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...

Womb with a view

We had our 18 week ultrasound today.  It is a routine scan they do at this stage in any pregnancy, focusing on anatomy and certain measurements. 

Today they were focused on baby's head, heart, stomach and limbs.  Two arms, check.  Two legs, check.  10 fingers and toes, check check.  Perfect little noggin, with a choroid plexus cyst...yup!  No surprise there.  My last 2 kiddos also had a cyst, which later resolved, so this didn't phase me at all.  However, CPC are often seen in babes with Trisomy 21 and are considered a soft marker for the syndrome, so I wasn't surprised with this finding. 

Strong little heart with 4 functioning chambers, YES!  This is what we were worried about the most.  50% of babes with DS have a heart defect of some sort.  I was relieved to hear that his heart appears structurally normal today.  However, we are still having a fetal echocardiogram in 2 weeks to look at the vessels into and out of the heart.  There is an echogenic focus which is a little spot in his heart.  Another soft marker for Down syndrome. Again, not alarmed nor surprised.  It does not affect the function of his heart in any way.  There is also a small pericardial effusion, which is fluid around the heart.  Can be caused from infection, heart anomalies or is just another incidental finding consistent with a chromosomal abnormality.  It warrants watching at this point but often resolves over time.  So, I am cautiously optimistic... :)

Overall, I feel like it was an excellent scan.  He looks perfect to me!  He was very active, but cooperative for all the measurements they needed.  His growth is consistent with my dates and judging by his profile, he looks like his big bro, Magnus as far as I can tell.  And we got some great images to share...

    

The low down on DS

I've been doing a lot of reading lately and what I've learned so far about Down syndrome is this... Named after John Langdon Down. He neither had DS nor owned the name therefore in Canada we call it Down, not Down's syndrome. It occurs in approximately 1 in 800 births, most of which are diagnosed after delivery.

Each newborn born with Down syndrome has their own unique genetic make-up; information inherited from both parents. We are all born with 46 chromosomes, or 23 pairs from each parent cell. What causes Down syndrome is improper cell division, which can happen during any pregnancy. Somewhere between fertilization and implantation, the cell division is affected by one chromosome (from either parent) not dividing properly. This nondisjunction causes the cell to double up on its information leading to Trisomy 21. Three instead of the typical 2, of the 21st chromosome, resulting in 47 chromosomes.

There are three types of Down syndrome. Nondusjunction, where the majority of cells have Trisomy 21, which comprises 95% of cases. Translocation is when part of chromosome 21 breaks apart and attaches to another chromosome. This is possibly an inherited trait, and affects approximately 4%. The last is Mosaicism which is rare affecting only 1%. This occurs when the impairment of cell division happens later on only affecting some the cells in the body.

Every child with DS is different. Because of the inherited DNA from both parents. children end up resembling other family members and may possess similar traits or characteristics. Its the same genetic information, just more of it. There are similar features that most children with DS possess, but they are individuals with their own unique personalities and dispositions and are actually more like "typical" children than not.  

Our little guy will more than likely have blond hair and blue eyes, like our other children.  I wonder if he will be laid back like his brother, Ky or possess a wild zest for life like Magnus?  Will he be witty like his sister Braedyn or be a performer like Jaye? Will he have his dad's charm or be sensitive like me?  Whatever his personality, he will be like no one else but himself. And his extra chromosome will just be a small part of him and who he will be...making him extraordinary!  I am looking forward to meeting and learning all about my baby, my child, my son who just happens to have Down syndrome.

Street Meet 2013

It was a great turn out today for the Ups and Downs Association's 21st Street Meet.  Not sure of the exact number of participants but it seemed like a couple hundred at least.  It was a beautiful sunny morning walking through Fish Creek Park with some of my most favorite peeps!  Thanks again girls!  You are all super stars!  We love you to the moon:)

It was neat to see all of the families with their children out celebrating and supporting each other. Everyone was smiling and enjoying the day.  Just seeing happy, thriving babies and children with loving, devoted parents, grandparents and siblings made me smile.  We will one of those families next year!  I also met a young man who is in his 3rd year of Broadcasting at Mount Royal University.  Which just proves that the sky is the limit if you just believe!  He figures I should name the baby David, because that's his name.  How cute is that?

They had prizes for the best team spirit, which included creative costumes or matching t-shirts etc. Prizes for the most funds raised, as well as raffle gift baskets.  There was face painting, air brush tattoos and balloon animals for the kiddies. We all got T-shirts and a picnic lunch with music entertainment following our stroll.  It was an inspiring event to be a part of and we all had a great time!  We were rookies this year, but Baby Lang's Gang will rock it next year!  

This is definitely an event that we will be attending on an annual basis and our team will be bigger for Street Meet 2014.  Go Baby Lang's Gang!

Silver Lining

As a filter through each book I read about Down syndrome, I grow not only more educated but more nervous at the same time.  I want to be ready for anything.  But I am finding the more I read about health risks, developmental delays and early intervention etc, I catch myself wondering "is there a silver lining?"  Some of the information I read is concerning to me.  And I admit I am sometimes discouraged.  I am a strong person and most of the time try to be very positive but I am also human.

Don't get me wrong, I will love our new baby like there is no tomorrow.  I do not doubt that one bit.  What I sometimes doubt is how will I be able to deal with it all?  The what-if's and the how-to's.  Trying to see too far ahead is what's so frightening for me.  

I have wondered myself at times, why after all the early losses I endured, how I managed to get pregnant at the ripe age of 42 and why this little one decided to stick around.  Am I too old to take on raising a child with special needs?  Where is that silver lining? So many questions.  You hear things like "everything happens for a reason" or " you were chosen", among other encouraging words that people say when they don't really know what to say.  I am a believer and I feel God does have a plan for me, for our family.  Even though at times, everything feels so grey.

Earlier today, my second daughter Jaye informed me she has a presentation she has to do for school, supporting something she finds important.  She chose Down syndrome Awareness.  She chose this all on her own and later tells me it was the first thing that came to mind.  She proudly showed me her poster of a cute chubby cheeked baby along with an inspirational saying "a blessing, not a burden" and information about the Down syndrome Association here in Calgary.  It was a proud moment for me watching my 13 yr old beam from ear to ear talking about her project.  

Then I started thinking about my other daughter, Braedyn.  How at 16 yrs of age she is interested in coming to appointments, watching informational DVD's and hearing what the books I am reading say. She doesn't want to read them because that would mean actually having to read, which is not one of her favorite things to do.  But she is interested and that makes me happy and proud that she wants to be so involved and is jumping in with both feet.

Then I realized that these 2 girls are my silver lining.  They are already growing and changing as individuals and I could not be more proud.  They are strong and positive and I know in my heart that, no matter how dark the cloud appears, our family will grow and change together as we all travel down the same road.  And I look forward to learning all this angel has to teach us.  And that is a beautiful silver lining!

Ups and Downs

My girls and I are planning on walking this Saturday for Ups and Downs.  It is a 3k walk to help raise funds for the Calgary Down Syndrome Association.  We will be joined by my sister in law, Kyra, her girls Ryley, Teagan and Kelsey.  My family is awesome and I am so grateful to have their love and support through our journey.

I just recently learned about Ups and Downs and already know that it is an organization that I will become a part of.  It is a group of experienced parents of children with Down syndrome that offer support to parents of newborns with Down syndrome.  They sponsor workshops and seminars, have monthly coffee mornings where parents can get together, as well as host a bunch of events like Street Meet 2013. How great is that?

I am very excited to meet some of the parents and children this weekend.  I am sure they will have a lot more information for me as I continue to learn more about being the best parent I can be to my new baby boy.

I want to thank my girls, Kyra and my nieces (love you all!) for being such a huge part of Baby Lang's Gang this Saturday and to all who have sponsored our walk.  Your support and generosity are overwhelming!

I will be posting pics following the walk...hopefully the rain holds off!  It will be a great experience nonetheless :)

If you want to check out Ups and Downs, the website is:  www.updowns.org

Prenatal Diagnosis

So this is my 8th pregnancy and will be baby #5 for our growing family.  

It all came as a huge surprise as both my husband and I felt we were "done" in the baby department.  With 4 children ranging in ages from 5 to 18years old...we definately saw our lives as complete. 

So when I saw the 2 little pink lines, I knew our life was going to take a turn, not a bad turn, just a little detour.  And we were taken back a little bit by this unexpected surprise.  We chose to wait to share our news with the rest of our family and friends.  Not to keep it a secret, but just to make sure everything was a "go", I guess.  I have had numerous miscarriages since the birth of our 4th child, and thought this pregnancy would be no different.

Long story, short.  The little bean stuck.

So...10 weeks ago, we discovered our family will grow by one.  We chose to have the 12 week scan because of my "late maternal age".  As soon as she put the probe on my belly and started measuring the nuchal thickness I knew in my heart it wasn't a normal measurement.  But I held my breath, in hopes that I was wrong.  We met with the Perinatologist's nurse following the scan and she confirmed my fears.  My estimated risk has increased to 1:2 for Trisomy 21.  We left the office, heads low and heavy hearts.  We soon met with the Genetic counsellors and they explained everything to us from the results to the different syndromes to the options available to us at that time.  We chose to go ahead and have a CVS, but had to wait another 9 days before they could schedule an appointment.  The procedure went smoothly and we were to have the results in 5 days.  We tried to go about our usual business...work, school, kid's work and activities and so on.  I did a good job of hanging in there.  Until Tuesday came.  I watched the clock all day, trying not to think about what I may hear at the end of the day.  And on my drive home from work I had a mini anxiety attack.  My heart was racing and my breathing was so fast.  Do I race home?  Or do I take my time...?

When I returned home, my little guy was playing a game and I just sat there.  Literally just sat there, engaging in the game when I could.  Waiting for that call was agonizing.  Then it came...Boom!  "Yes, the baby has Down syndrome."  My baby has Down syndrome?  MY baby has Down syndrome.  My husband called just after I hung up the phone with the Perinatologist.  The tears just came and didn't stop for nearly 3 days.  Not continuously, but frequently and just out of the blue.  If I talked about it, I cried.  If I thought about it, I cried.  We didn't talk about anything for 2 days.  I needed to be by myself, to process, to grieve, to figure this all out.  I felt very alone, even though it was what I wanted and needed.

"There are options..." they said.  Just hearing those words tore me up inside.  There was no option in my heart.  My baby is MY baby, Down syndrome or not.  I was already feeling him move and my belly was growing bigger by the day.  How could I take all that away?  The diagnosis was not the daunting part in all of this.  It was the choice I had to make.  For me, my husband and our family.  It was tremendous pressure.  I felt one way, but my head was challenging my heart.  How could I do this?  How will it affect our family either way?  It was the most difficult position I have ever been in and it was devastating.  What if I made the wrong choice?  I knew that I would lose a very big part of me as a person and as a mother if I chose to end everything.  I knew I was strong enough to take on any challenge thrown my way.  But I was unsure of how the rest of the gang would cope.  I chose to tell my older children.  Not to have them decide for me, but to have their input.  They are my world and how they felt may have helped me feel better about my choice.  All three were very supportive.  They had concerns, but more for their dad and me, not anything else.  There were tears and lots of hugs and lots of love.  I have the best kids in the world!

In a nut shell, I chose to Keep Calm and Carry on.  It's only an extra chromosome!