To refer to the previous year

This is a post from my blog exactly a year ago. I love it so much and wanted to share it again in all of its honesty and truth. Enjoy.

Continuing with our Down Syndrome awareness month. Let me just say, I feel wonderful that they have an entire month dedicated to this. I love my Kloey Alice. I love her sooo much that it's overwhelming. But before I had a child with down syndrome, I worked with people with disabilities. One summer I worked as a camp counselor at a camp for people with disabilities. It was one of the best summers of my life! All people are special. All people deserve happiness. All people deserve to be loved.

So, today I wanted to tap in on some reality. I want to share some real feelings of mine. While the feelings of fear and the feelings of unknown have largely gone away, there are still concerns and worries that I have. Please do not judge me for these. I am just being very real.

The other day a random, fleeting thought crossed my mind. "What if Kloey had been "typical" just like Kourtney??? How would my life be different???

What will happen when someone calls Kloey a retard? I know that will happen. How will Kourtney react? How will I react? How will Jordan react? How will Klo Bow react?

What if her teachers don't expect anything from her?

Will she receive the best education possible?

Children at school flock around Kourtney so much that she gets overwhelmed by her own popularity (really, I've seen this) will it be the same for Kloey?

Will children shun and reject her because she looks a little bit different?

Why do people stare? I wish they would stop staring.

Stop saying you're sorry to hear that Kloey has Down Syndrome.

Stop saying "poor baby" when we tell you she has Down Syndrome.

We've been working for so long on this one milestone... why isn't she getting it? what am I doing wrong? Why isn't she progressing?

When will Kourtney notice that Kloey is "different"?

When will Kloey know that she is "different"?

These are some thoughts that occasionally enter my mind. Honestly, they don't invade my thoughts very often. But, I really just felt that I wanted to share with you that yes, sometimes I am weak. But it never lasts long. Sometimes I cry. Not because I am sad for myself... but because of what she MAY have to face in her life. Please do not be cruel to someone that is different than you are. Because in all actuality, everyone is different from you. It's just that when it comes to Down Syndrome the difference is in their appearance. It's obvious that they are different. Like I said, everyone is different. Give them a chance. Don't be cruel. They are people, just like you. Maybe someday you'll have a child, or a niece, or a nephew, or even a grandchild that has Down Syndrome... and then you would really regret having ever made fun of or been cruel to another human being. Just don't do it. Spread love and understanding. Not confusion and fear of the "unknown".

I desperately hope that this blog is reaching someone. I hope that this is helping someone... anyone. Anyway, back tomorrow. Much love!

    I am Jordan Hansen, the father of a child with Down syndrome, these were/are my personal thoughts. Enjoy.  

    Down syndrome, right? What comes to mind when you hear those two words, Down syndrome. Curiosity? Fear? Disgust? Repulsion possibly? Don’t feel bad if all of these have gone through your mind. Just the word “Down” syndrome implies the essence of these things. It’s hard! These people are everywhere, and at the same time, we just have not spent enough time with them to literally get past what’s skin deep. It’s unfortunate the doctor that named it used his own. From here on out I personally will be referring to it as up syndrome, or maybe love syndrome, maybe happiness syndrome, or I like pure joy syndrome. Seriously there are hundreds of other synonyms that should come into one’s mind before the thoughts that do… just as they did in mine for 25 years.

    They are just rare enough that curiosity about what they’re like, how they act, if they think, if they communicate, if they share, do they speak, what do they say, how and what they feel, what emotions go through their heart, and let’s face it, why their eyes are like that, why are they a little shorter, do they notice me wanting to look without staring? We are curious by nature, and normally haven’t been taught, or spent enough time with them to get this out of our system, even if they are as close as a nephew or niece sometimes. It’s a wonderful thing to be curious! PLEASE! Ask questions, talk to us, share with us what you are thinking, let us help you understand how amazing they can be. And most importantly, talk to them! They are yearning for interaction, communication and attention. Be careful, they may think of you as their best friend and even possibly steal your heart with their love!

    It may be hard to talk to them, they’re different, you don’t know if you should talk to them like an adult or a child. They however have the tendency to be shy. Just ask them what their name is and how old they are, and then talk to them like any other person with a name at the age they say they are. Nothing more, nothing less. They mentally are that age believe it or not. After their early teen years, it’s possible it slows, but believe me, they know how long they have been alive, and the things they know they should be doing. It can be hard for them at times, it can get frustrating, but it’s okay, do not be afraid, they want to talk about those things!

     Let’s face it, they do look different, but don’t we all!? Who says that we aren't

the ones that look awkward. Heck, to us, in their minds they’re probably wondering why we all have such straight boring eyes, flat heads, and tiny frowning mouths. Don’t worry, unfortunately Joy syndrome is not contagious. Know that you won’t be hurt by shaking their hands, and that they won’t hurt you if you give them a hug. You’re not dealing with a silverback here. Now their smile on the other hand can rub off. It’s absolutely captivating if you stay around long enough to experience its shine

     When you see someone with Joy syndrome, (Sheesh I feel like I’m writing a brochure, it should not feel like this everyone!) you may have to urge to just run the other way as to avoid any awkward glances, thoughts, or heaven forbid conversations. This again is natural due to the rarity of time spent in their presence. If you only knew how full of joy, how much pure innocence they emit, your urge of repulsion would be one of gravity! I know I’ve said it over and over, but seriously, if I could just have every human being spend 10 minutes with my girl,  I would dare say that every fear of who they are would vanish from the mind of each of them. All she ever does is stare into your eyes with thought, wonder and admiration. She claps for every accomplishment you fulfill. She blows you more kisses than you could ever return. And she will for sure help you in anything you need done, especially if the task at hand is emptying your laundry hamper.  

    Curiosity, yes. Fear, Im sure. Disgust, nope, Repulsion, never. They have many feelings too, in fact more than we could ever imagine. For example, when they see you, the latter emotions mentioned would have also been accompanied by a happiness to see you. The desire to get to know you. The joy that you are even considering introducing yourself.

    Down Syndrome right? Wrong! I cannot possibly express how wrong! I’ll try it like this: Wrong, wrong, wrong, wrong, wrong,

wrong, wrong, wrong,

wrong, wrong, wrong,

wrong, wrong, wrong,

wrong, wrong, wrong,

wrong, wrong, wrong,

and one more for good measure: WRONG! All in caps.  Joy syndrome is what they have, and it’s what they spread. ENJOY them! They are treasures, and gems that we have been blessed to have on this earth. If you are one of the few blessed with the opportunity to have a child with happiness syndrome in your home, be grateful! Share her! Spread her joy. People will have emotions about it, but for the most part these days, they are just new to them. You think someone is staring? It’s ok, more than ok! Invite them over, introduce your loved one. Help them understand. Do not be afraid of bringing one of them into this world. Do not let what you don’t understand make your decision for you. Take the time to understand these people before you let your naivety and selfishness make it for you. If you deny that opportunity you are denying you, and your family the greatest blessing that can be bestowed to a family and anybody that family meets. At the very least, do not deny that to someone who would gladly take them into their home for those blessings. As my wife says and I've modified: “It’s only an extra chromosome, calm the freak down! (I've had to tell myself this on occasion :) They are not an alien, they are a child of God, just like you and I. A human, just like you. Flesh and blood, with a heart of pure gold. They unify a home. They enlighten it, and build it into a solid foundation, created by their acceptance and kindness. They are truly an example and presence of who God wants us to be.

    If you have any questions whatsoever about love syndrome, happiness syndrome, or pure joy syndrome please do not hesitate to ask. We do not judge, and will not only answer your inquiries, but encourage it.

                          With love,

                                               The Hansen’s

Sleeping Angel

 Just as most mothers say of their children, I love to watch Kloey sleep. At first I watched her sleep because I was afraid that she would stop breathing due to her troubles breathing and her being on oxygen and what not. Those were very scary months. But now I watch her sleep as I wonder what goes on in her little mind. She can't tell me, after all. I wonder why she was sent to me, what I will continue to learn from her and what kind of relationship we will have.

 But I don't worry about those things. You see, one thing that this diagnosis has taught me is patience. I should add love and complete acceptance there. I don't have to worry about when she will tell me what's on her mind. I know that someday she will speak to me with her voice and with words. I know that someday she will walk. I know that someday she will learn to read and write. And I know that someday we will have a relationship that will be envied. My daughter amazes me every single day. She started to walk around furniture last week. She knows how to sign to me when she wants to eat. She knows how to tell me that she is tired. She knows how to play with her big sister and get lots of laughs out of her. She knows that she has Daddy wrapped around her little finger. She is incredible.

The smile says it all!
Down Syndrome awareness month day 4 (making up for lost time yesterday)
There will be another post later this evening written by my wonderful husband!

It is late... but this still counts

Work sucked 12 hours out of my day today. Yes, twelve. However, I have tried to do my blog twice to no avail. Our internet was out all day long, a super annoying occurrence that has become all too frequent. But it is working now! Hurray!!!

I want to share lots of pictures and describe them so that we really get a sense of how wonderful Kloey is. Not only that, but also how wonderful the relationship between Kourtney and Kloey is.

Here we see that Daddy didn't have her carseat so he made do with Kourtney's. He was driving about 3 blocks, don't freak out. Anyway, she just fell asleep all spread eagle and chilled out. I just love everything about this picture.

So, Kourtney and Kloey adore each other. Occasionally we have some sibling scuffles but not really. As soon as we brought Kloey home from the hospital Kourtney started to adore her. She never even went through a jealous period. Kloey on the other hand, has started to push Kourtney off of Mommy's lap due to intense jealousy... oh boy!

 My husband took these pictures and I know they are not super great quality but they are just so precious in what they capture. Look at the love and comfort between these two. There are no stereotypes here. Kourtney sees her sister as her sister. And Kloey intends to be everything a typical sister would be.

 Shopping with Daddy is always big fun for my girls. Kloey has started to get restless though. She has hit the stage where she just wants to get down and explore every little part of the floor, doesn't matter where we are!

 In this picture I see my daughter. You may see Down Syndrome. But I see Kloey. A little girl who is pulling to stand at last! A toddler just learning to drink from a sippy cup. A smart girl learning how to communicate through sign language. A child that smiles almost every waking minute of the day. I see a blonde hair, blue eyed beauty. Some days I forget that she even has that extra chromosome. Because she is mine. She is my daughter. She is my Kloey.

 She discovered the shelves and all the mystery that lies within... what more can I say???

Sicky Sick

Happy Down Syndrome Awareness Month!!!

So, for the past several days this Mama has been sick.. fever, chills, and all! I actually got it from my daughter. And that leads me to my post today. Kloey is always getting sick. If there is something in the air, something being passed around, this child is going to get it. This is not to scare anyone away from down's children but if I'm being honest, this is what happens. Last winter she contracted whooping cough three different times. THREE TIMES!!! Honestly, it was exhausting and took a toll on us for sure. After the first time that she got whooping cough she stopped sleeping through the night and for the next 9 months got up at least three times in a typical night. It only got worse when she got it the second and third times.

Just a couple of weeks ago she contracted something else and I'm not even entirely sure what it was. Jordan and I thought that she was teething and apparently we were wrong. We kept shoving Orajel in her mouth and I guess we were just waiting for the constant wailing to subside. Kloey had never really had Orajel before and she will never have it again. This is why...

She was already having a hard time breathing because of whatever virus that was making her sick but then we nearly killed her with the Orajel. There is no exaggeration there. The benzocaine in the Orajel was closing her throat and swelling her tongue. As you can see up here, her oxygen was low enough for them to put in an oxygen tube and crank it up. She was so dehydrated that she needed an iv. And here's the kicker... we tried to tell the doctor that her tongue was swollen and that we were concerned about it. We asked him to look into it and even told him that we had given her Orajel, which was new to her. He just looked at me and said, "her tongue is swollen more than normal you mean?" Understanding his meaning I said, "I know she has Down syndrome but her tongue is not normally swollen. It's not normally sticking out of her mouth". He just looked at me as if I was some poor soul unwilling to admit the truth and walked out of the room without another word about it. I mean, REALLY?!! We got home that night and gave her more Orajel and while she was screaming uncontrollably and really really scaring us to death, Jordan said a prayer and literally right after said, "we have to stop giving her orajel". He Google'd it the next day and almost all of her symptoms were linked to a benzocaine allergy. Boy was I mad (more like livid) at that doctor. We stopped giving it to her and the next day she was 50% better. After being scarily sick for a week... this was a huge sigh of relief for all of us. We've just now started to sleep again.

I am reminded over and over again that as Kloey gets older there will be times when I'm going to need to really really fight for her in different instances. This was one of them. Maybe I should have been more persistent but I was exhausted and thought that maybe my mother's intuition was wrong. I don't think I'll doubt that again. Much love all!!!

Down Syndrome Awareness Month 2013

Hello all! Can you believe it's already been an entire year since last October?!! Well, I certainly can't! So we will have a blog entry every single day in honor of Down Syndrome Awareness month (that's October!) The purpose of this is to give people an opportunity to be "in the know" about Down syndrome and what it is like to have a child with it. While awareness has definitely come a long way I believe that we still have a ways to go. If at any time you, as the reader want to know something or have a specific question please ask me in a comment or you can private message me on facebook here... 

Also you can like my blog facebook page to keep up with the posts every single day here! Happy October everyone!!!!

My baby girl with my hubby... sweetest smiles!!!

Throwing fits and writing books

Crazy is the craziness that describes our crazy lives. Don't over analyze that one, I'm tired.

Kloey threw a tantrum today in the grocery store. And I realized we have a problem, well I have a problem. She's adorable. That's not super problematic but let's be honest when you're trying to teach them to not throw tantrums and what not, it can be a concern. See, Kourtney has always been adorable, it is true, but I knew all of her little games from the start and she doesn't really know how to play the "cute" card. Girl gets it honestly, I've never been able to "cute" my way out of anything.

So, we're in the store and Klo decides she would very much appreciate it if we would hold her, thank you very much. So she ever so cutely and adorably holds out her arms for me to pick her up and gives me this heart melting smile. But I've got shopping to do so I just give her a kiss and tell her that she's just going to have to sit in the cart. So she tries again... and again and again and again. Stubborn thing!

When she finally realizes that I am not giving in she starts crying and kicking. What?!! No no no. This can't be right, you think, it must have been Kourtney. Nope. Kloey is crying and kicking and DEMANDING that she be picked up and held this very instant. RIGHT NOW, if you wouldn't mind, please! oy.

Jordan picks her up. Whatever, he prevented my headache. She stops crying immediately and starts her grinning and giggling and "I'm ever so happy all of the time" thing. What?!! oy.

Anyway, we couldn't set her down AT ALL! She had to be held the entire time. And let's be honest, this phase would be much easier if she would have started it when she wasn't big and squirmy. Like... when she was the size of a nine month old perhaps.

As I'm loading the groceries she starts it all over again. She is bucking and screaming and hollering because she wants me to hold her, she doesn't want to be in the car seat. Oh. My. Goodness. I had to open a bag of chips and start shoving them into her hands for her to finally stop. Dear gracious!

Anyhoo, thankfully the chips kept her occupied during the ride home. We had cereal for dinner. I had a headache. And they like it. Whatever.

(Klo and my sister Erin)

As far as the writing books part of my title goes, I am doing just that. I have no idea how to get a book published but we'll think of that a little later I suppose. It is a book that will go through my very realistic experience with Kloey. My feelings, her road bumps, our triumphs, you name it. My goal is to raise awareness. People need to know that Down Syndrome is not something to fear. People also need to know that I did fear it and it took me quite a while to come to terms with it. I am only human and those feelings were incredibly natural. I have already started said book and will be posting snippets of it throughout next month. Be excited! October is Down Syndrome Awareness month and we will be doing a blog post every. single. day!!!!!!

Much love!!!!