The value of life...

I have been saddened lately...

I am not sad as in upset or down.  I am just feeling kind of sad for what may come.  For the fear of the unknown.  For all the things that may never come or come to be known by my little guy.  Or rather, is it the opposite?  Am I sad for all the things that may come to be for him as a growing child with Down syndrome?  Either way, somehow these thoughts still trouble me.

This summer is going by so fast and my 5 year old seems to be growing and maturing at light speed these days. As I watch him become more independent and confident with each passing day, I have to admit that I find myself wondering what life is going to be like for my unborn son.  Will he be able to play independantly on the play structure?  Will he ask other kids to play?  Will he be "accepted" into games by the other kids on the playground?  Is it wrong of me to wonder these things?  

I know who he will be to Paxton and myself, and to our family.  But I wonder who he will be to others.  Like the kids at the park that don't want to play, or the parents that aren't too friendly when a small child approaches them, chatting away like they're old friends.  I have seen it a few times over the summer at the park, and luckily Magnus is confident enough to move on.  But what will it be like for my other little man, as he grows?  As he exerts his independence and goes out there and tries to make friends and is possibly turned down by kids and adults alike?  This is what saddens me.  I have no idea how I will be able to handle that.  I want to be able to protect him, and I know that I will not always be able to do that, and that tugs at my heart.

It upsets me that I am even thinking like that.  I am very happy.  We all are happy and eagerly anticipating his arrival.  And I don't care about what other people think or even how they may conduct themselves around me.  I just worry for him.  We, as a family already love the idea of who he is and all that he will be.  And soon enough, we will meet him and introduce him to the world.  I, of course will be a proud momma as any woman and her new baby.  And Magnus will be the proudest of all!  I guess I just want everyone to feel what I feel, and I know that won't always be the case.  

When I see my 5 year old bounce around the park making friends or not, I rest easy knowing that he is secure with who is is and he knows that we love him and that is all he really needs to know.  And it will be the exact same for his baby brother.  I have no doubt about that.  He will be strong, secure and very much loved. So I will lay the uneasy thoughts to rest and focus on all the good that lies ahead of each and everyone of us, especially our baby boy.  And that is something to look forward to!  16 short weeks to go....!

 Proud big brother

Fetal Echo

I had a fetal echocardiogram on Wednesday at 21 weeks, just to be sure that baby boy's heart looked good.  There were no structural abnormalities seen at 18 weeks but was a limited scan at that time.  This scan was a lot more thorough and took over an hour.  Thankfully there were no surprises. His heart looks perfect with a regular rate and rhythm.  He still has that small pericardial effusion which is apparently "typical" in a babe with chromosomal abnormalities, so they will continue to monitor it but aren't concerned. I will be going for ultrasounds every 3-4 weeks though, for the rest of the pregnancy to keep an eye on his growth.  Apparently, he is at risk for IUGR (intrauterine growth restriction).  Of all the literature I have read, I have never come across that tidbit of information, but I will trust the perinatologists and do whatever is best for my little monkey.

At the moment, he is growing well and was extremely active throughout the entire scan.  He weighs just over a pound and Magnus has felt some of his kicks and jabs with his little hand.  He gets super excited with each movement he feels and always asks "when is he coming out?".  

It is such a relief to know that he won't need heart surgery. I will pray for those little ones who do...  Amen!

The Beauty within...

After learning the confirmed diagnosis our baby would be born with Down syndrome, I was also surprised to learn that only 1/10 couples decide to continue with their pregnancy. That means 90% of women decide to terminate.  It seems like such a high number to me and quite honestly, I was surprised.  I am not judging by any stretch...it was a very difficult position to be in.  I empathize with any woman faced with the decision.  Making the best choice for my family and I was the hardest thing I've ever had to do.  I have always had strong feelings about abortion and it was not something I thought I could do no matter what the diagnosis, but I admit, I still struggled with it, nonetheless.  I don't think you can truly say what you'd do, until you are in the position to make that decision.  And at the end of the day, it is what is best for you and your family that matters most. And once the decision is made, there is no turning back.  It was a difficult and very emotional time for me, and I am so glad that part is over.  I can honestly say that I am at peace...the past is history and I am looking forward to the future and all the beauty my sweet baby will bring to me and to our family.

Since then I have obviously been doing alot of research and reading alot of books.  Aside from the learning delays and disabilities and all of the possible health risks, I have learned that babies, children and adults with Down syndrome have just as much potential as anyone else.  And to me, that is a beautiful thing.  Who are we to set limits and lower our expectations based on a number of chromosomes?  We all want what's best for our children.  And every child needs love, encouragement and someone to believe in them.  It is within our own ability to see the potential and beauty of our children, that will help them thrive, to grow, to learn...and to become the best adults they can be!

I stumbled across an article the other day that summarizes my thoughts.  It is written from a father's perspective, which I always find so heartwarming... You can read it here

In this short amount of time I have learned so much just from reading.  I know I will learn so much more once our little guy arrives, but in the meantime preparing is all I can do.  I often find myself searching crowds in the mall, bookstore or grocery store.  Looking for little ones with Down syndrome.  I'm not sure why, or what exactly I am looking for or hoping to see.  Perhaps I am searching for a little one that could possibly resemble our baby?  I feel that families of children with special needs are part of an invisible circle.  One that joins us together without even knowing or even saying word to each other.  Although I am still awaiting the arrival of my wee one, I feel like we already share a special bond.  One that would never had even existed if it weren't for Down syndrome.  Pretty beautiful...!

Blogger's Block

I am 19 weeks and counting.  From confirmation of pregnancy to scans to diagnostic testing and diagnosis has seemed like such a long journey.  And I still have another 20 weeks to go!  What more I can possibly blog about from now until then is beyond me, but I will do my best.  I am suffering from a little bit of Blogger's block at the moment, as the initial wave of emotion has passed.  I'm sure I will have more thoughts and ideas to share, but for now I plan on enjoying this pregnancy and all it brings, as I know it will be my last.  

I have decided to lay off of the reading for awhile.  Not that I feel I know all there is to know, but just to give my head a break.  There is alot of information out there and at times can be overwhelming.  I am currently reading an auto-biography by Jennifer Graf Groneberg called Road Map to Holland.  Following the birth of her twins, she learns that one of her sons has Down syndrome.  This book is a truthful notation of how she found her way through his first two years of life.  I am enjoying it so far, and find it a refreshing break from the facts and figures of all my other reads. 

Who knows, maybe one day I will write a book of my own.  My life is definatley full of enough stories to compose a novel;   from starting a family at a young age, to raising 3 small children under the age of 5, to 3 teenagers now over the age of 13.  And amongst the "madness" of friends and Facebook, driving and dating, homework and hashtags is a vibrant, energetic 5 year old who is the centre of our family's universe. To think in a few short months, we will be adding a baby to our mix!  I have all ages covered just to keep a healthy balance of chaos.  It definitely keeps us young at heart and life interesting.  I am loving every minute of motherhood.  The good times and the not-so-good moments.  And even though this little man was an unexpected gift, he will be just that.  Another precious gift to our growing family.  And I look forward to being a mommy once again.  For the fifth and final time :)

My gang:  Braedyn, Ky, Magnus and Jaye

Room to grow

The saying "Ignorance is bliss" couldn't be farther from the truth.  What is so blissful about being ignorant?

The following saying that comes to mind is one I used to hear growing up..."Sticks and stones may break my bones..."  Cruel words said by uncaring and insensitive people don't hurt my feelings.  I am strong and mature enough to understand that ignorance is merely a lack of understanding or education.  And maybe perhaps some people are unaware of their insensitivity.

Either, or... It is something that we as a family are going to have to get used to.  Unfortunately, no matter where you go, there will always be "ignorant" people that feel their opinions or comments are worthy of sharing, despite the impact they may have.  Sometimes, these words can be taken out of context. It may not necessarily be the words spoken, but more the delivery that stings.  I feel that if it is coming from a caring heart, then these sometimes hurtful comments can be overlooked.  But when it is intentional, it can be difficult to find room in your heart for forgiveness. 

Not everyone we meet will share the same reaction.  Some people are empathetic, but happy while others are sympathetic and uncertain of what to say.  And somtetimes it is better "If you don't have anything nice to say, not to say anything at all."  In the end, the negative comments that have been said or thought aloud are irrelevant.  It is what is in our own hearts that matters most.

The other day, my mom was telling a friend of hers about the exciting and much anticipated arrival of our little man. She was quickly taken back by the woman's response.  It doesn't matter what she said or even how she said it. It was clear that her words were not said with good intentions.  It shocked my mom and initially really upset her, leaving her feeling like her news was unworthy of sharing.  But she is a smart woman, my mother and just chalked it up to her friend not knowing anything about DS, nor the strength of our family.  And perhaps this woman was not worthy of hearing her exciting news in the first place.  

My daughter has also received some lewd comments on Facebook.  The social media allows people to remain anonymous.  So no one truly "owns" these hurtful words.  Kids in grade 8 are just that...kids, with a lack of education and understanding of anything or anyone that may be considered "different".  Some may think they are being funny and are looking for a reaction from anyone around, not fully aware of what they are saying or how it may sound.  However, Jaye is one of the strongest kids around and although she was shocked and angered by the "ignorance" of this person, she realized that her choice not to react spoke louder than any words she could have spoken. She is the kind of person that will stand up for herself and others.  I don't doubt that she will change her world with her confidence and positivity.  Fortunately, there are more loving and inspiring comments than not.  And these words are the ones we keep close and have room for in our hearts.

It will be our job to build a shield of love around our little guy.  Our love and the love of everyone who will come to know him will keep him strong.  And when he is faced with the insensitivity of others, he can hopefully learn to overlook their "ignorance" of who he is and what he stands for.  He will teach them that being "different" is a good thing.  Watch out world and prepare to be amazed!!    

Maybe this journey will teach us to be more forgiving, more understanding and have more patience for those that aren't aware of the full potential people with Down syndrome can have.  I know he will teach us many things that we never even thought we needed to learn.  He will teach the world that everyone is worthy of love, kindness and respect.  And in turn, we will learn even the coldest of hearts has the potential for room to grow...