Reborn With a Baby With Down Syndrome

Thanks to a friend's recommendation, I submitted my story to "Her Story", an ongoing series of stories about real moms juggling their lives. I was given a camera and asked to document my life with Miles for about one week. I was also asked several interview questions which I also filmed without censoring. I sent it all in and they edited it into a beautiful 5 minute documentary about us.

I was incredibly happy and moved by the finished story and I was ready to share it with all my friends and family when I stalled. I had to rethink it all. I put myself in a very vulnerable position by sharing my story in that medium. Here in my blog, I feel like I still get to hide a little behind the words. But on film, well, you see me. You see us, our lives and that's more private. Or it it?

I thought about my reasons for having to share my story in this way and my reasons for being afraid to share. My main and only reason for not wanting to share was my fear of people thinking negatively of Miles or of me for having him. Yes, those people are still out there, they definitely exist and although I believe that they are wrong for hating, I also know that their hatred hurts. And I was afraid of being hurt.

My reasons for sharing? To let the world know what an awesome kid Miles is. To let other parents going through similar situations know that they are not alone. To create something positive and send it out into the world where others can share it and hopefully learn from it. To honor my son who I am so incredibly proud of. And on and on.

You see, what I realized once more is that I am an actress and a writer and this are my mediums. I like to express and share and explore the human condition. I like to empathize with and move other people. That's what I do. So I have to keep doing it. And that's what I did.

The video is up on the Parents Ask website. Click here to watch the video.
And share it. Please share it. That's what it's for.

Little Drummer Boy

Since Miles was about 6 months old, I've been convinced that he was some kind of jazz musician in a past life and that his instrument was the piano. Now I'm not so sure. It's very possible that he was a drummer. Or maybe he wasn't a musician at all! Maybe he's just a musical prodigy of sorts. I don't know for sure. What I do know is that he loves music and playing instruments. His current instrument of choice? The drums.
He's been digging the drums, any drum. The full blown drum kit, the bongos, the kid's drums, drumming on the table, on my head, on the floor. If he's got two drum sticks, he will turn anything into a drum. And whereas before he would kinda bang like crazy with both hands in unison, he is now learning to be more chill with his skills. He can hit the drums simultaneously or not. He can also keep a beat when someone else is drumming. It's pretty darn cool.
So click on the highlighted area to check him out in action!

How Do Others Do It?

I seriously don't know how some people have the time to manage it all; the kids, the house, the job, the marriage, the friendships..... I might seem like I'm doing it all, but I'm barely keeping it together. I woke up at 6am today and didn't get to eat a proper meal until 1pm! No shower yet either. It's been go go go.

Today I had to feed Miles, change him and get him ready for his first therapy at 8am. The therapy went a little late because I was asking her questions and advice. Then I had to get Miles to nap before the second appointment of the day, his Service Coordinator who made her annual visit today. We discussed Miles' progress and what he needs to work on. We discussed what to expect in the next year and what to work towards. We talked about the Regional Center and budget cuts and insurance and Early Intervention programs and pre-schools., etc etc etc. I figured the visit would take about 1 hour, but no! Almost two hours later, Miles had woken up and had one bottle of milk but no lunch. So he was ravenous and mad! I was scrambling to get his lunch ready and pack his bag for daycare because I needed a few hours off to clean the house and get it ready for some friends coming by tonight (don't ask me why!!). I finally dropped him off at daycare and was able to stop and eat some food before getting myself together for later.

All the while, I've been dealing with a lawyer regarding an insurance claim, setting appointments for Miles for make-up therapy sessions, calling people back, answering emails, recording voice over auditions and sending them in and planning other events. What is wrong with me?? I need to learn to say no and to slow down because I just don't have the time to do it all!

Tomorrow Miles has therapy again at 9am, followed by a music class at 11am (which I'm hosting, don't ask me why!!), followed by a mad dash to get him to my in-law's house so they can watch him while I go record a voice over because in the middle of all this I still need to work and make money!! Besides the fact that it makes me feel good to continue acting and contribute financially, I am the one who gets us our health insurance through my union. So no money means no insurance, and that's not good for us!

Just recounting all of this is exhausting! How am I supposed to make dinner, wash clothes and get in an hour of TV or reading a book? I don't, I barely do. I have to pay bills and the "To-be-filed" pile just keeps growing. Calgon, take me away!!!

So yes, my questions is, how do other people get it all done and still stay sane? Is that even possible? Maybe other people's marriages are suffering, or they are total hermits who never see their friends, or they are breaking out in hives and have stomach ulcers.....I don't know. But if there's someone out there doing it all, my hat's off to you!

I am not sane right now. I drink too much coffee and don't exercise enough. I haven't been able to dye my greys since before Miles was born. My toes look like hooker toes and my eyebrows like a 1970's model. I just need a little "me" time, but I also just want to be with my family. And I want to see friends. But I need to prioritize....and that's something I have to re-learn.

I keep thinking that I'm fine and things can go back to the way they were before Miles was born, that I can work at the same speed. But I can't. It's impossible. I have to slow down and I have to accept that things have changed and are continuing to change. Miles is growing and doing well because he has therapy and a lot of attention from us, so we need to continue doing the work with him. It doesn't just stop.

I also keep thinking that if I had a set schedule or job that I could count on, it would be much easier to plan my days. But that's not my life. I freelance. My husband freelances. We have to take the opportunities when they come and that means scrambling to find a babysitter at the last minute so I can make and audition or go to a booking. And that changes my whole day...almost every single day!

As crazy as I feel though, I also feel incredibly fortunate that these are my problems. They're not such bad problems to have. I just need to find balance and laugh it off!!

Okay, I feel better. Now I'm off to the shower!!

Traveling Helps

Every time we return from a trip with Miles, he seems to grow mentally or physically by leaps and bounds. And it's interesting because we don't really have the time or desire to practice any of the excercises we should be practicing while on vacation. Yet, he is learning and making connections. I almost feel like the time away from therapy allows him to put it all together in his brain. So I try to remember that when we are planning a trip because I always feel guilty that I'm taking him out of therapy for it. And really, traveling is such a huge learning experience, it expands ones awareness of people, places, cultures and self. And I know Miles pays attention to all of that. Every new environment he is in, every new person he meets or sees, the smells, even the new foods, they all contribute to his development and growth. And so it makes sense that he always has new tricks to show when we return from a trip!

We just got back from New York, where he got to ride the subway, stroll around in the streets of our old hoods and see lots and lots of faces every day. He loved it and seemed to have a good time, even though he had a cold with a nasty cough while we were there. He ate refried beans at a little Mexican joint at 9pm one night, he watched another baby in his stroller on the subway crying, he swang in the swings and went down the slide in a park.....all little moments that add something.

Since we got back, Miles has not stopped talking about it. He is blabbing like crazy the last few days. Now when he says "mama", I think he is truly trying to call me! I can also see him start to recognize the sign for "milk". He has also been making an effort to hold his own bottle when we feed him. In fact twice since we returned, he has fed himself for a few minutes! And not just from the bottle, but also one of those little mashed fruit boxes and today at the grocery store, he reached out and grabbed some tomatoes and put them in his mouth!

You see, we have spent a couple of months trying to get him to feed himself and grab the food from his high chair tray and put it in his mouth. It's a very difficult task for him since he doesn't have the motor skills, so it's very rewarding to see him try to do it! And it's so darn cute too!
He smiles and laughs about it. It's all a game to him.

The other cool thing he's been doing is kneeling. For the last year, Miles has had two positions: sitting and being on his belly. And when he's sitting, his legs are usually straight out and far apart. Miles is so flexible that he does splits on a daily basis, usually when going from sitting to his belly. He does not like bending his knees in any position because it's difficult for him to weight bare and it hurts. But he's been doing it on his own! If he is curious enough about something out of reach, he will now kneel and even try to get up further to grab it. He usually can't sustain it for too long, but endurance will come with practice and time. The thing is that it's all sinking in! All these months of exercises with the PT and OT, teaching him to kneel, crouch, bend his legs and weight bare are starting to finally come together in his brain and body.

It's so amazing for me to watch because when we practice something for so long without seeing any results, I forget that he will move ahead. It's like when you get stuck in one place for so long that you get used to where you're at and stop wanting to get out of it. So when you do get out of it, you can't even believe it. That's sort of how I feel with Miles and his milestones.

People still ask me about some of the bigger milestones: Is he crawling? Is he walking? Is he talking? No, he's not doing any of those yet, but he is trying to. I can see the signs, the little hints toward bigger milestones in the future. And for this mama, that is all I need to feel joy.

Miles Points and Sits

Okay, it's been a while since I get a chance to sit and write, but that's good cause it means I've been working. And things have been hectic, but we're hanging in there, still finding time to laugh about the hard times!

There are two very cool updates I want to share about Miles.
1. He's starting to use his pointer finger.
2. He can sit in his chair for like 10 minutes at a time while I read books to him.

Let me explain why these two things are so cool. As opposed to most typical children who are usually finger feeding, pinching, and grabbing small things with their fingers by the time they're 9 months, give or take a few, our kids have a tough time with that. Those are fine motor skills which are not easy for them to achieve. Miles has been using his thumb to point at things or to touch things for the last 3-4. He is not able to pinch or grasp small objects using his pointer ("grooming" finger) or middle fingers. His motor skills are still too rough so he continues to rake objects, like much younger kids do.

We've been working on grabbing small objects with his thumb and pointer for what feels like months! And finally, out of nowhere in the past 3 days I have seen him point at pictures in books with his pointer finger! I saw him playing his little piano and touching different textures with his pointer!! So the ability to isolate that pointer is finally emerging and from there will come the other fingers and the fine motor skills needed to control them and grasp the little objects, like a cheerio or a piece of egg, and feed himself!! It might still take a few months to see that, but there has been some progress and it is very exciting!

As for seeing him sit in his little chair and focus his attention for 10 minutes is also amazing for 2 reasons. Due to Miles' low muscle tone, his mid-body (or trunk/abs) is not very strong and it takes a lot of effort for him to balance sitting. Also, now that he's been doing the "worm crawl" as we call it, he knows how to get to his toys and all he wants to do is play all day long. So getting his attention for more than a few minutes to sit focused on a specific activity that I've created, while having him balance sitting in a chair is very difficult. But he's doing it!
In fact, these days, when I want him to focus on an activity, I sit him in the chair and he'll focus.

This evening I sat him in his chair and read him different parts of The Enchanted World of Winnie The Pooh and Miles sat there for a good ten minutes, completely enthralled. He was ready to keep going, but it was bath time and I was sufficiently happy that he focused when I asked him too.

It might not seem like much, but trust me, it's huge!

Therapy is Hard on Both of Us

Miles cried a lot last week during his Occupational Therapy. The therapist was pushing him very hard and he didn't want to do the work. It was excruciating for me to sit through the therapy and watch him cry. He would look at me with those beautiful eyes full of agony, wanting me to scoop him up and take him away from the pain. But I couldn't. I can't. That won't do him any good. And though it killed me inside I had to be strong and remind myself that this is for his own good. He needs to learn to have endurance, to work hard and to self soothe because out there in the real world, he won't always have me around to comfort him. It broke my heart and I had to walk away before I started crying out of pain for my baby.

There are going to be many moments like this in our future, but I have a sneaking suspicion that the majority of our moments will be filled with laughter. High pitched, open-mouthed, fun filled laughter!

Happy Birthday Miles

That's right, my little baby is now a One Year Old Toddler! In some ways, it seems like time flew by, like it was just yesterday that I was still pregnant and waiting to meet my child. But when I really look back on all that has happened in the last year, physically and emotionally, it does feel like a whole year has passed. It feels like a century has passed!

One year ago, my heart ached so much for the baby I wanted to have and didn't get. I felt like the Universe had betrayed me and I would never feel happiness again. Now I feel happiness every time I look at my Miles and I feel completely blessed by his presence in my life. The Universe did not betray me, instead I can clearly see the path that led me to this moment and how prepared I was to deal with it.

One year ago Miles lay next to me, barely opening his eyes or making any sound, his skinny little legs and soft mushy body seemed to fragile. It took him months to gain strength in his neck and to move around at all. We could put him down on his side or back and he would not change positions for hours. Now, this little dude can't be contained!

Though he is still not crawling, he is doing "the worm" at lightning speed. In the last week, since he turned One, he is finally changing positions with ease. He can go from prone (on his belly) to sitting up and back to prone in seconds. Although he is still soft and cuddly, he has so much more strength in his spine and torso. When I hold him, he fidgets around like other kids his age and I can feel him using his muscles. But the most amazing new development since Miles turned One is that we had to put his crib mattress down! That's right, little man has managed to pull himself up on his crib a few times now! He can't sustain it though, so he ends up falling backward and getting his neck stuck on the bar. Not a good thing....so we moved the mattress down.

Miles is also very busy and curious. He loves playing with anything! Balloons are a new favorite and he can sit for a half hour pulling on a string with a balloon at the end of it. He'll crawl around the office knocking down garbage cans, into the kitchen where he bangs on the cabinet doors (he hasn't figured out how to open them yet), into the dining room where he plays with the rug. He'll sit in front of a mirror and excitedly yell at his reflection. He eats just about any food, seems comfortable with most people in any situation, and loves watching older kids. He no longer hits the guitar but gently strums it.

Miles knows that I am his mom and Zach is his dad. He gets excited to see us and comes towards us so we can hold him. He understands when we are mad at him and he knows how to get what he wants. I mean, I could go on and on and on. The reality is that so much has happened in the last year and these are just some developmental milestones!

These are all things I didn't know if he would ever do! I was so afraid a year ago. I didn't know what to expect and talking to other people usually made it worse because they didn't know what to expect either. So far, Miles has shown me that he is bright and strong, resilient and curious, good-natured and stubborn. It can take him a while to learn something, but once he gets it, he doesn't forget. And he doesn't give up.

Every day of my life with Miles is filled with wonder, magic and joy....sprinkled with exhaustion, frustration and guilt. But that's life and it ain't so bad. In fact it's great.

Happy One Year Birthday my boy!!! I look forward to this new year of life with you!