Monday, October 5, 2015

She is with me

Today has been a day from suckville. For real. Despite the busy day, the emotional tolls, the physical pains and aches, I am more than happy to update the blog for day 5 of Down syndrome awareness month.

Kloey is a part of our family, a very big and important part of our family. Naturally, we take her with us on outings, errands, and vacations. This does require more time and energy on our parts but the joy that we get from having our entire family together is priceless. 

We do not, could not, and would not exclude her from anything, from being a part of this family just because she requires a bit more work. Yes, people sometimes look at us differently but who cares? I don't. My sweet girl is just being herself and we're all there to experience our day together.

Some have suggested that it is admirable of us to include her in this way. We never even thought of it that way. I guess one day we just put on our big kid panties, rolled up our sleeves and said, "Well, time to take the family on a vacation". There wasn't even a thought of "where should Kloey be when we all go to the beach. Or, "how can we escape the extra work and energy that is Kloey?" It was more like, "what extra resources do we pull to make this more bearable?" or "what can we do to make this fun for the WHOLE family?" 

I love having Kloey with us. Just as I love having Kourtney and Joseph with us. Kourtney loves having Kloey with us. Joseph adores his big sister Kloey. Kloey is Kloey. Kloey is us.

So, the next time you see me with my little girl, tackling a day at the beach, running down the sand with her for the one millionth time, while she is giggling like a crazy person tasting sweet freedom for the first time, just know one thing.... I'm not even thinking of her diagnosis. Her siblings and father aren't thinking of her diagnosis. And she is DEFINITELY not thinking of her diagnosis. All she's thinking about is running through the sand, making friends, and probably when would be the best time to snag the cookies that are waiting in the cooler.

A post from my first year of DS awareness

The Final day of Down Syndrome Awareness Month...

To Kloey Alice:

I knew that you were there
yet, it did not feel quite real.
You grew and grew each day
but I did not know your soul.
Movements came all day and night
the connection was not there.
A thought of something extra
filled my heart with fear.

Each day I struggled endlessly
to know the girl inside.
I tried and tried
to no avail
to calm my racing thoughts.

One night you came.
I knew right then
you would not be the same.
As you struggled for your breath
I struggled with my pain.

You came into my arms
I looked into your eyes.
I was calm.
A smile formed.
But did not last for long.
I knew again
with certainty
you were what I feared.

A day passed by
without much thought
without much feeling
without much love.
I felt the need to run that day.
I felt the need to cry.
I felt that everything was lost.
I felt that life was done.

Then I saw you helplessly
laying on your own.
I grabbed your hand
and said your name
and cried for all your pain.

I fell in love that morning.
I fell in love with you.
I fell so deeply that despair
could never overcome.

I fall in love each day
with everything you are.
You teach so much of love
of being who
and what
you are.

Today I cannot possibly
imagine what I felt.
That day that was so numb for me
was fear and nothing else.

I do not fear you little one.
You do not have to worry.
I know that you have come to me
so that we can share this journey.

Thank you for joining us this month. I love you all!!!

Saturday, October 3, 2015

My escapee

Why don't we lighten things up a bit? How about some humor in our lives. My stress is your amusement.

My Klo is an escape artist. Oh, is she ever!!! She absolutely LOVES to be outside. She loves taking walks. She loves playing at the park. And she LOVES TO RUN AWAY FROM ME!!! Not everyone, mostly me.

You see, Klo has an endless desire to stress me to the max. She'll run right into the street. She'll run right up to a dog. She'll jump into a stream. Stresses me out.

Here are some of her escape tricks:
1. Be unfailingly adorable and full of sweetness so as to build up a wall of trust and affection.

2. Practice your ninja-like silence. If you're always quiet, they'll be less suspicious when the opportunity to escape arises. 

3. Memorize their patterns. When do they tend to leave doors open? When are the yard gates open? Typically while bringing in groceries or taking out the trash. Duly noted.

4. Learn how to walk and run on any surface without it hurting the soles of my feet. 

5. Watch them. Don't let them see that you're watching them, but watch their every move.

6. Inch your way ever so slightly to the escape portal of choice.

7. Make sure that pesky baby isn't in the way.

8. If said baby has made an appearance this is the time to push.

9. Wait until the parentals are distracted (i.e. the baby cries after being pushed; Mom is explaining to Dad why she bought the expensive spaghetti sauce [don't know what his deal is, that woman's food hasn't ever disappointed him. I feel its proper place is face down on the floor that Dad just mopped])

10. Slide silently out the portal and down the stairs.

11. RUN! 

12. Laugh uncontrollably as the wind hits your face and the air fills your lungs. You're FREE!!! You're FREE!!!! You're....

13. BLAST!!!! Foiled again. WHY MUST THEY BE SO FAST?!!!

14. Hatch a plan for the next portal escape.

15. This time... dupe the big sister into unknowingly concocting a plan with .

16. SUCCEED

Seriously. Girl finds her thrill in giving me panic attacks. Yeah.
.....We're working on that.

Friday, October 2, 2015

It happened

Kloey was treated differently because of her diagnosis. Someone saw her as a problem, almost like a bug to be squashed, not as an innocent and loving soul. And I wasn't fully prepared for it. She is my baby and the love I have for her far exceeds anything that I've ever felt before. It outweighs any fear, it dissolves any apprehension, and it overflows in my heart every minute of every single day. When I look at Kloey I see who she is and who she has helped me to become. But when these people saw Kloey they saw something defective. And that hurt me.

Here's the story:
We signed Klo up for dance class. She is walking this year so we finally could. She loves to dance, twirl, leap, whatever it is. And she LOVES music. We thought this would be a great opportunity for her to be involved in something outside of physical therapy, occupational therapy, speech therapy, and the very necessary pre-school (yeah, the girl is busy). This would be something fun. This would allow her to do something that she loves.

We got her all dressed up in her leotard and tutu and headed out. We actually forgot to take a picture which I'm grateful for. As soon as we got there and the dance teachers saw Kloey we felt the atmosphere change drastically. Now, I had told them that she has Down syndrome, I wasn't blind siding them at all. We thought that maybe it was just initial apprehension and that we should go ahead and try anyway. We didn't have an opportunity to talk to them about expectations or anything as class had already started. But, in my mind, this was a class for 3 and 4 year olds, there wasn't going to be a lot of structure anyway. I was wrong.

Kloey was THRILLED to be there. She loved shaking her hips in the big mirrors that lined the walls and she followed one of the instructors around trying to do exactly what she did. I thought it was adorable. They thought otherwise. They started to get frustrated with her after only about 5 minutes. They were visibly angry and upset that she was running up to the mirror. They kept letting kids cut in front of her in line but when she tried to get in line (she doesn't understand taking turns) they would put her in the back of the line. Over and over again they did this.

I decided to go in and see if I could maybe help them to loosen up. The instructor practically threw her at me and said with a nasty look on her face, "I just don't know how to approach this". Okay, now I was pissed. She was doing NOTHING that a typical child wouldn't do. She was there to have fun. They saw her diagnosis and dismissed all possibilities that she could ever be in a "normal" dance class. They set her up for failure.

I may sound dramatic but just know that my husband saw all of this as well. He agrees with the actuality of the events above. And to know Jordan is to know that he is the least dramatic person, and a very non-confrontational one at that. We were so upset.

She would put her hand on some of the girls' shoulders and say "hi". They would look back at her as if she was something so low that they could never be bothered to utter a simple "hello".WHAT are their parents teaching them??? As soon as the other kids started looking at her like they wanted to get rid of her and her differences we decided it was time to leave. I could barely hold in the tears. She loved dancing so much, she loved being around kids and just having fun! She cried the whole way to the car and for 10 minutes afterwards.

We took her to the McDonald's playplace and spoiled her for a good hour. She felt better. We didn't.
I got a refund from that studio and she lost the opportunity to know and love a beautiful and tender soul. She missed an amazing opportunity to learn and grow through accepting someone who was a little bit different than what she was used to.

Shame on her. And shame on her parents for not teaching her how to treat those with differences. And thank you to her, for throwing me into the realm of reality and helping me to realize that I am indeed strong enough to endure it.

(We are trying another studio next Tuesday. We've met the instructor and she seems amazing)

Thursday, October 1, 2015

The beginning of everyday posts

Hey All!!!! It's October and you know what that means..... DOWN SYNDROME AWARENESS MONTH!!!! This month I will post something new every single day in honor of down syndrome awareness. My hope is to answer questions, raise awareness, and break down barriers.

Let's start with a very, very touchy subject... Be excited.

Last year I had the opportunity to speak with a mother who had recently gotten a positive prenatal down syndrome diagnosis for her child. This was to be her sixth child. She shared her story on a social media site with other expectant mothers and what she said is nowhere out of the ordinary. She and her husband decided that, with this diagnosis, they were going to terminate the pregnancy. She was 26 weeks along I believe.

The other mothers started to praise her for her courage and good sense towards her unborn child. They were saying things such as, "You are such a brave mama", "that was the best thing you could have done for that child", "don't worry, you'll keep trying and you'll get it right next time".  ..."you'll get it right". "brave mama". "best thing for that child". These phrases resonated in my mind and I was so sorry for all of these people that believed what they were saying. And I was angry.

I knew that my child was GRATEFUL for having life. I knew that I was brave for giving her life. I knew that I had already "gotten it right" with her. So, anyone who knows me knows that I couldn't keep quiet on this matter. With as much sensitivity as I could muster, I decided to send her a private message. It went something like this:

Hi. My name is Stephanie and I have a 3 year old daughter who has down syndrome. I know that it can be a scary diagnosis and that there are a lot of ideas and stereotypes about children with this diagnosis but let me tell you a little bit about my Kloey. She is the most lovable person I have ever met in my life. Every morning my life lights up at the sight of her early morning happiness and smiles. She plays, eats, sleeps, laughs, has favorite foods and shows, just like any other child. She has so much worth. I'm sorry that you felt that you needed to abort your baby, please just know that I am here for you if you have questions.
Something close to that.

She sent me a message back:
Hi. Thank you so much for that message. I have been have conflicted emotions since I made my decision. Your daughter is beautiful and I wonder what my little one would have been like and how my life would have changed.

She regretted her decision. She wanted to meet her child. But her child was gone, simply because of an extra chromosome. I am not trying to be insensitive here, I am simply sharing our conversation and the before and after of this mama's emotions and thoughts on the matter.

My goal here is to eliminate this idea of "Diagnosis=lesser life". It simply is not the case. Diagnosis=lots of emotions and a different plan, not any less of a life. If I can change one mind out of the over 90% who decide to terminate after a prenatal diagnosis of Down syndrome, then I have done my job.

Be excited. It's Down syndrome awareness month.