Mama bear instincts

Camden has Sensory Processing Disorder. I don't think I have really discussed this here...I will say first, that Down syndrome, has nothing on SPD. Camden started showing signs of it after his first birthday...loud noises he could not identify caused melt downs, he was scared to death of the elevator for a solid year, his eating routines became progressively worse. It all seemed to peak between one and three...and then he grew out of some issues, and into others...life got a little easier though...because he was learning to cope with some things, and we were learning how to manage his environment. 

So what is sensory processing disorder? 

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. (www.spdfoundation.org)

I know that sounds scary...and sometimes it is if I am being completely honest with myself. It is common for children with Down syndrome to have sensory issues, it is also seen in children with autism.  

What this means for Camden: the world is very difficult at times for Camden to understand. At baseball games he needs to be shown and explained why a loud voice is coming from no where (the announcer over the speakers). He can't handle it if there are too many noises bombarding him at once, especially if there is an echo (indoor sporting stadiums). He struggles with things touching the car windows, like the windshield wipers, loud raindrops, the car wash is pretty much a nightmare. Loud restaurants. Once he settles into a routine he does well, really well, but minor changes can make him nervous and he struggles to cope. 

This morning the bus driver came to pick him up, he LOVES the bus, it's probably his favorite part of the entire week. But the driver didn't have the car seats on the bus today...and Camden always sits in a car seat. He started to get anxious, he wouldn't cooperate for the driver, he wouldn't sit and started to lose it. The bus driver summoned me and let me know what was going on. 

My momma bear instincts kicked in and I wanted to let the driver have it. Have you ever dealt with special needs kids before!? You can't just change routines like this!! You can't do this! Now his entire day might be ruined...and who knows if he will recover!? Ugh. 

But I fought them...instead I climbed on the bus and took the time to explain what was happening to both the driver and to Camden. I showed him the other boys sitting on the seat, I sat on the seat with him, I buckled him in and told him it was his seat belt and would keep him safe just like the car seat did...I let him get out his anxiety and then told him he was still going to school and that everything would be just fine. He gave me a kiss good bye and went on his way.

This isn't always the case...but thankfully Camden is learning to reason and so melt downs can usually (but not always) be avoided. He needs help to understand changes in the world around him, because the world is big and scary for any child...but when the signals aren't working instinctually in your brain and you physically can not make sense of things...well then, things become really difficult. Melt downs can look to outsiders as tantrums...and they are in a way...but there is a deeper meaning behind Camden's behavior (always). 

Today I learned that I can't always step in and make life easy for him. I could have yelled at the driver, given up and taken him to school or let him have the day off...but, Camden needs to learn how to cope with his sensory processing issues, he needs to learn that he can have success even when things are different than his normal. Because that's how life is, people not close to Camden won't know his routines, they won't always understand his melt downs...and he needs to know that it's ok if you are scared or uncomfortable, that things can change and still be fun.

It won't always be as easy as it was today, and there is a fine line between traumatizing a child with SPD and teaching them to cope. But today I feel a little more confident in myself, and my child. Today he had success. 

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.

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. 

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.

Teach...

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.

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.

Well hello there...

Short of being the worst blogger ever these days, just saying. I am not going to try and play catch up...I just felt like popping in and reminding myself that I need to do this every once in a while. So to the zero followers I have left...we are still alive...and I promise I'll be updating this thing more often!

Easter...

We made it home from the hospital Saturday afternoon... So thankful to be home! Camden checked out ok for everything, just sent us for a little loop. Easter morning we blessed baby Hendrix and it was beautiful...we came home to an Easter brunch with lots of family. Camden was still pretty weak but it was good to be home. A big thank you to my moms for helping out...I would have never been able to pull off Easter without them!

The day I learned what faith is...

Today my three year old taught me faith. As we played with some toys that the nurses brought into his hospital room to make him feel more at home, Camden suddenly and so elegantly folded his tiny arms...looked right into my eyes and said "prayers". At first I thought I misunderstood because with his terrible twos Camden associated prayers with bed and yelled no in disdain when we would begin to say them. I looked back at my three year old and said "you want to say a prayer?" He then nodded his head and continued with his arms folded over his tiny frame. We sat on the hospital floor surrounded by a pretend doctor set bowed our heads and proceeded to say a prayer. Camden always finishes our prayers so at the end I opened my eyes and paused...there before me sat my tiny little man, who was not too long ago just a baby, with his arms in a fold, his eyes closed and his head bowed in prayer...he looked up at me at the pause and said "amen".

At three years old my child taught me what faith means...and I was humbled.

Today is our third day in the hospital...I woke up this morning thinking it was very possible we might be able to come home today...and now I am not so sure after speaking with Camden's doctor. As of now, there seem to be more questions than we have answers for. Thank you all so much for the prayers, kindness and well wishes. We feel them all.

They sleep...

Right now I am sitting on the floor under the couch where my toddler is past out to Monsters Inc. after a morning full of vomit...with a baby past out in my arms after nursing. My hair is still a mess, I'm still in my pajamas, Saturday plans have been canceled...and I am overwhelmed with a sense of joy...how could I be this lucky? What is it about sleeping babes that turns any situation into the best moment of your life?

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.

And so we danced...

The last few days I played single mom of two as my husband had to leave town on business. Yesterday as I was attempting to do the dishes while the littlest slept...Camden decided, it wasn't time for that. Every time I would open the dishwasher I had maybe two seconds to slip something in before little hands would ever so politely, as if I had asked him to do it, shut the dishwasher. I wasn't getting much done....and so I changed course. I loaded one last dish and looked down as he once again proceeded to shut the dishwasher...upon completing his task he looked up at me, hands raised and said with careful pronunciation "up". I smiled at my little man, because I know how hard he has to work to pronounce words and gladly lifted that little body into my arms. We decided to turn on some music, my kid is a sucker for a good tune. The music started and Camden's face lit up with a smile. I set him down and said "lets dance!" which is exactly what we did...we danced, we marched, we ran, we jumped, we pretended to be several animals of Camden's choosing and we laughed. I didn't realize just how much Camden had been needing his mom...but not just around...he really needed me, and yet the bigger surprise was just how much I had been needing him. He refilled my soul and my heart and I realized that a little dancing with my three year old should and will always take priority.

just some teasers...

First day of preschool...

I have to keep telling myself it is only two hours...and praying that he does ok on that bus. Time just doesn't wait for you does it?

Big brother...

Camden is doing surprisingly well adjusting so far...lots of hugs and kisses for baby brother, but for the most part he just does his own thing...unless he wants attention too in which case he slowly starts to nudge baby with his foot as if to say...ok I'm done with you. Needles to say, we won't be leaving the boys alone together until Hendrix can hold his own to big bro!

Dilemmas....

Yesterday I had my very first mommy of two dilemma. We have been so blessed to have such wonderful mothers and grandmothers here to help out with Camden while I spend my days feeding a newborn and trying to get a schedule down...but I have missed my sweet Camden.

Camden got a stomach bug this week...and although I was fairly certain it was a reaction to his recent uptick in dairy products (cam has been off dairy for allergy purposes since 18 months) I wasn't completely sure...which meant my motherly instincts to wrap that little, sick body up into my arms and smother him in kisses and cuddles were put on the back burner to a newborn who not only needed me but needed me healthy, and without a way to potentially pass a flu bug his way. It was the hardest thing ever to let my sweet mother in law step in and take over my role with Camden. And although I still snuck in a few good cuddles my heart ached.

Oh baby...

Happy birthday Hendrix Reed Bush! We are so happy to have you!

three years...

it is hard to believe that i have been able to wake up to this little face for the last three years....

if someone would have told me what my life would be like today, i would have never believed it.  if someone had told me that i would be the mother of this little stud...

i wouldn't have believed it.

if someone would have told me that not only would i be a mother, but i would be the mother of a beautiful little soul, who would need a little bit of extra, i would have told them i couldn't do it.  because i never thought that i could.

but if camden was given to me for a reason...that reason was to show me that i could.  to show me the person i could potentially become, to show me that there is more to life than what people see with their eyes, to show me that there is more to living than i ever knew possible, to show me the depths of love that few are so lucky to discover.

this journey, is just that, it is a journey.  it isn't a way of life per say, although it alters your way of life...instead i would say that each and every day is a step along a path of not only discovery of another human being, but that of yourself.  and isn't that what life should be?

it is difficult to express the way that i feel about my son...raising children has its highs and its lows, but it is true that the level of fulfillment is unmatched. this year my son has taught me to trust;  to trust him, to trust myself, to trust my husband, to trust God.  thank you camden, for everything you are, for the effect that you have had on your father and myself, for the love that you so freely give and for holding on those first few weeks, for believing in me, when i didn't believe in myself.

happy birthday to my tiny three year old...to the year of three!

today we said goodbye to our cardiologist...

when Camden was a newborn we were told by the nicu cardiology team to expect that he would need open heart surgery and ongoing oxygen before age six months.  it was a scary time for a new mom and dad who were dealing with a multitude of issues with their newborn and it all just seemed to be one more thing on the ever growing pile of things to deal with.  Camden was born with three holes in his heart: an asd (atrial septal defect), a pda (patent ductus arteriosus) and a vsd (ventricular septal defect)...acronyms flew around us like someone was reciting the alphabet, but nothing really ever seemed to make sense.  we were told that the pda could close on its own but that the vsd would require open heart surgery to fix and that the asd might require surgery as well.  we had no idea what to expect...we spent the next six months visiting with his pediatrician and cardiologist fairly regularly, he was on oxygen at home for two months...and then we found out, to everyone's surprise, both the pda and the vsd had closed on their own.  we knew how much of a miracle this was and we were so grateful.  the closure of the vsd however created some blood pressure issues in Camden's lungs called pulmonary hypertension...the doctor hoped that it his lungs were just stabilizing from the closure and that it would clear up on its own...and it did.  our cardiology appointments backed off from weekly, to monthly, to bi yearly and then to yearly...today we got the news that Camden's asd has shrunk down to the point that surgery will not be necessary to close it and he is still showing no signs of his pulmonary hypertension...which means that today we said goodbye to dr. minich at primary children's hospital (unless something comes up of concern later on).  that is one less doctor on our list...and I am so overwhelmed and thankful. I wish I would have been able to tell myself in those first few months that my little man would go from this....

 

 

to this...