Mood Elevator

If you follow my blog, you might have noticed I've been on blog strike. It's been over a month since a I make an entry because...well....I was on strike! And I was on strike because I've been depressed. I love writing and keeping you updated on Miles and myself, but blogging became another thing demanding my attention. And though it was giving me a momentary feeling of accomplsihment it wasn't enough to make me feel happy or truly good. So I purposely took some time off from all the things that have been overwhelming me to try and I find out what's really going on. Why is it that I couldn't sustain that feeling of contentment for more than a few hours, a couple of days? That's never been me and I was feeling so unlike myself. It was depressing!

For my whole adult life, I have nurtured myself physically, mentaly and emotionally. My life was all about taking care of myself and doing things I enjoyed, challenged me and would push me further. I took such care of finding balance in my physical and mental health that I was truly in tune with myself. That became my norm and in the last two years, I started taking that for granted. I would say it all started when I got pregnant with Miles. I was still taking care of myself, but through the help of my husband. Zach became my main nurturer, making sure I was well fed and that I rested enough and was strong enough to carry all that weight around. I allowed him to take over the role of nurturer for me because well, I needed it. It was nice to feel so loved by my partner. And everything I was doing for myself in my mind, was really for Miles. Then Miles was born and my mom stepped up as our main nurturer, at least for the months she was here helping us out. She fed us and made sure we got enough rest and that the house was running smoothly. We had other friends and family who came around to help and they all helped see us through those first 6 months. But somewhere in that time, probably the second Miles was born, I relinquished all my self care. My life became about Miles 100 percent. All the nurturing I had inside of me went to Miles, some to Zach and none to myself.

I'm not saying I have lost my self love or worth, they're still there. I just stopped doing all the things that allow me to feel strong, healthy and balanced. I ate so that I would produce enough milk to feed Miles. Not because I needed to nourish myself. I stopped exercising regularly even though it would give me energy and strength to take care of Miles. I stopped taking vitamins and started getting sick all the time. I stopped having quiet, meditative time because there's always something else that needed to be done around the house. After the first nine months or so, I started trying to catch up with friends and really get back to work. I wanted to feel "normal" again, go back to my "normal" life the way my other mommy friends were doing. The things is, once you have a baby, your life is never what it was. You have to find what the new "normal" is and I had a hard time doing that.

I mean, it's crazy for me to think that I could ever go back to what my life was when I have a child that has special needs, including seven hours or therapy a week! I can't just wake up at 9am and go to a yoga class for an hour and a half and then spend the day writing or going to auditions or meeting up with friends. That's not the way it is anymore ,but it's not terrible either. The mistake I made was trying to do too much at once and thinking I could handle it all because I couldn't. Finally, after the last 9 months, my body couldn't take it anymore. It started rebelling against me: physically and emotionally. My defenses had been down for so long that I was getting sick every few weeks, I was feeling ugly, tired, overwhelmed, angry, bitter, jealous. My body was achy and stiff and pissed off. And I got depressed. I have always been a positive person and have had no problem turning a negative situation or thought into a positive one. Well, in the last few months, that just wasn't working. And I started feeling downright hopeless.

The most frustrating thing about it is that I was well aware that my body was out of whack and I knew what I had to do to fix it, but I was thinking too big. I thought I had to make all the changes at once, so I couldn't start even one thing. Well, lucky for me I am not too proud and can seek help when I need it. I have realized the main reason I don't ask for help at times is because I don't want to reciprocate. (Yep, don't wanna have to owe anybody anything). But I have no problem paying for help! Point is, I am now on the path to being balanced again! All I had to do was listen to my body and intuition and take one step in the right direction. Just one. For me, it was eating right. Keeping my blood sugar leveled. Just that one change alone has elevated my mood and made me feel truly happy again. When I'm ready, I will take another step forward and then another and then another. And little by little, I will nurture myself back to balance as I figure out what "normal" means to me.

Family Togetherness

This year we celebrated both Passover & Easter because we are both Jewish and Catholic. My husband grew up celebrating Passover and I grew up with Easter. Since we've been together we have celebrated Passover many times, but I hadn't celebrated Easter in forever. Now that we have a baby and lots of friends with babies, these things are just so much more fun. Today I was reminded of when I was kid and how we loved painting the Easter eggs with my mom and then she would hide them and we'd search all over the backyard for them. And my aunt would spend hours working on our very special Easter baskets with all kinds of sweets that we couldn't find in Panama City but which she could get in the Canal Zone. Our Easter baskets were right up there with Santa Claus, they were that awesome! I have great memories of that time. And of my childhood in general, which is why I've realized now, having a child, how important it is to build some of these traditions back into our lives.



My husband and I might not be religious people, but we are deeply spiritual and committed to our families. We love our cultures traditions and we want to impart some of that onto Miles. And we want our families to be a part of his memories as well. We have spent most of our adult lives living far away from our families, spread out in different countries, not just states! Therefore, we need to take advantage of the fact that some of us are in the same city right now because who knows how long that will last. We need to live in the present, right? And we all benefit from this time. So in our own non-religious but deeply spiritual way, we had a great week of celebration and family togetherness. It was exhausting and so much fun!

Life Ain't So Bad

Life is so precarious. You can be running along having the time of your life and in a split second everything can change. Sometimes for the good, sometimes for the bad. But it's continually changing, so we should enjoy it every single day, right? What's that saying? "Live every day as if it were your last one". Recently, I've spent so much time worrying about the future and even the present, spending too much time bitter, angry or annoyed about one thing or another. I've been stressed out about time and scheduling and feeling fat and unhealthy (I know I'm not fat, but I do feel unhealthy....and I still haven't lost all my "baby" weight, so it's a bit depressing). The point is, I don't like being that way. It takes too much energy out of me. It's way better to be happy and care free, but is it possible to be that way when responsibility and life is weighing you down? I freaking hope so cause that's what I'm trying to be!!

Right now, my goal is to go with the flow and keep a positive attitude. It's easier said than done, but I'm managing. I have two mantras that I borrowed from Miles' Physical Therapist: "I accept whatever comes my way" and "This too shall pass". Both mantras can be applied to most situations and they seriously help me keep my chin up. And more than that, they make me grin. When I really look at my life and my situation, it ain't so bad! I live in this beautiful home with a loving husband and an awesome, healthy child. I work but still have a lot of free time and we're not financially struggling. I get to travel a bunch, I have tons of friends and family near me, I mean, life is good. So what if we might lose our house in some messed up insurance claim we're in. I don't know what the outcome will be, so for now I will enjoy every minute that I'm in that house! So what if if I don't have the time to exercise and take care of myself like I used to? Soon enough my son will be in school every day and I'll be able to focus on myself more. Or better yet, maybe I'll book some huge commercial campaign and make tons of money and be able to afford a trainer that comes to my house and helps me get back in shape! Who knows, anything is possible.

"Life is a constant struggle", that's another one of those sayings that I've heard all my life and which I finally truly get. Life is a struggle, constantly. I am overwhelmed by responsibility. I keep thinking things are going to slow down and that I'm finally going to have time to sleep, relax, exhale, whatever! I keep thinking that next week will be calmer, next week I'll have more time, but then I don't. The days fill up and next thing I know the week is over and I'm barely keeping up. I'm living on caffeine and eating too much just to have energy because I don't have the time to sleep. The thing is, it's not gonna change or slow down any time soon.
(Insert meditative breathing)
That's okay. I just need to carve out moments for myself.
(Insert deep breath).
Make sure to do one nice thing for myself every day, and make sure to laugh and smile and still have fun. I'm tired, but I can't be cranky all the time. I still wanna go out and have fun and feel sexy and enjoy my life......so here comes the balancing act. Keep repeating the mantras in my head and know that things could be worse or better, but this moment will pass and I can't dwell on it anyway.

The last few weeks have been jam packed with activity and I've still found time to sleep and read and write and catch up and exercise and go out. I've had a lot of fun and I've had a lot of frustration and that sounds pretty balanced to me. Yep, that's life, you have to be open to all of it.

Speaking of which, Zach, Miles and I were at Whole Foods the other day when this man who looked like he was in his 40's approached us. He teared up with love as he told us about his aunt with Down syndrome. He said she is an amazing person, "an angel and that's what others don't seem to understand, that people with Down syndrome are angels". He congratulated us on Miles and we left beaming with pride. It was such a sweet encounter, one of many that we have had and will continue having. Each of these encounters with strangers or friends teach us about ourselves, others and humanity. The lessons are priceless and the thing is, none of these encounters would happen if our life hadn't taken the turn it did, if Miles wasn't in our lives. So Life....keep it coming!

How Others See Him

When I look at my son, I don't see a baby with Down syndrome. I see my son: a beautiful little boy with brown almond shaped eyes and long dark eyelashes. I see his silky brown hair, rosy round cheeks and a perfect nose. I see a huge bright smile form in a delicate little mouth with ten sharp teeth!! I see soft, chubby arms and yummy, chunky legs, a protruding belly button and a cute round belly. I see my sweet angel, my screaming monkey, my laughing clown. I see Miles, my awesome son. But I often wonder how other people see him. Like when a complete stranger looks at him, can they tell he has Down syndrome or not? I know he has the typical Ds features, but I don't notice them anymore. I just see him. So what do other people see?

Last week, Zach and I took our first little vacation without Miles. We were only gone for two days (two glorious, warm, relaxing days with tons of sleep), but I hadn't been apart from Miles for two days since last October. And although it's not a long time, when we got home and I saw him reaching out for us from his crib, I looked at him and saw it. I saw what I think other people see when they look at him.....a baby with Down syndrome. For the first time since we learned he has an extra chromosome, I saw that in him. It was such and odd feeling even though it only lasted for a few seconds, it grabbed hold of me strongly. I felt weird and uncomfortable and sad and happy. I felt everything in a flash. Just like that, it went away and there was my Miles, smiling his mischievous-happy smile that warms my heart. But the odd feeling stayed with me. Did I just experience how strangers and acquaintances see Miles? I always assume that those who know him well see him the way I do, but maybe they don't. How do they see him?
I mean, it's not like it matters one way or the other, it's just one of those questions I wonder about sometimes and lately, it's been on my mind.

I guess what tripped me up about the experience is that when I saw him, he really looked like has Down syndrome and I'm just not used to seeing that in him anymore. I'm not living on a cloud, I know my son looks "different". But it made me think about other people judging him for his appearance and not for who he is and that was scary. But that's also reality. People do it everyday to everyone and it's just part of living in our society. So Miles has an extra 21st chromosome and he looks like it. That's reality. Thank goodness that's not all I see in him because that's just one small part of who he is. The rest is so much more interesting and that's what I hope other people will be lucky enough to see in him.

When I look at Miles I see a little boy who loves coconut water, playing the drums and "reading" his books. I see a boy who's obsessed with lights, and fans and wall switches. A boy who points at everything and questions what it is. I see a baby who crawls at lightning speed every time he hears the refrigerator door open. A baby who cracks up when playing peek-a-boo and jumping on the bed. I see a little boy who stares me down, then with a twinkle in his eye, cracks that beautiful smile. That is Miles.

Miles rocks out

Floppy Ain't So Bad At All

Miles is floppy. Well okay, the word is hypotonia. He has low muscle tone. That's the reality for people Down syndrome. That's why he has to do occupational and physical therapies, to help strengthen all the muscles in his body, including his tongue. That's why babies with Ds take longer to hold their head up, sit up, roll over, crawl, walk. It involves every single muscle, so it's also why Miles has poor control of his fingers and hands, his mouth, etc. Most of his therapeutic work right now is focused on strengthening his core. The stronger his core, the more solid and confident he will be to perform any task.

It's sad and inconvenient that Miles has to work so hard to strengthen his body when other kids just have that strength naturally. But I think there's a big upside to hypotonia: it makes Miles really cuddly. At 19 months I can still hold him and he feels like a warm, yummy, cuddly little baby. You know how parents are always like, "I wish my kid didn't grow up so fast?".....Well, I feel like that doesn't quite pertain to us. Miles is growing at a slower rate, so I actually have to slow my mind down to be at his speed. And it's good. When he's ready to make a big developmental jump forward, I'm ready for it too. And since he's my only baby, I don't know any better. I'm used to how soft and floppy his body is and I forget that's not the way it's supposed to feel. When I hold someone elses baby I am amazed at how strong they can be at such an early age. Then I get it, and the difference is plain and simple.
I mean yes, all my friends' kids are walking and Miles isn't. I'm okay with that, I know he'll do it sooner or later. What amazes me is when I see other kids move their bodies in ways that Miles isn't even aware that he can do. It's the little things that catch me off guard.

Miles and I were hanging out with some friends today and I saw one of them roll around on the floor, just for fun! She would roll over about 4 or 5 times in one direction then turn around and do it the other way. I've never seen Miles even attempt to do that. I don't think he knows that his body can do that. Recently, I also babysat my friend's ten month old baby and he started pinching me when I held him. Pinching me with such strength that it actually hurt. Miles' fingers do not have such strength. He's never pinched me. Once day he'll do it, but at 19 months, he still can't.

Any time I hold a typical baby I am reminded of how Miles is "supposed" to feel, how strong he "should" be. He should sit up straight and hold himself tightly, using his core strength. Yet as healthy and strong as all those babies feel, I love the way Miles is soft and cuddly. His floppiness might be a pain when it comes to putting him in and out of his car seat or getting him dressed, but he feels so good that I just want to hug and squeeze him all the time. And I can feel him getting stronger when I hold him. I can actually feel the change happen, which is amazing. That's why the fact that he is finally hugging me is so sweet. He has to engage muscles in his back, neck, arms, core and even mind just to give me a hug. And he is doing it now, even unconsciously when he's sleeping. I melt. Every single time. I melt.

So although it would be great for Miles to be stronger and engage his muscles to move the way typical kids do, I am okay with him taking his time. Because I get to really experience and savor the little moments. And those little moments become huge, exciting moments that make my day. Every day.

Can't Tame The Chaos

I was talking to a mom of two yesterday (a 6 yr. old and a 3 yr. old) who told me that she spend the first two years of being a mom trying to incorporate her baby into her life or trying to figure out how her life fit with her baby. She said that after two years, she finally stopped trying so hard. She realized that her life would never be the way it used to be and that she had to give in to the chaos. Once she did that, it ceased being chaos and just became life. Well, I'm still in that place of trying to figure out how to fit my life with Miles or how to fit Miles into my life.
I go through periods of having it all worked out, I'm in the groove and I'm feeling good. Then I go through periods of total misalignment, where life seems to be spinning out of control. Right now, I think I'm in some kind of transition period. Kind of like the weather: one day I feel stormy and emotional, the next day powerful and jubilant. And that's all right by me. I'm just navigating through these waters, taking it one day at a time.

The last couple of weeks have been both exciting and exhausting. I spent one very busy week, feeling like my "old" self again, booking several jobs and running around from one to the other. I felt guilty at times because I wasn't there for Miles' therapy or his bath time. But I felt great about having work! I was rejuvenated, inspired, my spirits lifted because I was taking care of myself. Miles was fine, he was being looked after by both my husband and my mom. He didn't miss any therapy and they got to spend more quality time with him. It was a win win.....yet I still had to tell myself that it was okay. That I was a good mother, that I wasn't being selfish. I still felt guilty. Why do I torture myself? Om....balance.....

Well, today I didn't torture myself. Today I let myself unfold with my day. I wasn't sure how it was going to shape up, but it turned out to be a fantastic day. I had no energy and no desire to go outside and be a part of the world. I dragged myself to yoga kicking and screaming and left feeling calm and clear. I spend the rest of the day with great company, had a long lunch with friends and a great gathering with my mom's group after that. Miles played and laughed and I ran around behind him feeling pure joy and love in my heart. It was a good day indeed.
Tomorrow? I'm not sure how I'll feel tomorrow, but right now I'm in a good state of mind and I'd love to keep it that way. I think the key is to remember that I cannot tame the chaos. Life is in constant chaos and that's the beauty of it!


Miles pics:

Here is Miles and some friends on a commercial shoot. That's right, Miles is following his mama's footsteps and trying to earn his keep in showbiz! Or something like that...he got the job through a friend and we're not making him earn his keep, but he did make some money! Go Miles! He was an awesome actor that day and had so much fun playing and working at the same time.

Miles and his wonderful O.T., Lilly.

Happy boy! These days, Miles has been working hard and having fun in therapy.