I'm so late tonight....

(From when my Kloey was just 3 months old)

I was reading in this book that my mother sent to me called, Gifts:Mothers Reflect on How Children With Down Syndrome Enrich Their Lives. It is a compilation of stories from women all over the place that have at least one child with down syndrome and how they feel about it and cope with it. One of the mothers shared a story about a couple who had their first baby. The doctor came in and informed them that the baby had Down Syndrome and esophageal problems. He was going to require surgery that had a mortality rate of 50%. He then said that children "like this" never amount to anything and become mere blobs so the surgery really would be for no reason. Basically it wasn't worth trying to save this child. AND THE PARENTS LISTENED TO HIM!!! They decided to not only not do the surgery but to withhold all nourishment. STARVE THEIR CHILD! The case went to trial and all the way up to the supreme court. Rather than say that the child had a right to go to a family that wanted to adopt it they ruled in favor of the parents' decision. The newborn baby boy was never given a name, never held tenderly by anyone that would love him, and never fed. He was put into isolation and starved. He died 7 days after birth. Because he was different he was killed. Are there really people out there that are so afraid of something/someone different that they would rather them die?!!

I know that this story is very sad and I do try to stay away from that on my blog but some things I feel just need to be shared. Of the women that get a positive prenatal test for down syndrome almost 90% of those women will choose to terminate their pregnancy. I found this extremely shocking.

My child is a joy. She reminds me a lot of my first daughter. Kourtney absolutely adores her little sister. She looks darling in her little clothes and we all enjoy dressing her up and putting flowers in her "hair". She calms at my touch and the sound of my voice. She eats like a little piggy sometimes. She has helped us to realize that different is good.. and pretty much the same. Different is not something to fear. Different is something to learn from. Take what is "different" and choose to grow from it. Choose to be the DIFFERENCE in a world that is so afraid of "different".

Sometimes she's my favorite

Our Kloey fills our home with sunshine. That is not an exaggeration. Since the day that we brought her home we knew that she was different than most children in the most wonderful sense. As a baby she was so quiet, calm, and peaceful. She hardly ever cried and when she did it was so sweet and so quiet that it was more pleasant to hear, really. And even though I did struggle a lot in the first year of her life, my all time FAVORITE thing to do was hold her, kiss her, and snuggle her. 

And I STILL feel that way!!! I'm not gonna lie, I love coming home to this child everyday. After a long day at school I know that when I open my door Kloey will be there to run towards me with a giant smile and arms wide open. I know that when I play the ukulele and sing she will (most of the time) join in and applaud very enthusiastically at the end. If I want to have a random dance party in the kitchen during meal prep, Kloey is my girl. And when I am sad or crying she is the first person to come up to me, rub my back, and tell me it's okay.

Kloey is unconditional love. Even when I have to discipline her (shocking, but she does indeed need it at times) she is always right back to being my best friend. It's true, she has her own fits and moments of beating up little brother. But they aren't many and most of the time they really don't last long at all. She is not perfect. We have plenty of struggles. But personality wise, this girl's got it down!!!!

She fills my heart with joy and love every single day. She reaches out to anyone she sees that is in need. She smiles a majority of the time. She is one of my best friends.

Because I always need encouragement

Here we continue with the fabulous month dedicated to such a special population of people... the community of Down Syndrome. OH, how I just loooove to be included in this fantastic group of people. To anyone that may be reading this because you are expecting a child with Down Syndrome and you just don't know what to do... I say this.

1. Your child is your child. The bond that you have felt with them so far does not change just because an extra chromosome has been thrown into the mix.
2. I know what it feels like to be so afraid of the unknown. I was just there. There are so many questions surrounding this new bundle of joy and so much apprehension.
3. The fear of the unknown is by far easier to deal with than the idea of losing the soul that you have created... the person that is FOREVER a part of who you are.
4. There is absolutely nothing that can prepare you for the pure joy and love that will fill your heart to an overwhelming extent each and every time you look at your new angel.
5. That pure love and joy will be radiating 10 times more from their eyes when they look at you (if that's even possible since your love is so overwhelmingly full).
6. You will learn. You will learn about patience. You will learn about unconditional love. You will learn about sacrifice. You will learn about acceptance. You will learn about life.
7. People will stare. People will question. People may be cruel. But then, those people do not matter and they do not belong in your life.
8. More so you will find that people will be kind and fall madly in love with your child.
9. You will cry sometimes. You will cry because you are sad. You will cry because you've got a long road ahead of you. You will cry because you are so very thankful to have been blessed with your sweet angel. You will cry because you are so proud of their accomplishments. You will cry because you could never imagine a life without them in it.
10. Strength. You will gain strength. More than you ever knew was possible. You CAN do this. It is so wonderful.

 Klo Bow and proud big sister Kourtney.

My Klo Bow sitting up all by herself. So proud of her. First time sitting up: 13 months old.

It was all so slow.....

Most definitely, the thing that surprised me the most was how slow the progress was with Kloey. We had to teach her how to do EVERYTHING. Every. Little. Thing. That was so hard for us to get used to. The very first thing that we worked on was getting her to hold her head up. She did that at 4 or 5 months, I believe. That was our first celebrated milestone.

We then started working on her next big milestone: holding her bottle by herself. This one took her forever! She finally got that at around 9 or 10 months. At the same time we were working on sitting up. She finally mastered that one at a little over a year.

Crawling came much later. She crawled when she was almost 2 years old. However, she did start playing games a little bit sooner than that. I tell you, it was so nice when she started to discover her own personality. She made up a little "dive and snuggle" game when she was about 18 months old and she STILL plays it with us to this day!!! She still makes the same face when she cries as she did when she was a newborn too.

Klo finally walked when she was 3 1/2 years old, consistently anyway. She technically took her first steps when she was just about 3. She just mastered climbing the stairs a couple of weeks ago, at age 5. She is now working on walking backwards, jumping, writing her name, recognizing letters, and pretty much everything to do with talking. She doesn't talk very well. But those of us that live with her get most of what she's saying.

For those of you that have followed my blog for the last few years, you probably realize that these first few posts may not be as fun, feeling, or witty as my posts normally are. Hang in there, we'll get to those. We've got an entire month, after all. But I do have a reason for these posts. I am hoping that this timeline, this history, might help someone. I know that if I had been able to read this when Kloey was a baby/toddler it would have helped me immensely. So, I hope that someone out there will find this comforting and helpful.

Our Bond

When I was pregnant with Kloey I had a very hard time feeling any deep connection to her. I didn't know her; I didn't know for sure that she had down syndrome. For some reason I struggled with this and I never did with Kourtney so it was a very new experience for me.

But I will never forget the love and overwhelming sense of protection that I got when I found out for sure that she had down syndrome. Isn't that funny? The thing that I was so incredibly afraid of throughout my whole pregnancy had just come to fruition and I reacted in the exact opposite way that I thought I would. Kloey was mine. Period. And that meant that it was now my time to hit the ground running and give her the best life I could.

Luckily, we all felt that way. Initially, I was nervous about how Kourtney would react to Kloey when we brought her home. But she didn't even notice (of course she didn't, she was 3) and she was just super excited to have her baby home. Since day one Kourtney has been phenomenal with Kloey. Sibling rivalry wasn't even a thing in our home until Joseph came along and took Kloey's "baby" status from her. And to this day Kourtney works hard with her little sister and explains to strangers or friends that her sister has down syndrome... and you better not have a problem with that.

Jordan went through a bit of depression after Kloey was born. It wasn't anything huge and I know that he is okay with me sharing that because I'm pretty open about my own struggles. Despite that small amount of time he came to be our rock. I've never seen a man love his children so much and it is absolutely NO different with our Kloey. He is the light of her life. In fact, she calls us both "Daddy". She won't bother to say mommy but she's got daddy down just fine!!!

Joseph is her best friend now... but we'll get to that a little further in our history since he came 3 years after she did. :)

But what are the first steps....

Bringing Kloey home was a challenge. I was incredibly overwhelmed by her diagnosis and I was incredibly intimidated by the oxygen tank and sat monitor. I remember those first couple of months of incredible anxiety and constantly waking up to make sure she was still breathing. We were very tired to say the least.

I think we were caught in a whirlwind of uncertainty and endless information and advice. Two weeks after she was born the therapists were contacting us, wanting to start right away. I thought, "therapy? That's crazy. She's only two weeks old, what could they possibly work on?" It began with evaluations, tests, and scores for my newborn. I didn't think much of it. Do you know why? Because that time was a little bit numb for me. 

But there was another side to my emotions and it's much happier. I absolutely adored my daughter. Was I crushed? Yes. Was I overwhelmed? Absolutely. Was I scared? I was terrified. But she was literally the BEST baby in the world. Kloey just emanated love and a sense of calm. If I was holding her I could feel so much love around me and I knew that somehow, eventually everything was going to be okay, that it would all be right in the end. I knew that I wasn't afraid of her. And I knew that I was completely in love with her. 

Do you know she was my only baby that took to nursing like she'd been doing it forever? Seriously. We had an amazing breastfeeding experience, she and I. She slept through the night from six weeks on. Now, my other two were frustrating nursers; we had a difficult time. They also did not EVER sleep through the night in their first year of life. It took our oldest four years to start consistently sleeping through the night. Geesh! 

I loved being around my little baby Kloey. I loved holding her, sleeping with her in my arms, nursing her, watching her sleep, just everything. Because when I looked at Kloey I was really looking at perfection.

Down Syndrome Awareness

I haven't blogged for a while and I'm admittedly quite out of practice. Maybe my words don't mean as much to you as they do to me, maybe they mean more. Maybe you'll read my blog and maybe you won't. I don't know. But I do know that I have something to say and I have a way to say it.

Down Syndrome is an inevitable and permanent part of my life. It has been for 5 years now. More accurately put: my daughter is an inevitable and permanent part of my life and she has been for 5 years now. If you will, look at the picture above and think about what you see there. I don't know what you see. But I can tell you what is there. That is me holding my baby for the first time since she had been put in the NICU the previous day. I had only held her once before that right after she was born. This picture is one of an emotionally distressed and incredibly exhausted (28 hours of labor, folks) mother of a newborn baby girl... a newborn baby girl with down syndrome. In this picture I am plagued with horribly conflicting emotions. My love for Kloey has known no bounds since the moment she was born. But my fear and anguish at the thought of what my life and her life now meant was overwhelming. I was terrified. But she needed me. So, my life with the inclusion of down syndrome began.

Family and friends rallied around us with love, congratulations, and support but they failed to realize one thing. I was drowning inside. My new reality was sinking me and I feel no shame in admitting that now but back then was a different story. She was my baby and I was supposed to be so happy and feel so blessed for such a special spirit as her, that's what I kept hearing. While I did feel that, I also felt suffocated, like I couldn't catch my breath. Life was running full speed ahead and I was still one mile behind trying to get the stitch out of my ribs.

It honestly felt as if I'd never be able to look at my beautiful child without seeing her extra chromosome and feeling immensely sad and guilty at the same time.....