Tuesday, October 29, 2013

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!

Tuesday, October 15, 2013


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. 

Friday, October 11, 2013

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.

Wednesday, October 9, 2013

Saying goodbye...

When I looked at my phone this morning I noticed I had missed a call from my dad around 730. I knew why he was calling instantly. There are really only two reasons my dad would call that early right now, my grandma was either on her death bed or had already passed. 

Grandma Gloria (or GG which is what she wanted the great grandkids to call her) became my grandma when I was eleven years old. She and grandpa Ed took my brother and I in as if we had always been their grandchildren, and I will forever be grateful for that. We always felt loved. 

I was the first of her grandchildren to have a child of my own and I loved how excited she was over it. She even flew up to Utah once when I was pregnant with Camden to help us buy his baby bedding. It's a memory I will hold dear to my heart always. 

When we found out that Camden had Down syndrome I don't think she ever said one word about it...she just kept on loving him like she would have any other great grandchild and went on as she would have in any other circumstance. She just loved him.

Shortly after Camden was born my grandma was diagnosed with Alzheimer's and moved into a nursing home...but she was always so glad to have us visit. When we brought Camden to see her she would parade him around letting everyone know that he was her beautiful grandson and just how lucky she felt...you see she never thought she would live to see any of her great grandchildren. I don't think I ever told her how much her visits meant to me. There was never a shortage of love. In fact my children have been blessed by the very best of grandparents on all sides...

This year her Alzheimer's began progressing quicker...we came to visit in may after Hendrix was born because we just weren't sure how long she would "be here" and I wanted her to meet him. We never once went when she didn't recognize the boys...and that was a beautiful gift.  She was just always so proud and you could feel the love, even when she could no longer verbally express it. 

I spent five weeks in California with the boys in August and the progression of the disease was getting quicker and quicker...when we first went to visit she was very responsive and held Hendrix and covered him in grandma kisses...not even two weeks later and she could no longer hold anyone...and could barely get out the words "they are so beautiful". 

The last visit we had with her she was unresponsive for the most part...except for with Hendrix and Camden. She would look at Hendrix and smile when we would hold him close...but she would respond to camden. When Camden would laugh she would laugh...when Camden would talk she would look around for him. She knew Camden...

This morning when I got that phone call, my heart sank...because I knew. But I am  also relieved, not only for my dear grandmother who was ready to be reunited with her husband, but for my parents...who have had to watch this disease take over the woman they knew and loved so much. 

I am thankful for the woman I was able to call grandma for much of my life, for her love and for the pride that she took in my children...and for that special bond that she and Camden had for this period of time on earth. 

Camden has seen four great grandparents pass in the three and a half years he has been here with us...and as sad as that is, I am ever so grateful that he has had the opportunity to be a part of most of his great grandparents' lives. It has been so so special to see the bonds that he has formed with each and every one of them. The way that they light up when he visits, the way that love has bloomed...the ways that they made him feel so special and so loved, always. 

This little boy of mine has a way of sneaking into your heart that way, and he never leaves. I look forward to the day when I can understand their relationships with him on a deeper level, when I can see them all reunited again. 

Love you always grandma Gloria. 

Sunday, October 6, 2013

I did it...

camden has been obsessed with counting for a while now...he started pretending to count before he turned three and everything was two...he would point to each object and proclaim "two, two, two...". by his third birthday we had taught him to count to three and we thought it was adorable of course...especially since he refused to answer the question "how old are you" once we told him he was no longer two...so when people asked we tried to get him to count to three since he just didn't get why the answer to that question wasn't two anymore. 

about a week ago we were counting to three...only camden didn't stop there... It was followed by four and five. i caught my breath for a second...he can count to five? 

two days later he went all the way to ten, no problem, all on his own. 

billy and i have been pretty proud parents this weekend...as everywhere we go he proudly counts everything. at the candy store we stopped at, aunt annie's in Idaho falls, he softly counted the 12 barrels of popcorn only it went like this: "1,2,3,4,5,6,7,8,9,10,10,10" and he then proudly screamed "i did it" over and over as he ran in full circles in front of the register. 

he did it alright. 

moments like this never get old as a parent. watching your child accomplish a feat for the first time is pretty much earth shattering...every time. 

there are days with camden when the words down syndrome are ever present, when the delays are obvious and heavy...when I wonder if we will ever hit certain milestones, when he stagnates, or even regresses. and then there are days when he blows my mind, and the words down syndrome feel like they were attached to that ball he just hit full force out of the ball park. and those days, well they are good, they are freeing...and they get me through. those days are what we live for around here. and i don't know if this tiny boy of mine will ever realize just how proud of him we are...always. he has to work harder for things than most, and still he does it...and this is becoming more and more apparent as i watch his younger brother at eight months easily tackle things that camden worked on for over a year. he really has to work, for everything, for things that come so naturally to other children, like how to hold a crayon and how much force he needs to use to push a button when his finger bends like rubber. 

but he does it. 

and he teaches me, every single time we have a day when he makes full contact with the ball, that he can do it, to never doubt him, to expect instead of accept. his perseverance and love for learning makes my heart happy, and he pushes me because if he can do it, so can i.

Friday, October 4, 2013


i was at dinner with friends once...the conversation was flowing here and there and then this question was posed... 

"what do you tell your kids when they ask about someone with a disability?"

and the heads turned my direction. 

well, my oldest was barely three and non verbal for the most part so honestly, i had never run into this situation before. but i understood the question and the concern behind the question. 

you know how kids are...always curious...and sometimes their questions are innocently asked in very loud and distracting ways. 

so i pondered the question, what would i tell my children...but more importantly what would i want done if camden or i were the ones the child was asking about? 

i think today and in years past the way you dealt with disability was to ignore it...and it ended up that we ignored the people in general. think about it, you're in a public situation...you see someone in a wheelchair and your four year old suddenly starts to stare and tug on your sleeve...then the pointing starts and you start to sweat...what is going to come out of your child's mouth? Your instincts are to duck your head and flee the scene as quickly as possible, before someone notices the tiny finger pointing and the little mouth running. it's natural...and i probably would have done the same before camden, but what does that teach our children? it teaches them that that person is different, maybe even scary, not to be talked to or acknowledged or even looked at. 

so i thought about the situation my friend had earlier found herself in and then realized...i would want her to teach her child to say hello. 

let me let you in on a secret...people with disabilities, or parents of children with disabilities, aren't looking to avoid people. they aren't often offended by innocent questions...and a smile and a wave can go a very long way. 

so what would i say to my four year old? i would kneel down, and say: "yes, that person gets to walk with a chair...isn't that neat? do you want to go say hello?"

because that's what i would hope someone would do for me...or camden. because that simple two second detour from our routine would teach that child that we are more alike than different, that everyone deserves a hello.

Thursday, October 3, 2013


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.

Wednesday, October 2, 2013


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. 

Tuesday, October 1, 2013

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.

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