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!!!
My name is Stephanie. Welcome to my blog! A blog that keeps up with my life as a stay at home mother to two beautiful little girls. My youngest daughter, Kloey, has Down Syndrome. As this is something that is pretty big in my life, I like to write about it. All children are a blessing. Plain and simple. This blog is here to show just that. Much love. And happy reading.
Wednesday, October 31, 2012
Tuesday, October 30, 2012
Just 2 left?
I really want to say how much I appreciate everyone that has been keeping up with us during this wonderful Down Syndrome Awareness Month. This has been a great opportunity to let everyone in on our life with our two wonderful daughters. Tomorrow I hope to have something extra special for the final day of this October.
So, today we shall talk about a typical day in the life of Kloey.
So, today we shall talk about a typical day in the life of Kloey.
- she wakes up
- She eats; she is still getting most of her calories from bottles as eating is a bit tough for her.
- She watches Baby Einstein (or goes back to sleep)
- She gets up and plays with big sister
- They play with blocks and dolls and she pulls sister's hair and sister sometimes pushes her over when she pulls her hair... but only in an attempt to stop her
- We eat lunch: it could be a pb sandwich, eggs, spaghetti, yogurt, whatever.
- During lunch she voices her protests very loudly if I even attempt to help her. She is very independent.
- Then, if God is gracious that day, she and big sister nap at the same time.
- She wakes up to Mommy snuggles and more play time.
- Some days she will have her play therapist come over and some days she will have her physical therapist come over. When she wants them to leave she will most certainly let them know.
- If she wants to get to something or somewhere... she will roll.... 'cuz that's how she rolls... eeehhhh!!!!
- Then she gets tired of playing and wants me to hold her... for the rest of the night!
- Dinner rolls around and she will either eat what we're having or drink a bottle.
- Some days we get a bath.
- She joins us for scripture study.
- Then family prayer
- Hugs and kisses
- Good night!
So, really her typical day is not a whole lot different from any other typical child. Honestly, her therapy is more like play. They're pretty sneaky with the learning. Kloey is 15 months old. Her sister was walking and almost talking by 15 months, this is true. But, don't we always say that our babies grow up too quickly? Blink your eyes and it's gone? Wouldn't we love to have a little more time with them before they get big and grumpy and all independent and sassy? We always say so. For us it is so. We get to keep Klo Bow little for a while and I am just pleased as punch. This is something that I thought would be so hard for me and really, I just love it. Sometimes, it IS hard. But a lot of times I get to learn about patience. We get to be reminded everyday that every child is different. Every child is unique. You cannot compare one child to another because that is not fair. Kloey decided that she wanted to come into this world and do things at her own pace... and we just get to go right along with her... and enjoy the journey.
These wonderful pictures compliments of my wonderful sister in law Mindy Lamprecht.
Check her out ;) Mindy Sue Photography
3 to go... Jordan's turn!
Hello readers, my name is Jordan Hansen, the husband of the wonderful Stephanie. She really is an incredible woman, someone that I and many others look up to. My favorite thing about her is her humility, she has never once thought herself better than another. She's always so overjoyed by those of you who follow and read her blog, and who have just been there for her. As this month comes to a close, down syndrome awareness month does too, but please don't think it's the end of Stephanie's uplifting, loving thoughts. This is just the first spark of a large fire that will continue to bring to light worlds of information on many subjects. I am so lucky to have such a wonderful woman build me up and put up with me! I often tell people that there is no way I could ever separate myself from her, because there's no other woman in the world that would deal with my off the wall-ness, and sometimes just plain ludracrasity. Lucky for her I get to put up with her's too. And now we have to put up with our two little clones!
Kourtney, our oldest little creation of perfection has given us a marathon for our money. What a darling, and stubborn as can be. I truly believe that our Heavenly Father and Creator, decided that Kloey needed a protector in her life, especially because it seems things can be even worse for these little angels. People can be ill-informed, careless, and just plain harsh when it comes to talking about and even to a person with an extra chromosome. I know that with an adoring loving big sister, she will have a chance to enjoy this world, and help others to also come to an understanding of her. She's never had baby jealousy or shown any kind of resentment towards her. since day one it's been wanting to hold, snuggle and love her. She doesn't even like to go to sleep without her in the same room. I know this will never change, and am so grateful for her. I'm not saying every sibling is going to be this accepting of this challenge, but I do know that there is potential for both the child and its siblings to have a lifelong friend, companion, and confidant.
Uninformed. That was, is still, and will always be me. For this I'm assuming could be a reason you're here. Thank you so much for learning and getting to know this seemingly secret world of pure joy. I was always under the impression growing up that all of the downs kids just liked to be in their own class, learning at their own slow pace, away from everyone and by themselves. First thing I realized: Downs people are not just in "their own" category. They're just like you and me, and want to be considered as such. they can and do learn, they can and do interact, they can and do laugh, and love, just like everyone else, even more-so I've also come to realize! they work harder than any of us and would surpass us in any challenge if we put as much effort as they did into making a challenge a success. I'm convinced the only person that would make fun of, not include, or not just completely fall in love with a person with DS is someone who hasn't taken time to get to know them. Ironically enough, if the abortion rates were not so high for them, there'd be more than 9 times the amount of love and understanding going throughout the world than there is now. Many people abort for that reason alone, that they feel they will be alienated by their family and friends. If that be the case, are these the kind of people you want surrounding you?
My parents got to spend an evening with our two girls and had a wonderful time. My Dad who has been learning just as I have been, thought up something very clever to say in the meeting of another parent of a person with trisomy 21. He decided that when he saw such a parent instead of others usual comments like, "I'm sorry to hear that", or "that's so hard", he'd say "You must have done something very wonderful to deserve a baby with down syndrome." These were some of the sweetest words I've ever heard my dad say.
During Steph's pregnancy with Kloey I decided to get to know a little bit about trisomy 21 and it wasn't easing my worry a lot. A lot of the problem was, is, that I had just been reading statistics, and numbers, and doctors thoughts. I never really got to learn from an actual parent the joys that are waiting to come from them. They have unconditional love, a smile that could melt the ugliest frowny face, and a personality you can't help but want to be around. Also, please do remember that each one of them is different between themselves and those who weren't blessed with an extra chromosome. Their personality's tolerances, interests, and desires are all different, just like ours. Down syndrome is not what Kloey is, It's part of who she is. Steph thought of that saying and it's so true. I was honestly never very scared, just a little wary and more worried for my wife. As soon as that baby came out though, that worry diminished, and I knew their bond was eternal. God had made a plan for this family since before we were even around. We had all known each other before this life, and that bond was just re-realized. Our Kourtney bear proved that there was no need to have fear or worry, with her instant bond to Kloey.
Sorry for the very long and late entry, I hope it helped someone. Please refer your friends and loved ones here, even if they have no direct affiliation a a person enjoying down syndrome. We love you all and wish that you'll continue to join us on our crazy family adventures that are only just beginning.
God bless!
* Jordan Hansen (The one she puts up with)
Kourtney, our oldest little creation of perfection has given us a marathon for our money. What a darling, and stubborn as can be. I truly believe that our Heavenly Father and Creator, decided that Kloey needed a protector in her life, especially because it seems things can be even worse for these little angels. People can be ill-informed, careless, and just plain harsh when it comes to talking about and even to a person with an extra chromosome. I know that with an adoring loving big sister, she will have a chance to enjoy this world, and help others to also come to an understanding of her. She's never had baby jealousy or shown any kind of resentment towards her. since day one it's been wanting to hold, snuggle and love her. She doesn't even like to go to sleep without her in the same room. I know this will never change, and am so grateful for her. I'm not saying every sibling is going to be this accepting of this challenge, but I do know that there is potential for both the child and its siblings to have a lifelong friend, companion, and confidant.
Uninformed. That was, is still, and will always be me. For this I'm assuming could be a reason you're here. Thank you so much for learning and getting to know this seemingly secret world of pure joy. I was always under the impression growing up that all of the downs kids just liked to be in their own class, learning at their own slow pace, away from everyone and by themselves. First thing I realized: Downs people are not just in "their own" category. They're just like you and me, and want to be considered as such. they can and do learn, they can and do interact, they can and do laugh, and love, just like everyone else, even more-so I've also come to realize! they work harder than any of us and would surpass us in any challenge if we put as much effort as they did into making a challenge a success. I'm convinced the only person that would make fun of, not include, or not just completely fall in love with a person with DS is someone who hasn't taken time to get to know them. Ironically enough, if the abortion rates were not so high for them, there'd be more than 9 times the amount of love and understanding going throughout the world than there is now. Many people abort for that reason alone, that they feel they will be alienated by their family and friends. If that be the case, are these the kind of people you want surrounding you?
My parents got to spend an evening with our two girls and had a wonderful time. My Dad who has been learning just as I have been, thought up something very clever to say in the meeting of another parent of a person with trisomy 21. He decided that when he saw such a parent instead of others usual comments like, "I'm sorry to hear that", or "that's so hard", he'd say "You must have done something very wonderful to deserve a baby with down syndrome." These were some of the sweetest words I've ever heard my dad say.
During Steph's pregnancy with Kloey I decided to get to know a little bit about trisomy 21 and it wasn't easing my worry a lot. A lot of the problem was, is, that I had just been reading statistics, and numbers, and doctors thoughts. I never really got to learn from an actual parent the joys that are waiting to come from them. They have unconditional love, a smile that could melt the ugliest frowny face, and a personality you can't help but want to be around. Also, please do remember that each one of them is different between themselves and those who weren't blessed with an extra chromosome. Their personality's tolerances, interests, and desires are all different, just like ours. Down syndrome is not what Kloey is, It's part of who she is. Steph thought of that saying and it's so true. I was honestly never very scared, just a little wary and more worried for my wife. As soon as that baby came out though, that worry diminished, and I knew their bond was eternal. God had made a plan for this family since before we were even around. We had all known each other before this life, and that bond was just re-realized. Our Kourtney bear proved that there was no need to have fear or worry, with her instant bond to Kloey.
Sorry for the very long and late entry, I hope it helped someone. Please refer your friends and loved ones here, even if they have no direct affiliation a a person enjoying down syndrome. We love you all and wish that you'll continue to join us on our crazy family adventures that are only just beginning.
God bless!
* Jordan Hansen (The one she puts up with)
Sunday, October 28, 2012
4 days left in OctOBeR!!!
Oh, how I miss my pictures. But my words will have to do until tomorrow at least. So hello again. It was a SUPER long night for us over here in Provo, Utah. Cleaning our apartment took forever long. But now it is completely spotless and ready for the new peoples.
Our children have been with their grandparents for the past two nights while we've been packing and cleaning. It's funny... it is nice to be able to sleep through the night and not worry about them waking up and needing something but, when morning comes we find that we miss them terribly. Guess it's good to know that you love your kids enough to miss them :)
Going along with the above, I wanted to focus today on my love for Kloey. Of course I love her, but I wasn't always so sure that I would. When I was pregnant I was more afraid of her than in love with her. Every day I prayed and prayed and prayed that my feelings about her were wrong. That I was going to give birth to another little Kourtney... a beautiful, perfect, typical baby just like Kourtney. I didn't want the "imperfect" baby. I didn't want the extra work. I didn't want the questions. I didn't want that child. Sad to say, but true nonetheless.
Fast forward to now, because you all know my story. If you don't you can read it here. Now, I wake up every morning and I NEED to see her. If she is not there my day is not complete. Her happiness is so contagious. Her smiles brighten any day. When people babysit her they don't want to give her back. I cannot imagine my life without her. I really really can't and I really really don't want to. Not at all. And the same goes for her extra chromosome. Take that away and Kloey would not be Kloey. She is who she is... and I LOVE who she is!!! I LOVE HER I LOVE HER I LOVE HER!!!! And now I don't HAVE to tell people... but I GET to tell people;
MY BABY GIRL HAS DOWN SYNDROME! AND WE LOVE HER MORE THAN LIFE ITSELF!!!!
Our children have been with their grandparents for the past two nights while we've been packing and cleaning. It's funny... it is nice to be able to sleep through the night and not worry about them waking up and needing something but, when morning comes we find that we miss them terribly. Guess it's good to know that you love your kids enough to miss them :)
Going along with the above, I wanted to focus today on my love for Kloey. Of course I love her, but I wasn't always so sure that I would. When I was pregnant I was more afraid of her than in love with her. Every day I prayed and prayed and prayed that my feelings about her were wrong. That I was going to give birth to another little Kourtney... a beautiful, perfect, typical baby just like Kourtney. I didn't want the "imperfect" baby. I didn't want the extra work. I didn't want the questions. I didn't want that child. Sad to say, but true nonetheless.
Fast forward to now, because you all know my story. If you don't you can read it here. Now, I wake up every morning and I NEED to see her. If she is not there my day is not complete. Her happiness is so contagious. Her smiles brighten any day. When people babysit her they don't want to give her back. I cannot imagine my life without her. I really really can't and I really really don't want to. Not at all. And the same goes for her extra chromosome. Take that away and Kloey would not be Kloey. She is who she is... and I LOVE who she is!!! I LOVE HER I LOVE HER I LOVE HER!!!! And now I don't HAVE to tell people... but I GET to tell people;
MY BABY GIRL HAS DOWN SYNDROME! AND WE LOVE HER MORE THAN LIFE ITSELF!!!!
Saturday, October 27, 2012
hello all! 5 days left!!!!
Howdy to all of our friends out there joining us for this wonderful Down Syndrome Awareness Month! Five more entries to go. What to talk about today??? Well, with a move that is not completely done and me being completely exhausted I really have no idea. But here goes...
Let's talk about the fact that everyone has parents. Random, I know... just go with it. Really though, it's true. When I was in school and I would see the special ed class walking by I remember always sticking up for them when they were picked on. Because that happened a lot. I just never thought about how their parents most likely felt about what their children had to face in this world full of misunderstandings. Now, I am one of those parents. Now, I realize that as much as those children were hurt by those other children's rude remarks and tormenting their parents probably felt it more than they did. They will always carry their children's burdens on THEIR shoulders. Just remember that. No matter what the person looks like, acts like, does do, doesn't do... they are people JUST like you. Their mommy and daddy love them... and want to protect them. I know I do.
Much love. Sorry no pics tonight. I do not have my beloved computer :(
Until tomorrow.
Let's talk about the fact that everyone has parents. Random, I know... just go with it. Really though, it's true. When I was in school and I would see the special ed class walking by I remember always sticking up for them when they were picked on. Because that happened a lot. I just never thought about how their parents most likely felt about what their children had to face in this world full of misunderstandings. Now, I am one of those parents. Now, I realize that as much as those children were hurt by those other children's rude remarks and tormenting their parents probably felt it more than they did. They will always carry their children's burdens on THEIR shoulders. Just remember that. No matter what the person looks like, acts like, does do, doesn't do... they are people JUST like you. Their mommy and daddy love them... and want to protect them. I know I do.
Much love. Sorry no pics tonight. I do not have my beloved computer :(
Until tomorrow.
Friday, October 26, 2012
6 - More Moving day
Down Syndrome Awareness month continued. Kloey is now getting up on hands and knees all the time. She loves it so much, that she does it as much as she can. We are in the middle of a move, so sharing pictures tonight.
Enjoy!!
Pretty in pink!!
Playing with Cousin Anna!!
Aunt Rachael!!!
Cousin Alicia is such a Mother Hen!!
Walk with Angels!!
Playing with Mommy!!
Our walk to Bridal Veil Falls!!
This was a great day!!
Enjoy!!
Pretty in pink!!
Going to Church with Nana!!
Playing with Cousin Anna!!
Aunt Rachael!!!
Cousin Alicia is such a Mother Hen!!
Walk with Angels!!
Playing with Mommy!!
Our walk to Bridal Veil Falls!!
This was a great day!!
Thursday, October 25, 2012
Just seven more?!!!
Wow. I cannot believe that we are down to just one week of posts for the lovely Down Syndrome Awareness Month. What I can say is that I will take a break from blogging for a bit after this week is finished. What with a move and all... I think I will need to focus on putting my household together. Boy am I a bit stressed.
Anyhoo. So, I think that today I will focus on how people with Downs feel about having Downs. I know that the common tendency is to think, "oh, how sad for them". But really... it's not sad. Do they look sad? Do they look miserable? Heck no! Jordan's father shared with me a very touching story when Kloey was about 3 weeks old. He said that there was a teenage girl attending their church that had Down Syndrome. One Sunday she got up to speak in the meeting. She began her talk with this simple statement, "I am glad I am me". In that moment I realized something. I realized that Kloey is happy to be Kloey. Just as Tiffany Mae (I was her camp counselor when I was a teenager) was thrilled to be Tiffany Mae.
People may think that those that have Down Syndrome are not mature.. they're not smart... they don't understand... they have a hard time dealing with things.... they are too different... and so on. But they don't think that. They are simply who they are. They, like all of us, try to do their best and be their best. No one should be unhappy because they are who they are. We should all be grateful for the talents and abilities that we have been blessed with. No two people are alike. It is important to remember that. Do not be sad for someone that you think is less fortunate than yourself. Whether it's an extra chromosome, a physical disability or what have you... they are happy to be them. Be happy they are them. Be happy you are you. Be happy that everyone in this world is unique.
Anyhoo. So, I think that today I will focus on how people with Downs feel about having Downs. I know that the common tendency is to think, "oh, how sad for them". But really... it's not sad. Do they look sad? Do they look miserable? Heck no! Jordan's father shared with me a very touching story when Kloey was about 3 weeks old. He said that there was a teenage girl attending their church that had Down Syndrome. One Sunday she got up to speak in the meeting. She began her talk with this simple statement, "I am glad I am me". In that moment I realized something. I realized that Kloey is happy to be Kloey. Just as Tiffany Mae (I was her camp counselor when I was a teenager) was thrilled to be Tiffany Mae.
People may think that those that have Down Syndrome are not mature.. they're not smart... they don't understand... they have a hard time dealing with things.... they are too different... and so on. But they don't think that. They are simply who they are. They, like all of us, try to do their best and be their best. No one should be unhappy because they are who they are. We should all be grateful for the talents and abilities that we have been blessed with. No two people are alike. It is important to remember that. Do not be sad for someone that you think is less fortunate than yourself. Whether it's an extra chromosome, a physical disability or what have you... they are happy to be them. Be happy they are them. Be happy you are you. Be happy that everyone in this world is unique.
Wednesday, October 24, 2012
8 More --- Nana's story
First of all, I would just like to say that I feel quite privileged to have this opportunity to be a part of this "story". Anyone who knows me, knows that my Grandchildren are the light of my life. I love spending time reading, playing, baking, just about anything with them.
The story with Kloey began when Steph was pregnant with her. (Some of this Steph is just going to learn through this blog) She had talked to me on the phone about some of her fears, and I remember telling her that it was pretty normal to have fears about your unborn baby. She and Kourtney came for a visit when she was about 6 months along, and she had been having troubling thoughts and feelings. I told her that she should pray about these feelings, because there are some questions that only Heavenly Father could answer. Of course I knew that is exactly what she would do. I had then talked with Steph again, and she was very overwhelmed by these thoughts of DS. She had prayed, but was not scared. I became increasingly concerned for Steph, and began to pray. I remember the night Kloey was born, (the only Grandchild whose birth I had not been there for) it was a long night. I sat on the phone most of it while on speaker phone. Very different. Steph had said to me, "Mom something is not right with her, and they keep telling me that they don't see anything". So Ran and I prayed some more, so that I would know how to guide and help our Daughter. A few days later after tests results had come back, sure enough she has DS. I kept telling myself "Be strong for her, she needs you to be strong!" All I wanted to do was hold my baby, and hers. I knew that I loved her beyond measure, but I was very worried about MY daughter. I had NO doubt that she loved Kloey, but I did know that she was grieving. I would listen and encourage her, and then get off the phone and fall apart. Ran and I would pray, and I would cry. I did not fall apart because my Grandbaby had DS, I fell apart for my baby. I had been reading up on what Parents go through, and I knew that she needed me. I HATED being so far away. She and I would talk many times a day. I knew in my heart that Kloey had the best Parents EVER! I just needed Steph to know it. There was never any question that our family would be accepting. One thing about us is that we love one another through thick and thin, and when one is in need everyone gathers around them. We may have been far away, but only by miles.
I could not wait to meet my new Grandbaby! I needed more than anything to hold her, and to love her. Mostly to be with my Daughter. I can not put into words the feelings of helplessness and longing to be with her. Of all the situations that she had been in, I was ALWAYS there. Now here she was going through this, and I could not be with her. I began researching and buying books, anything that I could think of to help her. Mostly...praying...praying...praying...! Over this past year, and a few visits, I never thought that I could be more proud of her. Her desire is to help her Daughter, love her, and teach her just like Kourtney. I know my Daughter, she is strong, she will be a wonderful Mother to both of her children. I feel so honored to be Kloey's Nana, and so honored to BE a Nana.
Now I get to share some pics. Hope you enjoy them, as they are just some candid shots of family.
Tuesday, October 23, 2012
Only NinE...
So there are nine more Down Syndrome Awareness entries to go (including this one). This momma is sick today. Kourtney brought home another bug and that means I got it too. Boo! So enjoy this video of the girlies playing together. Just goes to show... Down Syndrome or not... sisters will be sisters :)
Monday, October 22, 2012
10 left... wow
So, Jordan was going to blog tonight but we are so crazy busy with our move being just five days away. (AAAHHHHH!!!!!!) I'm stressed to the max. So ready for it to be done and over with.
To continue with Down Syndrome Awareness month I wanted to focus today on the bond between Kloey and big sister Kourtney. From the moment Kourtney saw Kloey there was instant love. And it just keeps growing and growing. She never acted out or tried to hurt the baby. In fact, Kloey has been a very safe zone for her. She has a calming effect on Kourtney. Sometimes they're in their own little love bubble.
Kourtney has told me some of her favorite things about her baby sister:
I like to pway wif Kwoey
I like to share food
I just feed Kwoey milk
I like to tickle her
We share toys
I love her lots and lots!!!
When Kourtney walks into the room Kloey's whole world lights up! She already watches Kourtney's every move. She craves Kourtney's attention.
When Kloey wakes up and I bring her upstairs Kourtney says things like, "Oh, there she is!" and runs up and asks to hold her. She loves sitting down and "sharing" toys with her (it's a work in progress). And she loves talking about her.
I love how much they love each other. I admit that I didn't know what it would be like. I was nervous that Kourtney would start to act out. But, we are blessed with two wonderful and beautiful daughters who love each other VERY much!!!
(Please excuse the mess in the pictures... as I said, we are in the middle of a move)
To continue with Down Syndrome Awareness month I wanted to focus today on the bond between Kloey and big sister Kourtney. From the moment Kourtney saw Kloey there was instant love. And it just keeps growing and growing. She never acted out or tried to hurt the baby. In fact, Kloey has been a very safe zone for her. She has a calming effect on Kourtney. Sometimes they're in their own little love bubble.
Kourtney has told me some of her favorite things about her baby sister:
I like to pway wif Kwoey
I like to share food
I just feed Kwoey milk
I like to tickle her
We share toys
I love her lots and lots!!!
When Kourtney walks into the room Kloey's whole world lights up! She already watches Kourtney's every move. She craves Kourtney's attention.
When Kloey wakes up and I bring her upstairs Kourtney says things like, "Oh, there she is!" and runs up and asks to hold her. She loves sitting down and "sharing" toys with her (it's a work in progress). And she loves talking about her.
I love how much they love each other. I admit that I didn't know what it would be like. I was nervous that Kourtney would start to act out. But, we are blessed with two wonderful and beautiful daughters who love each other VERY much!!!
(Please excuse the mess in the pictures... as I said, we are in the middle of a move)
Sunday, October 21, 2012
11 to go... Let's be lazy.
11 more posts for Down Syndrome Awareness my friends. I have a headache today... so without further ado... let's look at some pictures.
Klo Bow Pretty Eyes
Happy Birthday Kloey!!!
Snuggly with Daddy.
Corn Teepee with the girls!
General Conference on Temple Square
Smiley Pie
Even more smiley!
Their favorite part was the fountain.
When a child joins your family they are loved. Period. Down Syndrome does not change that. Our family is MORE complete because Kloey Alice has joined us! We love you sweet baby!!!! ... AND your extra chromosome!!!
Happy Birthday Kloey!!!
Snuggly with Daddy.
Corn Teepee with the girls!
General Conference on Temple Square
Smiley Pie
Even more smiley!
Their favorite part was the fountain.
When a child joins your family they are loved. Period. Down Syndrome does not change that. Our family is MORE complete because Kloey Alice has joined us! We love you sweet baby!!!! ... AND your extra chromosome!!!
Saturday, October 20, 2012
12 more...Up before sunrise
It is 7:55 in the a.m. I have been awake since 6 a.m. Thank you to my dear children for reading the deepest desires of my heart. Yes, I did want to get up 2 hours before sunrise on a Saturday. How did you know??? ...Oddly enough I'm in a pretty fantastic mood this morning. I believe my husband was a bit shocked and dumbfounded by this. Heck, not even I know what's going on. But, I'll take it and I'm sure my children don't mind.
Kourtney just asked me a very good question, "Mommy, why are you up when it's dark outside?". To which I replied, "Why am I up?!!! You people demanded it, that's why!". (referring to her and her sister) Why indeed.
So, to continue with our wonderful month of Down Syndrome Awareness.... Here is a question that I didn't know the answer to. In my defense, my doctor told me something completely different...
Saturday morning is our sugary cereal day. She likes it.
Klo is starting to be extremely interested in just about EVERYTHING!!!
Kourtney just asked me a very good question, "Mommy, why are you up when it's dark outside?". To which I replied, "Why am I up?!!! You people demanded it, that's why!". (referring to her and her sister) Why indeed.
So, to continue with our wonderful month of Down Syndrome Awareness.... Here is a question that I didn't know the answer to. In my defense, my doctor told me something completely different...
Q: I already have a child with Down syndrome. How likely is it that my next child will have the condition?
A: Very unlikely. For parents with a child with Down syndrome due to non-disjunction or mosaicism, the chances of having another child with the condition is the same as it was before they had their child with Down. Parents of children with Down syndrome due to translocation run a slightly higher chance of the condition repeating itself. As noted above, this chance is approximately 3%.
where I got my info
where I got my info
I really did not know that my chances of having another child with Down Syndrome are still the same as before I had Kloey. My doctor told me that my chances had now increased by like 50%. I love Klo but that number freaked me out a bit. Now I'm left to wonder... Where in the WORLD did he get his information?!!! Nothin' like freakin' out your patient for no reason. Geez a lou!!!
Here are some pics to make you happy... they certainly make me happy!
Klo is starting to be extremely interested in just about EVERYTHING!!!
Super sleepy Klo with leftover sugary cereal evidence on her face. Good times :)
Friday, October 19, 2012
ThiRtEeN left... Would I change you?
Let me start by saying that today is one of those days that really needs to be a productive sort of day. A day in which tasks are in desperate need of completion and chores are piling up in a neverending sort of way. A day where your mind is screaming, "Get your butt in gear sister! Your move is only a week away!!!" and even that revelation doesn't seem to do much in the way of motivation. Yes, today is that day. That day when I want to say "eh, whatever" and sit down with a bowl of chex muddy buddies (which I have on hand) and have a Gossip Girl marathon (don't judge). But, alas, it shall not be. SIGH
So, Kloey has learned a new trick. "Sharing" her food with us. Oh boy, was she excited to share her delicious grilled cheese sandwich with Mommy and Daddy. I was so excited! So so excited when she lifted her sandwich up for me to take a bite. It's something that I never really thought about with Kourtney. Kourtney just did it. Now, it is such a big deal. And it led me to this thought, "would I change you?". I've been asked that question about Kloey so many times from so many different people. If I had the chance, would I change her? Such a serious question deserves some serious thought... so I thought about it...
My answer is a resounding NO!!! No, I would not change her if I could. No, I would not take the extra chromosome away from her. No, I would not take the Down Syndrome out of Klo. It is for this simple reason; if you take the Down Syndrome out of Klo... then she is not Klo. She would be someone else entirely. Down Syndrome does not define who she is, true enough, but it will FOREVER be part of who she is! The moment that I knew for a fact that she had Down Syndrome the first thing I did was kiss her and tell her that I love her. The second thing that I did was promise to always and forever be there for her and protect her and fight for her. The third thing was a bit shocking for me at the time... but the third thing I did was look at her and realize one very important thing... I WOULD NOT CHANGE YOU FOR THE ANYTHING!!! YOU ARE MY BABY GIRL! YOU ARE PERFECT JUST THE WAY YOU ARE! AND YOU ARE BEAUTIFUL!!!
Happy Down Syndrome Awareness month... 12 entries to go!
So, Kloey has learned a new trick. "Sharing" her food with us. Oh boy, was she excited to share her delicious grilled cheese sandwich with Mommy and Daddy. I was so excited! So so excited when she lifted her sandwich up for me to take a bite. It's something that I never really thought about with Kourtney. Kourtney just did it. Now, it is such a big deal. And it led me to this thought, "would I change you?". I've been asked that question about Kloey so many times from so many different people. If I had the chance, would I change her? Such a serious question deserves some serious thought... so I thought about it...
Happy Down Syndrome Awareness month... 12 entries to go!
Thursday, October 18, 2012
We have 14 to go!
Some days I wake up and when I open my eyes it seems as though I have been transformed into a fire breathing dragon. Under these circumstances it seems fair to walk around with a warning on my shirt: "WARNING: Do Not touch, feed, tease, poke, annoy, hug, kiss, talk to, or look at the dragon... you will burn and die. Dragon cannot be held responsible for her actions. Best of days to you". I should make a sign like that.
So, getting down to business and tackling another post for Down Syndrome Awareness. Here goes:
Subject: Down Syndrome Awareness
Topic: Getting Scientific
Pic: below... Kloey one or two months before birth... making me huge. I almost wasn't brave enough to post this.
So, getting down to business and tackling another post for Down Syndrome Awareness. Here goes:
Subject: Down Syndrome Awareness
Topic: Getting Scientific
Pic: below... Kloey one or two months before birth... making me huge. I almost wasn't brave enough to post this.
- 1 in every 800 babies are born with Down Syndrome in the United States.
- The 21st chromosome is the smallest human chromosome. Thought that was interesting.
- An extra chromosome from the sperm or egg is mostly what causes Down Syndrome.
- This copy occurs either before or at conception.
- There is NOTHING you can do to change or prevent this.
- 88% of these cases show that the extra chromosome came from the egg.
Pic Below: Kloey's 3D ultrasound. Around 34 weeks. Just so sweet.
- Certain characteristics come with the extra chromosome.
- Almond shaped eyes, or eyes have a sort of slant.
- straight palmar crease on the hand.
- Separation between big toe and second toe.
- One single joint on the pinky finger.
- Low muscle tone.
- Heart defects.
- Difficulty breathing on own at birth.
- Polycythemia or really thick blood.
Below Pic: Klo Bow all hooked to everything that helped to keep her alive the first week of her life.
- People with Down Syndrome are developmentally delayed to some degree.
- Some will not walk until age 4... still others may walk at 2.
- Yes, Down Syndrome brings with it some form of mental retardation. The severity level just depends on the individual.
- It takes a bit longer, but they will learn everything that needs to be learned to be self sufficient. There are those cases that are extremely severe.
- They will dress themselves.
- They will walk.
- They will date.
- They will talk.
- They will go to school.
- They will have a job.
There you have it. A bit of science to help explain things. Some of the things I've just learned over time. But here is a link to where I got some of my information. Much love!
Wednesday, October 17, 2012
Fifteen
So there are fifteen more entries (including this one) until we finish up the month of Down Syndrome Awareness. Today I wanted to share a milestone. You see, we get excited about even the littlest things with Klo Bow. When she held her head on her own for the first time. The first time she deliberately looked us in the eyes. When she rolled over (that was HUGE). Everything takes a bit longer for Klo and that means that every little thing means that much more celebration! My goodness, when she started sitting up it was the best day ever!!! Now she can get in and out of sitting all on her own. But, that is not the milestone that I'm talking about...
I can't put the child down. Yes, she is in the clingy stage. Oh joy. She fake cries!!! Granted, it's the cutest fake cry that I've ever seen but today is was just a bit annoying really. I put her down so that I could go to the bathroom... wail fest. Put her down to play on the floor... bawl party. I put her down because she was crying while I was holding her... Holy terror!!! Seriously, I remember this phase with Kourtney and it was just as equally annoying... but Klo is better at it than Kourtney was. Kourtney and I don't really know how to "cute" our way out of things. Klo Bow gets that from her daddy. Splendid. *sigh* so it begins :)
It just goes to show... she really IS just like Kourtney in so many ways.
I can't put the child down. Yes, she is in the clingy stage. Oh joy. She fake cries!!! Granted, it's the cutest fake cry that I've ever seen but today is was just a bit annoying really. I put her down so that I could go to the bathroom... wail fest. Put her down to play on the floor... bawl party. I put her down because she was crying while I was holding her... Holy terror!!! Seriously, I remember this phase with Kourtney and it was just as equally annoying... but Klo is better at it than Kourtney was. Kourtney and I don't really know how to "cute" our way out of things. Klo Bow gets that from her daddy. Splendid. *sigh* so it begins :)
It just goes to show... she really IS just like Kourtney in so many ways.
Tuesday, October 16, 2012
16 to go
Today is my Mama's birthday! Happy birthday Mom. Here's a special birthday gift to continue with our Down Syndrome Awareness month:
D: DARLING SOUL.
O: OBSERVANT AND PERSISTENT.
W: WISE AND WARM-HEARTED.
N: NOT TO BE UNDER-ESTIMATED.
S: SO SMILEY... A LOT OF THE TIME.
Y: YOUNG AT HEART FOREVER.
N: NORMAL: IN EVERY SENSE OF THE WORD.
D: DOWNRIGHT HARD NOT TO LOVE.
R: RELAXED AND LAID BACK... FOR THE MOST PART.
O: ONLY BE KIND AND LOVE...
M: ME.
E: EVERYONE IS SOMEONE... EVEN ME.
D: DARLING SOUL.
O: OBSERVANT AND PERSISTENT.
W: WISE AND WARM-HEARTED.
N: NOT TO BE UNDER-ESTIMATED.
S: SO SMILEY... A LOT OF THE TIME.
Y: YOUNG AT HEART FOREVER.
N: NORMAL: IN EVERY SENSE OF THE WORD.
D: DOWNRIGHT HARD NOT TO LOVE.
R: RELAXED AND LAID BACK... FOR THE MOST PART.
O: ONLY BE KIND AND LOVE...
M: ME.
E: EVERYONE IS SOMEONE... EVEN ME.
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