happy haunting...

trick or treat!

love,
the wild things

the good life...

i like to think that if people really knew what life was like with a child with down syndrome they wouldn't fear it, in fact they might even ask for it...because it truly is amazing. camden is just a kid, like any other kid...with just a little something extra. it really is hard to put into words how we as parents feel about our children...but that is what we tried to do this month...

kelli (another mommy) put together this video for our kiddos (you may see a certain someone), and hopefully you feel, just a little, of what we feel every day with these kids in our lives...thanks kelli!!! enjoy!

Make a video - it's fun, easy and free!
www.onetruemedia.com

the difference between a man and a woman...

this morning i got up, got ready, billy watched camden while i got dressed. i came downstairs to feed him his morning snack and realized he needed a fresh diaper too...so we proceeded with the diaper change, and cam decided to pee all over the jeans i had just put on. frustrating. and this is when my husband said:

"just wipe them off with a wipe, why do you have to change? the wipes have soap in them."

and i am sure you know what i said...

seriously.

chopstix...

pretty sure this kid could not get enough of the chopstick action tonight...he kept signing bird (because that's what the chopsticks look like they are doing) and he had to eat his food off them...the kid makes me laugh every day.



i am fairly certain camden has the taste buds of an adult, since he likes his food to have flavor, he doesn't mind spicy and he eats tofu like it's birthday cake...but he isn't into the sweet stuff, unless by sweet you mean vanilla pudding.

walking update...

cam might have decided today that walking is going to take priority over crawling...woohoo. meaning...he is up to four steps (remember...i had faith) and he isn't crawling to get close enough to something before he tries to walk to it anymore...he just stands up wherever he is...takes a couple steps, eats it, stands right back up, takes a couple steps, eats it...until he gets to whatever he is going for...he does this for distances within about ten feet...so no, he isn't walking ten feet all in one swoop but this kid is going places. and we are so proud of his enthusiasm.

GO CAMDEN!

normal...

you better believe i am posting twice today...because i suck and forgot again yesterday. so my first post today is kind of a repeat of an entry i wrote last year for down syndrome awareness month...but i find myself consistently going back to it, to remind myself of what really matters...so here it is:

"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."

stay tuned later for entry two.

rambling...

it's late, and i just remembered that i have yet to post anything for the day...so here is my attempt.

camden and his walking legs were on fire today...he still isn't taking more than three steps before he tumbles forward and eats the carpet...but, progress: steps one and two are getting a lot more stable, so that's good...someday he will make it to four...i have faith.

his little hands were on fire today too, he may have ripped out a chunk of long blond curls from a neighbors four year old (literally, he was holding them in his tiny little fingers)...so, i guess we are back to hair pulling. so fun. so suggestions on time out techniques out there? he definitely knows that it hurts (he tends to sign hurt before he reaches for the nearest head) but i don't know if he totally understands time out. the hair pulling took a back seat to biting for a little while, and that faded and was replaced with hitting, and now we are back to the hair fetish. and i know that this behavior is typical for the age but, seriously!!! i might be going nuts over here.

camden has also been making up his own signs over here...ya that's right, if he doesn't have a sign for it he makes one up...and although cute, i sometimes get lost and he gets frustrated that i don't know what he is communicating...like "mom! i am over here signing my butt off and you are oblivious!" some that i have figured out so far include: cookie monster: which is both fingers wiggling in front of his mouth (like he is cookie monster eating a cookie), bee: he tickles himself with one finger and says the zzzzz sound, up: he hits whatever he wants up on a couple of times...and so on. and when he signs a string of signs and i don't get the message right he shakes his head and says no, no, while doing a little finger wag and after a few incorrect guesses the tantrums kick in.

last but not least....camden may have fed himself a whole grilled cheese and most of his yogurt tonight! without chucking the spoon or the bowl anywhere and without hiding any of his sandwich under his thighs or high chair, seriously it was the cleanest meal i have ever seen him eat, and it was a good way to end the night! well, besides the whole falling asleep in mommy's arms thing, that never gets old.

pumpkins and patches...

dreams...

i wake up sometimes, from dreams that feel so real...and they are amazing dreams and heartwarming and in them camden is accomplishing great feats...in one dream a few months back, cam just stood up and started walking, and he was amazing and flawless (i have had this dream a few times since), sometimes i dream that he speaks eloquently and clearly, even if it is just one word, it is clear and concise and i know without a shadow of a doubt what it is that he is saying to me. and then i wake up, and i ask myself, was that just a dream?

they feel so real.

and i eventually come to, and back to reality and the knowledge of that sinks in, deeply. don't get me wrong, camden is accomplishing great feats, every day...and i know that one day he will walk across the room with ease, and he will speak beautifully and concisely...but he won't do it today.

a few days ago camden was looking at his electronic book and after turning a page he would reach up and push the tiny button on the top of the book to get it to read to him...i didn't teach him that. and i was thrilled, because for the first time in his existence he learned something without the concept being drilled into his brain, without going over it a thousand times, without hand over hand motions, he just...figured it out. and i realized then that other kids learn a lot of things on their own, no one has to move their arms and legs in a crawling motion, they just do it. no one has to twist their bodies and contort their muscles, no one has to walk through the motions on how to sit up, or how to pull up to stand, they just learn when they are ready to. and that amazes me.

but it also helps me to realize just how determined my little guy is, how much he wants to succeed. he deals with the hand over hand, and the twisting and contorting and the forced motions (most of the time) because he wants to learn! and i know that he will learn things on his own, and that he will continue to accomplish great feats...it is just going to be one day at a time.

savoring the sunshine...

selfish...

note: the following is rant, so reader beware. it is also my second post for today, making up for the day i missed ...

i read a comment on another mommy blog that was made in context of the new test that is out for mother's to diagnose down syndrome at ten weeks. the comment was made in defense of aborting a baby with down syndrome because the author thought it was a selfish act to bring a baby into this horrible world that would undoubtedly have so many hardships...they went onto ask who would take care of the child once the parents had died and asked how it is considered ok to place that responsibility on the child's siblings or society in general (as if we parents who have these children don't think about the future and provisions for our children).

i have so many feelings about this comment...more so than the usual uneducated comments. the first is heart ache, because this person lacks compassion, and i can't imagine a life worth less than one that lacks compassion for others. the second is anger, because to say someone is selfish for allowing a life to come into the world, regardless of the effects it will have on their own, is the least selfish thing i can think of. i didn't have a choice with camden, we didn't find out until birth and either way it wasn't a choice for us based on our belief system...but i can say that i only have the utmost respect for those who decided to love that little one growing in their womb, regardless of their fears for the future. third, people with disabilities not only contribute to society purposefully but inadvertently as well. they teach love, generosity, compassion and respect, which are all things i believe this world could use more and more of each and every day. fourth, who is charged with taking care of you when you get too old? your children? society? and is it then selfish to allow yourself to live that long? how are people with disabilities worth any less than any other person on earth? and how is saying that ok and not considered a form of racism and how is the act of trying to eliminate the existence of a certain type of person not considered genocide?

there are so many other things to say, but my mommy boxing gloves might come out with those, and i am sure that there are so many other things this commenter and i disagree with, like the existence of God, so i will leave it with reaffirming what i have said before...i love my son, he has made me a better individual, his life is worth living, even if he isn't what most would think of as "normal"...and honestly i can't think of anything more that i wouldn't want any of my children to be than "normal". i had no idea how worthwhile his life would be, until i had him...and anyone who says different has either no experience with the subject and is therefore wholly uneducated or has little to no compassion and lacking in the most beautiful and fulfilling human emotion, love without limitation.

he is valued, he is loved and does love, and his life does have worth.

the end.

caught on camera...

i finally caught this little guy on camera! for the last few weeks he has only tried walking randomly and i never had my camera, until yesterday when he decided he was going to practice all day!

fear...

if i could accomplish just one thing as a mother of a child with special needs, it would be to teach people not to be afraid. not to fear life's unknowns, not to fear the what if's, not to fear the misunderstood.

it would be to ask people to push their fear aside when they see someone who is disabled, in any way, and go say hello, or even just smile, instead of awkwardly looking away. i know it's hard...because you don't know what to say...will they think you are staring? what if they don't understand you, or hear you? what if?

and those fears are legitimate and understandable and all too common. and i know this because i use to be afraid too. but, i can promise you that it isn't awkward to make eye contact, it isn't awkward to say hello, it is never awkward to smile. i can also promise that you won't only make that person's day, but they will more than likely make yours.

so let's stop our fear in its track...let's overcome it. and soon, those scary misunderstood unknowns about life in general, might not seem so scary anymore. because nothing is more disabling than fear.

i'm not going to lie...

this whole blog every day this month thing is kicking my butt...how did i do it last year with such ease? oh ya...i didn't have a toddler. so in between the feeding, chasing, cleaning up after, putting to bed, and entertaining i haven't really felt like sitting down and racking my brain for a post. boo.

anyway, here i am...with nothing really to say except that this kid of mine...rocked my world, to the core...in an earth shattering sort of way twenty short months ago, and today, and every day since, he has continued to clear the clouds, to let in the sun, to teach me how to live and how to love. he has taught me how to persevere and to stand up at times i would have gladly sat down. he has taught me how to feel with every fiber of my being...he has helped me grow, helped me learn. i would not be the person i am today had it not been for that day twenty months ago.

family...

we spent last week in idaho visiting billy's parents...while we were there camden realized his mad potential as a future pianist...the kid can sit for an hour listening to grandpa play and banging on those keys himself...

he also decided that his favorite person in the world is his uncle chase...he even started saying chase last week...it sounds more like "aiz" because he doesn't know how to make the "ch" sound yet and his "s" is a little sharper and more of a "z" but that is what he is trying to say, and i couldn't be prouder of him!

formalities...

because it is down syndrome awareness month i thought i would write a little on interacting with someone with down syndrome, or any disability for that matter. so here are the formalities:

what is people first language?

when speaking to or of someone with a disability it is important to remember that they are people not their disability...so to break it down, camden (the person) has down syndrome...instead of the down syndrome boy or downs child. i try my hardest to remember this, but as most people i wasn't ever introduced to this until i had camden, so please know with all of these formalities i never take offense...but as a parent of a child with down syndrome i do try to educate, especially since many people do take offense and it's best to try and be educated when talking to someone about a subject. with that...it is also important to remember that people with down syndrome are just that...people, that they experience every human emotion, not just happiness, and quite frankly my toddler is getting really good at throwing tantrums that might end the world as we know it.

down syndrome vs. downs syndrome...

in the united states it is considered politically correct to refer to camden as having down syndrome, not downs syndrome or downs...however in the united kingdom and other places throughout the world it is still known as downs syndrome. the reasoning behind this difference is that down syndrome was named after john langdon down, the british physician who discovered it. in britain they note is as downs to show possession. and in the u.s. we have removed the possessive form: "In 1975, the United States National Institutes of Health convened a conference to standardize the nomenclature of malformations. They recommended eliminating the possessive form: 'The possessive use of an eponym should be discontinued, since the author neither had nor owned the condition.'" wikipedia.com

(again i am not ever offended, just a formality to me really, however it is the preferred language)

the "r" word...

so i know i was guilty of using the word retarded in my youth, and probably even right before i had camden...because i didn't ever really think about it. however, the word retarded is a medical term that has gained a negative meaning because of the slang use of the word. so...of course i would love to never hear the word again...but i know that i will, and all that i can do is advocate against the use. personally i don't take offense when i hear it in the slang use, because i know that it isn't meant for camden, and really, because i don't personally think of camden as retarded...even if the medical community does. but i do back the movement to end the slang use of the word and hopefully one day we, as a community, will think before we speak in general, and not just when using the word retarded but any word that has a meaning for someone else that might be taken as offensive.

and finally...i know i am not a good teacher when it comes to this, since i choose not to capitalize anything on my blog, and really try hard to ignore good use of sentence structure in general...but, the proper way to write down syndrome is to capitalize the d and use a lower case s....Down syndrome.

so there you go...what i know about the formalities...so try and incorporate them! and ps...i know i am guilty of being uneducated when it comes to other things and how to speak about or approach other topics that might be sensitive to others, because i haven't ever been in their shoes, but i do try...so cheers to making ourselves more aware of others and their unique situations, but i promise you don't have to walk on egg shells over here...because i know that the best way to combat ignorance is education.

when did that happen...

when did he become such a little boy? when did he transition from that tiny baby cuddled in my arms to a tiny but independent toddler? i love it when camden surprises me with a taste of personality, a little bit of him i have never seen before. when he decides to do something for the first time, or allows me to see it for the first time. when he accomplishes something he has been working up the courage to take on for some time, and when he knows he did something huge and praises himself at the overcoming such a huge task. he amazes me each and every day, and there is nothing more worthwhile than being able to watch him continue to grow into the that man he will someday become.

milestones...

check out this video to see how families live and love and celebrate their kids with down syndrome!

Milestones

welcome to holland...

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

Emily Perl Kingsley.

working hard...

grandma bush and i have been working really hard on my little family's halloween costumes for this year...and we are finally finished! here is a preview...

can you tell where we are going with this?
costumes in their full glory to come later on this month!!! so excited!

no excuses...

i messed up...i missed yesterday...in my defense, we are visiting with family and i spaced it. but no excuses i am getting back on the ball. so, with my lack of posting yesterday, i thought i would really put some effort into today, here it goes.

my little man has had croup for the past few days, the dr. put him on steroids to help open his airways, and i hate the sound of those coughs every morning and the inevitable feeling of helplessness when the humidifier and outside air just aren't getting the job done. so with that, we have kind of been taking it easy and with the sudden drop in temperatures we have been limiting our outdoor festivities to quick car trips and maybe lunch out, with the occasional walk out to the backyard apple trees. but he likes it outside. and stands at the back door waiting for us to let him explore, and well stalking the cat. and i hate thinking that he feels left out...

so on this october 12th, as i sit and think about down syndrome awareness, the back of my little guys head has me tied up in knots wondering how often i will see this picture throughout the years...how often i will wonder how he is feeling when he begins to notice that his peers can do things a little easier than he can or even perhaps things he can not do at all. and it hurts to think about....because no mother ever wants to think about the loneliness her child might feel, that feeling of being left out.

and i know it will come, inevitably, here and there...but i also know that he will have glorious moments of kinship...that he will make friends, that he will have companionship, and that he will be able to do things right along side his peers too. and i realize that every kid has that feeling of loneliness at one time or another, i still get that feeling...and that it isn't out of the norm for him to feel that way, in fact it is more normal than anything. because some kids are beautiful artists, some are fantastic dancers and some breeze through school, but no kid does everything with the same ease as their peers...and camden is no exception to that rule, and it's ok, because he will have success and he will have happiness in his very own ways. and i am thankful to be his momma, to watch him blossom, to see the excitement in his eyes, to feel his tiny arms around my neck, to know that he loves and is loved and that those things won't ever change.

and if it's not too much to ask, try a little harder this month to include someone who might be feeling a bit left out, because we all have known that feeling at one time or another, and we will probably all feel it again.

apples...

it was a good day...

at a loss...

i was planning on posting a new video...but i can't get it to work, and well i am at a loss on what to write about tonight, so i will keep it simple.

from the ndss:

"Why are medical researchers today so keenly interested in Down syndrome?

Down syndrome is a developmental condition. As researchers learn more about the molecular genetics and other aspects of Down syndrome, they also obtain valuable information about human development and can advance the study of many biological processes.

In addition, individuals with Down syndrome have a higher incidence of certain medical conditions, and the study of Down syndrome may yield important breakthroughs in those areas. Research in Down syndrome provides a way for looking at many important problems:

• Heart disease: Up to 50% of individuals with Down syndrome are born with congenital heart conditions. The majority of heart conditions in children with Down syndrome can now be surgically corrected with resulting long-term health improvements. However, scientists continue to search for the cause of these heart conditions and look for means of prevention.

• Alzheimer's disease: Estimates vary, but it is reasonable to conclude that 25% or more of individuals with Down syndrome over the age of 35 will develop the clinical signs and symptoms of Alzheimer's-type dementia.

• Leukemia: Approximately one in every 100 individuals with Down syndrome will develop leukemia; or, to put it another way, 99% of people with Down syndrome will not develop leukemia. The majority of cases are categorized as acute megakaryoblastic leukemia, which tends to occur in the first three years of life, and for which there is a high cure rate. A transient form of leukemia is also seen in newborns with Down syndrome, disappearing spontaneously during the first two to three months of life."

i love him...

more than words could ever say. and like any momma, i don't have any idea what i did or would do without him. he is my everything.

traits...

random fact: "a few of the common physical traits of down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. every person with down syndrome is a unique individual and may possess these characteristics to different degrees or not at all." ndss.org

camden has all of the above mentioned traits...he has isolated areas of lower muscle tone...we noticed it in his forearms when learning to crawl, i see it in his ankles while he is learning to walk, and in his mouth (which makes speech particularly more difficult for him).

the kid is tiny...he was 30 inches long at his last checkup which is average for a child his age with down syndrome...but he has a super hard time gaining weight, even for a child with down syndrome.

he has a slight upward slant to his eyes, i notice it particularly with his right eye.

and he has a simian crease across both palms of his hands, which looks like one single crease from above the thumb across the palm to below the pinkie finger.

camden also has...my blue eyes, his daddy's lips, my chin, his daddy's blond hair, his grandpa's round face, my thin stature (well when i was a kid), my outy belly button, his daddy's skin tone, his grandpa bush's outgoing personality with a hint of mommy's shy streak. he is definitely more us genetically than he is that extra chromosome, as all people with down syndrome are more alike their families than they are different.

videos...

camden loves books these days, he has a ton of them...but his favorite is "are you my mother" by dr. suess....



he also can't get enough of that daddy of his :)

lovin' it!

day five...

i have shared this on the blog before...but every time i hear it again, it tares a little piece of me away...nine out of ten women who are given a down syndrome diagnosis prenatally choose to terminate.

when you are initially given the diagnosis you think that your pain will only come from the idea that someone might one day not accept your child....that they might have to deal with ignorance, and not be able to defend themselves...and i can tell you that that pain is still very real but the pain that comes from wondering what would have been camden, if he had not been mine, is also very real. the pain of knowing that this little man of mine, who is everything to me, had a ten percent chance of surviving a pregnancy, not because of health but because of inconvenience, ignorance, fear or pride, that kills me. and everyday i look at that face and am overwhelmed with gratitude that he came to me...because regardless of popular belief, his life is valuable...and will continue to be of infinite worth. he contributes to society everyday, and he isn't even yet two...every day that kid smiles and laughs and i wonder what people are thinking when they speak of quality of life, because this kid knows how to live and how to love and that is quality of life. my son deserved his right to live, and so do the other ninety percent...and i know looking from the outside in that it might be difficult to fully understand, but i can say without a shadow of a doubt that camden is exactly who he was meant to be, and it is a life worth living.

button...

when i was younger i was obsessed with drawing precious moments characters, don't ask me why, i don't know...but i remember that my favorite part about those oh so lovable kids were there ever so tiny button noses. i envied their perfection and wanted one all for myself...little did i know i would one day get one...

it happens to be my favorite part of him too.

wobble wobble...

guess who just took his first deliberate, all on his own step...that's right...the cam man!!!!!! pretty good for day three of 31 for 21 :)...he just wanted to be sure to show off for you all! i am pretty sure i almost cried...we have been practicing for a little while holding onto the back of his shirt ever so lightly and pushing him to walk forward and letting go to get him to take one or two steps on his own...but today was the first day that he deliberately stood up on his own, in front of the mirror of course....and took one step forward all on his own, leg bent and off the ground and replanted all on his own, and then he lunged forward onto his hands. he is on his way!!!!!

not the plan...

when camden was born i remember distinctly thinking, this was not in my plan. i had little to no experience with anyone with special needs and although as a mother to be all of those what ifs run rapidly through your head, you definitely don't plan on them. i didn't quite know how to respond to the sudden change, i felt hurt, i wondered if it was some how my fault, i flashed to an unknown future, i thought about hospitals, i wondered how long my newborn would make it, i feared for his future, and selfishly mourned what i thought was the loss of the plan i had laid out for myself.

then i remembered something, it isn't just about my plan....because i believe that my Heavenly Father has a plan for me too...and once i remembered that, i realized just how beautiful and exciting adding this journey to my plan could be...even if sometimes i might face an uncertain future (as we all do) i can feel peace knowing that i am not alone. camden has brought more love and joy into our home than i ever thought possible, and everyday i am thankful for the ability i had to reach out, scoop him up into my arms and add him to my plan...because sometimes the things we think we never would have wanted in this life become more than we could have ever asked for.

"if you want it...work hard to create it, but leave cushion for the unexpected and embrace everything outside of that 'perfect' vision as good and meaningful parts of your story you would have never had the opportunity to know had you stuck to the script."

kelle hampton, enjoying the small things

happy october...

my favorite time of the year...pumpkins, sweaters, boots, hats, pumpkin pie, pumpkin jambas, candy corn, costumes and down syndrome awareness month!! this october, i am doing the 31 for 21 blog challenge again, meaning i am posting everyday through the month of october. it probably won't always be about down syndrome this year, but it will always be about the love of my life. so be sure to stop by!

thanks for making me a mama camden!