21 Months

Yesterday, Russell turned 21 months old.

Its hard to believe that much time has gone by.

It seems like just yesterday I was looking down on him with my heart aching.

All I could feel was fear and sadness...

I didn't know what to expect.

I grieved for the little boy I thought I had lost...The normal I thought was gone.

As time went by my heart healed...That ache went away.

The fear lessened...

 And I found peace.

I realized Russell was exactly the boy I had wanted...That our normal was still here.

Watching Russell grow and learn has brought me greater joy than I ever imagined.

There is not a single day that goes by where I am  not thankful to have him as my own.

Happy 21 months Russell.

You are a blessing I could not live without.

I love you.

When it's said in a whisper

When someone one whispers something to you instead of just saying it out loud, in a plain normal voice...

How does it make you feel?

Does it make you feel that what they are talking about is some sort of secret, something that shouldn't be mentioned or talked about...Something you wouldn't want others to hear?

If some one came up to you to talk about your child and only did so in a soft whisper...

How would it make you feel?

Today in the store I saw an older lady staring at Russell...She smiled and waved...Then came walking up to us...She leaned over and in the quietest, hushed, voice, said...

"I have a sister like that"

To which I responded quickly with...

 "Oh, you mean with Down syndrome?"

She kind of looked shocked that I said "it" out loud...But I wanted her to know she didn't need to whisper about Russell or Ds...And that she didn't have to say "like that" she could just say...

 "with Down syndrome."

Now I get that she is from the older generation, I understand they grew up in different times where different things were acceptable and whatever...And I didn't take offence to what she said because I understood all that...

But it did hurt.

It hurt because I don't want people to whisper about my child as though he is some sort of dirty secret...Something to feel shamed about when speaking of.

She went on to say that her sister was 59, almost 60!

Instantly my mind raced back to sitting in a room being told the life expectancy of my son was about 50...

That was one of the most painful things for me to hear back then...I didn't want to hear there was a life expectancy for Russell. I couldn't bare the thought of it.

So actually when this woman told me her sister was almost sixty I was happy. My heart rejoiced a little in that piece of information.

Then she added...

"Back then though, children like that were.....You know.....
Hidden away."

Yes, I did know that.

It turns my stomach just thinking about it.

As a Mother of a child with Down syndrome I cannot even imagine feeling the need to hide my child away.

It is hard to know that people living today, like this older woman, remember a time when children like mine were not seen, not valued, not loved or accepted...

They were something to be embarrassed about, to feel ashamed about...

To be hidden away...

Its hurtful to know that society did not value people with Down syndrome at all...It's sad.

This lady smiled and said goodbye to Russell and walked away.

Brad came up to us and asked what she had said..I told him she was just telling me she had a sister with Down syndrome...

He looked surprised and said "Oh, she could tell?"

It still shocks Brad a little that people can tell Russell has Down syndrome...I guess at times it surprises me too...All we see is our handsome little boy, Russell...Not so much the Down syndrome.

I have noticed in the past month or two I have gotten use to many things when we go out. I am use to the stares now...They don't hurt me as much as they once did.

The other day I walked by two young Moms pushing a stroller and they both turned back to stare at Russell and then leaned over and started whispering to each other...It stung for a moment...But I pushed past it...Because what I notice more than anything is people ADORE Russell...People feel drawn to Russell...People want to smile at Russell and wave at him and come up and say hello to him...

Because Russell is a very special spirit...Anyone seeing him can see that...Feel it.

What I need to remind myself at times is...The people who have a smile and kind word for Russell...The people who accept him and see his worth...Are the people who should matter to me.

The ones who have nothing to do but stare and whisper...They don't mean anything to me...Or to Russell.

A Doctors visit and a hair cut

Yesterday Russell went to see his Pediatrician in Kamloops. This is the Doctor who diagnosed Russell at birth, and who we see once every six months to redo his blood work and an overall health and development evaluation.

(Russell's blood work came back ok. His red blood cells are enlarged, but the same size as last time. And the count was good...So no worries this time around!)

This Doctor LOVES Russell! She is always so happy to see him and thrilled with how great he is doing. She always tells me how she is going to brag to the NICU Nurses that she got to see Russell that day, and how they are all going to be jealous.

I love that she remembers Russell, remembers his face, his story...

That to her he was not just another patient, he was Russell!

I know some of Russell's Nurses feel this way too. They have been watching him grow and develop on here and they are some of his biggest fans, always cheering him on! I love it.

Nothing makes me happier than knowing Russell has touched peoples lives in some small way.

So our appointment went great. Russell is doing awesome! She is very pleased with everything.

We are getting set up for another eye exam, and hearing test. She can only see one ear tube in his ears. If he passes the hearing test though we will just leave them out and not redo the surgery.

We don't have to do anymore blood tests until February...Which is good!

The last blood tests we did, the Nurses could not find a vein in either of Russell's arms to get blood from...And after much digging around (Russell didn't even cry)...They finally had to cut his finger and squeeze blood into the vile that way! Ugggg...Not easy to watch your baby go through!

Seeing Russell's Doctor always makes me flash back to that first morning after his birth.

The sound of her voice...That soft South African accent...The way she examines him, slowly, carefully, very thoroughly...

And as she checked Russell's tone I flashed back to the very moment where I knew something was wrong with my baby...

As she gently pulled Russell up by his arms seeing his head flop back and hang there...My heart sinking in that very moment...Watching her slowly turn to me, seeing the sad look in her eyes, knowing she had something to tell me that was about to change my world forever...sigh...

I can feel it all over again like it was yesterday.

But as she did this exam again with Russell this time around, he held his head strong and sturdy. He is a solid little boy now...Not the floppy, still, infant he was almost two years ago...

He is strong and healthy. His life is good. Nothing could be better.

We have much to be thankful for.

Oh, and then I got her to check Russell's eye that has been pink the past few days...You can can see the one eye looks pretty red...

I didn't think it was pink eye because it wasn't bothering him, not itchy, no discharge...So she takes a look at it and tells me its not pink eye...But she thinks its because his hair is getting into his eyes and irritating it!!

Damn it...This is just what Brad told me it was the night before...I knew he was going to be so proud he was right for once...And nothing is more annoying than Brad walking around the house gloating in his genius!

So I thought ok, he was right...But I will fix this problem MY way! lol...Cause I knew my way would piss Brad off...

Nothing wrong with a boy in a pony tail! haha

Well, Russell wasn't to impressed at first either...

But once he realized it kept his hair out of his eyes, he came around to the idea...

He's our little sumo wrestler!

Actually, after a while I thought he started looking to much like a little girl...A rather pretty girl if I do say so myself!

And even that freaked ME out! So I walked him across the field to Nana's and we got his hair cut!

And that's that.

Lately I have been having some big time issue with Russell!! Just typical toddler issues, but I am afraid he is turning into a brat! Sigh...I will leave all that to another post though...

Russell masters the Blocks!

Well, he has finally done it! Russell has achieved another milestone...

He has FINALLY learned to stack blocks!!

Why is this a big deal you ask?? Beats the hell out of me!!

But for some reason it is a big milestone in a child's development. I never knew this until I had Russell. I had no idea stacking blocks meant anything! I don't even recall if or when my other children learned to stack. Heck, I'm not even to sure we had blocks in the house before Russell!

But yes, apparently it is an important milestone. Every time Russell is evaluated or assessed we are asked if he can stack blocks...And believe it or not, if Russell can't do something on the check list during his evaluation it can actually set him back a couple months in where they will chart his development.

Say he can do eight out of the ten things they look for...If he cant do those two things instead of being placed at a 18 month level, they will put him at a 12 month level. I don't like this.

Also some things the workers will not give him credit for UNLESS they themselves see him do it...So if Russell decides not to perform that day, he will be charted as functioning at a lower level.

That's why I video tape everything.

So hurray for yet another thing to check off our developmental list!!

This is a big one for us because Russell has always had a love hate relationship with these blocks...He loved to throw them...Hated to stack them.

He use to cry when we would practice stacking...

Or he would turn away from me...

He hated those blocks! And so did I...

But now he is getting the hang of it...He knows if he stacks them there is a whole lot of cheering and clapping...

And Russell is all about people celebrating him and how wonderful he is!

And yes, he needs a haircut soon!

Something else Russell has mastered lately...His fear of horses!

He is no longer scared to reach out and touch them!

This little boy has come so far in just this past week! Everyday is exciting and new!

I am loving watching him turn from a baby into a toddler!!

Getting my hopes up!

Russell has been doing so awesome this past week with standing! It is getting me pretty excited...

I am starting to think that there is a possibility that maybe, just maybe...He may be walking on his second birthday!!! Ok...Maybe not "full time" walking...But damn near close!

He is getting so good with his balance...In this video you can see him continuously steadying himself.

I am really, REALLY, proud of him!

The thing is Russell just started doing this standing stuff THIS week!

What I have learned from Russell is he only starts doing stuff when he is good and ready.

I remember back to him being 14 months old and not having the desire to MOVE anywhere...He just showed no interest, he had no motivation...And I was worried...I worried about when and if he would ever crawl...And then one day,out of no where, he started doing it!

And once he started there was no looking back!!

So now with him wanting to stand and balance, I am thinking that the day he attempts those first steps might not be to far off....Look how good he does!

And he is always so darn proud of himself!

And it was just the other day I posted how I wanted for him to start trying to stand by himself...

Look at this video!!

Sure he is doing it on the couch where he feels safe and the landing will be soft...But he IS doing it!! Getting himself up and standing! Now once he feels safe and more sure of himself he will start doing it on the floor!

Everything seems to be clicking along this week. Like I have said before Russell seems to go in spurts...

For months at a time it seems like he will just be doing the same ol stuff, nothing new...

Then one day out of no where he will start attempting all kinds of new things!

I love it!

Ok, so this video is for my Mom because we were just talking about self feeding the other day...

I am ashamed to admit that I have babied Russell far to much. I still feed him myself. I have never really given him the chance to self feed...I know, I know, I am a horrible Mother...sigh...

Russell is good with fine motor, he can pick up pieces of food off his tray and feed himself no problem...He is good with his little pincher grasp...So if that counts as self feeding than yes, he can do that..

But I have never given him control of the spoon...I have no reason as to why, I just haven't.

Well last night I was cooking supper and Amy was feeding Russell and I looked over and there he was feeding himself!!

(Of course I ran and grabbed the camera!)

 I didn't realize he could do it! I felt bad that I had never really given him the chance...

And it took his older sister sitting beside him letting him do it himself for me to realize he was ready to self feed.

So there you go Mom...We have started self feeding!

You know, I have to say...The diagnoses of Down syndrome that I thought was the most horrible, tragic, mournful thing in the world...Something I thought that would be nothing but depressing for the rest of my life...

Has turned out to be the very, very best thing in this world!

Nothing is more exciting and awesome, and amazing as watching Russell's development...

Seeing him turn into a little boy...Witnessing all those small steps turning in to huge milestones.

Nothing makes me happier.

Russell has Down syndrome, and it took nothing away from our lives, from our happiness...

That little extra chromosome has only added...Extra love, Extra joy, and Extra excitement.

I never would have thought that there would be a day where I would feel so very blessed as to experience the joy of raising a little boy with Down syndrome.

Its an experience I wouldn't trade for anything in this world!

Wordless Wednesday

Exciting Stuff!

Russell has been slowly plugging along learning new stuff.

Sometimes it feels like we go months kind of stuck in a lull, where he does the things he can, but never attempts anything new...And that's where patience has to come in...That's when I need to remind myself that he WILL do things...But in his own time.

And then there are days where you forget all the tiny, tiny, steps it has taken for a milestone to happen...And all you see is the "BIG" accomplishment...

This morning the girls came running in to tell me Russell had just learned to do this...

He can CLIMB!!!!

Now I know this may seem like such a NON-big deal to most...Oh, but to us...To us, this is HUGE!!

And just to see how proud Russell was of himself made me want to cry!!

I showed Brad the video when he came home for lunch...And Brads reaction to Russell and his development is always so awesome to see. Brad always gets super excited and just beams with pride...Because he knows how hard Russell works for these things.

And later today as we were saying goodbye to my Grandma and cousin who were up visiting...Russell decided it was time to show off his stair climbing skills!!!

Now his worker had dropped off a miniature stair thing a few months back...It had like one step and a platform. Russell could get up on top of that. But when we would take him to my sisters house to climb stairs he didn't know what to do...He would sit there at the bottom just looking up...Until today!!

Today he climbed these stairs like a pro...Over and over again!

Very exciting!

Russell and his Great Grandma...

Another cute thing Russell has been doing over the past few days, is figuring out what he can get from who!

We have noticed whenever Russell is with his Nana, or while sitting with Great Grandma, he knows he can get a treat from them! He will sign food over and over and say "num num" to them...That's what we call food.

Its so cute to see!

Russell has been able to sign and say this for a long time now, but it wasn't until recently he would say it FIRST...Like, not only repeating it to us, but actually asking! And he does this with people he knows darn well wont tell him no! haha

And last but not least we have been practicing standing and balancing with Russell.

Russell will stand against the couch or coffee table and then let go and stand all by himself for a few seconds...It makes him nervous and he does his "whoo whoo" face.

But he is getting better and better each day!

Today he would stand alone for at least 20 seconds unassisted...He would even clap his hands knowing he was doing something great, and not lose his balance!

(The pics are all in black and white because Jordy took them and they all came out over exposed...So the only way to salvage them was to put them in black and white)

So she took this picture, which is really cute...But I told her we have to be able to see his feet!

So she took this one just as he was ready to topple over...

The thing I love about Russell, is he takes great pride in the things he learns...He gets just as excited as we do! He knows darn well he worked hard for his accomplishments so he celebrates them right along with us.

I love seeing the smile on his face when he learns something new!

And I know 20 seconds doesn't sound like a long time...But count to 20 slowly and tell me that's NOT a big deal for a baby learning to stand!

In this one he is clapping his hands! I was so surprised he kept his balance!

Now we need to work on him being able to go from this position to standing all by himself...

Russell has also been practicing walking...Definitely not close to walking unassisted, but doing better by holding our hands...

AND...He is getting good at walking with us just holding onto ONE hand!

Not bad eh!

I am SO proud of Russell! Today was just really exciting. He did so many new things...So many things we have been waiting for...And the wait, well that just makes it all the more thrilling when it does happen!

The wait, the effort, the time we spend dreaming of the moment he learns this or that...Makes that moment all the more special, all the more sweeter...And its savored by every single one of us.

Russell I love you...

And I couldn't possibly be any prouder of you!!

Zane the Pain and Russ Bus

My Nephew, Zane the Pain...

I know, adorable right? How could anything so cute be a pain? Ha...Its possible, trust me!

But we love him anyway :)

So My sister and I had big plans for Zane and Russell...They were suppose to be the best of friends...Love each other, want to play together, grow up being best buds...

Well that's not happening!

These two seem to despise each other!! Haha...

Russell is pretty jealous. If I am holding Zane he will hover around my legs...The other day he actually BIT me! Little stinker! Good thing he is always going to be the baby of this family! I don't think a younger sibling would survive long around Russell!

Russell constantly tries to hide Zane...You know, by throwing blankets over his face, or burying him beneath clothes...He has grabbed at his face occasionally...sigh...He is just not the best of cousins at this point.

And Zane also shows his disapproval to being around Russell...Honest to God, the very sound of Russell's voice makes Zane burst into tears!!! Its hilarious!!! Anytime Zane hears Russell he looks petrified!

We took these pictures this morning. Zane was sitting all happy in his seat and then Russell started talking and he burst into tears!! haha

Poor Russell didn't understand what he had done...

And it hurt his feelings...When Russell gets sad or scared he always puts his hand up to his face...

And to further prove this whole "the sound of Russell's voice is horrifying" Check out this video!! Haha...Watch how wide Zane's eyes get when he hears Russ making noise!

Too funny!!

Well, I suppose all we can do is hope that one day in the future they become friends :)

On a side note...Please stop by this site and show your support for Russell and others with Disabilities.

Everyone can make a small difference! Thanks :)