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.  

Joy + Sunday = Fun:day

Happy Sunday - fun:day!!
Its been one heck of a weekend!!! We pretty much got kicked out of our house - for sanity sake. We had 2 open houses, and if anyone knows, keeping the house clean while the kids are still growing is like shovelling the sidewalk while its still snowing. SO, thanks to my parents... we had a sleepover.

"Let anyone who comes to you go away feeling better and happier. Every one should see goodness in your face, in your eyes, in your smile. Joy shows from the eyes. It appears when we speak and walk. It cannot be kept closed inside us. It reacts outside. Joy is very infectious." – Mother Teresa



So many things are bringing joy to the days - I thought I would share a few moments from the weekend with you. Enjoy this never ending happy loving life smile.

 

proud moment

Im going to have a real moment here.  Yesterday I had an emotional day.  Something made me so incredibly proud.   Seeing Lincoln being included by fellow peers is something I strive for, so the fact it is actually happening is so overwhelmingly awesome.  I honestly can't express enough gratification for his school, teachers and fellow students.  The moment i drop him off kids say "Hi Lincoln" through the fence, him finding his two lady friends (making sure he gets that hug), and him continuing to run around until the bell rings. I love it. I know it doesn't stop there.   Lincoln has been chosen to receive the academic award in his class - for the month of Octotber.  Seriously way proud of him.  I can't wait for the assembly.  They said I was more than welcome to attend... so I hope they don't mind me showing up with an army of equally proud people.  


It warms my heart to know people are loving him as much as he deserves.  He has made some serious strides this past month, and for that, he was chosen to receive the award.  This is huge.  Lincoln has always had a mind set to do things.  To get them done, and to do whatever it takes in order for him to achieve them.  His teachers have expressed how incredibly proud they are of him, and how he interacts with his friends in class.  It shouldn't surprise me, but it does.  Keep being you Lincoln.  You are my rock star, and you make me SO proud!!

don't be sorry.

I have read a fair share of articles about Down syndrome this month.  And there seems to be something common among them all... which is how a diagnosis is delivered.  It seems to be - whether new born, or a prenatal diagnosis, the Doctor delivering the news tends to come across as if a funeral were happening.  As if the dreams of some couple and their baby are crushed - as if theres no hope, nothing positive, as if its a long road of hardships that come along with it.  Truth is - ok, maybe no one dreams of having a child with Down syndrome, but that certainly doesn't mean there dreams arent created thanks TO Down syndrome.  The delivery of a diagnosis is something that is going to stick with the family forever.  Making it more positive should be the approach.  They ARE the lucky few.  Its easier to gain the attention of the couple who are receiving the news for the first time - if you start it with something positive instead of saying 'sorry.'   There is still people today who say sorry or feel sorry after finding out I have a child with Down syndrome.  I'm still trying to figure out what there is to be sorry about.

Lincoln could have been diagnosed at birth.  I specifically remember the nurse asking moments after he was born - who's ears he had... my husband also has a fold in his ears.  But for the reason only God above knows, he wasn't.  He could have been diagnosed the day we saw the paediatrician, BUT he wasn't - simply because she didn't want to deliver the news to only me - without my husband - and she wanted to have the confirmation before confirming.  She did say there was a chance - but that didn't set in at the time.  I went home and researched it - and needless to say, i had 5 weeks of comforting myself to positively receive the diagnosis if it had been positive.  After 5 weeks of waiting, we were asked to meet her.  We knew then... we were 99% sure she was going to tell us.  The way she delivered the news was a cold confirmation.  I suppose it would be difficult for any Doctor... but I think it was extra difficult for her because she kind of had to admit to that the medical family we had before had failed.

The new news should start with a connecting story,  because lets be honest here, modern medicine has come so far.  It used to be that the life expectancy of individuals with Down syndrome was significantly shorter, but now they are expected to live as long of a life as anyone else. Sure, there will be tests to preform, and there may be medical conditions that need to be addressed, but thanks to well educated Doctors and surgeons, we can stay confident, and know that everything will be fine.  There will be plenty of good information available, and we should take it one step at a time. The child will do well, be loving, fulfill many lives, and give you plenty of surprises along the way.   There is never a hug left undelivered, or a tear left un wiped at home.  As time goes on, we have come to understand that Lincoln is teaching us some of the greatest lessons we have learned so far!  So don't be sorry.  Because we sure as heck aren't!!!

Life Changing

Lincoln changed my life the second he entered this world.   There is something about being a parent that changes you.  Whether its the 9 months of  living life as two people, having a belly stretched causing ever lasting tiger marks,  the feeling of worry that you're not laying on the right side,  the constant reminder of being hoofed in the ribs in the middle of the night, or you can't eat this, or the lack of wine at the dinner table.... theres something that starts with pregnancy that changes you.  

It wasn't until Lincoln was close to a year old that being a mom changed me even more.  Maybe it was everything happening so quickly.  Maybe it was the constant care, the feeling of being loved because of a whirl wind of events happening all at once, or the never ending tests that followed the diagnosis... I'm not sure, but it opened my eyes to a whole new way of appreciation.  An appreciation for God, an appreciation for all that we had, and all that we had done.  Sharing our story about what life is like for us as a family who has been nothing short of inspired by Down syndrome has been rewarding!!  Sharing to show others that  Lincoln is just a kid.  a regular kid, who goes to a regular school, who eats regular food, does regular activities, sleeps in a regular bed, and has regular friends and family who accept him for him.  He "just" has Down syndrome.  An extra 21st chromosome in ever blood cell in his body.

Even though nothing has changed ABOUT Down syndrome - I'm love how people have changed the way they SEE Down syndrome.  That eyes have been opened, and they are included - and expected to be included.  It boggles my mind that back in the day parents were given a choice after having a child born with Down syndrome.  They could choose on taking the child home, or exclude them by sending them off to an institution - and unfortunately, by default, they were sent off.  These parents were hardly given the opportunity to learn how to love a life that didn't have a perfect 'future' picture attached to it.

I'm so happy that these days, children with Down syndrome are
expected to do many things.  That there are many educated assistance available to help us parents - in helping our children reach the same goals as others.  I'm thankful they live at home, are expected to read and write, ride a bike and play sports, attend school and be included in the community.   I'm thankful for those of the past who decided it was time to make a change in the way we all treat each other,  the way we welcome each other, and the way we include one another.   Lincoln has changed my life, and by sharing our story, I hope maybe I have helped change someone else's perspectives on what individuals living with Down syndrome are really capable of accomplishing.  Change starts somewhere, so lets continue to be the change.

the power of words

See... there are these things, called words.  Words are great! They help us communicate, they help us educate.  They have the power to help us learn, write, read, and talk.  Some are good, and some are bad.  They are powerful.   The words we use have the power to help or hurt.  I realize that if we allow ourselves to be hurt by what other people say, we are giving the words that have been spoken - the power that they don't deserve.  Its a tough one, because I have allowed other peoples words to get a rise out of me.  We've all heard the saying "sticks and stones will break my bones, but words will never hurt me."  But words can hurt!!  As for right now, Lincoln has not yet notice when or if he may be the pun of someones joke - as far as I know.  Unfortunately, I have witnessed it.... a few times, actually.   I realize that Lincoln is not on the same level - developmentally - as his peers with a few things.  He does not speak clearly, he can't zip up his own jacket, he can't master the monkey bars at the park, and he can't ride a bike yet.  But just because his developmental level is not the same as those who surround him, doesn't mean he can't be hurt by something someone says.  I'm brought back to a specific memory that hurt me.  One that woke me up to the world out there, and how harsh it can be....  

Moments after Lincoln received a picture from his cousin while we were about to leave the park.  Lincoln beamed - as only he can beam while he proudly showed it off to a group of older girls - who only acknowledged that he couldn't speak clearly, and continued by asking him what was wrong with him, and telling him he could leave.  Lincoln - thankfully - thought nothing of it, and proceeded to the car.  It was a moment I have not forgotten yet, and defiantly a moment of learning for me. It may have been the first, but I know it isn't the last.  It was an eye opener for sure... that not everyone who sees Lincoln will see him for who he is.  Regardless of the smile plastered on his face.  It was a moment that I allowed to get the best of me.  I allowed it to hurt me... I gave the words the power they didn't deserve.  But... it was their loss.  It doesn't matter if words are yelled, uttered sarcastically or stated quietly.  We can always see the power they have, and realize how something so simply said can changes the value we have in others.

I have a dream, that when you meet Lincoln, or any other person with Down syndrome, that you will see what I see... a person.  One who has hopes and dreams and feelings and potential - one who was wonderfully designed to be exactly who they were meant to be.  I dream that by sharing my heart and story, that i may help others understand that a label can't define who they are as people.  Every person is born with two things - the desire to be loved, and the want to be accepted.  When people say hurtful things, it means they are not accepting.  People live off of the love.  And everyone just wants to be accepted....   

So watch what you say, say what you mean, and mean what you say

 - always keeping others in mind.