Tuesday, May 26, 2009

a special kind of hero

two weeks ago i ordered the book "A Special Kind of Hero: Chris Burkes' Own Story". it has been on my list of books to purchase and read since maya was first born. of late, i was really feeling the need to read this book because i want to know what a person with down syndrome thinks and feels about having down syndrome. i also want to know how other parents have guided their children with down syndrome to be extraordinary people.

i remember watching Life Goes On, in the early 90s. i really enjoyed the show. i didn't realize it then, how amazing it was that there was a tv series that featured a person with down syndrome as one of the main characters. now, it seems i look all around for actors, characters, stories or everyday people with down syndrome. i'm glad that so much awareness has been brought out in this day and age. advocates like Chris Burke are an inspiration to say the least.

yesterday morning i spent about an hour reading this book. and i have to
tell you that this is an amazing thing. most of the time i spend my time reading at night because it just seems that's when i have time. i have so much to do that i just don't have time to read during the day. i'm only a few chapters into the book but i really love it so far. the storytelling is right on. it feels very engaging and down to earth and at the same time informative. i'm looking forward to reading more of it.

if anyone who is reading this blog, knows of any other books that they can recommend....well please do let me know. thanks, j.

p.s. i have a tooth!

"mama calls it mount everest". =)

pulling up to kneeling

it's been a while since i've reported on maya's developments. it seems like around her birthday she did so many things. she was using her hands more, signing and starting to crawl. but for the last month or two things slowed down. i know i shouldn't be sad about such things but when i see other children her age or younger walking and talking, somewhere deep inside i do feel a little sad. i'm not sure why, but before it didn't really bother me much. of course i knew she would always be a little behind but when she was a tiny baby it just didn't seem to bother me. the whole walking/talking thing has brought to the forefront how behind she is. for the last two months i've worked so hard on getting her to just stand up against the sofa for a few seconds at a time. so yes, when i see 10 month olds pulling up to standing on their own it makes my heart sink just a little. i have been wishing maya would also do such things at 14+ months.

i can't say that maya hasn't been moving forward on her development, she after all has been signing very well. she is learning new signs now...like star, sky, play, outside and potty. she tries to sign them when she watches baby signing time, and even if they aren't perfect i know that she is trying. we have been working on her potty training also. since 13 months we have been able to get her on the potty when she has a bowel movement. this, i have to say, makes me very proud. she is even starting sign "potty" now and the last half a dozen times she has waited until i got her on the potty before she released. (so exciting!)


when it has come to her gross motor skills, well, as i have said, we have been struggling. i do contribute the set back due to her becoming ill for the first time. when she caught a stomach virus it took three weeks before she started to sign again. it was almost like she just didn't have the energy to sign or grow.

so last week, when i found maya pulling up to a kneeling position, well you can imagine how excited i felt. there was also a big sigh of relief. she's finally getting it! she's finally going to want to stand and cruise! ok, i'm way ahead of myself, but it is going in that direction. i just can't wait to tell her physical therapist!

all this weekend i have been enjoying watching maya pulling up on her own. she seems to be trying all sorts of places, the fireplace, ottoman and even her bouncy chair. her curiosity seems to be growing since this new discovery. i can see it on her face. i'm hoping that other things will soon follow.

Saturday, May 9, 2009

happy mother's day!


this is my second mother's day with maya. i can't believe another year has flown by. to be honest i still am getting used to the idea that i am a mommy. and that maya is my daughter.

lately i've been working very hard being a mommy because maya was ill with a stomach virus. it was the first time she was ill and i suppose i should be very grateful that she did not fall ill before this time, but it's been a trying time for all of us these last few weeks. it's hard to see your child vomiting and not be able to explain to them what is going on. i really felt sad and worried for maya but thankfully the worst part of it passed in a few days. it's taken a while for her to fully recuperate and i have to say it tested my patience. on top of all this she has been teething, so my darling baby has turned into a needy, cranky 14 month old. wow!

lately she just wanted to be held or have me close by. if i stepped out of the her sight for one second she would start wailing. this is when a support system is terribly important. and being that the husband is working like a dog these days and friends have been sick, dealing with newborn baby or just plain working, well i have felt a bit like an island lately. thankfully things are starting to get back to normal. just in time for mother's day too!

so to all those mothers out there i want to say kudos to you, for all you do. it is a big job being a mommy. we have to be their for our children when we are dead tired or when we don't feel well ourselves. we are consantly putting their needs above ours. we know whether they are hungry, tired or just need a change of scenery. no matter what, i feel like i am blessed to be a mom. i feel an amazing depth of love for my baby and i wouldn't trade it for anything in the world.