rockin' and rollin' maya

on sunday, august 31st maya did her first roll from back to stomach without anyone's help. i don't seem to have time to write much these days since i'm busy with work, home and maya but i just had to write this major milestone down for everyone to hear about it.

my focus has been filled with mostly maya these days. it's almost six months now since she was born and i'm loving every minute of this adventure. time seems to go by so fast and i keep looking at the days fly by and wondering at every session of our physical therapy whether or not she is "on time". i imagine that if she didn't have down syndrome maybe this wouldn't be such a big deal to me. every day that goes by i work with her on one level or the other to improve her gross motor skills and her speech/communication skills.

for the last few weeks we have been working intently on "rolling" since she has mastered her head control and is doing pretty well on sitting as well. every wednesday we have pt (physical therapy) and to be honest i could not see much improvement with the rolling. well on sunday it all clicked for her. there they were (her dad and maya) just laying on the bed while i did my morning showering...and she rolled without a hitch. the whole day i just wanted her to reenact the event so i could record it in my video camera. i couldn't help but feel so proud of her and her accomplishment. of course i hadn't thought of the fact that once you get onto your belly, how the heck do you get out of it?

it's funny how one tiny roll can lead to worry, because the rest of the day we just were watching as maya flopped over on her belly, and eventually became tired of holding her head in the up position. the amazing thing is that i really didn't worry to much about it because maya is really a tough nut. usually she will let you know if she doesn't like something. and sure enough soon after her head flopped down on the surface she would give a loud "growl" to let us know she was ready to flip over.

only three days later...at her therapy session, the therapist was showing her how to rock back over from her belly to her back again. i had been trying to show her myself, but when the therapist did it, maybe it all just clicked in for maya. in less than 12 hours from her pt, maya was able to roll from back to belly and rock herself from belly to back again. it was so amazing to see this! i really couldn't believe it at first, but she had done it, all on her own!

i'm writing this down mostly for myself, because i don't want to forget this amazing thing that happened in my life. i keep saying this over and over again but maya amazes me every day. and i feel so blessed to have her be mine.

maya the fighter

yesterday was maya's first speech therapy session. i'm so grateful that we have found a therapist that will take maya on so early in her development. maya seemed quiet that morning with this new lady in her life. she blew some raspberries, smiled a bit, but didn't utter a sound other than what i call her "growl", when she became wet. i couldn't help but ask the therapist if she is far behind at this stage. it might seem to others a strange question to ask. maybe not in a good way. but i ask these questions because i want to know what i can do to help my daughter. the fact is that we will have to work a little harder at reaching "milestones". i know that maya will be able to accomplish very much, but this will not come without hard work.

later that day maya and i went to a mom's group. there i met an almost 3 month old who was already holding his head up and was able to sit up (with some assistance). i haven't been able to really sit next to another baby while maya is with me, so seeing this really hit me. i realized then that my maya is for sure a little behind. at 5.5 months she had just mastered her head control maybe a month before that. people tell me all the time that babies develops at their own pace, but it's also known that babies with down syndrome develop at a slower pace then average. speech, physical and occupational therapy is designed to help her keep up. and i see that it certainly does help.

for a minute i felt a little sad. maybe because i wished i could take "normal" development of my daughter for granted. as others might just watch as their children to do the little things that babies do as they grow up, i will have to work at them with her. but then again i will always have something to boost about. i do see that i always have something to tell my friends when they ask how maya is doing. i'm very aware of all the little accomplishments she earns. and i don't mind sharing them with others.

lately i've been thinking i need to write all these little actions down, so i won't forget them. one of the amazing things she is doing now is grabbing at toys. this might not seem like a big deal but i see the energy that she has to use to move her hands towards the toy and the will in her eyes as she struggles. when i dangle a rattle over her, she eyes the toy, and her hands open instantly. i notice right away how she is working so hard to move her hands because they shake with all the effort. sometimes they don't move for a long while, they just stay there and shake.

this week i have been noticing the difference in her effort to grab the toy. she is now able to put both her hands up to her little soft cube toy, almost right away. i try and cheer her on with a happy clap and "yeaaaah maya!" it makes her smile at me sometimes. i'd like to think she is smiling also at herself. every time she does this i feel so lucky to share this experience with her. and know that she is a fighter.

flowers at the swings for evan

for evan
a beautiful boy
i photograph this flower
on a swing
in memory of you


as dedication people are photographing flowers in swings. evan was very fond of swinging, as his mother writes in literary mama in this article titled, The Mother on the Swings.

check out other photos dedications at Swingset Flowers for Evan Kamida on flickr.

celebrating month 5 as a family

today is maya's 5th month birthday as i like to call it. turns out that my husbands family also enjoys recognizing these little events. this week my sister in-law and family came over to our house for a few celebrations. first it was maaji's birthday (my mother-in-law), then maya's 5th month birthday and finally rakhi (an indian tradition to celebrate the bond between bother and sister). having 8 people in our house all at the same time would have been more stressful then fun for me if i had time to think about it. but it turns out i don't feel crowded or stressed this week.

this morning i woke up and could hear the shower to the guest bathroom go on, i saw my husband and mother-in-law outside, and as others slept in their makeshift beds, i wandered to the kitchen to make my protein shake. there was something interesting that happened at that moment. i felt like i was living in a small community. this feeling of knowing that there are people around who care, that are there to make you breakfast if you are hungry or hold your baby if you have to jet off to the gym, really got to me. i haven't had that in a long time and i had almost forgotten what it was like.

as she does every wednesday, the physical therapist came and worked with maya. the "family" watched and cheered as maya worked very hard at sitting up. it is so wonderful to see the interest that everyone is taking in maya. i think she brings people together in the most amazing ways.

i've seen some wonderful changes in maya even in the the last few days. she is generally a happy baby, but since the family has arrived she has been smiling almost nonstop. there are so many people who are here to entertain her, which i know she loves. she's taking in all the different sounds and languages and just having a ball with it.

there are moments when i wish that it was just the three of us. but i also see the value in having the extended family close by. the interaction that maya has with people who are hers forever is something that is priceless. i thank my stars that i have been blessed with her and the opportunity to experience all of this.

our adventure continues...

maya goes green

this is our second week using cloth diapers. when i told people that i was thinking of using cloth diapers, i got mixed reactions to say the least. when i became pregnant i considered using cloth diapers at first. of course as time grew closer to giving birth i thought disposable would be way easier. after a couple of months i started thinking a little more about how many diapers maya uses, not to mention the amount of money we spend to supply them. i started thinking that it would be worth a try. the idea of going cloth really didn't scare me as far as cleaning up the poop it was the extra laundry that i was worried about.

well i'm happy to report that it's not a pain at all to do cloth. first off i love the feel of these diapers, they are super sturdy and have plenty of cushion to them. washing them isn't a hassle at all since now a days you don't have to soak them in any kind of solution before washing them. i just throw them into the washer before i go to bed and then into the dryer afterward. i really think it's worth it because i've thought about the hundreds if not thousands of diapers that maya would be sending to the landfill. it might take more then 500 years for those things to disintegrate with all the chemicals and plastic involved.


evidently there are tons of different styles of cloth diapers now a days. they can come as basic as the old fashioned pin kind or fitted ones that have snaps and velcro. for a couple of weeks i did research on the web about these and i found this awesome site that really sold me on the idea. the owner has a great faq and relieved my feelings of it being a hard task. now don't get me wrong it is a little more effort then disposables. the fact is that i have to wash them every night or every other night, dry them and then prepare them before they are good to go. but i really think sometimes a little effort has to be made to make a difference in the world. i'm no saint when it comes to being green, but lately i've been thinking there are little bits here and there that i can do that might just make this world a better place. for now i plan to stick to cloth diapers and hopefully encourage others, by being an example, to do the same.

i love someone with down syndrome

a few days ago i added my license plate to my new car. it's a personalized plate which reads, evrfwd. it's a rare thing to see any bumper stickers or emblem that might show something personal about me on my car. having that license plate was a big statement for me, which i had added in 1997. before that i think the last time i had a bumper sticker on my car was when i was 17. i believe the sticker said something in reference to "save mother earth".

now in 2008 i've decided to add something else to my new car. it might not seem like a big deal to many people. it's not a bumper sticker, it's simply a license plate frame. it reads, i love (heart) someone with down syndrome. this frame was given to us by a local down syndrome support group. they gave us a wonderful packet of books, dvds, and this license plate frame, among other things. it's been four months since i received it and i went back and forth about "posting" it on my car. when we got this new car, i thought to myself, it's time to make a decision. i was surprised when i thought about it how quickly i came to the conclusion of adding it. there wasn't much to it because i truly feel proud to display this saying on my car. it just feels right.

so often i am reminded of how maya has changed all of our lives. she has touched us in the tiniest ways. one of my friends told me a couple of months ago that she saw this license plate frame on a car, it was like she related to that person or maybe maya was lingering in her mind somehow...because i'm sure that months before she wouldn't have seen that frame or even given it a second thought.

who knows maybe putting this on my car will bring awareness to others. perhaps it might even make a new parent feel not so alone. after all there are people out there with children, friends, brothers and sisters with down syndrome and they are loved. it seems like a good thing to share with anyone who might be behind me in traffic.

road map to holland

i've only read a handful of books from beginning to end.  don't get me wrong i have tons of books, many of them follow whatever interest i have at any given time.  probably my largest collection is between art books and meditation books.  now it seems i'm building another kind of collection, you guessed it, books that have anything to do with down syndrome. the majority of my time with books is about learning something.  i don't usually find myself reading fictional books or biographies.  i do however love to skim through books that offer information, something i can use to better my life.  but lately among my stash of educational books on down syndrome i have been starting a collection of books that tell a story.  

the book that i can say i've read from cover to cover just recently is  Road Map to Holland: How I found My Way Through My Son's First Two Years with Down Syndrome, by Jennifer Graf Groneberg.  i have to say i did most of my reading while expressing my breast milk for maya.  at first it was just something i could do while sitting there for 20 or so minutes.  but after a while it became something i would look forward to because the story

 she tells, well i could relate to.  there were scenes in the book that felt just like my life.  and it gave me things to think about.  i've been thinking that this is what makes a good book.  of course i've been wondering if anyone who does not have a child with down syndrome would read this book. but there must be a big audience because i noticed while doing my search for books about down syndrome that there are a lot out there.  the range covers personal accounts of parents with children with down syndrome, children's books explaining down syndrome, to more technical books on how to help your children excel.  it's very encouraging to see all these books.  

i really enjoyed road map to holland because the author just seems like a regular person, just like me.  and the sharing of her experience really helped me not feel so alone.  she also has a blog named pinwheels which i try to read when i get a chance.