Cohen turned 18 months old yesterday... makes me so sad to see my little momma's boy growing up SO quickly, but it is what it is, and we enjoy him every minute we can!



Here's some things about Little Man over the past month:

• He runs everywhere he goes. It's so cute!
• Is back to sleeping in until somewhere between 9:30 and 10:30 am (thank goodness!) He also still goes down for a nap around 2:00 pm and will sleep between 2 1/2 to 3/12 hours. And he goes to bed every night between 8:00 pm and 8:30 pm. 
• He is very insistent about feeding himself still.  He will not eat anything if we try to feed it to him.  It doesn't matter if it is something like brownies or ice cream... he wants to do it by himself.  It's pretty frustrating sometimes, but it's a lot better than other battles we could be facing, so we deal with it. 
• He is such a momma's boy and doesn't want to go to anyone else if he is hurt or tired.  {I love it}
• He still loves to hold onto his hair for comfort and suck on his bottom lip. He also loves to hold on to my hair if he is tired or hurt.  He never pulls it, he just likes to hold it and run his fingers through it.
• He still nurses three times a day and even with all the teeth in his mouth, has never bitten me.  He nurses when he wakes up in the morning, before he goes down for a nap and right before bed. He loves it and I love that I get to have special cuddling time with him.
• He is getting two more teeth on the top bringing his total of teeth to 12. 
• When we put him to bed at night, he always makes me kiss Derek and them he will give Derek a kiss on the lips and then give me one.  Then he will wave "bye bye" to Derek and we'll go upstairs. 
• He loves to carry around twigs and sticks that he finds outside. 
• His favorite thing to do is go outside.  It doesn't matter how grumpy he is, as soon as he is outside he is the happiest little boy ever. 
• His favorite things to watch are: Winnie the Pooh, Mickey Mouse and any of the Toy Story movies, although he seems to like the third one best.
• His current favorite foods are: grapes, roasted potatoes, goldfish crackers, graham crackers, peanut and jam sandwiches, string cheese, green beans, scrambled eggs, bananas, lasagna, peas, and pizza.  He won't drink anything besides milk and water. He loathes soda and really doesn't care for juice. Fine by me.
• He is pretty quiet and doesn't seem to have much of a desire to talk.  He does know a few words, but just doesn't have an interest in using them right now.  
• He is so laid back and is so good about playing by himself and is so easily entertained. 
• He tries to sing along when there is music at church, he usually just goes "wow wow wow." 
• He is 12-18 month size clothing and size 3 shoes and is still in size 3 diapers. 

We got Taylor and Cohen a sandbox last Friday.  Taylor loves it... Cohen, absolutely hated it at first, but he had just woken up from a nap (which wasn't long enough) and I when I put him in it he just cried and cried. But, I tried to put him in it again today, and he didn't mind it.  He prefers to be on the outside of it though and just playing in it with his hands.  Today, Taylor sat in it and played for about two hours straight.  I am so glad that we got her something that she can do that makes me happy.  It's nice that she's becoming such a big girl and I can send her out in the backyard to play by herself while I get things done inside.

To signify the 3 copies of the 21st chromosome, 3/21 is World Down Syndrome Day.

To celebrate, I have decided to make our blog public again.  My reasoning behind this is in the past I have had people tell me that they've had a friend who just had a baby with down syndrome and that they're having a hard time, but they sent them to our blog so they can see that it's going to be okay.  With our blog being private, it is no longer available for that purpose.  Also, I have been reading a lot of blogs lately about children with Down syndrome and they touch my heart.  I don't want our blog being private to prevent Taylor from touching someone else.  I hope that someone who has just found out their child has Down syndrome and is struggling, will be able to find our blog and know that it's anything but scary.  It's definitely life changing, but in the best way possible a life can be changed. 

I also have decided to write down my feelings when we had Taylor. Something I've never shared publicly before.  It's not that I was ashamed to talk about it with people. It's just that my heart really ached for her.  I know that the world can be a cruel and ugly place.  I didn't want her to be treated differently just because she was born with an extra chromosome.  I didn't ever want my little girl to hurt.  She has Down syndrome, but it is not who she is.  I wanted to protect her from all the mean words and actions that she will inevitably experience in her life because of people's ignorance, even though I know that isn't possible.  I realize I couldn't keep it from people forever that she had Down syndrome, but it was just my defense mechanism at the time, although it makes no sense to me now, it did the time, and if that's what it took to get me through it, then I guess it really doesn't matter whether it makes sense or not. (Obviously we told our family and close friends, but it wasn't something that we put out there for just anyone to know.  Also, I think it's because I wanted people to get to know Taylor for Taylor first, instead of just automatically treating her a certain way just because she has Ds.)

We never had any testing done while I was pregnant with Taylor.  The 20 week ultrasound was about as perfect as it gets.  She measured right on track, the amount of amniotic fluid was great, her heart looked perfect, and they didn't pick up on anything out of the ordinary. We had no idea she had Down syndrome.

As many of you know, her birth was quite a shock to us. She came so suddenly, five weeks early after a car accident I had been in with my family, that ended up saving her life.  You can learn more about her birth by reading this post.

I had Taylor on a Sunday.  I think it was either a Tuesday that I was handling things pretty well and felt as though I could be by myself all day so Derek could go back to work and my mom could go home for a few days.  I think it was around lunch time, that I had just finished pumping, so I was headed down to the NICU to give them my milk, so they could feed it to Taylor though her NG tube.  Her pediatrician, Dr. Wilcox, happened to be there doing his daily checkup on my little peanut.  He was just finishing up when I walked in the room.  He was standing over her and was quiet for a while and then finally said, "I think... well, no, well... I think I'm going to have her tested for Down syndrome."  I remember thinking, "You're going to what?" It was not something I was expecting at all.  He said he having a hard time deciding to say anything to me about it, because he was pretty sure she did not have it.  The only feature of Down syndrome she had was the poofy patches (I don't know the technical term for it.. haha) she has under her eyes.  He said that he decided to just test her just to make sure.  I wasn't too worried about it at this point because the pediatrician said he really didn't think she had it.  I held Taylor for quite a while and then was getting ready to head back to my room, so they could get blood from her to send to the lab for testing, when the social worker came in the NICU to talk to me.  He handed me a pamphlet about Down syndrome and was telling me about how they can go to preschool and blah blah blah, I really quit listening at this point.  I felt as though he should have waited to come and talk to me until Derek was with me for one, but also until the diagnosis came back. If it had come back negative all this information was irrelevant.  Also, I had just barely started dealing well with all that we were facing with Taylor in the moment, and I just wanted to focus on getting her healthy and home and then worry about the Ds stuff later.

I was still in pretty good spirits until I came back to my room and started flipping through the booklet.  I came across a picture of a little girl who had Down syndrome, but didn't have features that stood out too much and it was just like I knew that Taylor had it too.  The tears started to flow and they just. wouldn't. stop.  I called Derek, and he decided to leave work and come be with me.  I also called my mom, and she did her best to comfort me.  Everyone I talked to kept telling me that the did not think Taylor had Down syndrome.  As much as I wanted to believe them, I just knew she had it.  (Side note: when Derek and I were first married we had a miscarriage after we'd been married about a little less than a year.  I told Derek that we had miscarried because I thought were going to have a child with special needs and we were not ready yet... little did I know this was really true.)

They let us know that night that they had sent her blood work to the lab and that it would take about a week for the results to come back.  At this point, Derek was doing really well and I was not.  I pretty much knew, even though I kept convincing myself that she did not have it, and I really think he was in denial.

One night I was struggling pretty badly so I had Derek give me a blessing when we got home from the NICU that night.  I don't even remember what he said, but when he got done I told him that I was pretty sure Taylor had Down syndrome.   He was still pretty sure at this point that she was not going to be diagnosed with Down syndrome.

I didn't write down any dates about how things played out, but I know it was longer than a week later, (because it was taking so long for the results to come back) when my mom and I were headed up to the NICU so that I could take Taylor some more breast milk, and I could give help give her a bath and give her bedtime snuggles.  Derek was already there since he was headed home from work in SLC.  When we got there, Derek said that the nurses were being extra nice and asking when I was going to be there.  I was pretty sure that results were finally back, especially since Dr. Wilcox was in the NICU and he never was there in the evening.  I can't even describe the emotions going through me at this point.  After a little while, Dr. Wilcox came over to talk to us.  He told us that the blood work was back and that she did have Down syndrome.  It was like an out of body experience.  It felt as though all the blood drained from my head to my toes.  I wasn't too shocked though, because God had been preparing me for this news ever since Dr. Wilcox told me he was going to test her for it, well really since we miscarried and I had a feeling we were going to have a child with special needs.  Derek took it a lot harder than me at this point.  It was a blessing that I was able to deal with it all before we knew so he could be there for me and I was able to be there for him when he was dealing with it.

I look back at this now and I just think that they feelings I was having were so silly and it makes me so mad at myself.  There was nothing to be upset about.  We had just been given the best gift we could have been given.  Taylor is amazing and full of love and absolutely perfect.  She will be able to learn and grown just like everyone else, just at her own pace, and you know, that's okay. It helps us appreciate the little things in life, because the smallest accomplishment Taylor makes is a such a big deal. If I knew what I know now about Down syndrome, I would have prayed that she had it, instead of praying that she didn't.

I remember hearing Dr. Wilcox telling us how all the parents of kids with Down syndrome he is involved with say if they had a magic wand to wave over their child to make them normal, that they wouldn't do it.  I remember thinking, "yeah... right. I'll do it right now."  But really, it's so true! I wouldn't change a single thing about my little peanut.  It is not she that is lucky to have us, but we who are lucky to have her. What I do wish I could do is wave a magic wand over the world and change it; Change the way that the world sees people with Down syndrome and other disabilities.

I am sure some of your are wondering if it would've been easier on us to know before Taylor was born.  But, I really don't think so.  We had her to love us through all of the emotions we were feeling.  When I was having a hard time with it, I could just hold her and love on her and know it was all going to be okay. Because I could feel this amazing spirit oozing out of her so strongly and knew I had someone special laying in my arms.  

In the booklet on down syndrome they gave us at the hospital is something that I absolutely love.  It's called "Welcome to Holland."  you can read it here.

When I read that it was like it was written for me.  I was mourning a dream I had.  My brother had a little girl who was born three months before Taylor, and I had imagine these two cute little girls growing up together and being best friends.  And really not much has changed because they still are, it's just different than what we had expected.  Tylee does so many more things than Taylor can do.  But what we have come to realized is how little it matters. Taylor is a gift and a blessing to all she comes in contact with.  She is a perfect example of what being Christlike is.  She loves everyone.  She doesn't care who they are or what is different about them.  She loves them because she knows they are a child of God.  We all have a lot to learn from this sweet little girl.  Derek, Cohen and I are lucky enough to have her in our home and learn from her every. single. day.

I have also come to realized that the world is changing.  People as so much more aware and accepting than they have ever been.  I have had so many people reach out to Taylor.  Random strangers at restaurants or the mall or Target who will come up to her and smile and laugh and talk to her and tell me how lucky I am to have her.  It is so wonderful to watch this happen.  There are some people in our ward (church) who are so good to little Taylor.  They are kind and they treat her just like they do all the other children. Even the little neighborhood kids are so great with Taylor.  Especially, our little neighbor, Baylee. Taylor gets so excited when Baylee is outside and always has to run after her yelling "lee lee lee" and give her a big hug. I just hope that the world keeps changing for the better and that everyone can learn how wonderful people with Down syndrome are and that really, they are just like you and me.

We had Taylor's birthday party on Saturday morning.  Since she loves Mickey and Minnie Mouse so much, I decided to throw her a Minnie party.  She loved it!  My mom made her the cutest skirt and Minnie Mouse shirt to wear.  When I put it on her, she twirled around and said, "cute!"

We had it at our church, because it was kind of a colder day and there is no way we were going to fit all the people we invited in our tiny 1100 square foot town home.

Here's how the table set up looked.  We made Minnie Mouse rice krispie treats, a Minnie cake on a cake stand a made out of a plate and a candle stick I found at Hobby Lobby for $8! Then we had cupcakes and pink popcorn.  I designed everything on Photoshop.  I thought it turned out pretty darn cute and it really was quite cheap to put together.


My parents, sister, Crystal, and my other sister, Deb and her family came from Roosevelt, my brother Aaron and his family live in Eagle Mountain, so they were able to come and so did my brother, Eric and Derek's brother, Evan who both live here in Provo. We missed our Vegas family and our missionary, Kendall.

We played pin the bow on Minnie, "Mickey, Mickey, Minnie" (duck, duck, goose) and musical chairs.  Taylor was in heaven.  She totally knew that the day was about her and she was totally eating it up.


After games Taylor opened up her presents.  She was so cute to watch and would say, "cute!" after opening any clothes and was so excited for everything she got. She got some cute Spring clothes, a Handy Manny DVD, a Signing Time DVD, a thing of wooden toys shaped like treats that she can string onto a rope. A Tangled Color Wonder coloring set, some play-doh, a Word World DVD and a wagon, that we didn't bring over to the church.

When she was done opening her presents, we had sloppy joes, chips, and veggies for lunch.  I also made super cute sippy cups out of mason jars, but I forgot to take a picture of them. They were a big hit all the little kids loved them.

We then watched a video I put together of Taylor from birth until now.  The kids all had a blast watching it and dancing to the music. Especially Taylor.  She was so stinking cute to watch!  If anything I am glad I made that video for her.
 After the video we put candles on Taylor's cake.  She helped us sing to her and practiced blowing them out the whole time.  She did pretty well and got two of the candles in one shot and then got out the other two.
 Thanks everyone for coming, Taylor had a blast! We had a lot of fun celebrating our sweet little princess.

Taylor and her favorite buddy, Caitlin.

 I cannot  believe that my sweet little girl is four today.  Four!  I know that I'm being cliche, but I don't care.  I really can't believe it.  It does not seem like it's been that long since they placed a tiny 3 pound 6 ounce baby on my chest after taking her by emergency c-section.

This morning when she woke up, she was so happy when I told her it was her birthday. I don't think she understands exactly what a birthday is, but she totally knows that it's a day about her, and she eats. it. up.  I made her homemade chocolate waffles and whipped cream for breakfast, and she loved it.  I stuck a candle in it and sang "Happy Birthday" to her, she tried to sing it along with me and then blew our her candle and clapped. 

After lunch, I took her outside to run around and play for a little while.  She and Cohen had a lot of fun.  A lot of the little neighbor kids ended up being outside and she loved being able to spend time with them.  I felt bad when I had to make her come inside because it was time for Cohen to take a nap. She was so sad.


 About an half an hour after I got Cohen down, Evan came over to watch him so I could take Taylor to go get a cupcake at the Sweet Tooth Fairy.  I don't have any picture of that, darn it.  But, she really enjoyed that too.

When Derek got home from work, we took her out to eat at The Brick Oven.  She got a free birthday meal in the mail and we knew that would be perfect, because she loves pizza!  She was such a good girl while we were there and when they brought out her birthday ice cream she stood up and clapped and had huge smile on her face the whole time they were singing to her.  When they were done, she said "yay! thank you, goodbye!"  It was too cute!

We came home afterward and spent time playing with her and she was able to Skype my family and Derek's mom.   She is getting so big and is getting pretty good about talking on the phone.

By this point she was so tired, so we skipped giving the kids baths and just put them to bed. I hope that she had a good day.

Here are some new things about my birthday girl:

• She can say a little more than 200 words and can sign about 25 signs.  Which is pretty good since I only started having her watch "Signing Times" a month ago.
• She can walk up and down the stairs.  She still tries to crawl up/down first, but if you help her get a hold of the railing, she will walk. 
• She is getting better at listening and following directions. 
• She loves preschool and is always so sad the days that she asks, "school?" and I have to tell her that she's not going that day.
• She also loves to go to primary and also loves to sing the Sunbeam song.
• Her favorite show is still anything Pooh. However, Handy Manny and Special Agent Oso gave Pooh a run for his money this past year, but she came back to her one true love, Pooh, in the end. She also has decided she kind of likes "Borba" (Dora the Explorer) lately. She will also watch "Singing Time."
• She is an early morning girl.  This is not super fun for Derek and I who are most definitely not morning people.  But, she's cute, so we cope.
• She loves to listen to kids music on Pandora and dance around.  She is always bringing me the iTouch and asking for music.
• She is wearing size 4T tops and 3T bottom (although they are still a little long on her.)  She is still in a a size 6 shoe and size 5 diapers. 

 And here's her birthday letter:

My Taylor girl,

You are four years old today! Where did the time go?  It seems like just a little while ago that you were my tiny little peanut who snuggled in my arms all day long. How I wish I could rewind time and snuggle that tiny little girl in my arms again.  I do enjoy watching you grow and learn new things, but I do miss you as a baby and wish that you would quit growing up so quickly.

You are doing amazing things!  I can't believe how far you have come.  You love to learn and are so determined to figure out new things.  You love going to preschool and when I meet with your preschool teacher, aides, and therapists, I can tell that they love you too. You touch so many people's lives everywhere we go.  You are a gem in our lives, and oh how lucky we are to have you!

You run everywhere you go with a big smile on your face.  You are smart.  You memorize shows that you watch so quickly that you make it look like all I do is stick you in front of the TV all day.  But, I don't, you just only have to watch something once or twice and you have parts of a show memorized. You really enjoy coloring and are always asking me for "colors."  I think your favorite color is pink, because you say it more than all the other colors, but it could just be because you like to say the word. You love music and dancing and I have so much fun having little dance parties with you.  I love how you take the time to enjoy the small things in life and the way you teach me to stop and do the same.  You have such a big heart and you are so loving and caring towards everyone you meet. 

Little T, you are so amazingly perfect.  You are the sunshine in my day and I always catch myself watching you in awe not believing that I am the lucky one that gets to be your momma.  It's an overwhelming responsibility and most days I don't feel worthy enough to have such a special little girl in my life.  But, you are mine and I am thankful for it.  You teach me so much about life.  You have it figured out and I have so much to learn, so please be patient with me. Happy Birthday, Taylor girl!

I love you more than words could ever begin to say.

Love, your momma. 

They celebrated Taylor's birthday yesterday at preschool, since it's actually on a Friday and it was that last day she was going to be there before her birthday. I sent her with cute little butterfly Little Debbie snacks to have as her birthday treat. I hate that you can't send homemade treats anymore.  I don't remember eating anything store bought at school parties when I was little, but oh well.  She was in such a great mood when she got off the bus.  She kept handing me her little birthday crown they made for her and saying, "Birthday! Birthday!"  I wish she could tell me what they did, but she seemed super happy, so I know whatever it was, she enjoyed it! 

To say that my kids have loved going outside the last couple of days would be a a huge understatement.  Taylor has been enjoying her new independence she's found from being able to go out in the back yard and play while I clean or cook dinner.  She thinks she is such a big girl.  It's too cute!  She was having the best time Monday night playing with her clapper that came in her instrument set.  She kept doing stuff to the fence with it... I don't have any clue what was going on in her little head, but she was having fun and that's all that matters.

 Today, when we got home from running errands getting things ready for Taylor's birthday, I let Cohen roam around while I brought in things from the car.  He was in heaven running up and down the sidewalk in front of our home and picking up twigs.  He was so ticked at me when I made him come inside so he could have lunch.


I am so bummed that the weather is supposed to turn yucky this weekend, especially since it's Taylor's birthday, but that's life.  We'll take the gorgeous days as they come and enjoy the heck out of them!

Taylor was in such a good mood today when we got home from church.  She was being so silly, so I just had to take a few photos of her.  It's so fun because she is starting to understand what a camera is and has started to smile when you tell her to "say cheese" I love it!

It's become somewhat of a tradition to take Taylor to Disney On Ice every year for part of her birthday.  It's so convenient that it comes either the week before or the week of her birthday every year.  It's also nice that we are able to get discount tickets through Derek's work.

We went today and it was so much fun! It definitely was my least favorite Disney On Ice I've been to so far, but it was still fun.  Taylor was so much fun to watch.  She loved watching the cowboy/cowgirl song part and the Barbie part and got up and danced around, she's a doll!  Cohen was so mesmerized and just stared wide eyed and ate his snacks.  They both started to get a little restless toward the end, but other than that did so great!


After the show, we headed over to the Gateway to eat at Tucanos, but it was a half an hour wait, and with kids, we decided it was not worth it. So, we went to The Pie for some pizza.  So good!  Taylor loves pizza more than any other food, so she was a happy camper.  Cohen was just happy to be eating food.


After that we came home and hung outside for an hour or so.  Taylor was having a blast holding onto Willis' leash.  She is so into him lately.  I don't know how many times she asked for him while we were gone today! It was such a gorgeous day and it made me so in the mood for Spring!  The kids were more than ready for bed by the time 7:30 pm rolled around, so we gave them a bath and sent them to bed.  It was such a great day!

I know I've mentioned it before, but Cohen's comfort mechanism is holding onto his hair and sucking on his bottom lip. He has been doing this since birth. It is one my favorite things!  I have been telling myself to take a picture of him doing this before he stops doing it.  Because I know that some day, he will stop doing it and I will be mad at myself for not capturing.  I finally just did it tonight. It's not a perfect of example of it, so I'll have to try again, but it's better than nothing.

Lately, he has also loves to pull all the cushions off the couch and pile them together and then snuggle in them.  So cute!  He also does this with blankets, clothes from his hamper and towels.  I love this boy!

I was fortunate enough to grow up with my amazing sister, Crystal, who has cerebral palsy and other special needs.  She taught me a lot about acceptance and unconditional love.  Then I was extra blessed when my sweet little Taylor was born with Down syndrome. They are beyond special to me, and although I realize I can not shield them for the cruelness in the world, I can at least educate people on something that breaks my heart.

The diagnosis of Down syndrome comes with a diagnosis of mild to moderate mental retardation. It is a medical diagnosis.

Crystal and Taylor are kind, they are funny, they are silly, they are Christlike, they are amazing. And they are anything but stupid and they are most definitely not the r-word.

Here's a perfect example of someone misusing the r-word that I saw pinned on Pinterest today... It made me cringe.
 
The way the r-word is used in this is so unnecessary. It would actually be funny if it just said, "Laughing so hard, no noise coming out, so you sit there clapping like a seal."  Why does it have to be a "retarded" seal?  I'm sure the person that created this didn't think about it.  But, people need to think about it and it has to stop.


"You may not realize how damaging the r-word can be.  But when you use a slang like "retard" or "retarded," you're marginalizing and insulting millions of people with Intellectual Disabilities, their families, and friends.  So now you know.  And now you can do something about it.  Take the pledge and put an end to the R-word."-from the spread the word website.

 I'm asking you to do something today. To be a champion for my sister, daughter and all those like them. Please go to r-word.org, and make your pledge to stop using the r-word. Then spread the word to your friends, family and those around you. Let them know that it's not okay to use the r-word.

I love my iPhone and I especially love the Instragram app.  Here are some of my favorite photos I've taken with my iPhone lately.  Oh, how I love my littles!