Another Day

Another day of October. Another day of Down syndrome. Another day of Kloey.

“When you focus on someone's disability you'll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally.” 
― Yvonne Pierre, The Day My Soul Cried: A Memoir

Having a child with DS has changed my life...
my life is brighter
my life is more wonderful
my life is filled with love

~ Lorene Kay

Kloey is a darling child who blesses my life day in and day out. It is no secret that there is an extra chromosome present in her life. But you see, it is actually an extra chromosome of love. We rejoice in it.

"I can't change that I have Down syndrome, but one thing I would change is how people think of me. I'd tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend. After all, I would do the same for you."

~ "Know Me Before You Judge Me"

How Kloey sees Kloey

Never fear... I did not forget today. I just worked insanely long today and had to do it when I got off. So today I want to talk about how Kloey sees herself. She's only two right? How could I really know that? But I really do.

 Here is my Klo Bow doing two of her favorite things. First, looking at herself in the mirror. Second, stealing my toothbrush and sucking on it. I know, I know... gross right? But think about her looking at herself. She certainly does not see Down Syndrome when she looks in the mirror. She sees Kloey. She plays with Kloey. She learns and she grows.

Everyone is a person with hopes, dreams, fears, aspirations, love, and emotions. My daughter sees herself as a little girl, nothing more and nothing less. She is not less of a person because she has Down Syndrome. She is not less of a daughter. She is not less of a sister. She is not less of a friend.

See, Klo actually loves herself on a level that most of us can't even comprehend. I can see that in her eyes and actions as she does anything that she can do just to smile at herself in the mirror. Heck, if her smile makes others so happy, why wouldn't it make her happy?

Someday Kloey will realize that she has Down Syndrome. She will realize that others believe that she is different. And she will certainly learn that some people will avoid looking into her eyes, or talking to her. However, I don't believe that will phase her very much. It will certainly affect me, but maybe not her so much. Because she loves herself. She loves people. She loves. That's what she does. And she does it well.

What you're missing

My friend texted me last night and told me about a story that she read in one of her classes. A woman was pregnant with her third child and she found out through testing that this child would have Down Syndrome. She chose to abort this child. She then went on to have two more "typical" children. My blood was boiling when she told me about this! I don't like to be judgmental but COME ON!!! Kloey's life is so precious and her part in this family is so important. So, I'm sharing a video of my sweet girl. Just to show everyone what they would be missing out on and how NOT scary it all is.

Happy day everyone!!!

How am I today...

A few days ago I posted my story of finding out that my daughter has Down Syndrome. One of my dear friends suggested that I talk about how I'm feeling now as opposed to then. And I thought that was a great idea! I would love to share and probably should!!!

At this very moment I am not struggling with her diagnosis or anything about it. But then it is a day where my thoughts are very much on other pressing matters of my life. But nowadays I am thinking about her diagnosis less and less. I remember when she was around eighteen months old was the first time that I had a day when I literally did not see the Down Syndrome in my child. I just saw my sweet baby. That was a monumental day for me. A day of great love and acceptance. You may think, geez that took her forever... but it was my battle and I finally won it.

But don't get me wrong. I still struggle with it at times. My mother and my husband can attest to that. Some nights it will just hit me, all of the struggles that she will have to overcome, the ridicule that she will face from some people, the countless times she will get sick. And on those nights I never struggle with my love for her, on the contrary it is because of my love for her that I worry and care so much about her future.

Klo gets sick a lot. I mean, A LOT!!! And that is so hard for me. It is exhausting. It is sad. And it is overwhelming. Last year she contracted whooping cough three times! That is scary and you don't sleep much when your baby is dealing with something like that. (yes, she has all of her vaccinations) And if it's not whooping cough it's something else. And sometimes the doctors won't listen to me!!!

Then there are her physical barriers. I know that she will walk and talk and what not. But let's face it, my two year old is still a baby. She crawls. She still gets a bottle. She can't feed herself very well. She doesn't talk. She has started to learn a few signs. And just a few weeks ago she learned how to pull to stand at furniture. But if you hold her hands to try to get her to stand, she won't do it.

As her mother I have tried to say that if she has Down syndrome it is only just so mild. Deep down I think there is still that feeling (well, up until recently) that I needed her to be "normal". But Klo's case isn't mild. I don't know how severe it is, but it isn't mild. She's behind. Maybe not technically in the Down syndrome charts, but in my heart.

I've learned to stay patient and accept what comes for what is supposed to be. But I still cry. I still struggle. I still worry about her future. She starts pre-school in just a year and that scares me. Children are wary of what they do not understand. I don't believe that all of them will be that way, but let's be honest, she WILL have to deal with that sort of thing. And I find myself dreading that. I find that I just want to lock her up in my snuggly arms and push that eventual day away from us.

I have lots of feelings. However, most days I am happy. She makes me so happy. Her smile is happy. Her snuggles are comforting. Her spirit fills our home with sweet warmth and love. She is my Klo Bow. My special spirit.

Camping with family... hence the dirty nails haha

What Kourtney thinks of her sister

About six months ago was the first time that I told Kourtney that her little sister has Down Syndrome. We were reading a book about a little girl who was getting a new baby brother. When that baby brother was born he was diagnosed with Down Syndrome. Kourtney looked at me and said, "Down Syndrome?" and I said, "Yes. That is what Kloey has." To which she responded, "you mean, she's different?" I was perplexed. How was I supposed to answer that question? So I said this, "Well we're all a little different from everyone else. You're not the same as me, I'm not the same as you. Kloey is a little different but really we all are." It must have been an acceptable answer because she went back to reading and the subject hasn't come up since then.

This picture is great because you can see the love in their eyes. They are sisters and very much best friends. I absolutely love it. So here is a list of what Kourtney likes to do with and for her little sister.

• Play doctor with Kloey and Daddy
• have a picnic in our room with Mommy and Kloey
• play house with Kloey
• play tea party
• I like to tickle her! AAHHHHH!!!! (her own words)
• I like reading books to Kloey
• I like to help give her a bottle
• I like changing her diaper (she totally did this by herself the other day because she thought we were too busy. Nearly died laughing)
• I like putting her pajamas on

For Kourtney there is no difference in Kloey. Klo is her little sister. She fights with her (not often but it does happen), she tickles her (AAHHH) and she takes care of her. She loves on her all of the time. Sometimes Klo even pushes her away because she is just loving on her too much. Haha. They truly are best friends.

A look back to the beginning

The post that follows is the post in which I announced to the world that my baby was diagnosed with Trisomy 21 one, or Down syndrome. Those first few months were very dark and very hard for me. It was extremely difficult to wrap my head around my new reality and I was very scared about it. So, here it is.

When I was four months pregnant I started to get the very strong feeling that I was expecting a baby with Down Syndrome. No matter how I tried to shake it, explain it away, pray it away, scream it away... it never went away. This plagued me for months and months while I was expecting our second little girl. God wouldn't challenge me like that right? No... it was just me being paranoid as ever. Nothing to worry about. Stop freaking out.

I asked the Lord for peace of mind and he granted me that for the last month of my pregnancy... probably due to all of the freakin' labor I went through... it just distracted me. Then, the day I was in hard labor the feeling came back. I just had a strong feeling that I needed to be prepared for this. So, along comes Kloey Alice. It didn't take long, 3 contractions of pushing and she was here. She didn't cry and she didn't really move. I knew. I knew right then that something wasn't right. The umbilical cord was too short so they put her on my stomach, cut it, and whisked her away. I didn't get to see her face. I kept asking if she was okay and what did she look like. When I saw her I immediately knew again. The nurses and midwife assured me that she did not have it because she simply doesn't have any of the facial features of a baby with Down Syndrome. This did not ease my worries. She was different and I knew it but I so desperately wanted to take them at their word.

I worried about it all night long. Word passed through all of the nurses that I was worried about my baby having down syndrome because of this "premonition" (as they called it) that I had throughout my pregnancy. When the nurse came in the next morning she informed me that she would let the doctor know of my concerns when he came to examine her that day. She thought that Kloey did have some signs of DS but not in her face. The pediatrician came in the next day and informed me that at first he thought, "there is just no way that this is a downs baby" but after taking a closer look he thought, "I better order chromosome testing".  I was expecting different news when he walked into my room that morning. Kloey was in the NICU due to high red blood cell count and low oxygen saturation. Therefore, she was not in there and I had not been able to bond with my baby whom I was feeling very distant from. As he explained to me that he wanted to get her tested and told me of all the features that she showed and all of the groups to help these children nowadays I think that I was somewhere very far away in my mind. I wouldn't cry, I told myself. I held it together as his words sort of floated above and around me but didn't actually fully penetrate me. My baby has Down Syndrome... I have a baby with Down Syndrome. What do I do? I know that the test hadn't even happened yet but once again, I already knew.

I held it together while the doctor was in the room.. but once he left the waterworks went into overload. My nurse was great. She had asked the doctor if I cried when he told me and he said, "well no, she took it quite well" and the nurse replied, "no, she waited until you left". So, in came my nurse with a reassuring smile and a friendly pat. I thought it was sweet. Of course, there was my supportive, almost nothing freaks him out husband of mine as well. Gosh that man can hold it together!

As the days went on I started to convince myself that she looked too normal to have Downs. Everyone, even the nurses and doctors kept telling me that it was a long shot. Kloey nursed like a champ right from the start, most ds babies have horrible sucking reflexes. Her heart sounded perfect, most ds babies have heart murmurs which signal heart defects and other problems. Then there is the fact that she looks completely normal. Her ears are not lower set. She has one eye that is slightly almond shaped but barely. She doesn't have a flatter face or really small features. She does have low muscle tone, a palmar crease on one of her hands, and her big toe separates from the rest of her toes. Those last two of her three features she inherited from Jordan and I. So one can see why I started to doubt my "premonition".

Kloey stayed in the NICU the entire time we were in the hospital. Seeing your baby hooked up to monitors and wires and tubes and then an iv in the head... how horrible! I was so sad for my baby. She was constantly being stuck and pricked and jabbed and prodded. I started to cherish the times that she needed to nurse. Bonding with my baby was (is) so wonderful. I started to feel connected to her. The entire time that I was pregnant with her I felt like she was a mystery and like I didn't feel connected to her the way that I should. That is not the case any longer.

On Friday, after finally having her overnight in our room for a "test run" we were going home. The test results hadn't come yet but I was thinking of other things. We were getting an oxygen saturation monitor, an apnea monitor, and going home with a tank of oxygen for our newborn baby. Talk about intimidating and scary. We are 20 minutes from going home when the phone in our room rings. I'm sitting with Kloey on the bed all snuggled in my arms. Jordan answers it and I knew that it wasn't family on the other end. Then I saw his face. I knew that it was about the test results. About 30 seconds later the nurse came in. She saw that Jordan was on the phone so she turned around and left. She came back a few minutes later and sat on the bed patiently waiting for Jordan to be done. I couldn't take it anymore so I looked at her and said, "It's about what I think it is, isn't it?". She looked at me, nodded, and said, "It was positive". I nodded, looked at my sweet, sleeping angel and lost it. How? Why? Are you serious? Now what? The first words out of my mouth were "I love you" and the first thing that I did was kiss my new baby. I remember promising in my heart that I would do EVERYTHING in my power to teach her, protect her, love her, and help her to reach her absolute FULL potential. The doctors and nurses were so great and supportive. They sent us home with a book, numbers, websites, etc. Her pediatrician takes very good care of her and shows a great amount of interest in helping us through this and giving us all of the resources that he can. He's like a big Grandpa taking care of his grandchild. That's what it feels like. He doesn't have to do all that he is doing.

Since finding out I've had many different emotions. I am surprised to see how I've reacted to my baby. Throughout my pregnancy I thought that if I had a child with this syndrome that I would feel unattached and distant. That is definitely not the case. This child is an angel. We love her so much. Kourtney loves her dearly. Our families have been wonderful in their reactions. Our mothers have been beyond wonderful in their help, understanding, and desire to learn more about their new granddaughter. We feel so blessed to be so loved. We feel so blessed that our child is so loved and accepted by our very special families. My mother has been my biggest support. Calling me three times a day, telling me of her research and finds of that day, ordering me books, and telling me that she just can't wait to meet the new special spirit of my family. How grateful I am for everyone's support and love.

As far as me.. I'm okay. I go through my moments of "What will I do when she wants to do this or that.... what do I tell her when she wants to get married... what do I do... what do I do.... what do I do...." I know that some of these children grow up to lead pretty normal lives. I do believe that Kloey's case is mild. But I do not know yet what the future has in store for her. I do know that I am going to do everything in my power to teach her the gospel and help her grow into everything that she is capable of becoming. I have two very sweet and amazing daughters. I must not forget that. And people must not think that I feel otherwise. I love my children more than life itself.

Stellar spirits

If you are a Latter Day Saint (mormon) like myself, you will have possibly heard Elder Russel M. Nelson say this, "Stellar spirits are often housed in imperfect bodies". And really, we obviously know that this is true. And it is something that is widely misunderstood. People believe that being "normal" is the way to be. And quite frankly I am a little jealous of my Klo. Let's face it, I wish that I could be so happy, spiritual, and protected from many worldly things. It is true that Kloey will experience her fair share of ridicule and resentments and just plain ignorance from others, but she will continue to have that "stellar spirit". 

When I was pregnant with Kloey, while I was very afraid, I was also very calm and peaceful. When I was pregnant with Kourtney I was kind of a crazy hormonal witch, very opinionated and very stubborn. Kourtney turned out to be a real challenge of my patience, very opinionated and very stubborn. See where I'm going with this? While pregnant with Klo I was kind (for the most part), loving, gentle, and soft spoken. And trust me, I am not normally that way. Turns out, Kloey is exactly that way.

People are drawn to her. It's like she's a celebrity when we go out in public. Random people will want to come up, smile at her, say hello, touch her, and love her. They don't personally know her, but they tend to recognize how special she is. Not every encounter we've had is positive of course, but a lot of them are.

Heavenly Father has a special place in his heart for these "stellar spirits...housed in imperfect bodies". I know that with everything that I am. I have been entrusted with one of these stellar spirits. And I am eternally grateful for that. Much love everyone!!!