Welcome to my blog! The posts are listed by date, with the most recent on top. Enjoy.

Thursday, May 27, 2010

This photo was taken in the hospital when Miles was a day or two old. His first smiling photo!

Wednesday, May 26, 2010

Out of Balance

I feel like crying today. I'm tired. Exhausted really. The last 9 months are catching up with me. All I want to do is lounge in the Fijian sun, sip fruity drinks, swim in the warm ocean and sleep. Sleep for 12 hours straight. I want to wake up refreshed and ready to face the day without coffee. I want to play with Miles, laugh with him and cuddle him. I don't want to deal with feeding him at 5:30 am or make him take his naps even when he doesn't want to. I don't want to stress about the balance between my mommy life and my work life. I don't want to feel guilty if I haven't spent at least one hour a day practicing stretches with Miles. I want him to be able to just play like other babies. Right now, I just want to get away from it all, I want everything to be perfect....whatever that is.

I feel like a yo-yo. One day I'm full of energy and excitement about everything, baby, work, husband, home....then the next day, I don't have the energy to take a shower. I'm not a depressive person, in fact, I've always been very positive. But I do need sleep to function and I need balance. These days, the toughest thing to find is balance. When I have some free time I am torn between sleeping and getting things done. Do I clean the house, do the laundry, answer emails, write in my blog, catch up on my tivo, exercise, meditate, sleep? What to do? I get nothing done.

Balance. It's all about balance. Right now I am all out of balance! Ommmmmmm.


I have felt a lot of regret because we didn't take enough photos of Miles when he was born. I just went back and looked at all the hospital and first week photos that I have and there's just a handful. In fact, there isn't one photograph of Zach, Miles and me at the hospital as the "Happy Family". There are just a couple of pics of Miles and me and another few of Miles by himself.

For a fee, the hospital would provide a professional photographer to come to your room and take pictures of your beautiful new baby and family. The photographer stopped by our room to see if we were interested in having the photos taken. It took everything in me not to yell at her, "My baby has Down syndrome, can't you tell. We don't want any pictures!!"

I think we were scared to take pictures of him. We were afraid of what those photos would tell us about ourselves, more than about him. And I regret giving into my fear, because now I don't have many photos to show off or remember the occasion.

As I look back at the pictures that I do have, I am glad to see that amid all the fear and sadness, there was a lot of love and it shows. I might look like I got hit by a train, but I look happy. And Miles, well, he looks beautiful, as always.

It's amazing to look at those photos and realize certain things that I had already forgotten, like the fact that Miles had a herniated belly button. It looked like a water spout and we were told it could take up to two years for it to go back to normal. It only took about 4 months!

He had really skinny, bow-legs and we were afraid that he would need orthopedic shoes to straighten them out.

He now has chunky turkey legs which look perfectly straight.

He had a receding hairline; he now has very cute bangs that cover his forehead.

He had a sweet little angel pout when he slept....he still has that.

He would clasp his hands by his chest in a prayer position; he still does that. And he would stare at you very seriously and focused for minutes on end. You felt like he was looking into your soul. Well, he can still bore a hole into your soul, but he'll always crack a smile now to let you know he's just messing with you!

I still regret not having taken those professional photos. I was afraid of what those photos would reflect back to me and I let the fear stop me. Trust me, I will never let that happen again!

The "Happy Family" when Miles was 3 weeks and then at 6 months old

Friday, May 14, 2010

Okay, so I've had absolutely no desire to blog in the last week but I'm gonna make myself do it, because I've got some time right now and need to keep it up.

Miles is doing great! He started Physical Therapy (PT) this week. So now he has PT, Occupational Therapy (OT) and Infant Stimulation (IS) on a weekly basis. He's working so hard in his classes, they stretch him and play with him and challenge him and though he complains, he pushes through. I feel so proud of him. But I also feel sad for him. I feel sad that he has to work so hard to do things that come naturally to other children. Like transferring an object from one hand to another. How many of you even noticed when your kids started doing that? It probably just happened one day and it became part of the norm. We have been working with Miles for weeks so that he can transfer a toy from his left hand to his right. And every time he does it, it's a big deal.

See, he's gonna do everything other children do, just at his own pace....a somewhat slower pace. It can be frustrating and sad and nerve wracking at times, but it is also so wonderful to watch! I get to watch his learning process in slow motion, actually see him make the connections in his brain it seems. So when parents say, "they grow up so fast!", I can agree to a certain extent. Because once Miles finally accomplishes a task and really gets it, I feel ready to see him move on to another.

Right now we are working on getting him to understand that the lower and upper parts of his body can move independently of each other. In his therapies, he is doing a lot of twisting and bending and alignment work. He's basically doing baby yoga! It's pretty awesome to watch! And he responds to it very well. Yes! I look forward to teaching him yoga when he's older.

For me, one thing that has been amazing to realize is how so many of the things I have done in my life, mentors I've had and interests that I've developed, have been preparing me to deal with having a child with Special Needs. I guess it really was in the cards, because I feel like so much of my life up to this point, has been preparing for this. Little by little, it's all starting to make sense and I am excited and scared to see what the future still has in store for me!

Saturday, May 8, 2010

My First Mother's Day

When I was a kid, I enjoyed making elaborate Mother's Day cards for my mom and jumping in her bed that morning, smothering her with gifts and kisses and breakfast of pancakes and fruits. It was so sweet. But it's been a while since I've celebrated Mother's Day with my mom and I had forgotten what a beautiful celebration it is. Without mothers we wouldn't exist. They literally create us in their wombs and nurture our bodies and souls. My mother hugged and kissed me, she pushed and challenged me, she supported and believed in me. And she still does, even though I'm all grown up!
With my new perspective as a mother, comes a new respect for my own mother, and mothers in general. I am so lucky for my mom and all the wonderful mothers that helped me be the woman and mother that I now am.

Miles gave me my first Mother's Day card with his hand prints on it. It made me think of all the cards I handcrafted for my mother and I nearly cried. I never thought I'd be so sentimental about a "Hallmark Holiday". But it meant the world to me because I get it now. I get it. I'm a mother and I understand the sacrifice is worth it. The love I get from Miles, his smiles of recognition, the sweet hugs and excitement.....they are the best gifts ever. And they make life worth living.

Nursing Miles

I never thought I would breastfeed. Scratch that. I never thought I'd have kids. I figured if I wanted kids, I would adopt. And if I ever did have kids of my own, I sure as hell was not going to breastfeed them. I found the whole thing kind of gross unnatural. Don't ask me why; I had issues. Man, how things change! When I turned 32, not only did I want kids, I actually wanted to give birth and nurse them too!
I feel very lucky that Miles was able to nurse from the beginning; that I could produce milk and that he could latch on properly to drink. You see, about 50 percent of children with Down syndrome are unable to nurse due to their low muscle tone, which affects their mouth muscles as well. Yet another wonderful surprise from Mr. Miles--that he could nurse even though he "wasn't supposed to be able to do it". And so, here we are, eight months later, still connected to each other several times a day while I nurse him. Besides the obvious health benefits, it also helps the muscles in his mouth develop, which will be beneficial with eating and speech.

Breastfeeding is actually harder than people think...just ask any mom whose done it or tried to do it. I know I've had it easy. Miles latched on within his first hour of birth and has been sucking every since! As much as I love it, I do go through moments of wanting to quit almost daily. But every times he is at my chest, looking up at me, smiling and playing with my hair while he drifts to sleep, I feel so in love and so fortunate to have this time with him that it keeps me going. I'd love to make it to a year, but I take it one month at a time. We'll see how long I last.....I'll keep you posted.