Tuesday, December 21, 2010

Sunday, December 19, 2010

a gift...

a great grandfather's very tiny infant ring may have found itself under our non-existent tree this year, in time for camden's first taste of christmas morning...this weekend consisted of the bush side of our little familia and it was just as magical as any christmas morning...with a little guy all ready to eat some wrapping paper and tear to shreds what he could. true to baby form he could have been a little more interested in actually playing with what was in the carefully wrapped paper...but then we wouldn't have gotten this classic shot...
cheers to a very merry christmas!

Monday, December 13, 2010

twenty something...

at the grocery store today, i looked around and noticed i was in a sea of mothers...they were mostly young mothers driving to and fro in their minivans and suv's, toting one or two young children along side...carrying their strategically packed diaper bags and mastering the careful art of distraction. i looked around and wondered when i became this...when i jumped from single twenty something to wife and mother, and you could say it was the day i had camden, but it was more subtle than that for me...because i still catch myself thinking that i am just eighteen and then i notice the car seat behind me and the ring on my finger. but here i am...juggling this life i strategically plotted out for myself and until now, i was fairly unaware that my ziploc bags filled with cheerios, my pre-filled bottles, my diaper tote, the dried baby food stain on my jeans, the tiny sweatshirt bundled in my bag and this child attached at my hip designated me as a twenty something mother...and i couldn't be more happy about it...

Thursday, December 2, 2010

it happened...

on tuesday, i was at a doctors appointment, for myself actually, but brought along the little man because he has a runny, stuffy nose and i didn't want to inflict a cold upon any potential sitters. camden and i sat patiently in the waiting room and we were soon joined by a vibrant older woman who started a conversation about how ridiculously cold it is in utah right now, and of course i had to agree, being that it was fifteen degrees outside. she had an accent, it sounded european of some sort...i couldn't quite place it. she was oodeling over camden for a little while. we spoke of how tiny he was and that she had a granddaughter that was also very tiny, and she cooed and got him to smile a great big grin...and after a couple of minutes of exclaiming how adorable he was...she asked..."does he have down syndrome?"

i have thought of this moment for a while now...every time a stranger asked to see my little guy i waited for this question...i wondered if it would sting, i wondered how i would respond, i wondered if i would cry.

but i surprised myself...i smiled, and answered: "yes, yes he does!" and then i waited for the sting...but it never came.

and then something more surprising happened...this vibrant woman sitting next to me, who i had only known for maybe five minutes, began to cry. they were silent tears, and as she wiped them away she looked at me and said " i have such a special place in my heart for these little kids, i know they were sent here to teach us how to love".

i didn't quite know what to do, or how to respond, so i just listened...and she went on to explain that her very good friend had a boy with down syndrome, who was now in his thirties, and how special he was, and her many other encounters.

she was then called back by the doctor, and i was left in the waiting room alone, with my little boy. and i waited for the emotions to come, and i wondered which would join me in that room...i didn't feel anger, i didn't feel sadness, i didn't feel jealousy...i felt blessed.

Monday, November 29, 2010

thanks....

for this....and this....and this....
they just happen to be my favorite things....

Saturday, November 20, 2010

a little bit of snow...

billy and i may or may not have snuck out of the house after camden's bedtime tonight...to build a little friend...and throw a few snowballs...

and are now safe inside, sipping hot cocoa...because winter is here baby!

Friday, November 19, 2010

a big hat to fill...

he may have a little bit of growing room before he can officially say..."it's like an orange on a toothpick..." which may be his dad's favorite line from a certain movie...as well as our pediatrician's...oh you should hear the conversations that they get into...ridiculous...yes.p.s...don't mind that the lower half of his face is completely stained by baby food...and consequently a totally separate shade than his forehead...suggestions?

clarity....

there are these moments with camden, when he looks straight into my eyes, and it takes my breath away...because in that glimmer i see complete coherence, like the world is so clear to him...like he knows so much more than i do...and he stares straight into my soul...these moments come when that little boy of mine is tired and calm and while cuddling i tickle his face and his arms, and he reaches up to mine and he stares, right through me...and he gives a little side smile until his perfect eyelids close and he is gone. these are the moments when you see heavenly father's hand in a child.

Monday, November 15, 2010

lucky...

last night camden threw a bedtime tantrum that could have ended the world...it wasn't his first...at that age i suppose. i am learning patience i guess...but i get frustrated...mostly with myself and my determination not to just give in. so we rock, and he cries in his crib and we try the bottle...and it isn't because he isn't tired...it is because he wants to go to bed on his own terms...even if that means that he is fussy for two straight hours...so we are pushing through this "phase"...and having a sick kiddo for the last 4 days didn't help things. after an hour of wailing and thrashing that little body finally gave in...at 11pm. needless to say, i was done with the day and stormed into my bedroom very dramatic like and threw the covers over my pounding head...but then i felt a hand on my shoulder and a husband whispering: "it will be okay"...and it made me feel a little better. so, feeling bad for my mean mommy behavior i went into check on that little man of mine...and i found his daddy leaning over his crib, kissing him goodnight. and i realized how lucky i am to have this family of mine...tantrums and all.

Friday, November 12, 2010

the waiting game...

there are days that i feel as though this is my life now...i am constantly waiting...and when the day comes that things finally happen, i say hooray, i clap my hands and i move onto the next phase...and i find myself giving away the now. i was guilty of this long before i had my son...but it is more and more evident now that i have camden. we push, and push...until something happens and i see a new spark and we celebrate for all of 10 minutes and we move forward. which is the thing of progression and i am not discounting the necessity of such things, but sometimes i feel as if waiting is my entire life...and i don't want to look back at the end of things and see that i wasted 95% of my now's waiting for the next's. but i am torn...because, as a mother, there is this instinctual drive to push...to push forward...to push that little one i have been so entrusted with to reach his full potential...and so between the therapy appointments and the doctors we are pushing...because what if he doesn't make it to a goal? will i look back and say i should have done more? when i run out of the house to do errands or grab lunch, or try to get some free time, am i wasting precious time with camden? am i giving him all that i have? and when he leaves behind the "typical" time frame to accomplish things and moves into delayed stages i ask myself...am i enough? and i struggle with this at times...and i tell myself that it is up to that little man of mine...but how do you balance it? how do you balance reveling in the now and the pushing forward to the next?
...
i haven't quite figured it out yet...but when i hear that voice in my head questioning whether or not we did enough therapy today, i stop myself...and i think...today love is enough.

Wednesday, November 10, 2010

sometimes...

i have moments when i feel like this too...

photo courtesy of grandma caldwell

Saturday, November 6, 2010

letters...


when i was pregnant with camden i wrote him a series of letters...i started it out as letters to all of my children, but it eventually turned into intimate love notes just for him. the letters range in size and topic...some factual, some purely love and as i continue to add to them i find myself reflecting on the previous letters...the ones that i wrote before i knew camden...before we named him, before we could look into his deep blue eyes, before i knew he had his daddy's lips, before i held him for the first time...these letters were full of anticipation for future events, full of hope and expectations...i thought of these letters the day the words down syndrome first entered our vocabulary...i wondered if i would still give them to him, they didn't feel like his letters for a moment in time...i felt like they were meant for a different baby, one that didn't make it...
...
i looked back over them about two months after camden was born...i read through each and every one of them...i cried those mourning tears again...i felt the loss again...until i got to the last letter...the one that i feared reading most of all because it spoke of expectations and parenting and i wasn't sure i could keep my dreams anymore...but i read it anyway, and i noticed something...that letter was for camden, and no other baby...i hadn't even understood the words that i had written until this little boy fell into my arms...that letter made more sense now than it ever had before...

" So I was thinking today….about parenting….and being the right kind of parent to you. I am bringing this up so that you understand what type of parent I wanted to be from the start….before your cute little hands and toes cloud my better judgment and I want to keep them in impeccable condition forever….I know that being a parent will be the hardest thing I will ever do…and the most fulfilling…and I want to be the one that lets you bump into things here and there…because sometimes you need to…and sometimes reality isn’t always so easy to deal with…so dealing with it is the only way that you learn. I just keep thinking of Heavenly Father and the type of parent that he is…and being that freedom of choice is what this whole plan thing is all about , I can’t help but note that sometimes he lets me fall down….and so I should let you. because that’s really what a parent is for….not to catch you…but to pick you back up. So you might be reading this and laugh a little to yourself because I am sure at times I will want to jump in and save you and I will let my better judgment falter, but know that this was my intention for you….that I tried to be the best parent I could….that I put thought into it….but I know I’m only human, and well, you know what that means. And if at some point in the future I actually do my job….I am sorry that I allowed the world, or even yourself, to hurt you…I am sorry you had to understand and feel the pain of trial…but know it was not because I didn’t love you….it was because I did."

because now more than ever i am going to want to shield that little boy of mine, i am going to want to protect him from the world, only i know it isn't fair...and that the world needs him as much as he needs the world...and so at some unforeseen point in time...i am going to have to step back, even though it will be the hardest thing i have ever done...

"You, and your future siblings, are here for me….to teach me to love more fully, to be more compassionate to others, to show more charity, to help rid myself of pride, selfishness and fear. You are my greatest blessing in this life….you are here to help me to become the person that I was meant to become here on this earth, because no one else could ever teach me what you are here to teach me. You are not our trial, you are our reward."

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.

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