Showing posts with label Down Syndrome. Show all posts
Showing posts with label Down Syndrome. Show all posts

Tuesday, December 17, 2013

Some sense of normalcy...






Today's post comes directly after a visit to my local grocery store for a gallon of milk....


You know you are overly emotional when: 


You are standing in the produce aisle and you spy across the way, standing at the deli counter, a man and his girlfriend. From far off, you can tell from behind, that the girlfriend has Down syndrome. He was hugging her around the waist and bossing her around. Ha! The man, having some sort of disability of his own, was also giving the deli guy a hard time - laughing and joking that he was slicing meat to slow and he was gonna tell his boss, etc etc. You are frozen watching this everyday 'normal' life style for them. 

You look like a stalker so you pretend to look at the lettuce.

You gather that the man works at this store and he is there shopping and joking around with the deli guy who appears to be his friend and coworker. His girlfriend pats the man on the butt and you giggle slightly embarrassed that you are still staring. 

You pick up a tomato to still not look like a stalker. 

You see the deli manager come over and the mans girlfriend runs full steam ahead to the manager and embraces her, with what may seem like the biggest hug this side of the planet. 

You feel your eyes well up. 

You hear the man say, 'Hey that's my lady there, easy!' 

The tears get worse and I know I have to move on to another aisle or I may just have picked up every piece of produce in the store. I couldn't help but look back one more time as I wiped a tear away from my eye. A very happy tear.

This is what I wish for my son. Normalcy. 

Two grown adults - shopping, caressing, joking with coworkers.
Yes. That is what I want him to have.
And I will do ALL in my power to make sure he succeeds in this. Because everyone deserves, love, friendship and a sense of pride.

And on a side note, we will now be having salad with our dinner.




Tuesday, October 8, 2013

Down Syndrome Awareness Month 2013










Sunday, August 18, 2013

T -n -A

Dakota had his tonsils and adenoids removed a few weeks ago   

It was a long and difficult recovery. He scared us with his fevers and screams. I wanted it to be over. 

And then...
It was. 

Just like that - day 12 post op. he decided to eat. A half a jar of fill pickles. 

The first real thing he had eaten in 12 days. 

And it was all good from there. 
Amazing. 

He lost a bit of weight but is eating great now so I feel better about it. 

Here are some photos for your pleasure. 


Before surgery tv
Waiting to head back
After he woke up
Headed home
Hurting pretty bad
Day 12 pickles!! 







Happy 8th Birthday!

Friday, July 19, 2013

All the cool kids have it...


So we volunteered at church today.

I packed our lunch as per usual.
We sat in the restaurant area to eat.

There is a sweet older woman cleaning tables who clearly has a disability. She came up to us last friday and asked if Dakota was 7. I said why yes he is. And then she walked away.

 Today she came up and started talking about random stuff. Telling us she found a toe nail in her McDonalds ( while we were eating ew) and how she works very hard at this job and how her mom got it for her by stopping in to see if the church needed help.

She then was watching Dakota very carefully.
She asked me, "Is he retarded too?"
I stopped chewing and froze. I looked at her.
She said, "I'm retarded, disabled. Is he too?"
I was speechless. I froze. I sat there.
She asked again. "Is he?"
I said, Oh Dakota? Oh he has Down syndrome."
She said " Oh thats what I have too"

I honestly couldnt tell she had Ds. I knew it was something, but my Ds radar didnt pick up on it.

I said, "Oh cool! All the cool kids have it."

She snorted, washed the table next to us and walked away. I was sad for her. She thought she was retarded. But how could I argue. How could I explain. I didnt know what to do, I froze.

I waved to her as we left for the day and she waved back and continued cleaning her tables.


Thursday, June 27, 2013

Picture post...



I had some pictures to share....
















Tuesday, May 21, 2013

I Run For...


Recently in one of my many Down syndrome groups someone posted a listing.
It intrigued me...

It said...


Hello everyone, I'm Tim Boyle, Founder and Executive Director of a group called "I Run For..." We pair up runners and other athletes with children and adults with special needs and they do all of their workouts, exercising, and runs in their honor. Right now we have several runners on the waiting list hoping to be paired with someone special. If you are interested please check out the fb page. If you are interested in having your special someone paired up send me a message or comment on this post. Here is the link to the page...
www.facebook.com/groups/irunformichael


I thought, "What a great idea!"

So I joined the page and added Dakota's name to the list. We were paired up with a runner that very night.
I have to say, I had no idea what it was even about, but the thought of someone running for Dakota made my heart smile. Dakota is not a great runner, heck he doesnt even really run at all, he kind of does this weird skipping hopping thing. I know he will someday. And he is still fast, but someone who can run, like really run - run... Like marathons and not casual runs across the block runs was an awesome thought.

Our runner posts his runs and workouts in the group and tags us in them to motivate us to keep trying, and we in turn post things for him, to keep him motivated.

Awesome concept!

I just thought I would share. And if you know anyone who would like to sign up as a runner or as a person who is ran for, then the link is above.




Many blessings!!


Thursday, May 2, 2013

Crying on the Inside...



You know when you are scrolling through your facebook, and you are checking out everything from what people are eating for breakfast to what they think of the government? Well in between those posts was a shared blog post. And I decided to read it...

http://lilasmiraclelife.blogspot.com/2013/05/today-i-cried.html

And it made me cry.

It made me cry because I feel her emotion. I know EXACTLY what she is talking about, exactly how she feels.

I have been on this earth fighting for Dakota for almost 8 years! Battling with ignorance.

Here was my facebook post when I shared:

Oh man! This is tear jerking - comes from that place within myself that I could never utter out loud. Yes I appear strong on the outside, but I am a crying mother on the inside. The ignorance we are teaching our children HAS TO STOP! Come on people - you want us to accept gays, you want us to accept black and white marriages, you want us to accept women voting, you want us to accept a black president - well we have... Why cant we accept these beautiful children - WHO HAVE DONE NOTHING WRONG! Who just sit there and love you! Who just want you to say hi to them when they say hi to you! Who just want to randomly pick you out of a crowd and want a hug? Why? Why is that so damn hard for some people? I just dont get it! And I dont think I EVER will. It just makes no sense. They are not a joke. They are human beings. They have feelings! They dont want you to laugh at them, or make a funny meme on facebook. They just want to be accepted. Are you one of those people? Its not too late to get educated. Let me HELP you! Let DAKOTA help you! I guarantee you will be a changed person after you meet him, or any other child with a disability... 
Steps down off her soap box...
Bows...
Thank you...
Dakota thanks you...

When will it end? It has to end with us parents. Our children learn from us. WE NEED to teach them that different is okay. We cant leave it to them to figure out. We have to... teach... them...

A lot of people think its up to us special needs parents to educate. But its not. Dont you think we deal with enough? Do you even realize how much we go through in a single day? Its NOT OUR JOB to teach your children how to love. Its yours.

Now dont get me wrong, I love educating people on the topic of Down syndrome. I love shouting it from the roof tops. But I get tired too. I get sad. I get depressed. But I get back up and keep teaching my children that its okay and people are going to stare and laugh. But I shouldnt have to teach my children that.

It just breaks my heart that we are living in 2013, and everyone is fighting for rights and achieving it. And then there is our kids. Still being treated like crap. Because they are being raised to think its ok.  Its not. And you need to know that.


Ok well I really dont know how to end this post, Ha!

So I am just going to say...

Please be the one to stop the ignorance TODAY! Make a simple change. Help me change the world.

Love and Blessings,



Thursday, March 21, 2013

WDSD



Today celebrates World Down Syndrome Day! March 21st - 3/21...
We celebrate on this day because Down syndrome is also known as Trisomy 21 - or 3 copies of the 21st chromosome.
3:21

We hope somehow someway you create awareness today for us, for those with Down syndrome and for those who love someone with Down syndrome. We hope that we have made a positive impact in your life. We hope that we made a difference in just one person.

Spread the word! Down syndrome is AWESOME!!





Sunday, December 30, 2012

Dakota Dont Dig Crust







Dakota is going through this "thing" right now.

This thing where he doesnt like to eat crusts.

Whats funny about it is, its even crusts on donuts and crackers... 
What is that you say? Donuts and crackers dont have crusts??
Right you are.

But he apparently thinks they do - so he eats around the edges... of everything.

I have no idea where he picked this up. Everyone in this house eats the crusts... well most of the time...
But it is hilarious to watch!

So here is his breakfast this morning....
French Toast - on whole wheat - with the syrup on the side for dipping.... With the crusts left to fend for themselves....

What did you have for breakfast today?

Friday, December 28, 2012

We hope you like Jammin too!


My son Dakota is pretty amazing. He has some awesome talents.

He can contort his body in ways no man ever should. He is super flexible and can fold himself in half. I mean, THAT is talent my friends!

He can stick his tongue out further then any human I have ever seen! Gene Simmons has nothing on him!

His voice can penetrate many decibels inaudible to human ears! I mean he is LOUD!

He has this uncanny ability to make friends where ever he goes. I mean people are just drawn to him!

But of all his talents I must admit his ear for music is astounding.
He LOVES to sing... ( at the top of his lungs.)
And he loves to dance... ( shake it!)
But most of all he loves to make music... ( NOISE).

For Christmas we were able to score him a bunch of musical stuff. Which included a cool roll up Key Board, a harmonica and a musical guitar. He has been tooting his harmonica for a few days and busts out the key board on occasion. But on this particular day he had his guitar out. And was singing.

What is greater on this earth then a man and his guitar? When he gets a little older I am going to put him in some sort of musical instrument lessons. I am praying it is guitar! :)

I have ZERO musical ability. None. Zilch. I can only hope at least one of my children will be able to woo me with their song of their soul!

Eh, heres to hoping :)





Friday, November 30, 2012

Homeschooling!

I have decided to homeschool Dakota. There were recent events which led m to this decision, which I will go into detail about another day. Right now investigation is pending on his school so I will not disclose details.

We had the option to put back in public school ( not going to happen) or into another private school ( because that worked oh so well) or homeschool.  I decided after MUCH thought that I would try. I mean I know it will be hard and I know that he and I will get frustrated. But who is better fit to teach him and love him then .... well, ME!

So we transformed our living room into half homeschool room half living room.... photos pending, its a work in progress!

This is a new exciting journey for us! I am nervous, but I know I can do it!! Dakota and Eli love the new set up! They have already colored and painted and done puzzles at their table! I am happy they accepted t so easily!!

Look forward to more posts on how the heck this is working for us!!



Surgery on the Man Parts

*DISCLAIMER* There are links in this post that contain pictures not suitable for little eyes. Man parts. Please be advised before clicking...


I have gone back and forth on whether or not to post about this. Is it too personal? Maybe it is. But this blog is our story. The truth. No sugar coating. This is how I live my life, my triumphs and tragedys...

Here it is.

My son, Dakota - who is 7 now, was born with a webbed scrotum. Due to this, they would not circumsize him at birth. They had a fear that it would pull back too far leaving his opening too wide. We digressed and agreed. Fast forward 7 years. Dakota throughout the 7 years often has infections and pain in his man parts.

We went to a Urologist down at our local hospital. All Childrens Hospital. They explained to us that Dakota appears to have phimosis. They then begin to explain that he will have to be circumsized and they are no longer worried about the webbing.

Circumsized? At 7? Oh man!

Yesterday was Dakotas surgery, and he is in a lot of pain. I really hope that he feels better soon, and that this cures all the issues he was having below. Being that he is limited in his speech, it was hard for us to make the decision to do this. But it was even more hard when he was trying to tell us he was in pain.

Trying to look on the bright side, I am hoping this will help with our potty training which has been an ongoing battle for years!!

Here are a few photos from our event...




Monday, October 15, 2012

Pumpkin Patch Field Trip


Two of the classes in Dakota's school went on a field trip to a local pumpkin patch.
They learned about how pumpkins grow, and where they come from.
They did some fun songs and even got to measure pumpkins with a tape measure, which was Dakotas favorite part!
They also did a scavenger hunt/iSpy game with all their awesome decorations.
And last but not least Dakota picked out 3 pumpkins, one for him self and one for his sister and brother.
As we were leaving, we got handed a coloring book, a recipe book and some seeds to plant.
I intend to plant the seeds with the kids as a lesson. I am not sure if they will grow, but it will be fun, nonetheless...

Here are some photos from our day!




Friday, October 12, 2012

God Never Makes Mistakes





Thursday, October 11, 2012

Against all Odds!





Wednesday, October 10, 2012

Fearfully and wonderfully made!





Tuesday, October 9, 2012

You are EVERYTHING, that I didn't know I needed!





Monday, October 8, 2012

Quit staring, Just ASK!





Sunday, October 7, 2012

Hold on to that something special...