New Year, New Things.

Happy New Year!!

Just a little bit has changed since my last blog (...I'm kidding...)  I started a post shortly before the big move, but alas, never finished it.   As I thought about the 5 hour move, and all of the changes that come along with it - I was reminded on how special this journey is.  We have met a bunch of amazing people along the way, but along with that came a bunch of bitter sweet goodbyes.  When we moved a little over a year and a half ago, we left a good handful of helping hands, and to be honest, I wasn't sure how we would adapt to a whole new set of wonderful people.  Truth is, We are lucky.  Lincoln is an easy going, well adjustable, fun loving kid, and anyone who meets him would agree.  He adjusts well, isn't too shy, and basically 'fits in' where ever he goes.  We are lucky in the fact that he had an amazing first experience in school.  He was welcomed into a school where inclusion was their theme.  A school that treated everyone the same, and who recognized individuals on a monthly basis for their extra umph, extra caring nature, and extra effort made to share love and show respect to all individuals. Obviously, on his last day, his class was sad.  Lincoln was the 'class clown', or the 'popular' kid not only in his class, but his school.  It amazes me just how many people knew who Lincoln was.  Almost every trick or treater we had said hi to him, it seemed everybody in the halls knew him, and apparently, everybody waved to him during their christmas concert for the school!!   Just knowing how welcomed he was, and how inclusive his experience was at the old school - has only made my expectations on what to hope and strive for in the new school, and I will do whatever I can to make it just as amazing as the last.  With that being said,  I wasn't exactly excited for the move and yet another change.  But, we put our trust in God, and follow the path he has already set for us.  Sometimes its interesting the way life goes.

We are back to the same place we called home for the first 6 years of our marriage, the place where both of our boys were born, the place that we had for sale, but never sold.  And while everything sort of makes sense now, we know why we were brought to the same town with my awesome sister and family, the awesome school and all of the awesome friends we made along the way.  As we said our goodbyes, We can confidently say Lincoln left some sort of an impression on people there.  Whether it was through those he met along the way,  the hearts he touched, or the people he helped.   We enjoyed advocating, and sharing the joys he brings... I love that even though he is only 5, he.changes.people.  He changed teachers, students, and parents all the same.
As we look to the future, and Lincoln's shining spirit, we already know everything is going to be alright.  He has such a loveable spark about him.  Its nice to know he will be walking around with familiar faces around him.  He will get to share recess with some of his older cousins (whom the boys can't get enough of).  He will be in a regular classroom with an EA present within the class already.  I'm sure the transition will go smoothly, and so far, things have.  We have all of our stuff, most of it out of boxes (ok, well, over half at least....)  The boys love their room, and being back at the 'old house' - though Parker says he doesn't remember it at all.  Lincoln's first day will be on Tuesday, and we can only pray everyone will accept him, though i have no doubt.

In Medical news, Lincoln's tubes are out of his ears (which is great news because we are going to the Great Wolf Lodge tomorrow - yay no ear plugs!!), and his ears were still clear while he was fighting a cold!  (thats great news), and he scored 100% on his hearing test!   We also have Lincoln's old cardiologist looking at the results from his last ECHO as it is not common for there to be a residual leak this far after surgery - which was present in in ECHO he has preformed at the end of November.  He is being referred back to his old paediatrician and we have our old family Dr.  Its comforting to be with those who are already familiar with him and know his history.

Theres Lincoln in the 2015 Canadian Down Syndrome Society's Calander!!

We are no doubt excited about this New Year, and new school.  Keep shining Lincoln.  You are doing such amazing things.

Wishing you all the best for 2015!  Thanks for reading :)

Down Syndrome in Kindergarten

As if 31 days of straight blogging wasn't enough!!!  Maybe I'm going through some withdrawal here... But, I had to share my day with you all.  November 1-7 is National Down Syndrome Awareness Week (as you may know) in Canada.  I thought about going another 7 days of talking about it, but I figured - after 31 days, you're probably getting a bit bored of it.  Anyhoo....  Lincoln has a great teacher - just throwing that out there.  When we met with her, and the ECE worker in his class a couple of days before school started, she informed me that she played a bit of the 'pick me pick me' scenario to have Lincoln in her class.  Having said that, she just so happens to have a niece who has Down syndrome.  When she found out Lincoln would be attending, she knew she wanted him.  And I'm so glad she did.  Knowing that off the bat , she got him.  She was familiar with it.  Hands on.  Lincoln has been learning so much in school and is very accepted by his peers, and is understood and included in everything (ahem... well, everything until last week... He no longer has the freedom to play in the non fenced in playground area at school - which just so happens to have a park - because he ran to the parking lot 3 times (50 feet away mind you) - and for the record, I completely understand).  BUT, for the most part, he is included.  When his teacher asked me if I would come to the class this week to talk to the students about Down syndrome for Canada's awareness week - I said yes.
I got to witness the morning routine in Lincoln's class this morning.  From the drop off, to the bell ringing, to getting undressed and emptying back packs, to them writing their names - at assigned chairs, then grabbing a book and patiently waiting for the national anthem and morning announcements.  Even though they were thrilled to have a 'new' student (a.k.a. Parker) in their class, they were amazingly well behaved - especially since he was "Lincolns brother!"  Lincoln was one of the rest.  He traced his name : L-i-n-oOOl, followed by a free hand L-i, and then proudly wavied it in the air saying "I wrote my name".  Then he got up,  grabbed a book, said "hi mom (turned to Parker) -  Parker, grab a book - sit" and sat - ready for circle time.  He knew what to do.  And he did it, quite quick!  They then sang an ABC song with letters and sounds.  Lincoln was recognized for doing an amazing job sounding all the letters, and he totally got his "F" sound PERFECTLY! (which we have been working on).   They did some reading, about having a special guest (which they said was Parker, but his teachers called the guest a her - either way...)  Then it was ME time.  I was quite nervous about what to talk about to be honest with you, but after much thought and research on the appropriate thing for that age group, I came across a few books.  None of which were available at any indigo's in the city!!  I did find a book on differences, then bought a book from an online book store called "my friend Isabelle"  Its a book about a boy who has a friend named Isabelle.  He mentions that in some ways they are different, but they still like to do the same things.  He is tall, she is short, he runs fast, she takes her time, they eat snacks, play at the park, dance, etc. together.  Isabelle happens to have Down syndrome, and I thought the book explained everything I needed to say.  Not too many questions were asked (I'm kind of thankful for that).  After the book, we did some discussing, then an activity I found online that involved marshmallows.  I think thats where I won them over, because they were SO interested in everything!!  They were having a blast!!  They put a marshmallow in their mouths and we sang the ABC's.  When the song was done, they enjoyed their marshmallows (yes - even Lincoln  - had.a.lick.  yup.  not kidding), and said "that was hard!!"  The example was to give a bit of an explanation as to why its much harder for Lincoln to talk, and how they really had to work hard to be able to say the alphabet with a mouth full.   Then they wrote their names with socks on their hands for the same purpose.  Some did quite well, but others admitted to a struggle.  Then we read another story that talked about why its ok to be different - called  "Its OK to be different"  I also printed a little thing for the kids to take home in their agenda (see pic below). Lincolns note home today said that they all loved it, and were very happy I could come in to talk with the class, and the note was sent home with each classmate.   Im so glad the kids had a blast, and I loved being able to witness Lincoln in a classroom situation with a whole bunch of other kids.  He made me so proud.   I honestly couldn't be happier.  So a big Thank you to Lincoln's school for letting this happen.

More 'ups' than 'downs'

Well, I did it, 31 days of blogging,  and only 1 re-post.  The harsh reality of it is... now its NOVEMBER!!!   When I first entered the world of Down syndrome almost 5 years ago, I really had no idea what kind of journey I would be on.  As I was thinking back to when it all started last night, it came to me that i really was unaware of the 'reality' during the time when we first received his diagnosis.  I was blank - and I know that I can't blame myself for that.  There were so many things going through my mind in 2 days, that it was impossible for anything to really sink in.  It was like a constant "OK God... whats next..." my mind was just too busy trying to figure out everything.  Everything was so new to me as a mom and i didn't know what to expect next.. In 2 days, my mind juggled Down syndrome, pneumonia - what are normal oxygen levels anyway... why are we in an ambulance, how does my baby have a heart murmur - his heart has been "healthy" for 10 months - or has it..., x rays, blood work, new doctors, nurses walking into our room with masks and gowns because we were quarantined, why are we not allowed to leave the room, am I pregnant again, when do we get to go home... it was just so much, that nothing really set in.  We were surrounded by people who cared.  People who knew what was in the best interest for Lincoln... and after the 5 days we spent in the hospital Down syndrome just didn't matter to us.  Pneumonia was cleared.  His heart got 'fixed'.  Blood work results never came back (that's a good thing), we were home, and I was in fact pregnant again, only to lose the baby 2 weeks later.   God certainly had his way of testing me.  Testing my faith and hitting me hard with every single thing that had happened  all at one time.  But,   really, God is the one who got me through it!   When I started reading up about Down syndrome, I recall coming across a post where a mom of a new born was telling her story.  From a diagnosis to pneumonia to heart surgery.  I cried as I read her post, as I thought 'I couldn't even imagine going through all of that...' only to realize that, yes, that was me... I did go through that, only my baby wasn't a new born.   

I wasn't really ever bothered about the fact that Lincoln wasn't diagnosed right away.  Sure, I questioned it, but who wouldn't?    I went through 25 hours of labour, the nurses were switching shifts just as Lincoln made his grand appearance, and maybe each nurse thought the other nurse did the regular screening of the hands and feet or whatever.  I don't really know - nor do I care.  My life has Down syndrome in it, and I couldn't be enjoying this journey any more than I am.  I remember being so excited shortly after we got home from the hospital.  Excited because every new milestone was going to be something so majour, and there was not an ounce more of love that I had left to give - he was getting it all.  There are even days where Down syndrome doesn't cross my mind.  We are who we are.  We are loved by all those that matter, and in most cases, Lincoln is respected and accepted.   His life is not much different than any other.  Sure, he is seen by a paediatrician twice a year - when he is not sick, and he has tubes in his ears that are preventing him from constant ear infections and build up,  but that's so he can thrive with speech.   Sure he has therapy to help him, and there are yearly blood tests, but that's just to rule out common illnesses that can be associated with Down syndrome like thyroid problems and leukaemia.  We don't know much different,  and we will take it.  If all of this means Lincoln will be the best he can be - and if all of that means research has come this far and even farther, i WILL take it.   

After reading all of that - you're probably wondering how i can say that there have been more ups than downs...   Lincoln came into this world to make a difference.   By sharing our story.  By speaking in front of people.  By writing an article for  Right to Life...I'm pretty sure we are making a difference somewhere.  All because someone like Lincoln is proof enough to me that even though we have been down, we have experienced many more ups.  We are here to make a change.  To show how having an extra chromosome doesn't define who you are or what you can be.   His family loves him, we love him,  his friends and school love him, his therapists love him, but whats even more - God loves him.  He was created just the way he was meant to be.  We love our life, and all that has been brought in to it - thanks to Down syndrome.  Our therapists aren't just therapists, they're friends.  Our doctors aren't just people, they're educated, and they prove to show they care.  

Even though today is technically day 31, we really should never stop raising awareness.  I bother with all this awareness because I want people to be so aware of Down syndrome that one day we just won't see it anymore.  I wish it to be no big deal so that when you meet Lincoln, or any other individual with Down syndrome,  you will see them for who they are, and not what you think they are going to be like thanks to stereotypes.  I want you to see his beautiful eyes, his awesome sense of humour, and all of his love for life.  Together we can accept.  We can show love and respect.  We can trust, listen to, understand, and defend Down syndrome.    Because inside Lincoln is a force so powerful, its infectious. 






Thank You!!!

Down syndrome Proud

Today I am brought here with happy tears, and although I could have said that every day,  today is different.  Today I got to experience something I will never forget.  

We will for surly be
framing this bad boy.

A moment that grandparents, cousins, and an aunt all got to witness with me.  Today is the day Lincoln got to walk up in front of the whole school to receive his academic award.   

I am proud because he was not shy and waved proudly when he spotted us in the crowd. I had immeasurable amounts of pride as we watched him proudly smile, and acknowledge he was awarded for being an amazing student.  

I'm so proud of who he is and what he has accomplished. I feel great waving back and showing the world that yes, HE IS MINE!!  And it doesn't stop there.  

It warms my heart knowing that Lincoln is included in everything that his school and class does.  He has friends who love him when he is there, and who also miss him when he is not.  He has value there.  His teachers work hand in hand with us, and it is obvious that he is making some serious strides - hence the award.  

I am happy he is my son, and that he shows me such wonderful things about life.    






Who would have thought, that this little guy who is 3'4" and 5.5 years old would make his family this proud.  He has worked so much harder than anyone else in his life already, and getting acknowledged for improving proves to show that he just wont to stop. 

Every single day I have more and more reasons to be proud of him.   Proud of the little guy who just because he doesn't speak clearly, know how to tie his shoes, or button his coat... yet he never gives up on trying.  He greets everyone with pride, and is just as proud of himself as he should be.  Congratulations Lincoln.  I feel blessed to have you as my son, and to be surrounded by awesome people who believe in, and don't underestimate YOU and all you have to offer.

Yes, It was costume day.  I bought Lincoln a new shirt for today, but I guess he wanted to be superman.  And what better day to be superman than today.  LOVE

all you have to do is just BE YOU.

Lincoln - at the beginning of school, waiting for the bell.  A
swarm of kids always greet him at the gate, then they get
hugs, then the run around and play.  I brings tears to my eyes
every single morning. 

We are on our last stretch of Down syndrome "acceptance" month  (i figured you're likely all well "aware" by now, so acceptance seemed appropriate.)  Throughout this month, i've given a glimpse of how our life looks with Down syndrome in it.  And if you have taken anything in, you would have noticed that its not anything compared to the stats or stereotypes out there. You probably noticed that our life is just as regular as anyone else out there. Lincoln is just as included as any other child, and we have just as much love for both of our boys as every other loving parent out there.  It was my hope, that by sharing our story, it would open your eyes, and show you that there is nothing to be afraid about when it comes to Down syndrome.  Every parent has a gift.  And its up to us how we wish to spread the joy that comes along with it.  I can't even begin to express how grateful I am for all of you fellow readers out there.  The love and support, the comments, likes, and shares - all mean so much to me.  It has been tough blogging every.single.day, but knowing you are reading it, and getting something from it makes it all worth while.  But seriously, I still can't get over Lincoln... and how much he is making a difference in so many peoples lives - just by being who he is.  He is my hero.  He is the reason for the blog, the reason maybe  (hopefully) one life was saved due to someone being scared of or not understanding exactly what Down syndrome is all about.  He is proof.  He is my daily guide to show me that it doesn't matter who you are.  People will respect you, and embrace what you have to offer, all you have to do is be YOU.  This is the most rewarding experience I never knew I wanted or that I needed.  He has taught me to celebrate all things in life that we may take for granted but just don't realize.  He exceeds many of the expectations set out there by development charts - and every day he blows my mind. 

blessings NOT burdens

We feel blessed (or maybe privileged might even be the best word)... not burdened,  to have a child with and extra 21st chromosome.  Lincoln has introduced us to a whole new way of looking at life.  He has opened our hearts to a bigger understanding on what it means to be human, and what it means to see every human as a blessing.  Easily said.... and I will tell you why. Lincoln has a little brother - Parker.  He is 3.5, and a bit of a brainiac (if you ask me).  Parker is Lincolns biggest role model, and undoubtedly Lincoln is Parkers biggest role model.  Yes, they fight, and Yes, they get into A LOT of trouble together, but together they are learning how to share, how to cause mischief, and are learning the importance of acceptance.  Its a shame to think that some people think having a child with a special need can be a burden on a family... but when I look at Lincoln and Parker together, I don't see one child who is a burden nor do i see one being held back due to having a sibling who happens to have a special need.  Rather, I see two boys, who get along, play nicely but also who fight and argue.  The important thing is that they think the same of each other.  I see two best friends who yes, have their own ways,  but at the end of the day they are enjoying their same favourite games, their same superhero obsession, same favourite movies, their favourite ways of annoying mom, and their simple way of doing things the way they know how.   They are already friends, role models, parners in crime and each others annoyance.... and you want to know the best part??  NONE of it has to do with Down syndrome!!  It just has to do with two brothers.   Yes, I suspect that Lincolns life may be more challenging at times than Parkers, but thats only because society has troubles with accepting him for who he is.  Despite all of his limitations, I continue to know that Lincolns life is nothing short of a blessing, and that he has played a positive role in not only our lives, but in the lives of our family and friends.   If I could offer anyone who doesn't have Down syndrome in their lives the opportunity to get to know and love someone who does, I would. 

Because maybe thats what it would take for people to realize that they are just like you and me, that they have such an appreciation and compassion and care for others.  So please tell me where the burden part comes in.  We don't see it, and we don't feel it.... And that brings me back to where I started.  I am blessed with both of my kids.  Blessed that they have each other.  Blessed we don't live a cookie cutter life, and blessed to share our story to put a message out there that every life has value. Just because our path is different than yours might be, please know ... we don't have a burden holding us back.  

milestone monday

Its coming close to the end of the month, and to be honest - yes... I am slowly and slightly running out of ideas on what to write about without repeating myself too much - which i am sure has happened, and you have noticed.  Today, I was scrolling through my Facebook news feed, and saw a beautiful picture of a sweet little girl with Down syndrome.  And the title was "Milestone Monday"... SO, today I will follow suit off the top of my head, about Lincolns milestones.  As you already know, children with Down syndrome are typically slower at develping milestones than typically developing children.  Lincoln - they say - is on the higher functioning scale (if there is such a thing) despite his extra chromosome.  He has received therapy since his diagnosis for speech, occupational therapy, and physical therapy.  He has never really 'needed' OT (occupational therapy) yet, and he was discharged from his physical therapist once he commenced walking.   Anyways, I thought I would take a little walk down memory lane with you on the milestones that Lincoln has hit, and the ones we are still working towards.

He started smiling at 6 weeks old, and coo'd at 2 months (non stop telling stories).  First rolled over at 4 months, and was sitting unassisted at 7.5 months.  Lincoln never really crawled on his hands and knees, but he started army crawling (without using his legs) around 9 months. (and thats where his brute strength started.  Imagin it.  thats a lot of hard work!!)   He was diagnosed with Down syndrome at 10 months,  and started eating real human food around 10 months also.  He had heart surgery at 12 months and things really started to pick up from there - probably from resolving pulmonary hypertension.  He started pulling himself up at 14 months, started his famous butt scoot when he was 15 months,  started walking behind toys around 18 months,  did his mowgli impersonating walk-like move at 19 months, started self standing when he was 20 months old, and was walking full time by 2.5 years.    By the time he was 2.5, he knew a handful of words, and well over 20 different signs in sign language.  He got his first tooth when he was 12 months, and his last  when he was 23 months - mostly in order (children with Down syndrome tend to have their teeth appear in a random order).  He never 

really needed OT because his fine motor skills and eating was going well.  He could build a 5 high block stacking tower when he was 1.5, and has a good pincher grip on his pencil. However,  I predict more OT work in the near future to help with writing letters and using scissors to cut on lines.  Lincoln doesn't ride a bike  yet (but he doesn't want to try either).  He is just like any other kid on the playground climbing rope walls, rock walls, steps and slides.  He has been jumping off of 2 feet since 3.5 years old, and one of his favourite things to do now is jump on bouncy castles or trampolines or even over every crack in the sidewalk.  He loves working out, and can lift 3 lb weights - which he does maybe 3 times a week for 10 mins (by choice.  monkey see, monkey do).  We continue to work with a speech therapist - although no appointments have been made yet since school started.  We have had one PDT (program development team) meeting, in which his teacher and ece in his class stated he is doing very well. 

He responds well to one on one attention and direction, he uses a flip book and board marker symbols around the teachers neck to indicate what is being asked of him - or what he would like - which seems to be working out very well.  He is always excited to learn, is very talkative, but struggles with clean up.  We will work on an Individual Education Plan  (IEP) come the new year, but all in all.  Lincoln is doing qvery well.   Despite a slight delay reaching his milestones, Lincoln  loves to learn, and gets excited about accomplishing new things.  If i've learned anything about being a mom these past 5.5 years, its that you never know when your child is going to accomplish any specific milestone.  Lincoln works hard all the time, and my heart is so full after every milestone is accomplished after countless hours of woking on achieving them. It is so awesome being a parent.