Our neighborhood school...

Today was one of those days as a parent of a child with special needs that I did not enjoy.  And it had nothing to do with Braden himself.  In fact, this morning he was full of charm and fun which was exactly what his mama needed as I went off to his school's IEP meeting. 

I don't care who you are - IEP meetings are not fun.  In no way, shape or form.  Focusing for hours on your child's areas of concern and intensely debating placement location is not my idea of an enjoyable morning!  It's all so personal and emotional and draining. But after all is said and done - Braden will be going to his neighborhood school and mainstreamed with his twin in 3rd grade. 

And really all I can do is thank the parents that have gone on ahead of me and paved the way for these opportunities for my little boy.  I thank the parents who refused to institutionalize their babies born with that extra 21st chromosome - who said "NO" when doctors and nurses pressured them to make the "right" decision.  They went against the grain, took their babies home, loved them and truly realized their potential.  I thank the parents who demanded that these children with Down syndrome be given an education. I thank the parents who demanded legislation be enacted to entitle these children to a free and appropriate education in their least restrictive enviroment.  Because of their efforts, their advocacy, their sheer determination - my son has options and choices and opportunities!

When Braden started school, his very first day of Kindergarten,  I wrote something that certainly still rings true today...

School

The first day of Kindergarten. A day that I had often thought of and wondered about. Both of them, together, with their backpacks and new school clothes ready to meet the bus. I know all of us mommies shed a tear as we send our babies off that very first day on the big yellow bus to school. But there was more in that tear for me this year than ever before. One of those little boys had almost not made it to this day.

One of those little boys had at once struggled for every breath, for every beat of his heart. And on those days my only prayer was that he would live. Kindergarten was saved for dreams – not prayers.

My twins, together.  Most parents get to assume their children will go to the same school.  Have the same teachers. Play on the same playground. In our reality, no promises were made. For some still see it as enough that he even gets to go to school. And so, as he climbs those steps up into the bus, he helps forge the way into his neighborhood school, into a regular kindergarten classroom.

On the playground, he is swinging on the very swing his older brother and sister have used.

He has his picture taken in front of the very same school yard sign that is in their scrapbooks.

He has his chair at the same table, in the same class as twenty other children on their first day of school. And this is the way it happens. One chair, one swing, one bus, one community at a time. He belongs!

So as my tears fall on the first morning of Kindergarten, there is much more than sadness over my babies growing up. Most importantly there is an overwhelming sense of pride at this little boy with such a tenacious spirit. Every challenge and every joy has shaped him into the amazing, awe inspiring little fellow that he is. And on this morning, I thank God for not only answering my prayers but for listening to my dreams.

"Undo it, take it back, make every day the previous one until I am returned to the day before the one that made you gone. Or set me on an airplane traveling west, crossing the date line again and again, losing this day, then that, until the day of loss still lies ahead, and you are here instead of sorrow." -Nessa Rapoport

My sweet angel baby...

Has it really been 2 years ago this very day, March 3rd,

since I last lovingly cradled my darling, Scarlett Victoria? 

Many memories from her delivery are so vivid,
so clear in my mind. 

Of all the children, her delivery was the longest and perhaps the most painful - physically and certainly emotionally. 
Even though she was tiny, she was very difficult to deliver. 

It seems somehow fitting that the physical pain matched my heartache. 

But what stands out most in my mind are the hours after delivery that we spent with her.  Holding her.  Loving her.  Trying to etch every aspect of her beauty in my mind - to last me my lifetime.  She was bathed, and dressed. She was weighed and measured and swaddled.  Footprints and photographs were taken.  She was prayed over.  And then we were left alone to welcome our child to our family.  Hours we were given to adore and cherish this tiny babe.  To wonder at her tiny nails.  To imagine what a sundress would have looked like over her delicate shoulder.  Sweet toes that never got to run barefoot through the grass.  So perfectly formed with even a slight smile on her lips.  I am thankful you are mine, baby girl, because each life is indeed a gift - no matter how short, no matter how fragile.  Our little Scarlett Victoria was beautiful, treasured and will forever be remembered and missed by her family.

And so even though my heart hurts every day without you

and even more so on this day -
I refuse to remember you only with sadness or pain. 

I am determined to celebrate your life! 

So Greyson and I are off to buy a cake and maybe even some balloons. 

Throughout my pregnancy you brought us happiness

 and that is what we will be remembering and celebrating

this afternoon on your second blessed angel-versary. 

Because every life, no matter how short, is a gift...

Mom, Can I have a baby with Down syndrome?

Brothers and sisters of a sibling with Down syndrome have the most real and up close look at what it means for another to have Down syndrome. 

They don't have any preconcieved notions, ideas or expectations (or lack of expectations as well!). 

They just simply accept wholeheartedly their brother or sister. 

That doesn't mean they LIKE  every.   single.   thing.   that Braden does.  Allie sure gets hacked when Braden empties her bookshelf of books and leaves them in a heap after he has quickly paged through them.  That usually results in a roll of the eyes as she rearranges her shelf back to how she likes it.  Grant gets irritated in the back seat when Brady pokes his knee in that notorious game of "he's touching me" that I remember playing with my brothers!  That usually results in us making sure there is an open seat between the twins on long car rides.  Cameron sure does not appreciate when Braden kidnaps one of his stuffed animals and takes him for a swim in the fish tank.  That usually results in my laundry being bumpy and lumpy as I freshen up said kidnapped stuffed friend.  And Greyson doesn't like when Braden snitches one of his puffs off his highchair.  That usually results in a highpitched protest!

But...and this has got to be the biggest "but" ever...

Greyson loves when Braden shares his posse of animals with him.  Braden can entertain Greyson forever with his skillfull tossing of stuffed creatures.  He loves when Braden sings, complete with hand motions, the Itsy Bitsy Spider to him.   He loves that Braden will gather the wayward balls that go in the ball popper for him - over and over and over - long after the rest of us have tired of that stinkin ball popper!

Grant loves to play "bert tag" with Brady.  Braden is dead-on-accurate when throwing his stuffed Bert doll and so those two have made a game of it.  With Grant trying his absolute hardest, he is never quick enough to dodge that flying Bert doll.  Just when you think Grant has zigged out of the way Bert comes from nowhere and tags him squarely in the chest.  They will play that game for hours.  Both dying of hysterics.  Tickling and tackling and wrestling also often ensue between these two.  

Cameron loves to give Braden piggy back rides all over this house.  How someone hasn't gotten hurt yet is beyond me!  They also jump forever on the trampoline together, take turns jumping off the pool ladder and play for hours in the sandbox together.  These two are also quite the pair if God forbid there is an empty cardboard appliance box in the house!  What's with boys and their clubhouses?!

Allie loves her some Brady love.  Snuggling between those two is a daily occurance.  He just comes right up to her, says "snuggle", and she plops him in her lap for some serious big sister/little brother snuggle time.  In fact at night Brady will sometimes climb out of his bed, venture down the hall, and climb right in with sissy.  She wraps him up in the blankets and snuggles him close til morning.  These two are also our "dancy duo".  They are our only kids with any sense of rhythm.  Seriously.  Most nights you can see these two dancing in the kitchen to whatever "cool" teenage music Allie has playing.  She's always telling him they are gonna be the "first ones in and last ones out the club" when she gets older and can take him dancing. 

But the most telling of the way the kids feel, besides the hugs, besides the kisses, besides the snuggles, besides the games, besides all the dancing, is that both Allie and Cameron have at different times asked me - "When I grow up, can I have a baby with Down syndrome?". 

And I always tell them, "Only if your lucky!"

Frogs, snails and puppy dog tails...

This picture is of Cameron a couple of summers ago.  But you know how sometimes there are certain pictures that just speak to your heart?  These just seem to capture all that is Cameron in them. 

He is totally boy - with all the dirt, bugs, and rough-and-tumble that come with it.  He is an aggressive football player, a hot-shot on his bike and loves making campfires with his dad. 

But there a such a soft side to this boy-all-boy that is his most endearing quality.  He can be so gentle -  just like he is here with this little froggy.  He was so careful and cautious with the frog making sure there would be no long term damage done from their brief encounter. 

But he also carries this gentleness through with his sister and brothers.  He truly dotes on Greyson.  Often first on the scene if he hears the baby crying.  He can also easily get Braden to do things others cannot.  With a hand on Braden's shoulder he often is seen gently guiding Braden on or off the school bus - especially when Braden would rather take a moment to eat some snow or even splash in a puddle!  Cameron is also such an enthusiastic learner - always coming up with crazy inventions or elaborate family games that often go on for weeks (and weeks and weeks).  He has yet to ever get anything but an A on a report card.  He is bright, and friendly and compassionate.  His teacher came up to me recently and said "I just have to tell you - Cameron is everything that is good, and decent and kind.  He knows how to have fun but definately knows when it's time to get back to work.  He loves that baby brother of his - and I have no doubt when he grows up will be a great husband and father!"  I so agree!

Seriously - A gravity defying snowman!

With all this snow we of course had to make a ginormous 8 foot snowman.  That's exactly when having a 6ft-5" husband comes in handy.  You know for getting that way too heavy snowman head up there. 

I'm not sure if it was the asparagus we used for the spiky hair that gave him this super power...

but this snowman was not giving up without a fight...

never really thought that snowmen could be FLEXIBLE...

Did he drop something?!

I think he's leaning into the wind...

This whole process took 4 days.  The kids were jumping out of bed in the mornings to check on him to see if he'd hit the ground yet.  Very entertaining but still a little odd!