When I look back at old pictures all I see is love.  I really do have a hard time seeing Declan’s physical features in most of them.  I’m not sure if that makes me a bad mom for looking for these things or wondering if others do too.  So the other day while searching around, I came across something that reminded me it isn’t the features that make him who he is, it’s what’s inside.  I’m not sure of the author, but it’s titled the Down Syndrome Creed

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I’m no different
His love knows no bounds
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I’ve chosen
Will help me get started
For I’m one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I’ll do it as you do
But at my own pace

Today as our family heads out on our 1st Annual Down Syndrome Awareness walk, I’m hoping everyone will see Declan for who he is.  It’s really about acceptance.  And although Declan may have only the one crease on his hand or a floppy tongue because his muscle just aren’t strong enought sometimes to hold it in – he is a Boy.  A Boy first, who just happens to have Down Syndrome.

HAPPY NDSAW WALK DAY!  WE CAN’T WAIT!

My brother-in-law shared this video with me.  There is only one word to describe if – INSPIRATION!http://espn.go.com/video/clip?id=8450488

For a musician, inspiration can come from heartaches and misfortunes.  For an artist, it can be as simple as a drive through cottage country.  For me, as a parent of a child with special needs, it comes from him.  Before Declan, I was under the impression that all I ever needed was a little motivation and determination to get the job done.  The door to Inspiration hadn’t even been unlocked.

I’ve come to learn, I couldn’t be more wrong.  I watch son struggle with what may come easier to most.  I’ve watched him resist as the therapist tries for one more time to get him to stand for a few seconds longer.  I’ve listened as he cries in frustration to get to his toys and he can’t quite figure out how to roll over.  And I’ve felt as we walk into that room of strangers and even more strange noises, as his senses just reach overload – and he panics.  Much like today during our monthly get together with local moms and other kids with Down Syndrome.

As I looked around that room this morning, my heart was full of happy tears.  I was awakened to what matters.  From little ones who have mastered sitting up to those who can now climb down off of chairs!  They all have worked so hard to get to where they are.  Each took their turn showing off their new tricks.  And all of us moms smiled back because of how proud we are.  But deep down I believe it’s because we all knew we’d be leaving there today with more that what we planned – a little more Inspiration!

People with Down Syndrome enjoy life.  They have relationships, take pride in the jobs and display their talents like any of us would do.  They are PEOPLE!  A new friend I’ve met since I’ve joined this club shared her thoughts about this week:

Dear Friends,

November 1st to 7th marks National Down Syndrome Awareness Week in Canada. During this special week of awareness I invite you to join me in being an advocate for individuals with Down syndrome. Importantly, I also ask you to take to heart this year’s campaign theme: ‘See the ability.’ And to focus on the wonderful strengths, talents and abilities individuals with Down syndrome offer to society.As some of you may know, rather coincidentally, it was exactly two years ago during National Down Syndrome Awareness Week I learned the beautiful baby I was expecting would be born with Down syndrome. I am the first to admit that life has indeed changed with the addition of our youngest daughter – but I challenge any parent to contest that their life hasn’t changed following the welcome of a new baby to the family, ability or disability aside.Since this time I have learned an awful lot about Down syndrome and have had many of my own misconceptions and assumptions rightfully corrected. I also have had the pleasure of meeting and building wonderful friendships with many individuals with Down syndrome and their families. I am grateful in many ways to have been inducted into this exclusive club – that of being a parent or relative to someone with Down syndrome – and feel fortunate that I continue to have my eyes opened in ways that allow me to focus on the important things in life and to better appreciate its little miracles.I’m an advocate yes, but a mom first. My hopes and dreams and fears for my youngest daughter are the same as for my oldest, and I assume they are similar to what any parent wishes for their children. I want my daughters to love and be loved. I want them to be educated and fulfilled and to lead healthy, happy and productive lives. Is this so different?Yes, my youngest daughter does face some challenges. And yes, she often has to work harder to achieve many of the tasks that come so easily to ‘typical’ kids. But she does and will continue to successfully meet the challenges put before her. What more, she is a blessing to our family in every way and is so fortunate to be surrounded by such amazing champions and supporters who help her reach these milestones and who will push her to realize oodles of other accomplishments and successes in the years to come.This week, I ask you to join me in celebrating National Down Syndrome Awareness in Canada. I also encourage each of you to really ‘See the Ability’ – in those with Down syndrome, yes. But in ALL individuals you have the pleasure to meet.Feel free to pass along, and please do what you can to spread the news about Down syndrome Awareness Week in Canada.

Well said!  Here is Nicholas’ story.  He is the spokesperson for this years campaign.  http://www.cdss.ca/ndsaw/day2-2012.php

Happy Friday!  And don’t forget to spread the word – SEE THE ABILITY!

A few weeks back we had an appointment for his Speech Assessment.  Although we had no idea what to expect, we knew all the tricks and accomplishments we were ready to share.  The session was play-based and full of a tonne of questions. “Does he do this?” or “Have I seen him do that?” were mostly followed by an excited “YES!” from us.  Check, check, side note, check – I watched as the therapist filed through the questionnaire.  As I sat there and watch Declan play with his new friend, I was thrilled with how well things were going.  The therapist walked us through how the assessment worked – the new standards allowed for a comparison of Declan’s accomplishments against himself instead of against the generalized benchmarks being used in the past.  Perfect!!  I wasn’t ready for the “POP” in my bubble that came next.  “So Declan is functioning for the most part at a 6-9 month range and shows some skills in the 9-12 month range”.

I don’t think I can articulate to most why this saddened me so much.  We finished up and headed home.   The drive: that dreaded drive home – alone with my thoughts.  It was beyond discouraging to get that news. We work, and we practice and we work again – All just to go to bed and wake up the next day and start over.  And through most of it, Declan whines or even cries in protest.  “I’ve had enough!” he probably thinks but we don’t give up instead we push him a little further.  It’s exhausting; it takes its toll on all of us.  Most would say not to worry, he will get there someday, or that I’m sure he will catch up.  But that’s not the case – we already know that Declan will have challenges and delays and may never do some of things most of us do.  So we work and we practice and we work again.  And just when he’s at the end of is rope – we work some more.  Now imagine this is you – and at the end of all your sweat and tears – you are told your efforts have produced results that are something less than mediocre.

I know the therapist never actually uttered those words.  But walking out of that room that day, it’s exactly how I felt.   I wasn’t sure I had it in me to hear what the next group of therapists had to say.  So this past weekend we made ourselves comfortable on the mats on the floor with Declan’s Physical Therapist and I was ready for the defeat.  Gloves were dropped, sweatband was on!   I found myself rhyming off all the things he could do but followed up each with what he wasn’t doing.   “He can sit up on his own, but he can’t get back up once he falls over,” I shared.  “This is typical” she said.  As the therapist scrolled down her checklist we landed on the topic of food.  I could see Jamie was dying to tell her, “He feeds himself with a fork!” I bragged about how all of Jamie’s’ hard work day in and day out at the dinner table paid off when he finally picked up the fork a few weeks ago and put it in his mouth.  “Wow, he’s advanced” she blurted.  And with that came the kick I needed to set me back on track.

Technically speaking, Declan will have difficulty with things that come easy to most.  Working hard to get things done will be his norm.   And at the end of the day, he may not be where he needs to.  But it’s not in vain.  He may not be the best Soccer Player but he will know how to bake the best cupcakes in Town (just like his mum).  He may not be able to tie his shoes as quickly as his cousins, but he definitely will be the most fashionable when all is said and done (just like his pa!) He may not be able to always TELL you what he wants and needs, but he will always show you like he does today with his hugs for mommy and kisses for daddy.    Technically speaking, that’s all that really matters!

http://cdss.ca/ndsaw/

The first week of November is National Down Syndrome Awareness week.  Our family has decide to host a walk through our community in the hopes that all of our neighbours become more aware and are able to “See the Ability” of Down Syndrome.    

If you have a chance, take the time to read the link for the Canadian Down Syndrome Society. 

And for those of you interested in the details of the walk – message me. We’d love to have you join all of us in creating awareness!

See the ability

http://cdss.ca/ndsaw/

The first week of November marks National Down Syndrome Awareness Week.  For someone who loves to celebrate any occasion, it gives me a reason to look forward to November.   Our family plan is to host a walk throughout our neighborhood in the hopes others will see us and be reminded of Down Syndrome If I could scale the CN Tower and scream as loud I could, I would – Just so everyone knows.  More than anything, I wish for everyone to know what it really means to have DS.

It’s hard to believe it’s been a year already.  Everyone talks about how quickly time flies, but it really is true.  On the day of Declans’ party so many of your closest family and friends wanted to celebrate what a great year he’s had.  This time last year we were celebrating finally getting  home.  To be a year later, this day seemed like a lifetime away.  I wish I could bottle the love and joy and happiness everyone brought for him to the party and give it back 19 years from now, when he may be a little too cool for parties with mom and dad. (LOL)   As the day unwound and we settled in to open the gifts, I thought of how lucky he was.  The next day, during one of those dreaded moments of silence, I couldn’t help but think about how lucky all of us are to have Declan.  It’s his birthday – his day to get all the love, all the joy, all the gifts – but really, he was the one giving all of us the gifts.

Everyone talks about their children and how each child is a gift. But when we stop and  ask ourselves what makes them a gift, can we answer?  I don’t think there are enough words in the world for me to write the reasons.  Since the day he was born, I have watched him struggle with what may come easier to some.  Along the way were many tears (both his and mine) – but he’s always managed to succeed.  Whether it be the first time he was able to latch on my breast without a feeding tube or to just this past week when he finally mastered the skill of palming his cheerios into his mouth, he has succeeded (and most times with the worlds biggest smile to follow).  He has taught me that you can’t give up even when it gets so hard that all you can do is cry – somehow, someway, you have to find the strength to just keep trying.  And success will come.

He has created a bond between Jamie and I that I’m not sure we ever could have had on our own.  We made a pack on the journey home from the hospital that day to promise to ALWAYS share what’s on our minds.  Sometimes it may not be what we want to hear, but it’s what we need to know.  We will find a way to pick each other up, even when we don`t know how – because it`s for Declan.  And because it`s what both of us deserve.
Because of Delcan, friendships that otherwise were withering, have been polenated – and now are in bloom again 😉  Doors have opened to friends we did not know were on the other side, but hopefully will be for years to come.   Old friends remind us as they come to visit, should we ever get lost,  their footprints are in the sand to help us find our way back to their home.

He’s allowed me to come to a realization –  having a child changes who are are.  Before Declan, my “glass” for the most part was usually half empty – today it’s just half a glass with the understanding that some days it may be a little more or less full than another and I`m so lucky to have all that I do.  I’ve learned to become a more tolerant person, realizing people don’t always mean what they  say or say what them mean.  I have accepted that some relationships, as hard as you try, just can’t hold.  Peoples expectations of what I can give may not be realistic, even if it’s what I was able to do in the past.  The reality is some relationships just can’t survive – my energy and fight for anything and everything important belongs to my son now.  (swallow a big breath past the pit in my throat) – And I am okay with that.

But with all that he has given to me, he has given more to everyone else.  Because of Declan, our friends and family now have a reason to become educated on something they may never have known about – World Down Syndrome Day, the colour Blue or that extra deep gap between his first and second toe.   Because of him, my niece now understands the meaning of a disability – needing just a little help – and maybe just maybe she can stand up for someone else on the playground who also needs a little help.  Because of him, our friends and family let us know they are here to support with open arms – something we may have known if he were a typical child – but not something we would have felt, like we do each and everyday from all of you.  All of this aside, by far the best gift he has given is knowing  EVERYONE  is anxiously waiting, and wanting for him to succeed.

A very wise man came to visit us in the hospital during our darkest hours after Declan was born.  At a time when everyone was sharing our pain and tears, he managed to break through the rain cloud and let the sunshine in.  Very matter of fact, he reminded us,  “Don`t  focus on the why me, instead tell everyone `watch how well I do this“…  I still can`t utter the phrase without crying –  Then because I didn`t think I had it in me.  Today because I`m so proud that I`ve succeed and I can only imagine the young man we will have to call our son 19 years from.

Happy Birthday my Love – I`m estatic to watch how well you do this thing called life in the many years to come!

Previously posted on Sept. 1st, 2012