Happy 2nd Birthday Miles!

September 1st, 2011.
Two years ago today I experienced intense fear, love and joy. Two years ago today I was given news that changed my life forever. Two years ago today I was blessed with the most amazing baby boy I could have ever dreamed of. Two years ago today Miles was born.

When I think back at that day, it feels like it was yesterday. I can picture so many details of the operating room where I went in for my c-section: the bright lights, the instruments and cables, the distance from the operating table to where Miles was placed in a warmer. I can remember my anxiety and excitement at the thought of being mere minutes away from meeting my son. And I will never forget the pediatric nurse who came into the recovery room to tell us our son might have Down syndrome. I will never forget my reaction or Zach's face when she told us. It really feels like it was just yesterday.

At the same time, I can feel the two years that have passed since that day. When I look at photos from then, I see how much we've changed. Having Miles and being a mother has made me grow. I work on my patience every day. I am more forgiving, empathetic, compassionate, loving and wise. I am more fierce, courageous and strong. I live in the present moment as much as possible. All these qualities were already in me, Miles and motherhood have made them really come out.

Two years ago I didn't know if I'd ever feel happiness again. Two years ago I was plagued with fear, anxiety and depression. Two years ago today I found out who I truly am.

Today I feel happiness and love so intensely I never knew it was possible. Today my fears and anxieties are followed by courage, laughter and reassurance. Today, I wouldn't want to know a world without Miles. I am blessed to have him as a son and to have Zach as a husband. I love my life with all it's craziness and uncertainties. I love that I get to share it with these two amazing men and soon enough, with a little lady!

Happy 2nd Birthday to my sweet, beautiful, funny and very special son, Miles!

You want to see what Miles has been up to? Check out this little video.....





Or click on this link if the quicktime is too slow for your computer: http://vimeo.com/28432823

It's My Decision, Don't Judge

Miles was sick with the croup last week. He's fine now, but in the middle of it he was waking up at night, unable to breath well. On one of those nights I got up at 4:30 am to soothe him and put him back to sleep. Within 20 minutes he was back down, but it took me over an hour to fall back asleep. It was a combination of hunger and anxiety. My stomach was growling but I refused to get food thinking that would make me even more awake. I figured if I lay in bed long enough I would pass out, like I normally do. But there were all kinds of anxiety thoughts swirling in my head. I couldn't push them away and an hour later I was still awake.

Miles was born via planned C-section. See, I had a Myomectomy (uterine fibroid operation) a few years prior to having Miles. My particular fibroid was attached to the top part of my uterus and embedded within the muscle. T.M.I.....sorry! Point is, the scar is not at the bottom of the uterus like they are with c-sections, it is all the way at the top. The part of the uterus that expands and balloons out during pregnancy. My doctor feared that with the scar having expanded so much, it could rupture during labor and I could bleed to death. Not cute.

The doctor explained all of this to me (even drew pictures) and said he recommended that I have a cesarean. I was devastated. I had been reading all the books, eating well, staying strong and flexible, doing my yoga, basically preparing myself mentally and physically for a natural labor. I knew that I was capable of doing it and I wanted to go through it and allow my body to do its thing. I wanted to experience the most natural, intense and God-given right that we have as women. I cried. I felt cheated by my body. But the decision was still up to me. That was just my doctor's recommendation, he didn't say I had to do it. So I sat with that information for a few days. I searched my spirit to see what I should really do.

Should I challenge my doctor? The same doctor who performed the Myomectomy and did well enough that I was able to get pregnant in the first place? Should I get a second opinion? Should I be stubborn and stick to my guns, do what my body was "meant" to do as a woman? No. The answer was no. See when I searched myself, I realized that I always knew, deep down inside that I would not give birth naturally. Maybe my body was not "meant" to do that. Yes, women have been giving birth naturally since time eternal, but they didn't all make it. Nor did their children. Just think as far back as your grandmother. How many of our grandmothers lost children during birth or became so ill they almost didn't make it themselves. As women, it is our design to give birth. Our bodies are built to have children, but that doesn't mean that the circumstances and conditions will be right when it comes down to it. And some women simply can't do it. Maybe I am one of them. I can conceive and carry a child, but maybe I'm not meant to deliver them naturally.

In fact, I don't need to look as far as my grandmother. I need only look as far as my mother, who almost hemorrhaged to death while giving birth to me. She had to have a blood transfusion, right there on the table from the doctor's arm to hers. The doctor happened to be her father, so he knew her blood type and acted like a champ and saved his daughter's life. And a few years later, during my brother's birth, my mom actually had a heart attack, flatlined and had to be brought back. Yes. She saw the white light, then came the paddles, clear, the whole thing. She ended up having my brother via emergency c-section and they were both safe.

Okay, if you're pregnant and reading this, I'm sorry, I don't mean to scare you. This is my history and part of why I made my decision to have a cesarean. It's got nothing to do with you, we all have our own very different histories to explore. My sister was the first born and my mom had a typical, natural delivery with her. And when my sister gave birth to her daughter, she did it naturally and within two hours. So like I said, this is my story and in no way should influence yours.

After careful soul searching, I knew that having even the slightest possibility that my scar could rupture during labor and that I could bleed to death would keep me from allowing my body to do what it was supposed to do. I could feel that I would hold back because of my fear. And maybe I gave in to my fear, maybe I was being overly cautious, maybe I could have delivered Miles naturally. Maybe if worked harder to deal with my emotional demons, I could get past the fear to deliver naturally. But I know me, and I knew that it would hold me back. So I chose the cesarean. And then I spent the next 4 months having to defend my choice. And this is where my current anger, fear, anxiety stems from.

There is a stigma attached to women who choose to have cesareans. I did it for a medical reason or maybe it was fear, but that fear was based on a medical reason. The point is, it was my choice. And I am now finding that once again I have to defend my choice. After speaking to my doctor this time, we both felt it was safest to do another cesarean for baby #2. And I feel comfortable about that choice for mine and my baby's safety. Yet women are constantly trying to convince me to try and give birth naturally this time. Other women give birth after a cesarean. It's called a VBAC. Yes, I know this very well. Trust me, read all the books, took the class, etc. It's not me, it's not my story. I have to defend my position.

I love my yoga and have been going to pre-natal classes recently, like I did with Miles, and everything is always geared for natural birth. "Make these sounds, bond with other women, feel comfortable having other people touch you and see you in uncomfortable positions, do squats, don't be afraid to yell"... and on and on and on. I do all of it. I go with it because I like to bond and I'm not afraid of being loud, the whole while knowing that I won't be using these techniques because I'm having an operation. Yet I keep going because I'm working on keeping my body fit, for a fast recovery and my mind strong and flexible so I can get through the operation. Because it's scary! So I have a problem with women judging my decision to have a cesarean. I don't judge their decision to give birth naturally. Shit, I applaud them! I wish I could do it. It's got to be so difficult and scary, yet beautiful and emotional at the same time. So when I get the attacking comments, looks and stares, I feel like they are trying to diminish my experience. As if I was a terrible person for choosing to make sure I didn't die during labor! As with everything in life, it's all about strength and flexibility. Women need to have the strength and courage to go through the fear and pain, and the flexibility of heart and mind to go with the flow. Even if the flow is against our original plans. I didn't want to have a c-section, but I had to be flexible. I didn't want to have a child with Down syndrome, but I had to be flexible. At the end of the day, the way your baby comes into this world is not as important as your baby coming into this world, healthy.

In the prep room where I got hooked up and tagged before going into the OR

I am not preparing to push a baby, but I am preparing for an operation that though routine, is still an operation. And to me, it's scary! I have to go into a hospital (I hate hospitals), have huge needles poked into my veins and back (I'm afraid of needles, even when they draw blood!), go through the freaky feeling of my body being numbed from the waist down. Essentially feeling amputated. Seeing my baby for the first time but being so groggy that I can barely move or react and then feeling like a junky coming off drugs when the anesthesia wears away? It sucks. The whole experience is totally intense. My body goes through trauma. My mind needs to be strong and remember that I will be fine. I will feel my legs again and I will be able to breath well again and that the teeth chattering and cold and hot flashes are just part of the drugs wearing off. I need to be courageous and go through it because I have a baby in my arms and I need to nurse her and take her of her now.

Miles and I in our room just hours after he was born.

What am I getting at? It all counts. Bringing a child into this world is a beautiful, intense, scary, and tough experience no matter how you do it. We all get battle scars at the end of it. And since we are all different, we chose to go through it in different ways. But it all counts. Even though I've already had one cesarean, I am still afraid of going through it again. I'm probably more afraid this time because I know what to expect. And that's why I was up for over an hour the other night. I had anxiety about what I need to go through again to have this baby. And that's why I continue going to yoga, to focus on my breathing, my strength, my courage and flexibility. All the things that will get me through this experience once more. I am afraid yet I know it will be okay.

So please, don't judge. This is my journey, not yours.

Learning and Traveling Go Hand in Hand

What has Miles been up to lately? I'll tell ya....trouble! Nah, not really. But he is mischievous, strong willed and fighting for his independence. He's a toddler. And he'll be 2 in just three weeks! Time flies!

Is Miles walking yet? No, of course not. I would have already told you!!!! But he's getting closer and closer. He grabs my fingers when he wants me to walk him around the house. It's cute seeing where he wants to go. This afternoon he wanted to walk from the couch in the playroom to his chair in the living room. Then he handed me the remote control to turn on the TV. He knows too much already!
His physical therapist took him for a walk down the block and back this week. That's the longest walk he's taken! Oh and he has taken a couple of steps on his own in the past few weeks. He gets really excited, steps twice and then tumbles forward. It will happen soon, I can feel it.

He also picked up a new sign a couple of weeks ago while we were in Portland at our friend's wedding. The sign for "car". And it makes sense since his current interest is switching from balls to cars. So now when he sees cars, which is all the time in LA, he does the sign for car. Adorable! And when I asked him in Spanish to show me the sign for car, he did! It always blows my mind when he knows what I'm saying to him in Spanish. I mean, it shouldn't since I speak to him solely in Spanish, but still, everyone else around him speaks English and it's what he probably hears most. But he understands me and it gets me every time.

Speaking of the wedding in Portland, Miles was the last kid standing! He danced with us until 11 pm, loving the sounds, music and dancing! He was so tired after dinner and we tried for about 45 minutes to get him to sleep, but to no avail. Little man wanted to be part of the action. So we said, "Screw it! He's tired but he ain't cranky, so lets go dance!" And we had a great time.

But traveling with Miles is not as easy as it used to be. When he was 6 months old, we took him to Australia and he was amazing! Slept for 12 hours on the way there and ten on the way back. We've flown to NY twice, Panama, Philadelphia and San Francisco and each time it's been easy. He plays a little, eats his food, falls asleep. But now that he's a big a boy and wants to explore everything, he is a handful. It's only a two hour plane ride from LA to Portland and Mr. Miles was busy! He needed to talk and yell and move around and touch everything. He didn't want to sleep or eat or drink anything. He wanted to touch the head of the guy in front or bother the one behind us. He wanted to stand and say hi to everyone. It was cute really, except for the fact that you know half of the people around you don't like kids and the other half like them but want to be left alone. We came home extremely exhausted from our trip. But as difficult as it was, it will not keep us from traveling in the future. Every time we take Miles out of his routine he flourishes and comes back with new tricks. I think it's probably the best part of his "therapy".

Following are photos from the last few weeks. Enjoy!

Miles looking out the plane window on our way to Portland.

Miles taking a walk with Daddy.

Splashing around in a fountain.

Riding the train in Train Town!

Posing with Abue in Train Town!

Food Comes First

I had the most delicious grilled calamari dinner last night, sitting at the bar of a beautiful restaurant all by myself. I struck up conversations with the bartenders and the people sitting around me. It was a lovely meal, I felt alive and happy and full energy while just an hour before I was ready to pass out from hunger and exhaustion. Being pregnant and taking care of a toddler is tough work!! Every woman's pregnancy is different. For me, this one is all about food. The endless search for food. Food equals energy. And I can't have the same kind of food all the time; I need variety! Lots of it! I never know what I'm going to be in the mood for, or what's going to gross me out. So I spend most of my days thinking about, making or searching for food. Oh yeah, and taking care of Miles, making sure he's fed and happy. I'm telling you, it's exhausting!!

So yesterday afternoon, I knew things were going south when I looked at my fridge, full of leftovers and I felt like crying. I was tired of lentils and black eyed peas! No more chicken please!! Rice? Salad? Frozen pizza? Meat pie? Yuck, yuck yuck! On Monday I spend the day cooking so I would have enough food for the rest of the week. But by Thursday night I could not look at one more piece of chicken. I was starving and had no idea what I was actually in the mood for. I just knew that nothing at home appetized me. I still had to feed Miles, give him a bath and put him to bed. But all I could think of was, "What am I going to eat tonight??". Miles was probably hungry and I could tell he was tired, but I just couldn't get myself off the grass and get things started. When I'm that hungry, not only do I get tired, I get angry and sour and I feel hopeless. It's depressing really. Just when I was ready to cry, Zach showed up early from work! Woo-hoo, my salvation! He was tired, but was ready to take care of Miles because he hadn't seen him much in the last few days.

He took Miles inside the house to wind down and get ready for dinner. I'm standing in the kitchen, looking at the mess around me (because the kitchen is usually a wreck by the end of the day), still trying to figure out what on Earth I want to have for dinner, when it hit me! I want to go out for a nice meal, in a beautiful restaurant, with other people cooking and cleaning. I don't want anything heavy or greasy, but fresh, clean and fancy. And I must have it now!! So I call out to Zach to see if he'd like to join me for dinner while I scan the names of babysitters in my head. Someone might be available right now, it's still early and if all fails, I'll call my mom (though she had already spend the day helping me with Miles). To my surprise, Zach didn't want to go out to dinner. He had a huge lunch and wasn't hungry. But he could see from my face that my need to get out of the house for a fancy meal was intense (and probably irrational). But it was real. So without skipping a beat, he told me he'd put Miles to bed and I should go eat right away. So I did!

I threw on some jeans, combed my hair and flew out the door. I knew exactly where I wanted to go and it was only three blocks from my house. So within ten minutes, I was sitting at the bar, ordering grilled calamari, a bottle of mineral water and singing along to Michael Jackson's "Billy Jean". Ahhhh....heaven. I am so fortunate that my husband knows me so well, understands how important food is to me (especially when I'm pregnant) and doesn't have any problem taking care of things at home. Ninety minutes later I was home with a full belly and a smile on my face, enjoying the rest of the evening with Zach!

Big Brother Miles!

We made small talk with the doctor. He was funny. I thought I was relaxed, but when I started laughing a little too hard, I knew I was tense. Uncomfortable. Nervous. After all, the results from this test would tell us if this baby had Down syndrome too. Yet I was feeling positive. I've only heard of two cases where the parents had two or more children with Down syndrome. So we should be fine, right? Then again, our chances of having one child with Down syndrome were 1 in 8,021. Those are some huge odds. We were that one.

The test itself was quick and painless. It was similar to a pap with the clamps being the worst part. The best part was the prep before the procedure. They did a very thorough ultrasound, 3D and everything. They checked baby's length (almost 2 inches), both arms and legs, all the fingers and toes, right and left hemisphere of the brain, heart pumping at 163 beats per minute. Baby was asleep at first but suddenly woke and started dancing! What? Baby was moving it's arms and legs to the beat of a silent drum. Then turning and spinning, finally mooning us as if to say, "Leave me alone, I wanna sleep!" The ultrasound technician laughed. We all laughed. A little tear rolled down my cheek.

Miles was never this active on the ultrasounds. We saw him hiccup, cross and uncross his legs, suck his thumb....He was much less active, mostly just laying there when we visited him via ultrasound. When he was born, he was the same as most newborns. Sleepy. But he didn't just sleep, he barely moved. His skinny, hypotonic arms and legs didn't have the strength to lift on their own. He didn't cry. We didn't hear his cry until he was about four or five weeks old. He made little birdlike noises, we knew he had vocal chords. But no crying. And three months later, when most infants were starting to be quite active, lifting their heads, rolling onto their tummies, Miles was still just laying there. Unable to move without our help. But he was always watchful. From day one he had that laser eye focus. When he looked at me, he looked as if he could penetrate my soul. He'd stare at people, plants, things and in his head, something was computing. He can still do that to this day. Of course, now he's Mr. Curious and Mr. Active and Master Mischief. How far he's come along.

On our way out of the room I grabbed some crackers and juice they had in a basket. The procedure took just ten minutes, but the wait was nearly two hours. I was starving and ready for bed. Which is what I got. A delicious homemade chicken soup in bed as I now had bed rest for the next 24 hours. My guilt free staycation! I was looking forward to this part. I was not looking forward to the two and a half day wait for the results. That's exactly how long it took to get the results for Miles when he was born. I couldn't help but remember that horrible time in the hospital, taking care of my newborn, wanting to rejoice in his birth but feeling the overwhelming fear and anxiety that something might be wrong with him. Knowing in my heart that the result would be positive for Down syndrome, but wanting to believe that it was all just a big nightmare.

This time was different though. I was home, in my own comfortable bed. The food was good. I had a toddler cruising around and it didn't make me sad to look at him, it made me happy. He made me laugh with his energy and love. I was nervous waiting for the results, though in my heart I knew they would be negative for Ds. But still, the wait was killing me! I did everything possible to keep busy and not think about it. I read my book, did some writing, connected with friends, worked on the garden, played with Miles, zoned out on facebook, researched the news, but by Thursday morning I couldn't take it anymore. They should have called yesterday! I was starting to feel depressed, the anxiety was making me tense but I was told to do no exercise for a whole week. So now what? How do I cope with this? Then the call came at 9:11am. It was Kit, the genetic counselor we saw two weeks before the procedure. She was sweet and I heard elation in her voice.

"I have good news," she said.
Oh my God.....I exhale, "Please tell me!"
"The results came out negative for Trisomy 21 (Down syndrome), Trisomy 18 and 9. And the gender chromosomes are all normal."
"What does that mean," a hint of fear in my voice.
"It means there's no extra X or Y chromosomes either. It's all good."

Silence. I am silently thanking God and the Universe and just taking it all in.

"Do you want to know the sex of your baby?", she asks.
"Yes!"
"Miles is going to have a little sister. You're having a girl!"
"Oh wow! That's awesome! Thank You Thank You Thank You sooooo much Kit! This is the best news ever!"

I went on and on about how happy I was for her phone call. I was doing my nervous laughter thing again, but this time it was out of relief. My whole body was trembling as the tension I'd been feeling the last few weeks finally passed out of my body and onto the earth. She laughed and said she was happy too. She wished me a great day and hung up. And I sobbed. I sobbed as hard as when I found out Miles had Down syndrome. And though I was sobbing out of happiness, there was a tinge of grief in there. Grief for any negative thoughts I'd had in the past few weeks? Grief for the fact that Miles has Ds and his sister doesn't? Grief because I needed to hear the results so bad and now the wait is over? I don't know. I just allowed myself to go through it, to let it out because I certainly didn't want to call my husband while I was sobbing and give him the wrong impression!

So when I was good and done, I called Zach and simply said, "It's a girl! And she's fine!"
"It's a girl!", he repeated.
"Yes....and so far, so good!"

So far....so good. There are still so many hurdles to pass in the next six and a half months that for now I rejoice! This new journey will pose an infinite amount of challenges, fears and anxieties. But it will also bring so much love, joy, laughter, and excitement. And as with everything, it's about taking it one day at a time. That's it, simple as pie.

Miles is gonna be a big brother!!!

Gotta Stay In Check

Peek-A-Boo!

Preschool? Potty training? What's everyone talking about? I'm still hoping Miles will start walking in the next 6 months, those other things seem so far away for us. And they are. I mean, Miles will continue on his Early Intervention path for another year, unless the government cuts funding or Regional Center cuts us off. But if all stays the same, Miles will continue with PT and Infant Stimulation at home, and OT and Speech at a center. And we will continue to take him to daycare 2-3 times a week so he can play with typical kids and we can have a break from his lovely yelling. So when my friends start talking about preschool, I feel so lost. I mean, I'm not even totally sure what happens once he's 3 years old.

From what I gather, if we want to continue receiving any sort of government services, we have to stay in the public school system. But what does that mean for a 3 year old? Are there public pre-schools? Of course there are, not all parents can afford $12,000 in preschool tuition a year. But I don't know the first thing about that. Everyone around me is looking at private or church based preschools. I should take a meeting with our Regional Center coordinator to get some information, but I'm afraid of calling attention to us right now. Miles is receiving so many great therapies and I don't want to rock the boat, lest they decide to look at his file more closely and cut some of his therapy hours. (I've heard stories of it happening to other people, though we have a great coordinator who so far has really helped us out.)

Really, I need to do is my own research. Talk to other parents, use the Google machine and find out what is available to my child at all the different stages in his life. How else am I gonna be his best advocate if I don't even know what's available to him? But man, I am the worst at researching and calling people on the phone!! These are not my strengths people....but I will do it. I promise I will, for Miles. Because he deserves the best education possible and I will find it for him! I hope.

Oh yeah, and potty training? I can't even begin to contemplate that one. Miles has no problem hanging around with a soiled diaper all day, let alone a wet one. He is just beginning to discover his "winkie". Right now, our biggest hurdle is trying to get him to drink out of a sippy cup!! We are in a different place that our friends with typical kids. I knew this would happen, but sometimes it takes me for a loop. And honestly, that's okay. It keeps me in check. None of that stuff is really so important. Miles will walk and drink out of a glass and talk to us in sentences and wipe his own butt.....all in due time. What's important is that Miles is happy and healthy. That we are happy and healthy. And that we can look at these moments and situations and laugh rather than cry about them. This is where we're at. It's not where we thought we'd be and that's just fine by me.

I see you!

The Future

I don't like looking too far into the future because it usually scares me. I can see a few months ahead, maybe even a year, but beyond that, I start thinking about Miles and what he might or might not be doing. I get scared when I think about the challenges we'll face once he's in elementary school, middle school and high school. I remember how hard it was just to be a typical kid in school, I can't imagine what it's going to be like for Miles. And for me. How am I going to feel letting him go off into a world who doesn't love him as much as I do? I know I'll be happily surprised at times, there are some beautiful people out there. But the mean people can really scar us.

And what about after high school? Most people joke about how great it will be when their kids leave the house and go off to college. Or get a job and move out on their own. I want to envision those things for Miles and it is possible that he can achieve them. But I also have to think of the alternative; that he will be with us for the rest of his live. Honestly, for me it doesn't seem like a terrible thing to have my happy, loving son with me all the time. But what about for him? Will he want to live on his own and get married and do all those things other people get to do? Will he feel cheated in life? I hope not. But I don't know.

And what about later on? What happens when we get old? Who will take care of Miles if we can't? What if he gets early onset Alzheimer's and needs constant attention? You might not know this, but the incidence of Alzheimer's on people with Down syndrome is 3 to 5 times higher than that of the general population. And because people with Ds also exhibit signs of premature aging, they can start showing signs for Alzheimer's anywhere after 35 years of age. I saw my grandfather go through Alzheimer's and it's a slow and difficult disease.....the last thing I want to see my son go through!

Look, I get it, we all worry about our children, regardless of who they are. Maybe my worries are just a little different than most. I'm not worried about him becoming a drug addict or anorexic or a serial killer. I'm worried about him not having a full life. I'm worried about him being unhappy or excluded. I'm worried about his health. And I'm worried about how I'm going to deal with all these challenges emotionally. I'm worried about all the pain I will go through if I see my child suffering. Nobody wants to see their child suffer. So why think about the future and all the "what ifs"? Live in the present as much as possible! That's what I try to do. In fact, that's another one of the many gifts Miles has given me.

When I was in my twenties, I used to spend so much of my time living in the future. I'd freak myself out and have panic attacks just thinking about life after college. I wanted to tattoo my wrist with the words: Live Here Now, so I'd have that constant reminder. Somehow I got through my twenties without the tattoo. Besides yoga and meditation, I think diving into life with more courage than fear is what really helped! And every time I forget, Miles reminds to live in the moment. That's his M.O. and I love it!