TWO!

Today my littlest guy turned TWO!

When our kids were little we always took pictures of them on the morning of their Birthdays.

Here is Russell this morning, ripping through the kitchen cupboards.

He had a rough night last night. He has had croup for a week or so now. Last week it was pretty bad, after being put on medicine it got better for a few days, but last night it came back hard.

Croup is scary, none of my other kids have ever had it...To hear Russell struggling to breath terrifies me.

Last night I sat up with him at 4am rocking him...It was a quiet moment...Just me and my boy, the way it was two years ago at that exact time.

Just me and Russell, 4am.

Russell spent the day with his Nana and Papa while Brad and I went shopping.

On the drive to Kamloops it was quiet and it was hard not to think back to two years ago...I noticed the clock as it struck that time...11am (give or take a few minutes) When the Doctor first walked in and examined Russell.

When I first heard the words...Down syndrome.

I found myself fighting back tears, and then I thought screw it, I can cry a little...So I did.

And it wasn't a "poor me" cry...It was a cry of relief...A cry of  "We have come so far " 

 It was tears of  "Who knew it was going to be this good?"

Because it has been good...Better than good...The past two years have been the best of our lives!

And that was the only time the entire day I thought of "IT" happening. I didn't feel any of the powerful emotions I did last year...Those have faded. And it feels so good to have the hurt and fear I first felt behind me now.

Today we simply celebrated our boy.

A boy who loves balloons!

We just had a quick, small, party because everyone is either sick or getting sick in this house. We didn't want to invite anyone over and get them all sick too. But that's ok, Russell had a good Birthday anyway :)

I didn't get any pictures of Russell opening his presents because his sisters have a horrible habit of taking over his parties!! They "help" him unwrap everything and then they don't even give him a chance to look at it before they push it aside and move on to the next gift!

Nana and Papa bought him a cool truck, with a really annoying horn that Russell is addicted to! lol

Russell always makes a motor sound when he is playing with cars or trucks, its so cute!

We thought it was really cute when he got out his tools and started fixing his truck...

He actually got off and started fixing the tires with his hammer...Haha...And he didn't even cuss while fixing it, which makes me wonder who's kid this is anyway??? lol

His Aunty Keely made him the coolest little train table!

He loves it! Notice he is doing his motor sound again!

And then there was cake...

Russell is never really sure about his cakes...He always looks around to see what others reactions are.

Then he stares at, and pokes his cake for a bit...

Then he tries it out...

And then he really gets down to business!

Russell ate the most cake out of anyone! lol

I took this picture just as Russell was signing more..Haha

Then it was bath time...And right after his bath he went straight for his train table!

Happy second Birthday Russell!!

You have blessed us with so many things and have added so much joy and happiness to our home!

We Love You!

Any Advice?

I know I have complained about this before, but I really, really need some advice on Russell's teeth grinding.

I took a short video last night while Russell was watching t.v. Listen carefully to the sound of him grinding his teeth. He seriously does it ALL day long.

And I DO mean ALL DAY LONG!

I can't take it anymore!!!



He does it constantly! And it has gotten so bad that he has actually managed to push one of his front teeth back a bit. So not only is it the worst sound in the world, but it is damaging his teeth!

We have tried different things to get him to stop.

When we notice him do it we try to redirect his attention to something else. We have tried giving him a vibrating teething ring to chew on...We have tried tapping his mouth and telling him no when he does it...When we do that, it actually makes him do it more and harder, so telling him no or grabbing his jaw does not work. We have tried ignoring it thinking it would be a passing thing, but its not, its a constant thing!

So does anyone out there have any advice or suggestions??

Dance moves and Girl toys

Haha...Check out Russell's newest dance move! I think its called the Hop and Spin!

Russell LOVES music and he LOVES dancing!

Its so funny to watch him make up new moves! As you can see he is very creative! The kids really get a kick out of watching him. lol

The other day Russell was bored so I tried to find him something new to play with.

Unfortunately for him, he came after three girls so all we have is "girl" toys in this house. But I thought maybe he would like to play with Jordy's old My Little Ponies...Because they are just horses after all right??

That's not tooo girly...

Russell was clearly not impressed!

The expression on his face made me burst out laughing...He had a sort of "eeww, gross" look on his face and he didn't even want to touch them!

 It was like he knew they were "girl" toys! Haha

So he pretty much spent the next few minutes throwing them around the room and abusing them...

And then putting them back into the bucket!

He seemed much happier once he had them all placed safely back inside where they belonged.

He is in desperate need of more "boy" toys! Thank goodness his Birthday is just days away :)

A High

That is what I am on right now...A high.

The funny thing is I have been reluctant to blog about it...I know, weird right?! But I have.

I have never felt this good about EVERY thing since Russell was born.

I have never felt this at peace or this calm.

For the past month now I have been in such a good place that I have been afraid to even write about it, for fear of jinxing it maybe.

But then I figure I blog the hell out of all the lows I feel and all the down times I have had, so why on earth would I not blog about the fact that I am so happy right now?

So here it is...A post on how great I feel!

I think a lot of this feeling of peace and calm has been from watching Russell learn to walk this month.

I cannot even describe how it has made me feel...That in itself has been an incredible high for me.

Its like I have taken a huge sigh of relief.

I go back to the day we found out Russell had Down syndrome.
The day I felt my sons future slip away and in its place a thick dark cloud of uncertainty set in.

The day I wondered who this new little boy of mine was...What would he be capable of?

What was it exactly that was going to make him different?

And then...A question I do remember asking myself...

Would he walk?

Yes. He would walk.

It would take time, lot's of time...And patience, a whole lot of patience.
It would take almost two years of packing this little boy every where we went...Almost an entire year of him just being able to crawl...But yes, he would walk.

See in those early days my heart broke because I thought the little boy I dreamed of and hoped for was gone. I didn't know anything about Down syndrome...And I was deeply hurt at the thought of Russell not doing "typical" little boy things.

Like playing with cars.

But here he is today, so very typical and so very "all boy" that I don't even know what I was worried about.

If only I could have had this glimpse into the future...I would not have shed a single tear.

But that's the thing isn't it. There never really is a glimpse into the future.

And so you find you have to blindly stumble your way along down the path.

You have uneasy ground to tread, a road to travel that you cannot always see as clearly as you would like.

Sometimes you are scared and want to stop right where you are and not budge an inch.

But you cant. You can't stop.

All you can do is keep going forward.

And then one day, just like that...You make it to where you are.

And where I am right now feels so good.

I remember those first few days laying on my hospital bed wishing I could just skip over the next two years.

I wanted to fast forward into the future just to see what it would hold, what it would be like.

I remember the date in my head being that specific two years.

I told myself in two years time I would not feel this pain anymore.

That perhaps, in two years, I would be ok.

And I am.

Tomorrow it will be exactly one week until Russell's second Birthday.

So I even beat my date by an entire month!

And I am ok. I am better than ok.

The pain I felt in the beginning is no longer holding me prisoner.

The fear I felt in the first year of Russell's life...The always waiting for something else to go wrong...The getting use to appointments and therapies and blood work...The beating myself up over if I was doing enough for Russell and if I was doing everything right.

The easing my way into my new role as a Mother of a child with Special Needs.

The being able to let go and walk away from comments, stares, and ignorance that some people throw our way...The realization that there will forever, no matter how hard I advocate or teach, there will just always be people in this world who do not see the beauty that is my son.

People who will not see Russell for Russell.

People who will see Down syndrome and stop there...Never going deeper...Never seeing anything more...Never seeing the true light that shines inside him, his immeasurable worth.

And I have learned to live with that. To let that go.

To allow that to be ok, because although I will never, ever stop advocating...

I know I cannot change everyone.

And anyone who misses out on someone as special as my boy...Truly misses out on one of life's greatest miracles.

 And it is a shame. But its not my shame. It is theirs.

This time last year I was feeling very anxious and unsettled.
I was a little sad as Russell's Birthday approached.

I think I wrote many posts on it.

Russell's Birthday was more like reliving a traumatizing event in my life rather than celebrating his Birth.

That entire month brought up so many feelings. So many painful memories. It was very difficult for me.

And I documented that on here. And it helped heal me.

Because this year, one week before Russell's Birthday I feel happy and excited.

I am thinking of what his cake should be and what to buy him.

And that's the whole point right there...This year I am thinking of HIM, not ME.

And I don't feel guilty about what I went through last year. I needed that time to reflect and relieve what was surely the most painful time in my life. I needed last year to put all those emotions to rest.

To close that chapter in our lives...To let it all go.

And I made sure I was very thourghol. I wrote down every single thing I felt.

And it has freed me.

This year I feel fantastic.
I am ready to celebrate my boy and the day he came into this world and entered our lives.

Like I said, I have been hesitant to post about how great I feel...Just for fear that it wont last.

But you know what...I think it will. I think I'm finally there.
Because this is a feeling I have not yet had since Russell's Birth. It's a calm I cannot explain.

Will there be days ahead where I have a "down" moment when speaking of Russell, you bet! But those down moments will not be any different than the ones I have with my other children.

I think those moments have most certainly changed for me. I have felt a shift inside myself this past month.
I feel I have moved past so much...I have grown.

And you know what...I think I can actually, honestly, truly, say it now...So I am going to!

I have caught my plane home. I have left Holland.

Coming home from Holland

I have been in Holland for almost two years now...Some days it feels like I have been here my whole life, others it feels like I have just arrived.

I will never forget the day I landed. The fear. The sadness.

I didn't want to be in Holland. That wasn't suppose to be where we were going to end up.

In fact, in all honesty, Holland was probably the one place I never wanted to go...Or so I thought.

I didn't feel strong enough to adapt to living in Holland. I didn't want to learn a new language. I didn't want to buy new guide books or meet new people.

I didn't think I had it in me to learn to live there.

I was wrong.

But learning to be ok with being in Holland has taken time.

At first I didn't even want to step foot off the plane...The fear inside me was that strong.

I did get off that plane though...That first night I walked down that hall to see my son...I got off that plane.

And standing there looking down at him in his bassinet, hooked up to oxygen and wires...I knew I was in Holland for a reason...And there was no doubt that I loved that reason.

I cried many tears wondering what exactly Holland was going to be like, how it would feel living there...Would I ever get use to the differences between Holland and Home?

Little did I know that Holland would soon feel more like home than I ever imagined possible.

I slowly started to learn the language.

I had to...And not only that, I wanted to.

It has not been an easy language to master and I find even others who know the language interpret it differently than I do.
It can be tough some days to speak it fluently. Its hard some days trying to get people who have never been to Holland to understand you...And most days you find yourself not only learning this new language, but trying to teach it to those around you as well...Because you want everyone to understand it and speak it.

I have bought new guide books.

I didn't want to have to do that. But we needed to, we needed help navigating our way through this new place.
And they have helped.

Some days I don't want to look through these books though. Some days I pack them up and just leave them on a shelf cause I don't feel like going through them or reading them...Some days I want to just try walking the path on my own...Find my own way. Trust my own instincts.

 But it doesn't mean I forget they are there. It doesn't mean I don't know that at times we do need them.

Holland is a slower pace.

And that has taken me time to get use to. I am not always happy about the pace.
Sometimes the slower pace scares me because I wonder if we will ever get to where we need to be or if I am steering us in the wrong direction.
Some days the slower pace makes me a little nervous and sad.

But even though every now and then I feel that way...Doesn't mean I do not acknowledge the sheer beauty of Holland and the time I have had to really slow down and enjoy all the lovely things about it.

Feeling the sting of the slower pace every now and then in no way prevents us from moving forward.

I have never been in denial about the slower pace or the reasons for it...Accepting it is one thing, liking it is another. Those moments of sadness don't mean I have not embraced and accepted everything I need to.
It has never held us back. Ever.

It just means not every day is about Windmills and Tulips.

I have met new people.

And I generally don't like meeting new people. I never have been a "people" person.

But I have met people here, in Holland, that I genuinely love. That I have learned from. That I look up to and admire. People who have lifted me up when I needed it...People who have never judged how slow my progress through Holland has been at times.

They have just been there.

And sometimes just a simple "I know how you feel" means more than all the advice and pep talks and inspirational thoughts one can give.

I have seen the most wonderful, beautiful things in Holland.
Things I never knew existed.

These two years have been a tremendous learning experience.
The journey itself has not always been easy or smooth.

But it has been so worth it. I have never been happier.

I am not quite home from Holland...Yet...

But I have bought my plane ticket...And somewhere in the near future, I will be on that flight home.

Expecting, NOT accepting!

The other day I heard of an argument a parent of a small child with Down syndrome got into with someone else. It was about education.

It was a person from a Government agency of some sort, or maybe a banker? I'm not sure...Anyway, this person was telling the parent of the child with Down syndrome to start an education fund for the child to go to college, and anything they put in the fund the Government would match.

This parent simply said...

"We will not be needing that because our child has Down syndrome, our child wont need a college fund."

A million thoughts ran through my mind as I thought of this situation.

At first I was just plain angry. I took it as a personal insult to my own son, because he has Down syndrome also! And I'll be damned if any one dares to tell him he cant, or is not capable of going to college!

I was angry because this parent just reinforced an ugly stereo type of our children.

That they are incapable of learning. That they do not need the same opportunities...That they will not excel as other children do, so why bother?

And that to me is insulting to all those parents who came before us.

Parents who fought hard for inclusion so that our children could sit in the same class and go to the same schools as other kids. Parents who fought hard for "More Alike Than Different"

People these days seem so surprised that our kids are so intelligent...Or that they "appear to understand" when spoken to. Or that almost all kids with Ds seem to be a "mild" case.

Down syndrome is not the thing that has changed over the past 50 years.

Down syndrome remains what it has always been.

An extra chromosome.

What has changed is societies views on Down syndrome and what it really is.

What has changed is parents treating their child with Down syndrome EXACTLY like their other children.

Whats changed is Early Intervention and Inclusion.

That's it.

Down syndrome is the same as it was when the very first person was born with it.

Anyway, so at first I was just angry with this whole situation. But then I thought back to how I felt those first few months. Those first months where I knew nothing. Where I feared everything.

Where I cried over a future lost.

 I remember in those early months researching Down syndrome, and not the medical facts.

I started researching Down syndrome in real life.

Through blogs. Through stories, through others experiences.

I will never forget the day I sat at the computer and I came across a blog where a five year old girl with Down syndrome was reading a book out loud.

I burst into tears. I sobbed. I cried and cried.
I remember whispering the words aloud...
"They can read, they can read"
I watched that video a million times over.

I cried because Russell was only a few months old and I had no idea that a child with Down syndrome could read!
And that in itself is just plain sad.
But like I said, in the beginning I knew nothing. So I expected nothing.

It was then I found hope.

It was then I realized that Russell was only going to be held back by the limitations we ourselves put on him.

And then I came across this post on Lily's blog...

Expect, DON'T accept

Near the end of the post she included a Keynote address given by a Father of a 19 year old daughter who has Down syndrome. He writes about the struggles he and his wife faced raising their daughter. How they fought against teachers telling them their daughter could not learn.
How they EXPECTED from her...And so she DID excel.

Its really beautiful and if you have time to read it, please do!

I have never forgotten it.

Because that is how I am choosing to raise Russell.

Expect, Don't accept.

Because Russell is worth that!

He is worth Everything!


And we expect great things from this boy!

Developmental Assesment

So the dreaded Developmental "Assessment" took place today.

I hate these things. I really do. I am not sure what purpose it serves at all. I mean I know Russell is delayed in areas...I get that...Do I need it charted out and written down for me. No.

I just hate comparing him to the "typical"...It doesn't feel right. He is Russell, he functions at Russell level, so why do we need to compare him at all?

And also, I am pretty sure Russell sabotages these Assessments!

 I swear its the only hour or two I really need him to show off everything he can do...But he never does.

The stinker!

But maybe its his way of showing me that no matter what gets written down on those papers, or what number they fill him in under...Its not WHO he is...And its not ALL he can do.

Maybe its just his way of saying...
"Don't worry about the paper work Mom, cause I am smart as hell and you know it!"

I love my boy.

Honestly I guess today's Assessment hurt a little because I wasn't expecting him to place so low in some of the areas that he did.

First was Adaptive. Russell is in the 13-15 month range.

Uggg. I'm sorry. I know these numbers should not matter, but it does sting my heart a tiny bit to see my almost 2 year old charted at a 13 month old level.

But like I said Russell didn't do everything he normally does.
When she showed him a book she could ask him to point things out in the pictures and he would! Which was great. Proving he hears and understands what is being said to him.

But he wouldn't turn the pages of the book!! I couldn't believe it!! He does that ALL the time! He loves books...Sabotage!

When asked to point to body parts he refused!!
I video taped him doing that MONTHS ago! He does hair, eyes, nose, fat tummy...Argh...But today he wouldn't. And I was told this is one of the "milestone" things she can not give him credit for knowing how to do unless she sees it herself.

Boo! Sabotage!

And then she wanted Russell to throw a ball. HA! This kid has superb throwing skills...Just not today. When she passed him the ball he took it and crawled over to his toy and got two more balls out.

He likes to have lots, not just one :)

Oh AND get this...He would NOT stack a block!!!!
If that does not scream sabotage I don't know what does!!
 I practiced this for months with Russell just so he would pass this stupid test!! Haha

All I could do was look at Russell and think, "You little punk, what are you up to! Show her your skills!!"

Anyway...Sabotage, I'm sure of it!

He even has the face of a saboteur!

 

Fine motor skills Russell is 12-15 months! WTH!

TWELVE months!! Come on! I think that's not accurate at all. But who am I to say.

Gross Motor... 12-13 months.

Even though he can do this....

I'm starting to get my hopes up with this whole walking thing!!
What do you guys think...By Christmas maybe he will be walking full time? Who knows? Maybe!
Its so exciting and I never get tired of watching him do it or cheering him on!

So even though those areas in Russell's development scored on the lower end...He did very well with his Speech which has him at a solid 18 month level!! Yaay!
Speech has always been his strong area...That and Personal Social which he was given a 15-18 month level!

So screw the fact that he cant put a peg into a hole or that he isn't walking yet...The kid is doing great with talking and understanding! And that is so much more of a relief to me.

And well, that was the Assessment.

Sure some things hurt my heart the tinniest bit...But I know how well Russell is doing.
 The kid is awesome and super smart.
And pretty darn cute!

And we love him to pieces :)

Still practicing

Last night Russell was taking so many steps...He practiced over and over again between his sisters.

And you know, that thrilling, over the top excited feeling I get when I see his tiny feet taking steps...

It never gets old. Each time feels like the first time.

Each time we cheer louder, clap harder, and smile bigger.

One day my boy is going to walk.

And I can wait until that one day happens.

I don't feel like I am in a rush anymore to have him walking...I don't feel sad that his second Birthday is fast approaching and he is not running around yet.

Because he will.

And when he does our lives are going to change!!

This boy is going to be unstoppable!

Russell was taking as many as five steps in a row last night...I tried to get a video of him in action...But honest to God, once Russell sees the camera come out, he will not perform! Its like it suddenly hits him that we want him to do something and so being the stubborn little fellow that he is, he will refuse to do it!

I did get a short clip of him walking to Neleah. I love how he gives hugs now...He is the sweetest boy!

Last month I really struggled with the fact that Russell was not yet walking. Last month it hurt and made me sad. Last month I felt that panicky feeling when I thought of him turning two and he was not going to be toddling around.

This month I just feel so different.

I feel so much more at peace...So much more patient.

Russell is trying his hardest...Russell is practicing taking steps.

Why on earth should I rush him?!

Right now I am just excited at the thought of "one day" being soon.

Russell will walk...One day.

And until then we love the heck out of this little guy...

And we wait :)