billy~ loves his mtn bike like it's his child, is attached to a camera, secretly wishes he was of spanish descent, is addicted to hulu and anchovy stuffed olives, can't survive a day without his yerba mate, cracks a joke whenever he finds a spare moment...
tonya~likes to dance around the house when no one is home and the music is blasted, sings like a rockstar when she's in the car by herself, is on a quest to learn spanish and french (although she hasn't officially started yet), is addicted to HGTV, loves the california sun and has learned that good music can cure any bad day....
"if you want it...work hard to create it, but leave cushion for the unexpected and embrace everything outside of that 'perfect' vision as good and meaningful parts of your story you would have never had the opportunity to know had you stuck to the script." -kelle hampton
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.
After Camden was born Billy and I became members of an amazing group of people...families that were raising kids with Down syndrome all over the world. They helped me through the darker times after Camden was born...I linked up to their blogs, they added me as a friend on Facebook, I was invited to play groups and fun activities and my heart healed as I watched these families living their lives...just like other families did. They opened me up to a world I never imagined existed and we are so grateful to belong to such a loving community. Over the last three years I have come to know these parents...some made parents naturally...some shared similar stories with us, some were older, some were younger...and some became parents through the gift of adoption.
The longer that we have been members the more families I am meeting who are choosing to adopt beautiful little children with Down syndrome. Some of these families already had a child of their own with Down syndrome and decided to reach out and save another child. Some of these families had virtually no ties to Down syndrome...but they knew that a member of their family was missing and that Down syndrome was where they should look. I have nothing but admiration for these families who have given much to bring their children home...who are willingly choosing a life with a child with Down syndrome.
While there are many options here in the states to adopt children with special needs...there are also options available overseas. One of my favorite ministries aiding these children in their qwests to find families is Reece's Rainbow. In Eastern European countries a child with special needs is seen as socially unacceptable, as an outcast. They are sent to orphanages at birth or upon diagnosis...where they live out their lives without the love of family and around age four, if the orphanage is full...they are sent to adult mental institutions. The care in these institutions is not good...these kids are tied to their beds, they are given little interaction, they are not given opportunities to grow or learn...they are left alone and too often abused, never given the opportunities to thrive. The thought that Camden could have faced a similar situation if he had not been born in the part of the world that he was breaks my heart. I literally ache for these kids...but Reece's rainbow is working hard to change this fate for these children...
As a mother of a child diagnosed with Down syndrome there are a lot of things that we are put on watch for health wise...since birth Camden has had regular blood screens for his thyroids and blood cell counts (leukemia). He is a heart kid (he has congenital heart disease) so we see a cardiologist regularly as well. We have screened for kidney problems and sleep apnea...and of course we have all of the typical kid things to watch for too (vision, hearing, ear infections...). I am not going to lie...this is by far the most difficult part of this journey for me. Not because of the extra doctors or check ups or blood work...but because we have to think about these things. Because every time I see a new bruise I wonder the what if's, because every time I see broken blood vessels I start my lookout, because Camden's slow growth makes me nervous... because I look at the color around his lips on a regular basis, just to be sure. And the thought of my little guy under going surgeries, bone marrow transplants and chemo therapy always gets me. Watching as friends receive the diagnosis I fear the very most makes my heart ache...seeing toddlers lose their beautiful locks of hair makes me teary. And searching Camden's little body for signs makes me cringe.
I have to remind myself on a regular basis that just because we are on the look out for these things does not mean that Camden will inherit any of them. There is a saying: "you don't know strength until strength is your only option"...and I know that is true...I think of the littles and their mommas faced with these types of challenges every day and I admire their strength, their courage and I recognize that those things were their only option. Some of these possibilities are things you would never, ever wish for any family to have to go through...but they are an unfortunate piece of our reality.
This post is not meant to scare away prospective/expecting or new parents...it is just to say that there are some difficult detours along the path...but there are mothers and fathers dealing with the same things, that they understand your fears and your emotions. That you aren't alone if this is your path. And if there is one thing about this community of amazing parents that we are so lucky to belong to it is that they are fantastic at supporting one another, about cheering one another's family along whatever detour you may or may not find yourself on. And we are thankful for that. I also want you to know that there is hope...that we live in a day where most of the kids faced with these challenges will find their way through to lead a healthy, long life. And that the little miracles that we are so lucky to have are strong, they are courageous and they are fighters above all else.
There are days in motherhood that you giggle and play and laugh and think to yourself: man, how did I get so lucky!? Today is not one of those days. It snowed this morning...and stuck a whole half a centimeter, so obviously on our way out to music I thought I would take advantage and let cam enjoy the wonder of a first snow...he immediately tried to sit himself (fully dressed for class mind you) in a huge puddle of ice water...he then ever so gracefully ended up face first on the pavement (I thought he laid himself down that's how graceful it was) and being the good mom that I am I looked down and said sternly "Camden! What are you doing? Why did you do that?" at which time he looked up, mud streaming down his face with tear filled eyes and one heck of a bruise and started to ball...ya I felt like mother of the year. We proceeded to music after we washed off the mud and the tears slowed...at this point he was in no mood to do anything he did not want to do...so it was a pretty awesome class. After, he decided it was time to go to toddler class as he walked by the room (it wasn't), so I stopped him and tried to head the other direction at which point he fell to the floor in tantrum mode and with full force slammed his forehead down onto the thinly carpeted cement floor. The below picture pretty much sums up both of our moods at this point in time. Yup, I am the mother of a two year old...
Most people think that life with a child with Down syndrome would inevitably be so different than life with a typical child...and while I am not discounting that the future holds a lot of unknowns for our little family...I am also willing to say that maybe life really isn't all that different than it would have been other wise. In fact, most days, I honestly do not think about Down syndrome. Does it effect the way we live as a family? Sure, we deal with more doctors, therapists, early intervention programs...our children thrive on routines so routine becomes a part of our parenting style...but really, it has all become just another normal part of our lives. Our therapists have become a part of our family, a part of a routine, they love Camden and advocate alongside us...our doctors are our families' life lines and we are thankful everyday that we live in a time where so many of the medical unknowns that we face have solutions. We look at Camden everyday as our child, first and foremost...we do not see Down syndrome, we see our rambunctious toddler. That does not mean that we do not recognize that Camden is different than other children his age...what it does mean is that he is an individual...he is his own person, with his own quirks, likes and dislikes...he is very much a child like any other...he just develops at his very own pace.
In a lot of ways Camden's development has been a blessing...for instance I had an entire year of a somewhat non-mobile, cuddly baby who was content to love on his momma. We have had time as first time parents to watch every intricate step that the human body and brain take in development...we have enjoyed and were truly able to soak in that extra bit of baby in our child. And we have loved it. That doesn't mean that there weren't moments where the realities of Camden's slower development didn't hit home, and hit home hard...but it does mean that as his parents we have grown to appreciate Camden for who he is...and we are learning every day that every child is different, that every child is unique and we are appreciating more and more the blessing of a slower moving childhood. Childhood is wondrous, exciting and magical...and as an adult I had forgotten how truly amazing it can be to be a child...Camden has taught me how to enjoy life a little bit more, he has taught me to appreciate better my own childhood, and he has taught me most of all that it should never be taken for granted...because it so quickly fades away.
So it is true...most days I don't think about Down syndrome, most days I am just caught up in being the mother of a two year old...in trying to help Camden develop and grow while still reveling in the child that he is.
I think one of the things parents fear most about having a child with Down syndrome is their state of independence. It was definitely one of my fears...shortly after Camden was born I realized how unfounded those fears were. Camden is only two...we don't know what level of independence he will eventually have...but I have high hopes. People with Down syndrome are reading, writing, holding jobs, getting married, attending college, some have received drivers licenses and some have families all of their own. Just because a person is diagnosed with Down syndrome it does not mean that they will fit a set stereo type. It does not mean that they will not have a future...it does not mean that they won't succeed in life, contribute to
society and have their very own life.
And we look forward to Camden's future with hope and excitement. We do not believe that he should have limits placed on his future just because of a diagnosis. We instead feel that Camden will set his own goals, he will write the story of his very own life and he will set his own limits if the need arises.
Most days we don't think about Down syndrome, most days we don't think too far into the future...because it is wide open for our little man, and only he will be able to write it...not a doctor, not a geneticist, not society's stereotypes...Camden.
A study done by Dr. Brian Skotko showed that among siblings ages twelve and older, 97 percent expressed feelings of pride in their sibling with Down syndrome and 88 percent were convinced that they were better people because of that sibling.
Camden is about to become a big brother around here and I can tell you that most days I wonder if I was out of my mind crazy to want another right now...but it has little to do with the fact that Camden has Down syndrome and so much to do with the fact that I am about to become the mother of two kids, two toddlers, two boys. Am I ready for that? Absolutely not! Am I excited? You better believe it!
When we found out we were expecting another boy I began to think about my oldest...I realized just how much he needed a little brother, a friend...who will one day become his advocate, his protector, his greatest blessing. Is it fair of me, as this child's mother to expect my next child to fill these rolls? Don't you hope that each of your children will be these things for their fellow siblings? Is it fair of me to hope and to pray that this child will grow to be compassionate, loving and gracious in the most rewarding of ways?
I have hopes and dreams for this next child, as I do for Camden...I do not expect that he will live in his brother's shadow...instead I think he will one day be able to say that he lives on his brother's shoulders. I believe that Camden will bring insight into our home, into the lives of our other children that will be invaluable.
I don't doubt that there will be moments of hardship, moments when things aren't fair...but that is the plight of any sibling and it is also the blessing...we become better selves through these times, we become stronger.
I know that Camden and little brother will be siblings in the most root definitions of the word, that they will play together, laugh together, support one another, fight and love each other. Am I excited to see Camden fill the roll of big brother? Absolutely!
Too many children are aborted because parents feel it will be too hard on their marriage, on the siblings...the studies show differently...
I ran across an interesting fact this morning...families that have a child with Down syndrome have a lower divorce rate than families where there is no diagnosed disability. It made me think about my own marriage and although we are only six years in I can confidently say that Camden's diagnosis was a definite turning point in our relationship. Billy and I had been married for three and a half years..we had settled into life together but we were still very much learning more about the other every day. We had planned Camden, we decided at the beginning of married life that we wanted to give ourselves three years before we let a kid come into the picture (I have no clue why this number was so important but it was). I guess you could say we took the traditional advice to heart, and we wanted to give our marriage time to settle, we wanted time to ourselves.
The day that we found out about Camden, Billy became my strength...he was my rock and for the first time in three and and a half years we cried together...and I knew that there was no one else on earth I wanted to be on this journey with. I would not be the mother I am today if I did not have the partner I have today.
Camden has brought love, life and new hope into our family...he has taught both of his parents what is truly important in life...we now know how to support one another above all else and we are better for it. We are better because of the child that we put off for three years.
I know this statistic is just a statistic and it alone does not guarantee that any marriage will make it over others but I do know that having a child with Down syndrome would not be the reason for our marriage to ever end. And I am thankful for the man who chose me to be the mother of his children because even through the scary unknown times in our marriage, with Camden...he stood strong, he put us above all else and he still continues to do so everyday.
The last 24 Hours have included a trip to the doctor, a bottle of thick, pink, chalky meds, a flu shot for added measure, a lot of tears, little to no sleep...poor bug has a double ear infection again. That makes three since may...which means one more in the next two months and we are headed in for a set of tubes. This is not uncommon in kids in general obviously...but kids with Down syndrome are more prone to ear infections due to the shape of their ear canals. We thought we were going to get away without this issue with Camden since he never seemed to show signs of them...until may. It has been a really fun few months. Anyway I will leave you with this little gem, taken a few days ago...
The first thing that I learned about my son was that he was a boy...the second was that he had his daddy's lips...and the third was that he had Down syndrome. Over the next few weeks I learned that he was a fighter. In the following months I learned that he had his very own likes and dislikes...from the position he slept in to the way he drank his milk. Breast feeding with Camden was not a bonding experience for us...did he learn how, yes, so don't let my experience deter you from nursing your child, but from day one, it was a fight. I mean pushing me away, arching his back, crocodile tears fight, to get him to nurse for maybe ten minutes...we tried everything...until he was four months old when I finally decided I didn't want to dread dealing with my newborn every two to three hours. Feeding in fact has always been a fight with Camden. When bottle feeding during awake times he wanted to see what was going on around him so he would not eat unless he was facing out...and even now at two and a half he refuses to use utensils (even though he can) because he wants me to do it...he will even get off his chair and bring me over his cup from across the room so that I can hold it while he drinks. Yes, we are working on these things...and I promise I am not a push over parent...what I am is a parent dealing with a toddler, a stubborn, passionate, somewhat lazy, opinionated toddler.
What I have noticed most of all in the last few years is that Camden developed his personality first and foremost. He laughed at an early age, he was interacting with the world at an early age, he was focused and observant at an early age. Camden in fact has usually tested near or at age level, and in some cases ahead in social and cognitive development...his speech and self help level follows that and gross and fine motor are his weakest links. As Camden developed along side his peers this became more and more evident, Camden put all of his energy into developing his cute little personality, which I always found interesting since most of his peers worked so intensely at gross and fine motor those first eighteen months and their personality and social awareness came much later. Camden recognized emotions in others at six months and responded...he was doing hand motions to nursery rhymes before fourteen months...he shares toys, plays pretend and gets his feelings hurt when kids are mean to him. The kid understands other people and is keen to pick up on what is going on around him and he always has been. This has been good and bad for his development...first off it created a cautious little boy when learning gross motor...he held off on a lot of skills because he either could not see the point of a skill or he was afraid of the skill. It also created a stubborn little bug who knew if someone was trying to get something out of him, and knew how to say no and flat out refuse at a very young age. I honestly think Camden would have developed in gross and fine motor very differently if he had not developed the above mentioned traits first and foremost. Most people notice that Camden is older than he looks when they interact with him for more than a few seconds...but from a far he still looks no more than eighteen months (a small eighteen months). Every child develops differently, every child excels in areas and puts other areas on the back burner (down syndrome or no Down syndrome). Not every child with Down syndrome develops like Camden, but I have noticed a lot of cute personalities at younger ages is this community. Is Camden delayed? Yes. But if there is anything I have learned it is that Camden decides when he takes the next step...and no amount of therapy or pushing can change that about him...because he is in charge of Camden, and he knows it.
One myth I see a lot about kids with Down syndrome is that they don't share the same emotions that their typical peers do, and I guess the point of this post is that they absolutely do...and being happy is not their only personality dimension. Camden at this age knows fear, excitement, happiness, sadness, hurt feelings, loneliness, insecurity and much more. He knows what he wants and what he doesn't and he is not afraid to let you know it. He is not clueless to the world around him...he is not a happy kid 100 percent of the time...but still I hear it on a regular basis..."he is always so happy"...and I usually answer " I promise he is not! " So why is it that he appears that way to other people? I honestly think it goes back to his personality developing first...the kid likes to be social, he likes attention (granted he is not tired or hungry in which case move out of the way). Is every kid with Down syndrome like Camden? No. But every kid with Down syndrome experiences every emotion that you and I do...they are not living life oblivious to the world around them, in fact I would argue that they are very much aware of the world around them, even if they can not communicate that.
In all reality Camden is very much a toddler at this age...with its ups and downs, cute instances and beyond naughty ones. He gets into trouble, he knows when he is disobeying, he likes to snuggle and he adores attention. Some days I want to pull out my hair...and let me tell you it isn't because he has Down syndrome, instead it is because he is two in pretty much every way.
There are a lot of myths out there about a Down syndrome diagnosis...as parents we find ourselves combating them pretty much everyday. It isn't always with a blog post, or letter to the editor, it doesn't always take a lawyer or fight with our school districts...and sometimes it does....but honestly the best way I have found to combat the misconceptions the people around us have...is to just let Camden live his life. He attends a gymnastics class with his typically developing peers, he goes to a music class where all of the kids range in diagnosis to no diagnosis at all, he goes to toddler class with peer models, he goes to nursery every Sunday with the other kids his own age and of course he participates in most all of the other community activities that we can...he is loving the aquarium at this age. He isn't always able to do what the other kids around him do...but you can bet that he tries! He can't jump on his own yet, so mom helps out a little...he can't run like the other kids, but his version sure is cute to watch! Sure, modifications are needed for my little guy to be able to do the things that he does, but he is doing them none the less and the hope is that eventually Camden will be able to do the things he now needs help with, all on his own. And all of the while I notice the people around him taking notice. He is my ever teaching accessory.
Parents are often told when they receive a diagnosis that their child won't be like typical kids...they won't be able to do the same things, they will struggle, they will have developmental delays, they may not learn some things at all and on top of that they will have to deal with several medical issues...congenital heart disease, childhood leukemia, early onset Alzheimer's, vision and hearing problems, low muscle tone...and some of their kids will battle some of these things...but here is what they aren't told: that their child needs to be loved; their child is still a child, human in the most intrinsic of ways; that they will have glorious moments of joy; that just like any child the good will far outweigh the bad; that there are options now...that their kids will be able to play sports, ride a bike, learn to read, attend local schools and perhaps even college and much more. That they need to be given the same opportunities as any other child, because they can succeed.
This morning a fellow mom posted on Facebook the following: "The hardest thing about raising a child with Down syndrome is other people". It is true...we have to battle every day for our children to receive the basic human rights that other children readily receive. We work to change people's views because we want our children to grow up in a world where they are openly welcomed, where they have lives, where they are given respect and opportunities...because their lives have value.
Now, I am not discounting that this journey can be a difficult one, even with its many rewards...but it would be a whole lot easier if we didn't have to consistently battle stereotypes, school districts and ignorance. So I stand with many other parents when I echo the saying:
" I would not change my son for the world, but I would change the world for my son"
If there is one thing that we as parents of our special little ones would probably echo in sentiment...it is that we do not want people to feel sorry for us. And we are well aware when people do...because most of us were in that same position before we had our kids, we know pretty well how it goes. But I am here to say, from the other side of that tall fence, that there is nothing to be sorry about. Have we cried over our kids, absolutely! But haven't you? Come on be honest...it is the plight of parenthood to bring into this life a beautiful little soul that you would do anything for...it causes sleepless nights, tears, boundless joy, it takes work and effort and our lifestyles, and for some, a lot of medical bills. But we do it! Because most parents would do anything for their children.
And I know where that other side of the fence is, because I have been there...maybe I didn't have a kid at the time, but I know how it goes. You see others' "situations" and you hug your own kid a little tighter and pray that your strength isn't tested as a parent in the same way that theirs was...you thank the heavens as you pat your growing womb that your ultrasound came out clear, that your kid doesn't have those issues. You have that "what if" conversation with your husband and some of you think you couldn't handle it, and some of you say "they would still be your baby so you would love them no matter what" as you secretly hope it would never, ever come to that. I know these things, because that was me too.
But I am here to shout from the rooftop...that my son, is nothing to be sorry over. Will he have it harder than some? Sure...but I am a firm believer that we are all tested, that we all have it hard in our very own ways...no one gets away in this life without trial, without obstacles....it is why we are here. But I know that that fence we secretly put up between our own hardships and the hardships of those around us is a tall one...that each of us look at the other and think, thank goodness that is not my trial. And I am here to say, I do not believe that God plays favorites. Camden will have hardships, kids will be mean to him....but kids will be mean to your kids at some point too, it is part of life. He will struggle to learn things, but he will also excel at others....just like your kids. There will be days when he comes home in tears, because life isn't fair...haven't we all?
And I as his parent have to think about medical issues, and developmental delays, therapy and evaluations that began at birth...I am forced to compare my child to typical children and then I am asked if I think he is developing the same...and I have days where the realities of a diagnosis hits hard. But I do not feel sorry for my son, and I do not feel sorry for myself...because with the hardship of our trials comes the pure love and joy of a child I would never give back. The lessons he teaches everyday to those around him are further reaching than anyone else I have ever encountered. The way that he has taught me to love, to see the world, is a way that I wish all people had access to, I can tell you that this world would be a lot better off if they did.
I am not stronger than you are...I am not a different kind of parent. I am just that, a parent...I have been given the greatest gift that my Father in heaven could have bestowed upon me, a child...and he is perfect and he is loved because he is who he was meant to be, my Camden.
october first marks the first official day of down syndrome awareness month. and if you know me...you know this is pretty much the only month of the entire year you can expect some consistent blogging. i am not promising every day, like i did the previous two years, but i will promise to be as consistent as possible. the point of this is to help educate people on the subject of down syndrome, to promote awareness and to help parents or people in general see the myths about down syndrome so that they can better interact with families and people associated with it. in the last two years my blog posts have included facts about down syndrome (31 to be exact) but this year i want to try something different...i want to share facts about camden. i will still link in some ds facts here and there but i want the overall feel of the blog this month to be overwhelmingly about my little guy, because he is the reason that i do this. so be prepared to learn everything there is to know about the two and a half year old who is, as we speak, climbing all over me as i try and type this. i also want to emphasize that facts about camden are not going to ring true for every child with down syndrome, because well, each child with down syndrome is as unique and different as every other child in the world.
so here it goes...fact number one about my tiny toddler: his absolute all time favorite activity is wrestling. the kid loves physical activity/attention. he craves it. he will climb up your face, he will attack you from behind, he will tickle you when you least expect it...he is always waiting, watching for the prime moment to pounce. and it makes me happy, because it is a just one piece of camden that proves that he is a little boy, like any other little boy.
in other news...to help utah celebrate the start of down syndrome awareness month, chick-fil-a is hosting an awareness night at all of their utah locations tonight from 5-7...so go eat some chicken, and help support the utah down syndrome foundation in their efforts to provide support, activities and education to families in utah. our family will be at the jordan landing location and would love to see you there!
camden william: is our very first...and we are smitten....beyond smitten. he loves to dance with mommy, giggle like woody the woodpecker, has a thing for puffs, thinks he is a break dancer, is in love with his daddy, has a smile that takes up the room, and has designer genes...that's right...he has more than you do...