing in your seat. Such a good baby.

I stopped at a restroom to change your diaper which turned out to be super poopy and you were pretty unhappy about the situation. In the middle of the stinky crying chaos you pulled out your NG tube. Fortunately you weren’t due to eat for a few hours so your father & I seized on the opportunity to take some pictures of you tube free. We had a lot of fun & I got some frame worthy shots for Xmas. You are really ridiculously cute with our without that tube, but it was a lot of fun to kiss on both of your chubby cheeks and admire your sweet face without it.



Christmas Hams