Uh Digg-a

Ever since Miles got a cold in Panama back in early Januray, our house has been like a clinic! We keep on passing colds, sinus infections and stomach problems back and forth between the three of us. Even my mom, whose been staying with us for the last week, went down! Oh and every time Miles' cold/nasal infection/diarrhea gets better, he's hit with tooth pain! Yep, those little baby molars piercing his gums for days at a time, keeping him and us awake at 2 am. Last night, I had just fallen into slumber when little dude starts yelling and crying in pain. I waited about 20 minutes before going into his room, hoping that he might just get himself back to sleep. But he couldn't handle the pain and I couldn't handle the screaming. So I spent the next hour and a half, comforting him and trying to get him to stay asleep in his crib, not in my arms. In the end, I failed and had to call in reinforcement because I could barely stay awake.
But in that hour and a half, as I cursed the situation while trying to exude calmness to my delirious child, I smiled and recounted all the cool things he's been doing lately.

Cool thing #1: HUGS! - Miles gives hugs now. Real, arms-around-the-neck-squeezing hugs!
I had only received hugs like that from other people's kids and even then I melted. To have my own child hug me tightly around the neck is like heaven. The first time he did it, I almost cried!

Cool thing #2: "Uh-Digga-A"- Miles is making this hilarious new sound where he's exploring new consonants and different tongue positions. Great for his speech development and great for making us laugh. He's been crawling around the house going, "uh digg-a digg-a digg-a". It's comedy!

Cool thing #3: Straw Drinking! - Okay, another great thing for strengthening his mouth and tongue muscles, therefore helping with speech, is drinking from a straw. Every now and then I give him the straw sippy cup or just a straw to sip water with and he hasn't really known what to do with it until two days ago. We were at a restaurant and he didn't want anything, so I offered him some water in a regular glass with a straw and he sucked it right up. And wanted more! Woo-hoo!!! Now we can start working more with a straw and hopefully getting him away from the bottle finally!

Cool thing #4: Eye Exam Results- Miles went in for his first eye exam and passed with flying colors! The doctor said his vision is fine and she sees no problems with jittery eyes, crossed eyes, cataracts, or anything else. She said that unless something came up, she wouldn't need to see him again for another 3 years. Okay!

I know there were other things, but I can't remember anymore since it was past midnight and I've had 3 shots of espresso today and I'm a bit too jittery and scattered to think straight. Point is, that as terrible as the sleepless nights may be, they are worth getting those little hugs from my baby and hearing him find his voice and knowing that he's healthy and getting stronger every day. I'm exhausted and cranky at times, but so is anybody who's averaging 5 hours of sleep a night. At least I get some pretty amazing rewards out of it!!

A Little Help for Mom

I’m not Super Mom. I’m not Wonder Woman. I’m just me. A mom with a child who has special needs. He’s a perfectly normal child with an extra chromosome, thereby delaying most of his physical and emotional development. It doesn’t sound so hard on paper. But in reality, even when I think I’ve got it all under control, I realize there’s usually an internal struggle happening. If you see me and ask me how I’m doing, I’ll tell you I’m doing well, thank you. Because I am. I’m not on the verge of tears all the time anymore. I’m not completely and utterly devastated, depressed or angry anymore. I am all of those things and more on any given day and under any given situation. All those feelings and emotions are living within me constantly. I just don’t need to bring them up all the time. If I did, I would need to be institutionalized. Instead, I’ve learned how to cope with my circumstances. In fact, I more than cope, I do well. I feel happiness and love as well as sadness and anger. It’s all part of my life and I accept it all. Honestly, right now the hardest thing to deal with is my schedule!

Organizing my life so I can be there for Miles and his therapies and my career and being a wife and a friend and having time for myself, is difficult. And I realize that part of the reason it’s so hard for me to get organized, is because I want to do it all. My husband freelances, so he can help with Miles on his days off. My mom just moved to LA, 5 blocks away so she can help me. My in-laws and my brother also live in town. But no matter how much they want to help, they all have their own lives to deal with first. And nobody can be there for Miles the way I can. He’s my son. I know when he needs to eat and what he needs to eat and when he’s tired and when he’s just hungry or cranky. I want to be there during his therapy so I can see his progress and so I can help him at home. I am getting an education in OT and PT as much as he is. If I wasn’t present for his therapies then I wouldn’t know how to feed him properly or how to help him transition from sitting to standing and vice-versa. I wouldn’t know to help him crawl and reach for toys and use his core. I know how to help him because I am there to see his progress and be taught by his therapists.

I know I need to accept help more, but I am pretty attached to this little dude, even if I need time away from him. Like I said, I want to do it all. Maybe deep down inside, I do think I’m Wonder woman.

A typical day for Miles and I consists of 1-2 hours of therapy, at least 1 audition or a booking for me, preparing meals, cleaning up and dealing with house “chores”, answering emails and phone calls and some playtime with Miles (if he’s lucky). Once he’s asleep, I might read or watch TV for an hour, sometimes finish emails, but by 10pm I am seriously pooped and plop in bed ready to start all over again the next day. It’s exhausting, but in a way, I love it. I want to be able to put more time and energy into my acting career, I do miss it. But it’s hard for me to let go of my role as a mother and therapist long enough to have more time for myself. I’m working on it, I swear, but it’s a slow process.

I had my first “theatrical” audition (meaning non-commercial or voice over) in over a year this week. That same morning, Miles had therapy and was cranky, I thought he was sick. I had to wait for the handyman to come and give me a quote on a job and the plumber to come and fix the sink. I had to eat breakfast, take a shower, put on make-up, drop Miles off at daycare, make his lunch and snacks and look at my script all before 10am. It was hairy! I got to my audition on time and I was nervous and frazzled and unfocused, but I had fun. I had a lot of fun. And it’s not a matter of needing to book the job, but a matter of getting back into the game. I’ve been out of it for a while. But like I said, I am trying.

Today, Miles had his Speech evaluation from 9-11am in Hollywood, then I had to drop him off at daycare and rush to my voice over booking in Santa Monica at 12p. I barely had any breakfast and the voice over session ran long, so I didn't eat lunch until 2pm. And that’s another normal day. But as frazzled and unfocused as I may feel, I’m still smiling. I am trying to do it all and I do need help. But I had fun today.

I got to be there while Miles flirted with the Speech pathologist and I got to go to work and chit chat with friends while we waited to record. And I got to drive my car and sing along to the radio blasting while stuck in LA traffic. I got to sit here at a café for 45 minutes and write in my blog before picking up Miles in daycare. See, some days as frazzled as I may be, I can do it all. Some days, I can’t and that’s when I need to ask for help. And I will. I promise. I’m working on it!

On a quick note: Miles was approved for two hours of Speech Therapy a week!

So he will now have:

2 hours of Physical Therapy,

2 hours of Occupational Therapy,

2 hours of Speech Therapy and

1 hour of Infant Stimulation all in one week.

His schedule is booked up and coordinating playdates and doctor’s appointments and auditions and lunches is a challenge, but I’m ready to take it on…with my family’s help!

Opening My Heart

I've been doing yoga for over ten years now. At times I've been able to really focus on it and practice 4-5 times a week. Other times, it's been more of a relaxing, calming exercise I do once a week. When I was pregnant with Miles I was very committed to my yoga practice. It made me feel strong yet flexible, focused yet relaxed. I was practicing 4-5 times a week up until two weeks before I gave birth....mostly in a regular class, not the pregnancy class. I did go to that one every now and then when it was too hot and I just needed to breathe.

There is a very strong community at my yoga studio and Zach and I became part of that community with Miles in my belly. Every Friday there was druming and singing at the end of class. We even attended a two hour drum circle one evening as part of a Yogathon. Being there with all these wonderful people who look at life and spirituality in a similar way as I do, made me feel more connected with myself and the baby inside of me. My last day of class before I gave birth, there was an impromptu singing session for Miles. Several beautiful women sang to him and blessed him with their love. I felt very nurtured and loved and positive. When Miles was born and I told my City Yoga community that Miles had Down syndrome, I am sure that they were devastated for me, but what they showed me was love, kindness, support and acceptance.

Yoga to me, is a way of life. A way of checking in with myself and balancing my emotional and physical body. All of the lessons that I've learned on my mat are transferable to my life in general. So why have I had such a hard time going back to yoga this year and a half since Miles was born? Why has it been so difficult for me to show up ad be open to myself?
Sure, the obvious reason is Time. Which is a huge culprit. I often can't find the time to go to yoga, what with Miles' therapy schedule and my auditions and work, it's difficult to follow a routine. But more than that, it's my own fear of what's inside of me. Sometimes it's too painful, sometimes it's just plain sad, but really it's everything. As much as I love and adore and admire my son, I am still dealing with the fact that he has Down syndrome and how that will affect me for the rest of my life. The. Rest. Of. My. Life. And in yoga, on my mat, by myself, it is hard to hide from my true feelings. But oh I am good at it. I am savvy at hiding and showing what's really going on inside. Even my husband, who I think knows me better than I know myself, is often fooled by me. I should win an Academy Award!

Today, I made it to class and I couldn't hide. I tried, but I couldn't hide. Maybe I didn't really want to hide. Who knows, the point is we were working on "heart openers". Right there--- Boom! I am toast. I love heart openers. And it's beautiful to be so open, but it makes me very vulnerable and there's nowhere to hide when you're offering your heart up to the world. Then the teacher was talking about self-love. So much of opening our hearts is opening up to ourselves, our love and devotion to ourselves. We even meditated on the things we love about ourselves! So here I am, trying to hate on myself, because that's been my M.O. lately, and be depressed, because I've been feeling aimless and unhappy and here she is telling me to dig into that. To dig past that and find me and my love for me and why I love me. Jeez!! Forget about it! The tears started flowing as all the love I have for myself, but which I've been hiding, came pouring out of me...to me. It's amazing when you feel sadness and joy at the same time. It's enlightening. I felt it when Miles was born. And I felt it today on my yoga mat.

Traci, the wonderful drummer and singer who along with our teacher Rebecca, used to lead the chanting on Fridays at the end of class when I was pregnant, happened to be back today. For the first time in who knows how long. I had no idea she was there, I'd been so focused on battling my demons during the class that I hadn't even seen her. But there she was with all her beautiful energy ready to play for us and lead us in this mantra about self love. Om Namah Shivaya.

Was it all a coincidence? I don't think so. I was in the right place at the right time today. I have been in a funk, a deep annoying funk that comes and goes and that no matter what I do, I can't seem to shake. And today in class, all this wonderful energies collided to speak to me to open up to myself. And in opening up to myself and accepting myself a little bit more, I am also able to accept my reality a little bit better.

I thought about Miles and what an amazing baby he is all on his own, but I do think that I had something to do with that while he was in the womb. All that love, joy and nurture that I felt while pregnant, he felt. All the singing, dancing, drumming that I did during my pregnancy, all of it is part of who I am and it's a part of who he is. It's no surprise that Miles loves music and that he's not just into the drums, but the guitar and the piano. It's in his soul. Yoga? It's also a huge part of who he is. It's what he does in Physical Therapy. Literally-- he does yoga.

One of the misconceptions I had about people with Down syndrome was that they were nothing like their parents. I thought that they were more like each other than like us. But as I continue to learn on this journey, Miles is more like us that I ever thought he would be. He is his own person, that's for sure, but he came from us and has us in him. And that makes me smile, which is a nice feeling for me since I've been feeling so sad. Been faking it on the outside, but struggling with it on the inside. And today, I was able to let my guard down long enough to remember that I do love myself. I love myself for so many reasons that I can't even list them here! I love myself even though I am messed up inside. I know I still have a lot of work to do and I know I'm gonna try to hide from my feelings most of the time, but that's just part of the process. Today was a breakthrough. It gave me some hope. And a little hope can go a long way!

Desert Vacation

We're on a little family vacation. Just the three of us. A little road trip to the California desert, one of my favorite places. And we are all sick! Miles has a nasal infection and has been on antibiotics for the last 5 days, but he doesn't seem to be getting any better. So I talked to the pediatrician and she gave him a stronger dose. Poor guy, so little and on antibiotics. But he's been sick for too long now and if this will help, then I'll do it! Whatever it takes. Seeing my baby with circles under his eyes, blotchy face, snotty and drippy, unable to sleep or breathe well for over three weeks is terrible. And it's hell at night too!

Last night he was up almost every hour and a half crying uncontrollably. Zach and I also came down with some kind of cold, so we had taken nighttime medicine to try and sleep. Bad idea! We struggled taking turns, dragging ourselves out of bed to tend to little sick Miles. I had no patience and couldn't seem to calm Miles down, so finally Zach took over and let me get some rest. He's truly amazing in these moments when I just can't handle it anymore. He comes in and takes care of everything. He was able to calm Miles down enough to get a few hours of rest. This morning, we both looked like depressed zombies shuffling through this rented house, while Miles crawled around at high speed, yelling with excitement! How is it possible that he can be sick yet have so much energy? At one point after breakfast, we lied on the couch watching Miles play but unable to play with him from our lack of energy. We were waiting, looking for any sign that he might be tired and ready for his nap. I can see the humor in it now, but this morning I was not having it!

Yes, I am feeling much better tonight. Zach is too. And Miles, though still snotty and congested, was able to fall asleep with no fuss. Zach and I enjoyed a calm dinner, as opposed to last night's crying mess! One of us kept running into his room while the other made sure the food didn't burn and in the end it took us like 2 hours to finally eat. This is not the way I wanted our vacation to start, but I can at least say that we did make the best out of our day. After restful morning naps, we went out for a stroll, rented bikes, swam in the heated pool and read our books. Not too shabby! Miles summed it all up by clapping a lot this afternoon. He just figured out how to clap his hands a couple of days ago and spent most of the afternoon excitedly clapping away at everything we did.

It might be hard to have a calm and relaxing vacation with a baby, but it's not hard to have fun. So that's what we're doing; we're having fun despite the rough beginning. And Zach and I are still managing to find some quiet time for reading, writing and the hot tub. I count my blessings!

Yep, He's Really a Toddler

I'm struggling a little bit these days because my very easy little baby is turning into a full fledged toddler. I've gotten so used to Miles being easier than most babies, he would nap anywhere, eat anything, use his high chair, endlessly play with his toys without needing my attention...the list goes on. Now, Mr. Miles is Mr. Busy! He is constantly blabbing, wanting to know what things are, pointing to the fan and the lights and the doors and people asking "ya" or "aya" over and over and over again. He's up at 6am talking, standing in his crib, ready to start the party. The sun's not even up and he wants to play play play. Playtime all the time!

These days, food time is tantrum time. Not all the time, but often enough that I get nervous around meal time. I'll sit him in his high chair and he knows he's about to get food. He yells, "Don't tie me down!" or at least that's what I imagine him yelling if he could speak. Instead he screams, thrashes and makes angry faces at me. The thing is it doesn't last too long and I usually manage to get him to taste the food. Once he takes a few bites and realizes I'm not trying to poison him, he'll eat. Though not necessarily the whole meal.

In the last week, Miles' curiosity and ability to make connections has exploded! He's busy and constantly wanting to communicate or play or be held...there's always something going on. He's behaving completely normal...like a toddler. I'm just not used to that. All my friends with toddlers have been running after their kids for the last six months and I've been sitting back thinking, "Hmm, that's not gonna be me". Now I'm eating my words cause it is me! And I'm exhausted. But happy. So happy at all the amazing progress Miles has made.

Besides the constant blabbing and pointing at things, I can hear that his babbling has become more complex with more consonants and vowels. He is also blowing bubbles in the bathtub. He sticks his face in the water and blows bubbles! I think it's time for him to start another round of swim lessons. He's also a great imitator. He'll imitate both sounds and gestures, which really makes me feel like his cognitive skills are strong. He's been crawling now since the beginning of January and getting better at it every day. Also, he is standing for longer periods of time and not only cruising back and forth while holding on to something, hcan now pivot, go around the coffee table and go from one couch to another. He's just getting so much stronger.

Miles has also become a guitar virtuoso. Okay maybe not quite a virtuoso, but for a 17 month old baby, he can play! Put a guitar in front of him and he no longer mashes it with his hands, he actually strums and uses his little fingers to touch the individual strings, making beautiful sounds. It makes me smile just thinking about how far he's come. I put him in music classes when he was just 5 months old. He couldn't even sit up on his own and I didn't know anyone in the class. All their babies were sitting or even crawling. It was hard showing up to this group of complete strangers and cheer on my baby who could barely put together what was happening. It is now a year later and and when the teacher takes out the guitar, Miles knows exactly what's happening. He perks up and crawls right to her and starts strumming her guitar. And at the end of class, when the teacher holds out the pick for the kids to strum with, he knows exactly what to do. I don't know if I can fully express how awesome it feels to see Miles hold the pick between his two tiny fingers and hold it up to the strings. It's like magic.

So if Miles is doing so well and I'm so happy, what am I even struggling with?
I'm struggling with time and schedules and routines. I'm constantly tired and need more patience to deal with....everything! I know that Miles, and children in general, thrives with routines and the proper amount of sleep. But ever since our trip to Panama it's been very difficult to balance it all. He isn't sleeping well at night, has not been able to fully shake off the cold he caught in Panama, and his mind is exploding with life. Add to that my constantly changing work schedule, his new therapy schedule and my need to make "me" time, that it's no wonder I feel foggy, tired and negative.

What's the remedy? Breathing, exercising, and carving out time for everything. Slowing down even if it feels like I need to speed up. It's easier said than done, but I need to try it because I can't go on like this. What I really, really want is a vacation...by myself. I want to get pampered in mineral waters and do yoga and eat healthy and write and read and daydream. But for now, I'll take 10 minutes to sit here and daydream about it all, calm my breath and know that it will be all right. Right?

It's Hard to say Goodbye

I've been sitting here trying to write a blog post that encompasses the last two months and I'm finding it impossible to express everything that's inside of me. My sister Eni and her daughter, Maya, went back to Sydney last night after visiting us for the last two months and I am overcome with sadness by their departure.


Maya is just 3 months younger than Miles and she became like a big sister to him during this trip. On the first few days Miles and Maya barely acknowledged each other, but by the end of the trip they were best friends. There was much love between them (and some healthy rivalry too).
Miles watched Maya intently, trying to understand what she was doing and how she was doing it. Eventually he started imitating everything she did, from playing with the DVD buttons to fully crawling. With Maya's help, Miles started exploring every room in the house, not just the ones we were in. He started opening more kitchen cabinets and taking out pots and pans, not just the Tupperware. He started walking around the coffee table, attempting to climb up on the sofas, crawling underneath the dining room table, and pointing at everything wanting to know what it is.

In the mornings when they would wake up, they would call for each other from different rooms and them come crawling towards each other in the kitchen, smiling, and pointing in excitement at the sight of each other. They hugged and held hands on those rare moments when it was quiet and we wondered what they were up to. Sometimes they fought for the same toy or for their mama's attention, but they always made up as if nothing happened. At times, Miles would look up at Maya adoringly, smiling with love. This afternoon, he went looking for her in her room. He was yelling for her, I think, and seemed a little confused when he walked into the office to find her crib was missing and Tia Eni's bed wasn't there anymore. It broke my heart.

So when I was feeding Miles his dinner and it was just the two of us, no Maya riding the little fire truck, running away from her mom and happily yapping to herself, I felt sad and the house seemed huge and lonely. She was a great influence on Miles and a wonderful companion to him. As he was to her. Miles is a pretty fearless baby and on this trip, Maya started letting go of some of her fears and began walking! She also started calling everything "aya" ( a short version of her name) and after Panama everything became "agua" (water). She developed some pretty adorable habits too, like tapping her shoulder to her cheek and smiling sweetly to get a reaction from you. And she came up with that all on her own!

I won't lie, at times it was hard to see Miles and Maya together because she is everything that I thought my baby would be. And at times I felt myself wanting to give her more attention because she is so cute and so aware and engaging. Seeing them together made his delays more obvious and painful to me. But it never made me love him any less or wish he wasn't who he is. When I look at Miles, I see a perfect little boy who is working hard and achieving his goals at the exact rate that he should be. I recognize that I am the one who often needs to work on having more patience and letting go of certain expectations. I learned a lot from these moments watching the kids together and from seeing my sister with her daughter. It's hard for every parent, whether your kid has special needs or not.

My sister was so good with the kids, playing and carrying on with their silliness. Miles loves his Tia Eni. From the minute he saw her when she arrived at our house two months ago, he gave her a huge smile and stretched his arms out so she would hold him. And that's how it was the whole time, Miles always had hugs and kisses (and a few painful bites) for Tia Eni.


Yep....a lot has happened in the last two months. We celebrated Thanksgiving, Hanukkah, Christmas, New Year and Three Kings Day. We played in the park, visited the museum, went to music class, learned some sign language, went hiking, met up with new and old friends and celebrated both Maya's and Eni's birthdays. Together we traveled to Panama and went swimming in the Pacific Ocean and the pool, we played in the sand, slept in hammocks, met other cousins and aunts and uncles, ate yuca and patacon and other typical Panamanian foods and got lots of smooches from all the grandparents.


During these last two months, my house has been a mess of toys and baby food and bottles and diapers and tired parents and screaming children and I loved it! I loved all of it, even when the screaming children and stressed out parents drove me crazy. I still loved it because they filled my house with joyful energy and my heart with love. And even though I am sad that they are gone, I am happy for all the memories we made, all the pictures we took and the time we shared. I will treasure it and I'll start planning our next trip to Sydney so we can continue the craziness in their home turf!

Merry New Year!

Merry New Year Everyone!! It's 2011 and I am excited for what this year will bring.

Yesterday I was recalling the sadness I felt during Miles' first Christmas in 2009. I was in love with my little baby, but utterly scared of the future with him. A whole year has passed and he's learned and grown so much. I've learned and grown so much and though I am still scared of the future, I am also excited and optimistic of what's in store for us.

In fact, Miles showed us a little sneak peak of what's in store for 2011. On December 31st, he decided to start crawling! Yep, my little wiggle worm lifted his belly off the floor and put one arm forward, followed by a leg, then the other arm, followed by the other leg and so on for 4 little crawl steps! He did it all day long, slamming his little hands down as if to make sure the ground was really below him. And he talked to himself the whole time, making little coo-ing sounds and laughing cause he knew it was a cool thing he was doing. He was so proud of himself and I was even prouder of him!! So there you have it, Miles will be fully crawling (or creeping as it is technically called by the professionals) sometime soon and as the natural progression of things go, he will then walk. At some point, in his own time, maybe not even this year, but in the future Miles will walk. What a beautiful way to end the year and start a new one!

May the New Year bring you all closer to your goals, your loved ones and yourselves.