Sunday, October 31, 2010

day thirty-one...the end.

we had a beautiful weekend...full of family, costumes, fall breezes, first pumpkins, candy and a little bit of rain...happy halloween friends...
random fact about down syndrome #31: i have officially completed the 31 for 21 challenge...i might not have been perfect at it, but i did it!

Saturday, October 30, 2010

day twenty-nine...and thirty.

i am bad i know...i was doing so well too! but my daddy got into town yesterday...so i will probably be hit and miss through these last couple of days...pictures to come though! promise.
~
random fact about down syndrome 29 and 30...there is a world in this new life we have. one that exists among every day life, where families are working together each day. each day to find inclusion for their kids, each day to make a better life for them, to outgrow the current standards, to rise above the prejudices, to make a difference...and i am honored to be just one more in the sea of these parents...to have others to turn to, to build on, to befriend.

"We often think that having a child with Trisomy 21 is like gaining membership to a secret club, a club you never knew you wanted to be in or even existed, but once you are in, you are so thankful that you were chosen."

Thursday, October 28, 2010

day twenty-eight...

the mornings are colder...my bed keeps me cuddled up those few extra minutes longer each morning...i can feel the cool air on my face and the contrasting warmth of a bed well slept in is just too much to give up...but, that little voice starts to ring out...and the mamama's are getting louder...so i give up my warm place and go in to see that boy of mine. he is a morning guy...and even though mommy thought she wasn't before she had him, she is now too...because that smile of his, the instant he notices my presence, makes my day before it even has time to start. and so we go cuddle in mom's warm bed for a moment while we drink down our breakfast and get those last few minutes of thick covers and soft sheets before our day really begins. it is our time.
~
random fact about down syndrome #28:

monica and david

Wednesday, October 27, 2010

day twenty-seven...

random fact about down syndrome #27: the ndss (national down syndrome society) is ramping up their "my great story" campaign. the purpose for the campaign is to help build awareness for people living with down syndrome. they encourage family, friends, neighbors of those living with down syndrome as well as the individuals with down syndrome themselves to write in and share their story. here are just two of the stories that have been posted so far...

sara wolff
sujeet desai


Tuesday, October 26, 2010

day twenty-six...

i really don't have much to say today...because i have felt very lazy the last two days with the "you should stay indoors" weather...camden and i have been getting in some mommy/baby cuddles and good chick flicks...yum.
~
random fact about down syndrome #26: there are degrees of severity that come along with the diagnosis of down syndrome...the cause of the differences are unknown...each person has that same extra 21 and yet each person reacts to that extra bit very differently...i guess just like each person in general reacts differently to all of their chromosomes. it is difficult to see the range of function in children with down syndrome until the developmental process begins, and although a child might be slower in the development of fine motor skills they might develop gross right on schedule...or speech ahead of schedule...it really is up to that individual child, just like any other child.

Monday, October 25, 2010

day twenty-five...

it is snowing this morning...for the first time this season...and although i know it won't be the last...and come january you will start to hear the moans and groans about it not being the last...but for now...we are loving it. we broke out the winter coats and hats and i am thinking camden just might get his first go at a snow ball this afternoon. and the sleety balls falling from the overcast sky make me want hot cocoa and a fireplace, and a good movie to curl up in front of. yes, this all might just be on today's reorganized agenda...because there really is nothing more wondrous than first snow...and the way the sunlight peaks out from its hiding spot here and there to light up the mountain tops...the glaze of frost laying gently on my summer squash in the garden and the mums under our window...it's one of those moments in life that takes you back a bit, a reminder of the little things.
~
random fact about down syndrome #25: the "politically correct" way of describing a person with down syndrome, or any disability for that matter, in the u.s. is to say "he/she has down syndrome" not "he/she is down syndrome" or "down's"...these little things don't really bug me, because i recognize there is no harm intended by it most of the time, and i too, before and a little after camden, didn't recognize this fact...but i understand now that it is about more than offense and so we try in our house to recognize that a person is not their disability.

Sunday, October 24, 2010

day twenty-four...

camden received an adorable little duck costume from a certain grandma...the little striped tights are to die for...daddy and mommy may or may not have decided to dress as duck hunters to match...let the halloween fun begin!
...
ps. a little boy turned 9 months old today...it makes me a little sad to think that he is three-fourths of a year.
~
random fact about down syndrome #24: i don't use capitalization on my blog...mostly because i like the informal feel...but if i were to use capitalization you would notice the "d" and not the "s" in capitals: Down syndrome.

Saturday, October 23, 2010

day twenty-three...

technically it is still day twenty-three...or at least it was one minute ago when i started this post. it's been a long day...a good one...but a long one. i have some pictures to post...but they will have to wait for tomorrow...because tonight i am beyond done with computers.
~
random fact about down syndrome #23: a family that has previously had a child with down syndrome has a one percent higher chance of having another child with down syndrome. one percent isn't really much...then again our chances of having camden were only .067%...billy and i have talked about this fact a few times, being that camden was our first, and well we would love to have more children...and without a doubt we will...that isn't really the question...the question lies more in "will we have the tests?"...and although this is still up for debate here and there in our house, it isn't because having another child with down syndrome scares us, it doesn't. it comes from the do we want to be prepared next time? and the more i think about it the more toward no i lean...because really how can you prepare for any child?

Friday, October 22, 2010

day 22....

lots of milestones in our household this morning...
...
camden has been making a peace sign for the last week or so...adorable i know...but this morning he was doing it throughout his breakfast, and i was racking my brain to figure out where he learned to do it...and then i noticed the background noise...signing time. "this is the sign for water...can you sign water?" up went the peace sign while he stared at his little fingers...not quite water (which is three fingers bounced on your chin)...but so so close. now, i understand that this could have been a very cool coincidence, but we are going with it...and now every time i see those little fingers go up, they will be followed by a glass of water... not because i think he means it right now, but because i want him to mean it, and i know that if i stay consistent it will turn into intentional.
...
on another note...while practicing our four point again this morning...camden pushed himself into a sitting position. you should have heard the hoorays coming from his little bedroom...and mommy clapped, and camden clapped mommy's hands, and it was a good day.
~
random fact about down syndrome #22: although speech can be difficult for someone with down syndrome, mostly because of the lower muscle tone in their mouth, they are very good communicators...and since motor skills come before speech in the developmental process of things...most children with down syndrome are able to learn to sign to help bridge the gap in communication.

Thursday, October 21, 2010

day 21...

i don't have much to say today...it was a very busy morning...and i am squeezing in blogging time before the little guy decides to wake up for lunch. therapy at eight, eye doctor at 945...and we are currently missing a very anticipated play group...and i am pretty bummed about it. the eye doctor took way too long...we finally got home at noon...and of course cam is out cold...and hasn't eaten anything since 730...so, one hungry little boy will make himself known here soon. but hopefully we will see our friends next time, and hopefully next time will be soon!
~
random fact about down syndrome #21: this isn't really a fact...it is more of an observation...i read "road map to holland" when camden was about four or five months old...it is a well known book among the down syndrome community...i remember feeling really good about camden and our new life, i remember seeing other kids with down syndrome and falling madly in love immediately...but i also remember falling to pieces when i would see an adult with down syndrome. i wondered if that feeling would ever go away. i found comfort in that book, and i wish i could find her quote...she talked about seeing people with down syndrome before she had her son...and that she had been denying them a childhood all this time, that she never thought about the fact that they have a mother out there, who loved them and cuddled them as she did her own children. i was doing this too. i looked at adults with down syndrome the way i look at most adults, the way that they are now. i never stopped to wonder what a cute child they may have been or the people that loved them in their life...i denied them a childhood. and really the relationships that we create here on earth are all that really matter. it isn't about being able to fly a plane or solve a math problem...it is about the way that we love, and the way that we are loved in return. i don't break down anymore when i see adults...i just picture a wholesome child running about and the smiles that they undoubtedly brought to their mothers.

Wednesday, October 20, 2010

day 20...

i have a little one with the sniffles and a tiny cough...poor little guy.
so this week we might be going back to the cuddly newborn days...and although i hate having him feel crummy...
i don't mind the extra cuddles.
~
random fact about down syndrome #20: nine out of ten women who find out that their child has down syndrome during prenatal screenings choose to abort.

Tuesday, October 19, 2010

day nineteen...advocate.

something happens to you when you are inducted into the "mother of a child with special needs" club...something inside of you is ignited...a spark you never knew existed within you...one you never thought that you could have. you become an advocate. you latch on to your new role and you push ahead...at first you keep your head down and you trudge through the mud...but every once in a while you look up, until soon you don't need to keep your head down anymore.
...
when camden was in the nicu...in those first few days of his life...i remember looking intensely at everything he needed to stay alive...the oxygen, the feeding tube, the iv, the bilirubin lights, the antibiotics they had streaming through his body...i remember watching him breathe...i remember the blue color of his newborn lips, the ups and downs of his little chest...i remember the congestion from the oxygen that i could hear as he would struggle with each in and each out...i remember the glimmers of hope that just one feeding session would bring into our eyes, and i remember the loss of it with the next...the stream of nurses who moved in and out of his tiny life...i remember thinking how much i had taken life for granted...that it was hard to live...and how i never even thought about it until this little being came suddenly in and showed me what life was. how each and every breath is an accomplishment...and not a small one. i remember realizing how lucky we had been, that the doctors saw what we did not...i remember how lucky i felt when they said that i could take my child home. i remember how lucky i felt when i saw the families who had been there for months on end and those who still remained there.
...
something happens to you...a light switches on...you tell yourself that this is it...that you can't hide anymore and that you have to be strong. i remember in the nicu when a nurse looked at my husband and i and our small, new family and said "you are his only advocate, you have to fight for him when no one else will". i remember feeling resentful for a second...i remember grieving for the life i thought that i once might have had...and then the light switched on, and i felt calm...and i knew i could do it...that i could be his advocate.
~
random fact about down syndrome #19: between 40 and 60% of children born with down syndrome will be born with congenital heart disease...but because of recent medical advances most of these babies will live healthy lives.

Sunday, October 17, 2010

day eighteen...

it's hard sometimes, to think of words to say...a subject worth writing about. so i ponder...i get lost in thought...i read other's ramblings, i dip into their souls to the extent that they allow...i try to find meaning, in little things and at times, in nothing at all. then things begin to swirl, and they never seem to make complete sense at first...they move from one corner of my mind to the next until four corners connect, and i have something...maybe...and i never quite know what i have until it's on paper, out of my mind and into written words...so forgive me this once, if you don't quite know where this is going...because quite frankly, neither do i.
~
sometimes i feel as though, in a desperate attempt for inclusion, in striving for not so different, i discount the very qualities that make my little one so uniquely beautiful. sometimes i feel that the celebration comes from the closer to average than the not close to average...and i have to wonder...why? why a mother who wants her children to be so beautifully, uniquely genuine would strive for average...in any sense of the word.
...
in a world who claims to celebrate differences, to encourage creativity and dreams...why is it that i find myself clinging to normalcy...and who defines normal? could i even define normal? average is the middle, the sum of all parts then divided by them, the thing that happens most often...how do you quantify qualities? and why do we try? so why is it that in our quest for inclusion, in our attempts at understanding, that we compare to averages...
...
i found comfort once, in averages with camden...when i would look at him and at other babies and not see so much the differences...when i would hear the words, "you can't even tell", or when the therapist would say "no significant delays"...but somewhere along the line, those words lost their meaning...they changed meaning...they began to hurt. they began pushing normal...and i find myself asking why? why can't we each just be "each"...in our very own wonderfully unique way. why can't we push for different...in the most wholesome sense of the word, and why can't that be magnificent in its very own way.
...
so in a society that at times defines unique as exclusive instead of inclusive...we find ourselves comparing averages...but my son isn't average...and i wouldn't want any of my children to be. i want him to be unique in the most wonderful ways possible...my son is different, an individual, exceptional, extraordinary and strange in the best possible ways, the ways that make him divinely, singularly, him. in all, he is who he is...and i strive to celebrate that each and every day.
~
random fact about down syndrome #18: my son has down syndrome...he is unique. the following are synonyms for the word unique: different, exclusive, individual, only, particular, rare, best, exceptional, extraordinary, singular, special...

day seventeen....

i got this little message from my little one yesterday...

"hi mom"
~
he brightens up my day every time i see that little face...
~
random fact about down syndrome #17: most infants and children with down syndrome in the united states are a part of early intervention programs...which include: physical, speech, occupational and other therapies. camden began early intervention at six weeks old...it is a blessing to know other people have camden's best interest in mind and that we as parents have help in helping him reach his goals and improve.

Saturday, October 16, 2010

day sixteen....

i am away from my little guy for the next three days...and i miss him and his daddy like crazy already...
~
random fact about down syndrome #16: i don't really have a real fact for today...except that i couldn't love that kid of mine anymore than i do...and it makes me smile.

Friday, October 15, 2010

day fifteen...

camden has not been the best of sleepers lately...we can't quite put our finger on the cause...but we are hopeful it is just a phase, because i feel like i have a newborn again...and it has resulted in his sleeping in our bed...i know, i know...we are probably making it worse...but i love to cuddle him...and i love when he rolls over to wake me up in the morning with his cute little smile and his tiny babbles...even when you only get maybe five hours of sleep, when your day starts off with laughter, you know it will be a good one.
~
random fact about down syndrome #15: down syndrome was named for the british doctor who noted the characteristic features in 1866, john langdon down...the actual chromosomal cause (that third 21st) was not found until 1959, by jerome lejeune.

Thursday, October 14, 2010

day fourteen...

last night the husband and i gave blood...we subsequently found out, from his pale green face, that he would bleed out first if anything ever happened...and that i would shortly follow...i think that the red cross guys got a good laugh out of our little family, sick and coming close to passing out every time we moved. we know we did. but it was worth it...because together we saved six lives. so go give blood...because you get a cookie and watching your husband turn green is a little bit funny.
~
random fact about down syndrome #14...although they can light up your day with that smile of theirs...they aren't always happy. always being the key word. they experience every emotion possible...camden's latest...frustration...yes, with baby temper tantrums wrapped in there too. they know when they are being made fun of...and they can have their feelings hurt just like anyone else. they can feel lonely, sad, angry, frustrated along with feeling excited, love, loved, happy and contentment. all in all...they are human, in every sense of the word. is that not the most practiced dirty look on the face of the planet...i would like to blame it on his father's genetics, but since i have never seen billy give a dirty look, i am going to have to blame it on myself...because i am the queen of them.
but there is something extra special in that 21st chromosome, and although it means more doctor's appointments at times, and therapy, that little smile makes me thankful for his little bit of extra...

Wednesday, October 13, 2010

day thirteen...look mom no hands!

does it get any cuter...i don't think so....
random fact about down syndrome #13: most kids with down syndrome have low muscle tone...which is why gross and fine motor skills along with articulating speech can be more difficult for them to achieve and may take a little longer than average. there are a lot of activities that you can do to help understand what this feels like...and they can be found here.

Tuesday, October 12, 2010

day twelve...

there is a fall breeze in the air today...mmmm...i think a little fall photo shoot of my tiny one might be on the agenda today.
~
random fact about down syndrome # 12: people with down syndrome have become increasingly integrated into all aspects of society...they play sports, they attend high school and even college, they are involved in music, acting and art. they can do most everything any other person can do...including, in some cases, move out and get married. they very much have their own interests and can excel at them. they just need a little love and encouragement (just like anybody else), and although it might not be as quickly as other people, they can do most anything they set their minds to.

Monday, October 11, 2010

day eleven continued...

mostly because after one long night...i am at least grateful for amazing weekends...
and for family.

Sunday, October 10, 2010

day eleven...sort of.

so i know that i am technically writing two posts in one day...but i am going to count it as tomorrow's....mostly because it is 10:30pm on sunday night and my eight month old decided that when he went to bed, at his usual time (eight), he was really just going down for a nap. i am giving him the benefit of the doubt though, and i am going to say that he wasn't planning for it to be that way...since he fell asleep on our way home from a day out and when he got home we rocked and he ate a bottle and went back to sleep...only to begin screaming in his sleep three times in 15 minutes, the last time inconsolably...to the point that he was gagging, all the while, still asleep...i finally had to wake him up...and now he is awake, and i mean awake...sitting on my lap...talking away and batting at the keyboard...apparently eight month olds can have nightmares...or something of the sort because boy was that boy being terrorized until his little eyes opened and he realized all was normal. well, i suppose that while i have him awake i can wear him out with some four point exercises...
~
random fact about down syndrome #11: one in every 733 babies born is born with down syndrome...it is the most common chromosomal condition.

day ten...

the floors are done! and we are slowly putting our house back together...horray.
~
random fact about down syndrome #10: although people with down syndrome share some physical traits as well as some form of cognitive delay (usually mild to moderate), they are more alike their families then they are different. they share many things with their siblings and parents...talents, voices, looks, quirks, facial expressions and pretty much anything any other child would take away from their families as well.

Saturday, October 9, 2010

day nine...

random fact about down syndrome #9: the average life span for a person with down syndrome was 25 in 1983...today it is 60.

Friday, October 8, 2010

day eight...

random fact about down syndrome #8: people with down syndrome have a great impact on the medical community...they are more susceptible to some medical conditions, such as: heart defects, leukemia and alzheimer's disease...however also react very well to treatments....as if their little bodies were meant for it...thus bringing about a lot of knowledge for doctors and scientists...

Thursday, October 7, 2010

day seven....

we are putting in new floors in our house this weekend...so these posts will be short and sweet. i love the smell of fresh wood...yummy.
~
random fact about down syndrome #7: not all people with down syndrome have all of the features of down syndrome...in fact a lot of the features can be found on people without down syndrome as well...they didn't see that camden had down syndrome in the ultrasounds (and we had many) because he doesn't have the features that you would look for in an ultrasound...like the thicker skin on the back of the neck...or the one knuckle pinky finger...but the pediatrician noticed some features in him at birth...like the simian crease on his palm (which means he has a crease that goes straight across his entire palm), the space between his big toe and other toes is a little wider than average, he has a slight upward slant to his eyes (creating that almond shape that i love), and brushfield spots, which i have as well (tiny specks of white in the colored part of his eye, like little stars).

Wednesday, October 6, 2010

day six, gifts...

being a mother to a child with special needs has its pros and cons...just like being a mother to any child would...but babies with down syndrome give their mothers a very special gift...one that i think every mother has longed for, every mother has asked for...and even after i have been given the gift i still find myself asking for more of it. camden will stay a baby a little longer then most...i will get to soak in each stage for a little bit more time then i would typically get...and although at times i find myself outwardly pushing him to accomplish goals, i secretly revel in the fact that i get my soft cuddly baby just a little longer then most. he won't always be a baby though...and i have come to terms with this fact as he shows more and more signs of little boyhood...but i won't lie and say i wish he was crawling everywhere...although i am sure it will have its own delights, just as each stage does...i won't lie and say i wish he was a bigger kid, because i love to hold and carry my cuddle bug and even now i find myself struggling with it at times. i have been given the gift of time...time to stop and smell the roses of babyhood...and it is a beautiful thing.
~
random fact about down syndrome #6: babies with down syndrome have their very own growth chart. they are, on average, smaller then "typical" kids...

Tuesday, October 5, 2010

day five...

at just about eight and a half months camden has concluded that mommy is cuddle time and daddy is play time...and it is terribly cute to see that wide eyed grin flash instantly over his face each and every time he sees his daddy...
however...not so terribly cute when it is bedtime and dad isn't allowed in the room anymore.
~
random fact about down syndrome #5: the occurrence crosses over all nationalities and economic statuses as well as both genders.

Monday, October 4, 2010

day four...

there is perfection in imperfection....
random fact about down syndrome #4: there are three types of down syndrome (or three ways that it can occur)... the first covers 95% and is known as trisomy 21...prior to or at conception a pair of the 21st chromosome fails to seperate creating three copies instead of just two...as the fetus develops the extra chromosome is replicated in every cell of the body. the second covers 4% of cases....it is known as translocation....this occurs when a part of the 21st chromosome breaks off and attaches itself to another...usually chromosome 14...the child will still have the usual 46 chromosomes in this case, but the presence of that extra portion of the 21st chromosome causes the characteristics of down syndrome. the last is known as mosaicism and accounts for 1% of cases...this happens when the 21st chromosome splits after fertilization...but not in every cell...so some cells will have the usual 46 and some will have the characteristic 47.

Sunday, October 3, 2010

day three....

daddy made me a snow cave the other day...i would like to say it was in anticipation of what is to come this winter...but it was more because it was the only way he could get me to go to sleep while mom was out...random fact about trisomy 21 (down syndrome) #3: there are over 400,000 people living with down syndrome in the united states today...

Saturday, October 2, 2010

day two...

a house of laughter....
video

random fact about trisomy 21 (down syndrome) #2: children with trisomy 21 have 47 chromosomes, instead of the usual 46...the 21st chromosome is repeated 3 times instead of 2. this tiny genetic abnormality is present at the time of conception, it does not develop over the course of a pregnancy. that 21st chromosome can alter a child's course in many ways and i wouldn't say they are bad ways, just different...and no little body will react the same way to the chromosome's presence...

Friday, October 1, 2010

day one...

october is here...don't worry that it might hit ninety today in the beautiful salt lake valley...i'm really not minding the few extra days of summer this year...although i do love me some yummy hot chocolate...wearing fall boots and coats...the crisp feeling in the air...the heaven sent hues of mother nature...the anticipation of holidays...the first snow fall...an excuse to over indulge in just about anything....that warm fuzzy feeling that only this time of the year can bring...but until next week, when the thermometer will be sent spiraling into the sixties...the little one will be getting in some of his favorite play time...the kind that only summer can bring...diapers only in our house today!random fact #1 about trisomy 21 (down syndrome): the average age for a woman to have a child with ds is 28...in fact 75% of children born with down syndrome are born to a young mother...why: because most women have children before 35...our chances were approximately 1 in 1500...and i wake up thankful everyday that we got to be that one.

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