Tuesday, December 30, 2008

maya's first christmas

this was our first christmas as a trio. we sure did enjoy a low key christmas this year with maya. it was so nice just to hang out, the three of us, for four days straight. it felt like a real vacation.

christmas morning we opened our presents in bed. that was the best part. even though maya is only 9+ months old she seemed to realize she got new toys and enjoyed playing with them that day.

what can i say about the new year coming our way. i just can't wait to see what maya will be doing in the months ahead. this next year i can see is going to be a great one indeed.

Wednesday, December 3, 2008

things to be thankful for...

this was maya's first thanksgiving. i suppose she really doesn't know what that means yet. in reality it was my first thanksgiving as a mother.

we spent our day with our family/friends eating, chatting, drinking coffee and acting goofy. it has been our usual tradition for a number of years now. at the end of the evening i felt something was different about this thanksgiving. and then it hit me, yes, i am a mother now. my focus has totally changed from where it was last year. it's really hard to explain, but now i know that my life will never be the same. of course we always are changing, but there is something very different about becoming a mother. my life is not my own anymore.

what i have to be thankful for this thanksgiving is having an amazing little person in my life that can bring me back to each moment. every action that takes place in her life is what will make her into the person she will be. i get to be a part of it in one way or the other. i'm very thankful for this opportunity. the chance to grow along with maya and become a new person.

thank you, d, for making this possible. without you, our precious gift would have only been a thought, an idea that might not have ever happened.

Tuesday, November 4, 2008

maya's first halloween

even though this a little late, i've decided to write a short segment about our halloween. this is maya's first halloween and although she will not remember it, i certainly will. there are some who may wonder why i took my daughter out on halloween, being that she is only 7 months old. i decided way before this day that i would do so because this is something in my childhood that i missed out on. for whatever reason i don't have many exciting memories of going trick or treating with my family. the one time i can remember going out was with my older brother. i remember most of our neighbors turned off the lights (retired folks) and the ones that didn't, well, let's just say i ended up with dinner mints in my bag.

i suppose i'm doing what all parents do, give their children the things that they never had. in my case the things that i missed out on were doing family events together like trick or treating or sitting together at dinner time. more than material goods, these moments are the ones that i really wish i could have experienced growing up. i'm hoping that i can give my daughter these kind of memories so that she can cherish them for a long time.

Sunday, October 12, 2008

perfectly maya

tomorrow will be maya's 7th month birthday. i can't believe it's been this long since i have had a chance to write. perhaps i felt a little more alone this last month than usual. being a mother is a tough job and as i have always believed, it is a selfless responsibility. for the majority of my life i never thought i would be a mother. the truth be told i've strayed away from it all on my own. i've always seen it as a big job, one that would require all my energy and love. but on top of that i knew that i would have to stop thinking of all the things that i wanted and put another human first.

as maya grows right before my eyes, i see how a human can be molded to be the person they will become. so many times, i've looked at myself and wondered what would i have been if i would have had better role models. when these thoughts come to me i feel more determined to be a better person and mother for my daughter.

maya is my inspiration in so many ways. when i look at her and see how she is becoming her own person, i think that i could not ask for a better child. i cannot see my life without her just as she is. she is perfectly maya.

there are times when i wonder if i should be more sad because she has down syndrome. yes, of course i feel brief moments of sadness when i think of how others might treat her unfairly in the future. or of the struggles she might have to face after we are gone. but most minutes, hours and days i feel proud that she is my daughter. because she is who she is, i have decided to devote my life, to her life. it seems that no other thing matters to me more now that i have her.

when i think about making art, all i can think about is how maya is my muse. maya is my art. sometimes when it's just me and her, and she is looking directly into my eyes, i know deep in my heart that she is the best thing that i have ever made.

Saturday, September 6, 2008

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.

Wednesday, August 27, 2008

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.

Tuesday, August 19, 2008

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.

Wednesday, August 13, 2008

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...

Friday, August 8, 2008

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.

Wednesday, July 30, 2008

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.

Saturday, July 19, 2008

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.

Monday, July 14, 2008

sign language and maya

i've been trying to sign to maya every chance i get. at first it felt kind of funny, because well, it's not like she is looking at me all the time. but lately she is looking directly at me for longer periods of time so i show her the sign for milk, food and hungry mostly.

from the moment i knew i was going to have a baby i started to dream about teaching sign language to my child. i remember the first time i saw it in person, my cousin was signing with his son. it was so cute seeing his tiny hands speaking back to his dad. at that time i didn't quite understand how useful signing could be, but when i started to think about it, i knew it was a good thing.

and researchers say that signing with babies may boost their IQ.

i've always loved sign language and now i have the most perfect excuse to use it. here is where i have found my favorite signing dvds. it's a series called signing time, of all things. i love this series because the teachings aren't too distracting or over the top. the person who stars in it sings all the songs on the video. she herself signs and then they show a lot of little kids signing the best way they can. it's really sweet.

anyway, i thought i'd share this info because i know when i was looking for a signing series i was very confused as to which product to get. i was so lucky because a down syndrome group here gave us a copy of one of the signing times dvd. i was very impressed and of course i had to order the baby signing time set. the set included 2 cd's with all the little nifty songs that they have created to sign along with. i have to admit i have been singing and signing to them on my own. they are quite catchy songs.

i'm so looking forward to that first moment when maya will use a sign. like the first time i heard her laugh and the first time i heard her coo, i'm sure it will be a special day.

Sunday, July 13, 2008

milestones at four months

today is maya's birthday. ok, it's only been four months. but every day seems like a milestone so right now i count every month. i'm sure, almost all first time mothers do the same thing until their kid is a year old so, why not me?! =)

i've been super excited these last few weeks because i have seen so many changes in maya. we started physical therapy a few weeks ago and it has made such a difference. i'm so grateful for the services that our state provides. because of it we have a physical therapist come to our home once a week. eventually we will have a speech therapist also. i find that i'm learning so much about human development. i have maya to thank for that, among other things.

maya has really blossomed into her own person lately. well, she's always been a social person, but now she giggles like crazy and loves to see everything we see. she doesn't like to be cradled as much anymore, now that she is gaining head control she likes to be on our shoulder and see everything.

one of the things that we have been doing in her therapy time is showing her that she has hands and feet. this is something that others might take for granted...i mean i didn't even know that she was supposed to find her hands and feet at a certain time. but there is a timeline for everything i guess. we had been working on it from the first therapy session. well a couple of weeks ago she started to put her hands together on her own. i was so excited to see this. it felt like a huge milestone. when i think about it, even though it felt like a long time coming, she really learned this trick very fast. the therapist was really impressed with her progress.

now besides just sucking her thumb (which i believe she enjoys more then her pacifier now) she will intertwine her fingers and play with them. she is also starting to grab at her toys. now this is a really big thing because up until last week she didn't have any interest in toys or outside objects unless it was her burp cloth or my hair.

i was thinking this morning that she has come a long way in such a short time. from the NICU (neonatal intensive care unit) needing oxygen and a feeding tube, to a laughing little girl, bursting with energy. she has amazing strength in so many ways. there isn't a dull moment with maya around. i never thought i would be so in love with my daughter. but i am. and i'm certain now that this is what joy feels like.

Tuesday, July 8, 2008

memory keeper's daughter actor, krystal

i saw this movie a few months ago. maya was just home from the NICU and i remember we were sitting watching television when the ad for this movie, the memory keeper's daugher, came on. it's based on a book by the same title. i'm sure the book goes into more detail. (i haven't read it) the movie was pretty good.

anyway, here is an interesting article about the actress, Krystal Hope Nausbaum. i love this photo of krystal and her mom. they really look happy and she just looks so cool in it.

Krystal's Big Break

i have a voice

Sunday, July 6, 2008

self advocacy

here's another site that i'm sure i've told most of my friends about. it's the national down syndrome congress site. my favorite part of this site is the self advocacy section. i love the idea that maya is a self advocate. because she is interacting with so many people she is making a big difference.

a while ago many people with down syndrome were stuffed away in institutions. now they are immersed in the society. it just makes me so happy when i see people out and about. of course now i probably notice it more and more because of maya.

the other day i went to the bagel shop to grab us some breakfast. it's well known that this place, on the weekends, is the stopping point for cyclist. on any given sunday you can see groups of cyclist eating their bagels and drinking some coffee, before they get back on their cycles to continue. i've seen many there with their spandex outfits and bandanna hats. one sunday a couple of weekends ago, i was walking out the door when i saw a young man with down syndrome with a group of cyclists. he was dressed as everyone else was, in his spandex outfit, sunglasses on his head. he looked like he was just one of the guys. i can't tell you how this made me so happy. it really touched my heart. a friend of mine went there a few weeks later and saw the same fellow. he said he saw him getting on a tandem bike with another man. they rode away from the bagel place just as my friend was exiting. now my friend also notices these events and shares the same excitement and joy.

the below page has little snippets of the self advocate council. the people listed here are super inspiring.

self advocate council

Friday, July 4, 2008

Down Syndrome Myths & Truths

we found this website as we were looking for more information about down syndrome. all of a sudden it became important to find out as much as we could about it. even our friends were looking up info on the web. it felt like people were supporting us by learning more about down syndrome themselves.

down syndrome myths and truths

what makes people sad about having a baby with down syndrome? that's the question that i thought about when i had her. why was i crying? was i really sad or just shocked?
some people were sad for us and said sorry, but others said it was not the end of the world. the people that congratulated me were the ones that helped me accept maya. i wasn't a victim, i was a new mother after all.

i suppose our society lends itself to thinking that people with down syndrome are flawed in some way. i mean there has to be a reason why 90% of the women that find out they are having a baby with down syndrome terminate. did i feel like i was getting a bum deal by having her? and if so, how was it that i came to that conclusion? why do we put a negative label on a person with "special needs"? i mean maybe she will show us a different way of looking at what "success" is. it seems that is what i am learning the most about this experience. it's hard to explain but part of me thinks that i am more in the moment because of her. she shows me that it's the little things that make a life worth wild. like the first time i saw her sucking her thumb. i was so happy that she found her thumb and started to suck it that i grabbed my phone and took a picture of it. it's a really dark photo because it was in the night, but still it is beautiful to me.

more than anything i think that maya is an amazing baby. she is mostly no different than other babies...yes, she is on a slower learning curve but i see she already has a sweet personality. she has brought so many people together just by existing. it's only been 16weeks but so far i think she has shown me how wonderful life can be. i never knew that i had an empty spot missing in my heart until i had her. now she has filled it ten times over. i would never change who she is, extra chromosome and all.

Monday, June 30, 2008

true to her name

below are a few definitions of maya's name. when i was in college i knew a girl who's name was maya. i thought then and there that if i ever had daughter i would name her maya. as the years passed and i started to study buddhism, i discovered that the word maya has a very complex meaning.

true to her name, maya's name shed so much light on what this life is about. because she was diagnosed with down syndrome she created a new world for me, she had me questioning reality. my ideals of what my daughter would be like took a new shape and meaning. it's quite ironic because i had a perfect picture in my head how maya would be, and i had to let go of that illusion right away to accept who she is. it felt like a great teaching.

meanings of maya:
The girl's name Maya \ma-ya\ is pronounced MYE-ah. It is of Spanish, Hindi and Russian origin. In Spanish, short form of Amalia. In Hindi, from Sanskrit, meaning "dream, illusion". In Russian, a form of Mary. A star constellation.

maya (mä'yä) , in Hinduism, term used in the Veda to mean magic or supernatural power. In Mahayana Buddhism it acquires the meaning of illusion or unreality. The term is pivotal in the Vedanta system of Shankara, where it signifies the world as a cosmic illusion and also the power that creates the world.

Sunday, June 29, 2008

welcome to holland

this is an article that i was given by one of the organizations here. it does a great job of describing what it's like to find out your child has down syndrome.

emily has inspired and helped many people with this article...including myself.

Welcome to Holland
By Emily Perl Kingsley

Monday, June 23, 2008

inspiring story

someone posted a link to this article at the down syndrome society and i really thought it was inspiring.

from the chicago tribune, "Despite Down syndrome, son jumps at any chance to follow his dad"

Sunday, June 22, 2008

a new dream called maya

i've asked myself why blog? after having this blog account for over a year i've finally decided it's time i start using it. before i was on the fence about it because i've often thought that people that blog are basically exposing things about themselves that perhaps no one really wants to see/hear. it almost seemed like a waste of time to me. it wasn't until maya chose to come into my world that i started to investigate blogs again.

i started reading a book named GIFTS: Mothers Reflect on How Children with Down Syndrome Enric
h Their Lives it was here were i started seeing blogs by mothers that have children with down syndrome. as i started to read some of these blogs i felt as if i was part of a community. i have been enjoying reading what others lives are like with their children. it gives me hope and encouragement. so i have decided to create this blog for my daughter. i see it as a form of advocacy.

before maya came to me, i didn't have much of a clue about people with down syndrome. i had worked in a group home for adults with disabilities when i was in college for a short while, and have always had a special feeling when i saw people with down syndrome but that's about it. while i was pregnant i found myself looking around for people with down syndrome. where are they? why aren't they interacting with the rest of society? now that maya has come into our world i can see that she has opened my eyes in so many ways. it seems that she has touched so many people just by existing. she has brought awareness into peoples lives that didn't even know what down syndrome was. she is an advocate. i feel so blessed to be a part of her world...i hope you also enjoy her.