Boo!!

All the Ghoulies are out begging for candy. Hope they come home with some of my favorites...

The littlest Ghoul is home with me and Daddy. Stealing candy, greeting Trick or Treaters and having a great time 

Here she's a little witch... 

And now a clown.. 

And for school she was a frog!

Hope you're all having fun tonight!  

Stay safe and watch your back, I hear there are Zombies roaming freely tonight

HAPPY HALLOWEEN!!
 

LAST TWO DAYS! DOWN SYNDROME AWARENESS MONTH WHERE DID YOU GO!!

I cannot believe this month is over. FLEW BY! I didn't post nearly as much as I had intended. As usual!

Today, I will leave you with the best advice I can come up with for anyone hearing the words Down syndrome for the first time,( as tomorrow is reserved for Halloween pictures  :)

1. Don't freak! As much as your brain is telling you, you should, DO NOT FREAK!
2. This is a classic case where your heart should lead!
3. If you were diagnosed on a Tuesday, that the baby you are carrying has Down syndrome, guess what? That baby you loved and cherished on Monday, is still your baby. Continue to love and cherish him/her!!!
4. Yes, the game plan has changed. A good cry is okay. Uncertainty is okay. Get a NEW game plan and move forward.. keep the old baby!
5. Your life is going to be AH MAZ ING!!!!!!!!!!!!!!!!!!    
6. EDUCATE YOURSELF! Stay away from medical websites! Go to the source! FAMILIES! Find blogs and FB groups for support and HONEST answers!
7. BE PROUD OF YOUR CHILD! They are already a fighter!
8.  This child of yours is magical! Enjoy!
9. There will be tough days! Some days you will want to run away. But guess what. Your typical children will lead you down that same road. LOL
10. The best words of advice I ever heard when I was pregnant with Em, came from one of my dearest friends and her Godmother. I have to admit when she said these words to me, I didn't get that warm and fuzzy feeling, but I clung to them. She was right when she said... "IT IS WHAT IT IS"   she meant not to hurt me with those words, but she did recognize that I needed to face things like a big girl. What those words meant to me was, Look, Steph, you have a beautiful baby on the way. Are you going to love this child like your other children or walk around in a daze for the next umpteen years. Embrace the child that God has hand selected for YOU! This child is a gift. Granted you may not understand this gift yet, and in your mind it's not the gift you want. But hang on! Stay in the game and YOU will end up the winner!     

The Porta Potty

This post has nothing to do with Down syndrome awareness, just my kids own unique streak of weirdness. 

We went apple picking and after Em consumed about 83 apples, she spotted the porta potty, and made a beeline for it. Could not get her away from it and yes, we were starting to attract some stares. 

She wanted in.. and I'm sure it wasn't to actually use it for it's obvious purpose. As she is still boycotting potty training.

At this point I had no idea if there was anyone inside. 

We were laughing to hard to care. Emmie was knocking and shaking that potty relentlessly! And in a very clear and loud voice yelling "Hello.. HELLLO. 

 
 We finally dragged her away. I hope no one was inside.. What a horrifying experience that would have been! LOL

She's A Whole Hand

As of yesterday my baby girl is now FIVE! That's a whole hand!!  It's been an amazing five years.

Five years that I would never have chosen for myself. A child I would have said, no thank you, to had I been given a choice.

I sit in awe of this child of mine. How could this itty bitty girl have caused such a change in me and my entire family. What powers does she possess that she was able to open our hearts and minds, take us by our hands and lead us gently and lovingly, into a world we never would have entered on our own?  

Is she a magical little imp? Casting spells as she goes?

In a way, maybe. As she does flit and flutter a bit like a fairy, and her smile has the capability to melt icebergs.
But no, it's not magic that she carries, but so much more. 

She carries an extra chromosome which some have dubbed the Divine Chromosome. Number 47 was blessed by God in a special way.

With  #47 comes love, and a pureness found only in Angels. A toughness to succeed but never to hurt. Forgiveness that flows like a gentle rain, and hugs that feel like the arms of God himself around you. She knows not how to hurt or belittle. She is full of trust ,and believes everyone else is too.  She has no prejudices, no judgement does she pass. 

She is the most Christ like person I have ever met. Goodness and love come naturally to her. Where as we all need to work so hard at it. 

Yes, she is special, but not because of her "needs". Emilia is special because she is the epitome of everything God wants us to be. Down syndrome is not some chromosomal defect, a genetic mishap. Nothing God does is an accident. 

The Divine Chromosome is just that.. . Em is filled with love from heaven. And she sprinkles it like pixie dust where ever she goes. 

The Small Things.

Living with a child who has Down syndrome has it's advantages. One of those is that we get to celebrate a lot more often. We celebrate EVERYTHING!!! See all those things that "typical" kids do and no one really notices, are super duper, make a cake, set off fireworks events in our house.

I'll tell you about  a few of them. When Em was teeny tiny, she had food therapy. The kid couldn't keep food in her mouth (should be my issue, maybe I'd be able to shed a few.. ) Her sweet little mouth would twist and turn and out it all would come. Her muscles we not strong enough to keep that yummy oatmeal in. After a few sessions she figured it out and little by little she ate more and more things. SUCCESS! And we celebrated, with cake because now she could eat it!!

Another huge one was stacking blocks. This was about a years worth of duck and cover moments for all involved. Em had a great arm! She would toss blocks over her head, across the room and behind her back. And she never let on which way she was going to let it fly. But never would she "put it on top". For over a year that was the most heard phrase in our house.   Just about the time when I was ready to toss in the blocks, I mean really you can get through life without stacking .. right? That's when she decided to start building up and up and up!! What a beautiful sight that was! There's probably a blog post about somewhere. So, what did we do?? You got it! CELEBRATE!!!

How about when your child put something in a bucket? Do you remember that day? Well, for kids 1-4 I can honestly say .. no way. I have no idea,  didn't they just always know how to do that?  But for Em, it was a monster of a celebration! I mean the day she let go of a toy and dropped it into the bucket was ENORMOUS!!  Em used to have this white knuckle death grip on everything. She would not ever, ever, ever drop a toy into a bucket. I think I cried on that day.

And just yesterday, we were driving home from school and she sneezed. You know that sneeze where pounds of "stuff" are hanging , suspended for those few precious seconds before they drop onto the top lip and inevitably that curious little tongue emerges to see what's going on. Yeah, that's what we were dealing with. I thought to pull over, but in traffic with no good place to stop I decided to just wing it. I mean how bad could she make it? Then it dropped... ugh .. no Em don't lick it!!!!  Suddenly I had a thought. Give her a wipe! So I managed to get a wipe from my bag and pass it back. "Go ahead Emmie, wipe your hands and nose"  As I wait with hope in my eyes, but expecting her to just eat the wipe like she usually does... I get a gift.  My dumpling wipes her hands and then cleans her sweet nose, like a pro! All signs of snot are gone, and an extra gift, she said , "Thank you"!

 Drove the rest of the way home with a stupid happy smile on my face!

It's those small things we bake the biggest cakes for.

LIEBSTER AWARD...

One of my absolute, most, favorite people, Rochelle Cannon, who writes about her beautiful family on her blog, The Cannon Chronicles, has given me a Liebster Award.  I'm not asking why.. I'm just accepting it. 


So I guess as with anything there is a catch. 


Some questions need to be answered.


Okay, here goes!


1. Why did you start blogging ?

Well, a little bundle named Emilia Faith came along in Oct 2008.  When we found out she would be born with Down syndrome, I hit the internet to find as many miserable people as I could who had a child with Ds.  I wanted to be totally prepared for how awful my life was going to be. (are you laughing yet)  Yes, I really did that. Anyway, I couldn't find any!!! Instead I found blog after blog of insanely happy families showing off their gorgeous and down right perfect children who happen to have Ds.  When Emilia was 6months old I decided to try my hand at blogging. I thought if I coud help dispel the myths about Ds to just one person it would be worth it.


2. What is your passion that you want your readers to get out of your blogging?   

My passion is my love for people with Ds. And because of that love my heart has also been opened WIDE to the orphan. You see many of those blogs I initially found before Em was born were of families who had adopted a child with Ds. As I learned more and more I found out the plight of the orphan with special needs. It's a long sad lonely road, especially in other countries. So if you read my blog you will undoubtedly recognize my passion for the orphan and hopefully it will ignite a fire in you.

3.What are some of your favorite blogs to read?

I hate naming names!!! This is a very unfair question! There are so many AH - MA- ZING  blogs out there. Let me see. Do I need to state the obvious? The Cannon Chronicles. Another fab blog is The adventures of Pudge and Zippy   Courtney writes with honesty and humor about everyday life with the cutest "Squibs" in the world.

Another absolute favorite is Flight Platform Living, where Jane uses her creativity as a mom to three "busy" and beautiful kids, mixed with her enormous heart for the orphan to leave me both laughing and crying on a daily basis.

I'm stopping here but seriously could add 100 more. Check out my blog roll for more wonderful reads.


4.What is your favorite singer/band? why?

UGH, if  I were 16 this would be a piece of cake to answer.  But I'm old!!! I am forced to listen to my kids music all the time. Motherly sacrifices.  So, right now one of MY favorites is Pink. Love every thing that Chick puts out.

5. If you could have dinner with anyone who would it be and why?

I'd like to have a dinner party. Is that okay Rochelle? And you didn't specify alive or dead. So I'm going with both. I'd have a fabulously,  fancy party with actor, James Stewart, I've loved him since I was a kid. (if you're a youngin' and you just said "Who's that"? Google him!)   Mikhail Baryshnikov, I love ballet,    Zigmunt Kaczmarzyk  (my FIL. He lives in Poland and I miss him terribly)  And Pope Francis because he makes me smile.   


6.What is the best decision you ever made?
  
The best decision I ever made was to listen to God and just follow His lead. Life is so hard, why make it any harder by trying to lead the way.  He will take you to places you never expected or thought you wanted to go, but in the end it's always for the best. I think Em played a huge role in that decision. I was in a place where I had absolutely no other choice but to trust God. Nothing about her diagnosis was making any sense to me and I saw nothing good coming from it.  God can always see the big picture when we are too busy looking the wrong way.

7.What is something you wish everyone knew about you?

Hmmmm. This sounds like a trick question. Let's see.  I guess I'd like everyone to know that I'm a good person. That sounds so freaking boring. But a lot of people seem to get the wrong impression of me. I've been shunned more than my fair share in life. Another thing you should know is, that I'll never change who I am to fit in. I'll never stop shouting my beliefs to be part of the "cool crowd".   

8.  If you won the lottery what would you do with the money?

There would be a lot of FULLY FUNDED HAPPY DANCES going on!  And we'd have a house we could all fit in!!!

9. What are your hobbies?

I love gardening and cemeteries. They both calm me. And I love making floral arrangements. I used to have so much fun decorating for fall!! I'd go nuts with wreaths and flowers and anything I could fashion into something as a centerpiece or decoration. I absolutely ove going back in time through books. Give me anything to read about the history of my state or somewhere that I have been or can go to. I love seeing what something looked like 100 years (or more ) ago. And then seeing it today. One of the best things about living in an old town.  

10.What drives you?


Fear. Fear of not doing enough. Not being enough to my family. Disappointing God by not doing what He put me here to do. Scares me into moving every day. And still I fall short everyday. Probably not what should be driving me , but I'm being honest. 

So there you have it!   Now I get to pass this baby on to two other unsuspecting people! Liebster means Dearest in German and two of the dearest people I know are :

Jane, from Flight Platform Living 

  and

Lacey, from, Jaxsons Fight

You're up Ladies! Now here are your questions. I'll keep it light. Rochelle's made me have to think too much ;)

1. What is you favorite way to de-stress?
2. If money were no object, where would you go and why?
3. If you could live in any period of time when would it be? It could be past present or future. Lets hear it.
4.Borrowing one from Rochelle's..What is something you wish everyone knew about you?
5.What was the best day of your life? One rule, you cannot use your wedding day or the birth of your children. That's too easy.
6.  If you had the chance to come back and haunt someone for one day, would you and who would it be? Okay Halloween is around the corner I had to throw one wacko question in here. 
7. What does your most perfect family day look like?
8.Where is your favorite place to go to be alone? (bathroom doesn't count)
9. Funniest or most embarrassing moment?
10. What do you want people to think of when they think of you? Or do you even care? ;)

Love you both!!! And I love you Rochelle, my little Liebster..

 

Myths about Parents Who Have a Child with Special Needs

Continuing with Down syndrome awareness month I thought I'd address some myths about parents/parenting. Not with you "typical" parents (hehe) , but us Super Hero parents who have children with special needs. 

Well, myth #1... We're not Super Heroes (insert sad face here)

I know! I'd really love some freaking super powers. But it's not to be. Although, some parents sure make it look like they do. I'm not one of them. We're all just human, doing whatever we need to do to get through each day. No different than any other parent. 

Myth #2   God never gives you more than you can handle. 

I can barely type this without laughing. REALLY? God, on a daily basis dishes out more than I can handle. He just dishes out more grace to get me through. Seriously. Look at your days. Do you think you get a little more on your plate than you can swallow? Of course you do. God knows that, that's why He's never far from our sides.


Myth # 3  God gives special children to special parents. 

Another one that makes me giggle when I type. Well, if you call a street smart punk, with good intentions special, than I'm oozing with all sorts of specialness.We hit the jackpot simply because our butts needed saving. God saw that and sent us Em. Okay, so we weren't Bonnie and Clyde as parents but our eyes were closed to certain things. Without Em, God new the chances of our eyes ever being opened wide were slim and none. So, without our consent or approval or even our opinion on the subject, He sneaked her right into our lives and hearts.

 Myth #4 There will be days you fantasize about running away. (just for a little while)

Oh, sorry.. not a myth. But a totally acceptable feeling. 

Myth #5  A child with Down syndrome will ruin your life and take away valuable time you need to spend with your other children.

I know a woman who had an abortion because of this reason. Although my husband and I did everything in our power to persuade her otherwise she didn't believe us. When I was pregnant with Em and we found out about her Ds diagnosis, I initially thought this too. I remember thinking if she was our first child and not number five things would be better for her and for us. I was afraid she would get lost in the mix, or that my other kids would resent her for taking me "away" from them. Nothing of the sort ever happened. In fact, I now say, God placed her very well as number five. It has made her stronger, more independent, and determined! She wants to do what all the kids do. She tries everything. Nothing keeps her down. And with four older siblings we have built in speech therapists, occupational therapists and physical therapists. She has become the corner stone we all gather our strength from. 

This little peanut has done so much for us! More than we could ever do for her.


* disclaimer. The bottle was empty when she stole it from the garbage! Bonnie and Clyde finished it off..

Siblings and Down syndrome

One of the biggest worries I had when I found out Miss Em would be sporting an extra chromosome was how my other children would deal with it.

Would they bond? Would they love her? Would she love them? 

I think the picture speaks for itself

What in the world would they have in common?

Everything and nothing. Depends on the day. Just like any other bunch of siblings.

 How would they deal with a child with a disability.

What disability. ..  :)

 What would their friends think?

My daughter's friend Paula. Fits right in as another sister

 Would their friends feel "uncomfortable". 

They look pretty comfortable to me :)

Would my children be able to find their voices and advocate for their little sister? 

In a heartbeat!

No doubt about it.

Don't mess with the siblings because they love their Emmie!!! 

Beware! Here comes 31 Days of Down Syndrome Awareness... Emmie Style!

So, it's October again. October is Down syndrome Awareness month!  I want to do my part to make everyone aware!! 

So I'll be getting some help from my lovely assistant Emilia. 

Yes, she is under that bow. That's how she likes it. Just accept it. I have and life is much easier that way. Anyhoo ,this month we will be giving it our all to let you see Down syndrome the way we see it! Something to celebrate!

Not something to cry about.( she's fake crying here, no worries)

And definitely not something to be afraid of.

So grab a coffee...

or a Margarita, and stop by all month. We'll be here.