Thank you...

When Camden was younger, a baby, I rocked him to sleep. I would get lost in time in that rocking chair...holding him snuggly in my arms, as if he was the reason that I even had arms to begin with. He fit perfectly there. I remember staring at his petite features for what felt like hours at a time...he was like fire and I could feel my instincts instructing me to soak him in, to breathe every inch of every moment in. His breath was sweet from the milk that I pumped for him, and it got heavier with each second of sleep. His features were so tiny and petite...his button nose fit so beautifully in the middle, his eyes framed by full, long, dark lashes; his dimpled chin set just below his full red lips on the palette that was his porcelain skin...showing just enough blush in his cheeks. He was perfect...every inch of that sleeping face. And I remember wondering how anything so perfect could ever be imperfect. He was my proof of the existence of God...it was impossible, in my mind, for something so pristine to exist without a hand to help guide it into existence. A fierce love bloomed in that rocking chair...in those moments where time stood still and I filled my entire being with the breath of my baby. 

My baby is a child now...and I still find myself lost in gratitude...I still find myself staring at his sleep filled body...soaking in his perfect features. Wondering how I could be so lucky.

Thank you for following along this month. For allowing a bit of perspective to enter into your own lives. For hearing out the words of a mother who fiercely and loyally loves her children...and who wants to share that with the world around her...in the hopes that this world will be able to love her children too, that we will all find that little bit of heaven in those around us.

Happy Down syndrome awareness month!

Choice...

While camden was in the nicu a (well meaning) social worker stopped in frequently...just doing her job you know. Once after looking at Camden, she looked at me and said "there are lines of people waiting to adopt babies like him". At the time I was numb and didn't really know what to say or how to take it...was she saying I was lucky? Or was she giving me an out? 

Here we were, two young (25) kids...who just got slapped with a special needs child right off the bat...our lives would forever be changed you know...they wouldn't ever be the same...did this social worker just want to make sure we knew that, that we could "opt out" essentially if we felt so inclined?

Because that's unfortunately what our society does these days...life threw you a curve ball? Ah well just opt out. Because, change can be good you know, but only if it is the change you wanted or asked for...don't you let that thing called life play any sort of tricks on you. 

Because, you know, loads of people want to adopt kids with Down syndrome, they just don't want to have them on their own. 

Over the last three years...I have learned why life throws those curve balls our way...and I have mine to thank for that. I am ever so glad we never wanted to

"opt out" because this kiddo, well he changed our lives alright. We were definitely never the same you know. Once that muddy water called preconceived notions cleared out, what we were left with was an immeasurable sense of satisfaction and joy...we were left with a perfect child, who is loved unconditionally...we were left with an amazing support group, who have become friends and family...we were left with a little boy we wouldn't change for anything...and a new view on this world in which we live and it's ideas of perfection. 

What society doesn't tell us is that sometimes those curve balls are exactly what the doctor ordered. That every child is a gift from God, even the ones society will tell you to opt out of. And sometimes the right choice is not to choose. 

If I accomplish anything...

If I accomplish anything while raising my children...I hope that it is to be happy with who they are. To be able to say that they are fulfilled and to embrace each of their lives, the good and the difficult. 

I know that there will be days growing up when they feel like maybe they drew the short end of the stick...when they come home in tears because that boy down the street can kick the soccer ball better than they can, or the other kids at school don't have to work as hard as they might have to...but I hope that they can learn to understand that each person is unique and that each person brings something of their own to the table of life. That we each have challenges, some more obvious than others, and that those challenges help to mold us into who we are to become. That life isn't about being perfect, or even the best...it's about being you...and embracing and loving yourself and the world around you. 

Because there will always be people there to tell them that they aren't good enough, that they aren't worth it...and I hope that I, as their mother, can instill the courage that they will need to stand up and let the world know that they are. 

I write these words, these hopes, while I watch my oldest eat his snack and pretend to play air guitar while listening to a song on the iPad. And I wonder...how much of my perspective about life has been altered because of him. But whatever conclusions I have come to on his behalf, I am thankful for them. I am thankful for the opportunity I have been given to love this tiny person. I am thankful for the opportunity to see a beauty altered from that of society.  To see the joy that he takes in the little things in life. 

And I know that my hopes and dreams of raising confident and self aware children are largely because they are growing up in a society that believes that children with special needs are a burden on their families and their countries...so much so that it is considered socially acceptable to abort a child with a prenatal diagnosis of Down syndrome, at a rate close to 90 percent world wide. They are being raised in a world who idolizes a false ideal, who will tell my children that they are sorry for the ways that they aren't that ideal...who will walk up to a young mother in a grocery store and after apologizing for that mother's child will ask if she has ever considered giving her child up for adoption (this recently happened to a friend). 

And I need my children to know that the world is not their idol...that false realities and visions of perfection are not their goals...that they have been given everything in this life that they need to succeed and that they will succeed. So that when something happens...because it will, and the world tries to knock them on their back, they will respond like that above mentioned young mother did when she told the world of the blessing that her "imperfect" child is, that her life is fulfilling and that he is just as deserving of the love of a family as anyone else...that they will have resolve and comfort in knowing that all humans are valuable, and here to be loved....including themselves.

Confession...

throughout my entire youth i had maybe spoken to someone with down syndrome maybe twice...i just honestly didn't cross paths. once my youth group put on a carnival for kids with disabilities and i painted a girls face but that is the only time that i can remember before the age of 18. 

i am not sure why, but i always felt kind of awkward around people with disabilities. i never knew what to say or how to act, and i am sure that was largely due to lack of exposure and some insecurities on my own behalf (you know how kids are). i never felt like i was better or made fun of anyone but still i just didn't feel right.

once, i was on a group date my freshman year of college...it was kind of an "I'll set you up if you set me up" scenario...awkward anyway. the girl i was with had volunteered for a dance with the local down syndrome foundation and we all went along for an hour or so...I did not know what to do with myself. 

a young man came up and asked me to dance...and i awkwardly told him (right in front of his dad): "thank you, but i'm here with someone". i wasn't thinking. i immediately regretted my words. the young man didn't care...but i could see on the face of his father, the disbelief...the horror in his eyes...as he scooped his son away and said "that's ok we will just ask someone else". i am not sure what happened after that...i might have danced with someone else, i might have just stayed a wallflower at the table, i honestly can't remember. that single instance has haunted me most of my young adult life. It weighed heavily on me then....and it still does today. when my child bearing years came i remember wondering if karma would kick my behind and give me a child with a disability, the incident was that scarring. 

and then i had camden...and the guilt was immeasurable. some part of my subconscious blamed his down syndrome on myself. all because i didn't dance with that young man. i knew it was irrational...and self harming...but i couldn't help it...it was too coincidental. karma i told myself. this is what you get. 

and then...i fell in love with my karma. i realized that this little child was no punishment...that he was and still is a blessing. and i know now, that i needed him....that my heart needed him. his little life was not a weight thrust upon me by God because I didn't act appropriately...he was my teacher though...one that came with love, and tenderness. 

i was a firm believer in that first year, that my child did not need me...he was not given to me because i deserved  a child with a disability, because i was being punished...or even because i was somehow magically a better parent and more capable to handle him...he was given to me because i needed him. because my Heavenly Father wanted to bless me with a softer heart, greater compassion, and the ability to love unconditionally. and maybe that incident happened to prepare me...to have more compassion for the people of the world...to be more understanding towards the people that just don't get it...because i was there once too. 

It is funny how life works out.

moments...

i am distracted...doing other things i suppose, probably things that are time wasting and not important in the long run, but they are easy distractions and sometimes your mind needs a distraction.   i hear a tiny voice...he is trying to get my attention...finally he puts his little hand on my leg and says "mommy".  i look down, my distractions aside...and see two beautiful blue eyes gazing up at me...and he smiles...the kind of smile that makes your day...that sucks you in, that somehow assures you on the worst of days that everything will be alright. these are the moments i dreamt about when i saw that plus sign on the pregnancy test...these are the moments i felt ripped from me when i heard the words down syndrome that day three years ago.  sometimes he doesn't have anything to say...he just wants my attention, sometimes he asks softly for "a show" or "crackers" or something else he can easily label.  his voice is quiet, and his words are sometimes difficult to make out, but they are words none the less. he doesn't speak with the ease of a typical three year old.  speech is difficult for him, and it probably always will be. he works hard to find his voice, to get the muscles in his mouth to move the way that his brain wants them too...he struggles to plan his sentences and to formulate new thoughts with them, to find the courage to speak in front of others.  but, he is speaking...here and there i catch a glimpse of his potential and it sets my mind at ease...and even if he never speaks with ease, even if his thoughts are fragmented into adulthood i know his language, i know his heart and soul and i know he will find a way to get his words out, even if it isn't always through speech. 

in the hallway i can hear their laughter, i can hear them communicating with one another...neither speaks full sentences, one not at all...but still they find a way to hear the other, to play and to laugh as if they understood a joke or could plot their next move. the giggles are in sync and then at times in turns.  they wrestle and laugh and love the way that i always dreamed that siblings would.  these are the moments that make my day more than just a day, these are the moments that make your heart sore as a parent...these are the moments i felt ripped away that day three years ago.  

as we wait for the bus i can hear his tiny feet running with speed behind me, i hear a high pitched little squeal as his feet move faster and faster down the driveway and then he grabs me, he reaches his arms all the way around me and as i turn to look i see him, with a wide grin and a happy heart lean in and laugh with his whole body...and then he kisses me.  these are the moments that i love, that i live for.  these are the moments i felt ripped away three years ago.

tears are pouring down my cheeks, and my heart is heavy.  he always finds me, he always knows...he looks up with concern, and i smile down to show him i am alright, and he smiles back...he hugs me and comforts me and makes sure that everything is alright.  i could never have dreamed that up, i could never have anticipated that...

his heart is pure and healing, his hands are soft, his demeanor is tender and his words are quiet, his laugh is infectious and his hugs and kisses are irresistible.  he can manipulate his way into things when he wants to, he can love his way in if he wants to.  everything is on his schedule, as childhood should be.  and suddenly three years later, those moments once ripped away, are back, and i am whole.  i am better, those moments are more than i could have anticipated, life is better than i would have imagined it to ever be. 

october 1st...

it's october...yes i am a pathetic blogger.

right now i am listening to the cries of my three year old who instead of staying upstairs to play in his room, wants to go downstairs.  well, that isn't happening so here we are, trying to blog while my little boy cries madly on my leg.  i am holding strong though, he knows that i said it isn't time to go downstairs, but he also knows, like any three year old, tantrums unfortunately sometimes work

two seconds later, he has given up his tantrum for a softer demeanor, sniffling just here and there and requesting that i hold him on my lap while i type.  he is a smart, tiny manipulator of a three year old this one.  he knows what gets him his way. 

i am not sure what i envisioned my life like before i had children.  i had no idea what was coming to be honest.  no one can ever prepare you for parenthood. no matter how many times you saw someone shushing a child or waiting out a tantrum in public, as you quietly made accusations in your head, you can not ever know what to expect to come your way.  you could never know the pure level of exhaustion that each and every parent is feeling every single day.  and you could never know how in that same moment, a fierce sense of satisfaction and joy can quickly over take even the weariest of parents, all because they heard their child count to ten for the very first time (me today).  it is a strange thing to parent children.

i am the mother of a three year old and an eight month old.  both boys; both cuter than i could have ever dreamed them up; both have needs and desires all their own; both require a lot of time and energy, and patience.   i am in love with each one more than i could have ever thought to be possible.

hendrix is the baby...but growing each and every day at a rate that is mind boggling and scary at the same time.  his smile melts my heart and warms my soul. He is determined to accomplish great feats, like crawling and pulling to stand...he communicates, although not verbally with an instinctual manner that amazes me each and every day...but, he is stubborn, just like his older brother. 

camden is three...he was my introduction to parenthood, he was the first to knock me off my feet and help me feel that soaring love that i hope every parent gets to feel on their journey.  the day that he was born is all a blur now, and was definitely and distinctly different than his brother's birth...the days that followed were dark and somewhat lonely...there were tears shed in his first year, there were moments of pure humility and insignificance. there were thoughts thought that i dread to think about now, that i am ashamed of.  and all because he was given something that most babies are not.  an extra chromosome.

down syndrome...those words were heavy in my ears that day three years ago. heavier still were the medical complications that followed them...words like low muscle tone, heart defects, leukemia, alzheimers... they were so heavy, they seemed all encompassing.   i remember searching a pamphlet that we received in the hospital for pictures of other kids that had the same diagnosis...i remember trying to find camden, searching for a picture that might give me some idea of what he would look like as a toddler, a child, a teenager.  i remember feeling like i was stuck in a fog...like i was waiting to wake up from a dream...this couldn't be real. yet every morning i would wake up to an alarm set for eight, to a belly no longer full of a growing baby, i would get dressed and put a smile on and drive to the hospital to feed my newborn.  i would hear nurses dote over him, and then get the latest news on his oxygen levels, his blood sugar, his jaundice, his heart defects, his lack of ability to feed.  every single day was an emotional roller coaster.  my mood changed from one feeding to the next.  i just wanted him home, to be able to forget, even for one second, the doctors, the diagnosis. after ten days we got that...we brought him home.

in the year to follow camden taught me more than anyone has ever taught me.  i grew, my entire being stretched and shifted...it was like my eyes had been opened.  at times it isn't easy to accept change...it can be painful...because if it isn't the change you foresaw or wanted, your instincts are to fight against it...to mourn change as a loss.  but something happens when you wake up, surrounded by that change you feared would surely ruin the plans that you had ever so thoughtfully laid out for your future...something happens when you learn to accept change...somewhere along the line you realize that your plan wasn't the best plan...that you are a better version of yourself because of change, because of adaptation to this difference...it's an evolution of soul, and it's wonderful.  i have my first born to thank for that life lesson...and the many that followed...i have him to thank for the growth of my faith, for the ability to see so much more than a disability, for the opportunity to love more than i ever knew possible.

three years later i have a preschooler...and our day to days aren't focused on down syndrome, even though sometimes we deal with its ramifications...our day to days are focused on having a rambunctious three year old. a three year old who loves his parents and younger brother, who likes to make his own wants known, who is stubborn and difficult, as most three year olds are.  who likes to learn, things that he is interested in.  who likes to swim and watch his favorite movies, over and over and over again.  he is exhausting in all the ways that a three year old should be...and even if we do deal with a little extra because of that extra chromosome...he is worth it and he is loved beyond measure.

october is down syndrome awareness month.  and because a nurse once told me in the nicu "you have to be his advocate, when no one else will be" i will be his advocate...because he made me a mother, because he stretches me every day...because his little soul was entrusted to me, to love, and to honor, to teach and to allow to blossom into the man that he will one day become. and i thank my Heavenly Father every day for that.

World Down Syndrome Day...

Today in our home we are celebrating our oldest...and that extra special little bit of extra. Life would not be the same without our little stud muffin...and we can not thank the Heavens above enough for everything that he has brought into our lives. He has given us perspective, taught us perseverance, brought unconditional love into our home and he makes us laugh every day...we are better because of him, and that extra chromosome. Thank you Camden for choosing us.

Help us spread Down Syndrome awareness today by wearing blue and yellow or sporting your funkiest mismatched socks. Today was chosen (3/21) because of that third 21st chromosome.

Happy World Down Syndrome Day!

Spread the word...

Today is the official "spread the word to end the word" day...the "r" word or "retard(ed)" has a formal definition, it means: someone who is slower to advance (mentally) for their age...but in today's society...through popular movies, music, and in everyday speech this word has been changed to mean something less than, dumb, ridiculous, or disliked...take the pledge at www.r-word.org to help us officially end the use of this word...let's all think before we speak, eh? Camden thanks you in advance and maybe he will get to grow up in a world where this word is taboo and he is accepted for who he is.

Think about it...

In 2008 it was reported that 90 percent of women who received a prenatal diagnosis of Down syndrome in the US chose to abort. A recent study done in 2012 showed this rate had dropped to a range of 67-85 percent (depending on where you live). In places like the UK and other countries however, rates are still above ninety percent.

Think about that for a minute. Down syndrome is the most common occurring genetic "abnormality". This is the most difficult subject for me to tackle...and mostly because of the thought that the majority of the society in which we live today believe that my child doesn't deserve the right to live. I am not going to argue my pro-life stance today...or talk about how an extermination rate of an entire group of people with an average around eighty percent is nothing aside from genocide, in my opinion. Instead, I want mommy's who may be reading this, dealing with this decision, to understand whom it is that they are taking away the right at life.

Camden turns three in January...he is rambunctious, sassy, opinionated, loving and lovable, smart, manipulative (what toddler isn't), unique, strong and hilarious. Camden has Down syndrome...a prenatal test could have told me that...but it wouldn't have told me who he was going to be. It wouldn't have told me that a hug and kiss from him could heal any wound, it wouldn't have told me that he would be the strength in our family, it wouldn't have told me that he would love tv (ya it is problem)...it wouldn't have told me that he would have a mind of his own...it wouldn't have told me that he would be shy...it wouldn't have told me that he would touch the lives of the people he encountered.

Children like Camden are growing up everywhere to beat society's odds...to have lives of their own...to be accomplished...to love and be loved, to lead happy, fulfilling lives...to inadvertently teach compassion and joy. They lead lives of value beyond comprehension, independently or dependently. Camden does not suffer...he enjoys the same activities that other children do at his age...he laughs every single day...he smiles every single day...he is loved every single day.

And maybe the choice you are about to make has less to do with the child's state of life and more to do with the thought of you mothering a child like Camden...and to that I say, you can do it. Your life will go back to normal, you will keep friends, and go out with your husband, you will love your child, you will think they are the cutest child on the planet, you will have hard days and good days, you will get over the pain that you feel from the diagnosis, there will be days that you forget your child has a diagnosis at all, you will find a sense of meaning and joy in this journey.

So before you listen to the geneticist about potential issues that may or may not arise in mothering or being a child with Down syndrome...before your fear of the unknown takes over, before the thought that no life is more merciful for a child like this takes over...think about it. Think about that rambunctious three year old that you may be keeping from having an existence, from being able to choose what color shirt they want to wear and talking about what they want to be when they grow up, the child that would have no first date, no chance at finding the love of their life, no chance at happiness at all. Just think about it.

step by step...

 

it may have taken us almost five months since the day he took his first steps...but he is finally getting there...and loving walking again!

on a side note...in honor of World Down Syndrome Day on 3-21 i am linking up to this little post...the impact of down syndrome...where several fellow mommies, including myself, were asked how having a child with down syndrome has changed their lives...it is just the first in a series of posts honoring our littles on this blog, so be sure to follow along.

camden is turning two...

our littlest big boy is turning a whopping two years old next week..we are having a party to celebrate at our place on saturday the 28th (you will see a formal invitation on the blog soon)...i am so in love with this age...tantrums and all :) at almost two camden is....

*a first word user (meaning he uses single words, and copies or tries to copy the things that you say) words he uses on his own include: mama, dad, chase (ase), toe, two, turtle (tuwtuw), bye, that (dat), no, more (mo), oh, wow, santa (anta), nigh nigh, grandma (um ma), grandpa (pa), thank you (an ou), all done (a don), yes (es), head (ed), snow (noh), me (meh), yay...

*he will tell you what a cow, dog, cat, duck, monkey, bee, snake, gorilla, bear, tiger, dinosaur and wild thing says when you ask, or he sees one, he also knows most of the signs for different animals. 

*we stopped counting when he hit his seventieth sign, and he has learned so many more and he will often combine signs...like "roll ball"

*he understands a ridiculous amount when spoken to, and can answer a question he knows instantly...although he chooses quite frequently to ignore you.

*he gives hugs and kisses on demand.

*he can point to his head, toes, hands, ears, eyes, nose, mouth, head and hair when asked.

*he is walking! when he wants to...and he will only do something for people he doesn't totally know when he feels 100% confident about it. 

*he can walk up stairs with two hand support, alternating feet.

* he can turn around and go feet first off anything: down the stairs, off the couch....

*he dances standing up without holding onto anything, the kid can shake his little booty.

*he can bend over in the middle of the room and pick up objects and stand back up, sometimes walking them over.

*he uses a push toy and can get on, off and ride a push car.

*he can get up into a kid sized chair on his own and turn around.

*he can push his chair over to the couch and use it as a ladder to get onto the couch, although he doesn't like to if it feels unstable at all.

*he loves anything ball related, he loves to roll and throw them.

*he knows the words and signs for the colors: blue, yellow, red, green, brown,  black and white...and is beginning to understand the concept behind color (he is pretty consistent with red and blue)

*he is stubborn as all get out and hit the terrible twos around 18 months...lovin' those fall to the ground and kick tantrums...my fav.

*he is a great eater...finally! 

*he can use a spoon, although he is still working on consistency with the scooping action.

*he is learning how to use a fork and is getting pretty good.

*he drinks from a straw and open cup

*he can do simple matching puzzles.

*he loves to feed his elmo and cookie monster and knows how to get the cookies out of cookie monster's backpack, feed him and start over, he also loves to rock and kiss baby dolls and chuck them across the room when he is finished, haha. everything is a phone. he also likes playing with cars and doing the sound effects.

*he can work push button toys without help, and can navigate some apps on the ipad.

*he is quick to pick up on how to make things work.

*he loves to open the garage door, and has to do it every time we enter or exit.

*he knows the actions and signs to the following nursery rhymes/church songs: itsy bitsy spider, the wheels on the bus, patty cake, book of mormon stories, popcorn popping, up up in the sky, twinkle twinkle...and asks for each quite frequently

*he loves bubbles and can blow out of his mouth (not strong enough to get the bubbles going yet, but he is getting there.)

*he can put pegs into holes.

*he can do the ring stacker, stack 5 plus blocks and the shape sorter (most consistently with the circle, square and triangle)

*he is the first to fold his arms at the dinner table awaiting the prayer

*is obsessed with signing time and finding nemo, and asks for them anytime he can see a tv in the room...he loves to chant like the fish in the tank and pretend he can speak whale like dory.

*he knows how to work the dvd player (we had to turn off the touch screen buttons on the front so he couldn't get the dvd's out anymore)

*he loves rocking out to music...any kind, and can sing away into his pretend microphone like no other.

*he helps with chores...like wiping down the counters or floor, sweeping, laundry (more often than not he ends up making more of a mess, but that's ok) and when asked and in a good mood he will help put his toys away. 

*he can also make quite the mess, dumping toys out everywhere, emptying the cupboards and drawers, we can't leave the toilet seat up, 

*he loves to play instruments: drums, piano, shakers...you name it, he will play it.

*he signs potty before going number two :) and has been known to bring me over a diaper when he needs to be changed and there is one lying around.  he has also gone to the potty on his training potty multiple times, no we aren't training but getting him use to it here and there and really just trying to keep him from going in the tub. 

*he hands me his bottle when it is empty and he wants more.

*he loves books, he mimics the facial expressions of characters in the book, turns the pages, signs and points along as well. 

*he knows his signing time dvd's so well he signs the sign that is next before she gets to it.

*he goes to nursery at church and even though we requested an aid it hasn't worked out quite yet, but he is doing great in there anyway and eats his snack, listens to singing time, bugs the leaders to hold him, gives them hugs and sits independently and attentively in a kid chair with the other kids.

*goes to music class and a toddler class through early intervention, goes to physical therapy twice a month, sees a speech therapist here and there and has an early intervention coordinator pop in twice a month.

*his dr appointments have slowed and he is on a typical schedule with the pediatrician and doesn't need to see a cardiologist again until he is three.  

*he still has a hair pulling problem, although i have noticed it is when a kid invades his space bubble or he wants their attention...we are working on it, he also tries to kick them away if he is annoyed and when he gets hurt or angry he hits...again working on it. 

*he likes to wash his own hair, rub in his own lotion and brush his own teeth and hair.

*and if you ask him "camden how old are you" he holds up one and a half fingers and says "two!"

i love this little man of mine so so much and i am so excited for what the future holds for him...

2 for 2...

i found kelle's blog just weeks after having camden...at this point we were already falling in love with camden and watching kelle fall in love with nella at the same time was such an amazing adventure for us...kelle's blog: enjoying the small things has done so so much to raise awareness for the down syndrome community...last year for nella's birthday her readers raised $100,000 in just a few weeks for the ndss and this year her goal is $200,000 and with still a few weeks left to go she is already over half way there! it is definitely a blog worth reading, even if you don't donate to nella's 2 for 2 fund...however, her goal always hits close to my heart, since nella and camden are just two days apart and on similar journeys...

and as kelle explains so beautifully in her post...our kids are valuable and their futures are limitless.

preferences...

as of now camden still prefers to crawl...i on the other hand, would prefer he get off his little tushy and walk. i don't think it is too much for me to ask, since two plus months ago he showed us he could and he is up to ten consecutive steps now, and understands how to slow himself down and balance. apparently camden doesn't see it that way. about a month ago camden tried out walking to get around, and somewhere along the line, he decided he prefers his hands securely on the ground. his therapist even wrote the following on his report last week: "camden is able to walk, but chooses not to"... i can't say that i blame him, he is a fast little fireball on all fours...but i am dying a little over here.  the only time he will stand up and take steps is if we are begging, pleading with him to do so...and so for the last few weeks, i have been pretty down about it.  and then this morning i was getting ready and i watched him in the mirror come crawling in from the hallway, and i realized that i should be cherishing these last few months of crawling, because i know soon enough he will stand up and take off on two legs, and that little piece of baby in him will be lost forever.  so crawl away little man...because you are getting bigger everyday, and a part of me just wants to yell "STOP!"

holding on a little bit tighter...

i watched a video on facebook today, and i broke down bawling on our way home from christmas shopping...it made me want to hold onto this little boy of mine a little bit tighter...it made me ever so thankful that we still get to see that tiny boy every day, and it made me thankful for the opportunity i have to be his momma...because every child is a blessing, and every life teaches a lesson...and often times the shortest of lives teach in the most profound of ways. everyday that i get to wake up to his smile i learn something new about myself, every story that touches our lives through camden helps me to understand our own a little bit better...and today i am ever so thankful that billy and i were somewhat oblivious to the dangers that camden faced in the first few days of his own life...because it is only now, that we are on the other side, that i look back and realize just how little i was in control, and just how easily things could have taken an entirely different direction...and i know now that if they had, or if they ever do, we will be alright, because i have faith in our eternal family and know that sometimes all you can do is take a step back and realize that someone knows you, loves you and has a plan for you.

and with that knowledge comes the peace of knowing that everything will always be alright, even if it isn't what we had planned out...that every single moment counts, big or small...and that embracing those moments are what makes life worthwhile...

so we are alright with the messes...

we are enjoying the hugs...and the giggles...

the ever blossoming toddler that we call ours...

even if he is one stubborn little boy sometimes...and doesn't like to do things on mommy's timetable...because it really doesn't matter, all that matters is that he is ours, forever and always.

update on hannen program...

so i blogged about the hannen program back in september...and i have two classes left and wanted to do an update on how i felt everything went.

the idea behind the program is to train the parents to be able to most effectively communicate with their children through the different stages of communication...and to hopefully help the children to gain a better understanding of language and the need behind communication. the program utilizes all forms of communication (sign language, speech, pointing, pictures...) and helps you as the parent to understand where it is your child is in both understanding language and expressing communication.

here is what i loved about the program:

they trained me to be a speech therapist for camden...so instead of sitting in an hour long therapy session with someone else trying to get camden to communicate with them it is all about how we, as parents, communicate with our kids. i loved this because camden is shy, and i see three thousand things in a day, that a therapist probably won't ever see in an hour a week...so i know where camden is with his communication and i can build on that more effectively than an hour a week with someone else who doesn't see what he is capable of day in and day out.

they took video! and yes it was intimidating, but it was sooo helpful to see how camden and i interact and what things i do naturally with him, and what i can improve on. they did a new video every two weeks so that you can track how you have changed in your interactions.

they help you better understand your child, his personality type and the ways in which best to communicate with him through each stage.

they took everyday scenarios and turned them into learning moments. because honestly, when do we have time to sit down with our kids all day and work on speech...we don't. so they show you how to take your everyday routines, that you are already doing, and naturally work communication into them using several techniques that build upon one another. it helped to make the process of speech therapy a natural part of our day, and gave us the ability to actually incorporate it throughout our day.

and so much more...

there were really so many great things that i took away from this program...and i would definitely recommend it...we started it in september, it was on wednesdays for 2.5 hours, parents only (two weeks on two weeks off) with an at home follow up and video taken on the off weeks). time consuming, yes, but if you have the time it is worth it. if you don't have the hannen program in your area (our school district offered it through early intervention) they have a book. it takes two to talk

i can honestly say we saw a huge improvement in camden with his communication. a lot, i am sure, was because we caught him right at the time that he was ready to learn and beginning to take off with his communication, but i do feel like hannen helped me to best take advantage of the last few months. he went from twenty or so signs to over sixty. he went from saying mom and dad and no to attempting to say around 16 words (they definitely aren't perfect words and mostly vocalizations like "eise" for please and "aaaaba" for amen but they are attempts at speech!)...he is also making 6 animal sounds. plus you take what you have learned and move forward on your own after the program ends. so all in all, it was well worth it for us.

we will still see a speech therapist throughout next year, to help camden gain the muscle tone in his mouth he needs to speak clearly, but this program was a great start.

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

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.

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.

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.

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.