Monday, December 24, 2012

Merry Christmas


I will post again about how 2012 treated us but until then.....Happy Holidays!

Thursday, December 20, 2012

Christmas 2012

Gallery Greetings Holiday Card
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Monday, December 3, 2012

"Not a real problem," problem.

I want to blog tonight. I honestly do. I've thought about this post all day. Problem is......I can't post any pictures to go along with it.

Both my computer AND my external hard drive is at capacity. What a crappy predicament. For now, you have to trust me when I say that Harper has been extra cute lately.

It must be that extra chromosome!


Sunday, November 25, 2012

Down syndrome thankfulness

Every Thanksgiving my blogger friend, Patti, puts out a call for us moms to send her a picture of our little one. Patti is the mother of 10 and one on the way. She is crazy but in an awesome way! Her youngest, Lily, also has Down syndrome. Us Ds mama's stick together. She is one of the reasons why this blog has readers, besides my friends and family who felt obligated to read it!

She gave the sign and I immediately sent her the cutest picture of Harper to date. Read the blog here.


There are so many cute kids and wonderful reasons we are grateful for our children. Take a minute to look at the cutes kids, read the awesome reasons we are thankful and remember to think twice about judging a child or a parent of a child who is differently-abled.







Saturday, November 24, 2012

Thankful, happy, and some more thankful

We are amidst the season of thankfulness. I am trying to be more present and to be thankful in the present rather than looking back. That's easy to do when you have her rolling around your floor.




And even though she is pulling my hair ALL. THE. TIME. I am still thankful for her. I guess pulling hair is a typical milestone!



I think on a daily basis how blessed we are to have Harper in our lives. But it's days like Thanksgiving that make having her a tad more sweet. Starting traditions because of her melts my heart because it means my family is, well, a family. 




Hug your littles a little closer tonight. Juliet is now dancing in heaven and her parents have to live without her. Here is the link to the slideshow that was played at her funeral earlier this week. Please keep them in your thoughts and prayers. 






Monday, November 12, 2012

Blessed and help needed

It was about this time last year that I started praying. I took a break from it for quite a number of years. But love and the fear of losing someone that means the world to you makes you change as a person and start grasping at anything that could potential make the situation better.

My prayers and your prayers delivered. Harper soared through her surgery and her recovery. She was crowned our fighter and champion.

I haven't stopped praying. I don't go to church like I did last year before her surgery, but I don't feel required to attend to be heard.

My birthday, November 4th, marked Harper's 10 month post op from open heart surgery. More proof that she is meant to be with us.

I know I haven't posted regularly in quite sometime and I am working on mending that. I haven't seen the comments as I did a year ago. But I know you, my readers, are still there. I see the traffic and am well aware that I still have a captive audience.

I am asking a favor. You pulled through for us many times but now it's time to pay it forward and help out another baby girl in need.

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Juliet is over a month old. She has surpassed all expectations. But she has started to struggle. She is now on oxygen 24/7 and without it turns blue. I have linked up to Allie's blog before but the need is stronger today than ever before. You can find it here.

familyphoto

This family is in my thoughts on a daily basis. Harper and I talk about Juliet quite often. 

As before, please read Allie's blog and leave a comment. I know it will warm her heart and hopefully ease the stress and pain. 



Sunday, November 11, 2012

Quick update

We have been busy! Here is a quick update in pictures! 













In the past two weeks Harper has been growing up before our eyes! She started feeding herself at school but REFUSED to do it at home! Made this mama proud and upset at the same time! But as of today, she will feed herself at home! She finally has her first tooth and is a bottomless pit

She is super close to crawling! She wiggles and rocks and is THIS close to moving! Watch out world Harper will be coming to get you soon! 


Monday, October 15, 2012

Quick post

I have a great post but I am having problems posting it. So, to tide you over. I give you The Bohacek's....and Bucky!

From the Mouth of Babes

With Down syndrome Awareness month over, I realize that I did not do my part this year. Life has is happening. This post has been in the works for quite some time and I've had a difficult time hitting the post button. So here it is...



Explaining Harper's Down syndrome diagnosis to adults was difficult. Most adults have a negative view of Down syndrome. And I know that it's difficult to overcome preconceived opinions. I also knew the day would come that I would have to explain Ds to a child. I had thought about what I would say to that child and how important my explanation would be. It's a chance to help that child form a positive opinion on Ds. And I knew I couldn't blow it. 

The time came a few months ago. My neighbor, Megan is 7, intelligent, caring, and very inquisitive. Her parents are very honest with her and answer her serious questions with serious answers. So when Megan asked me why Harper had heart surgery, I explained to her that she had holes in her heart that needed to be fixed. When she asked me why Harper had holes in her heart....my heart sunk. 

I got nervous. But I knew I had to answer fast. And I had an obligation to the Down syndrome community, Harper, and Megan to give her an honest answer.

I said: Harper has holes in her heart because she has Down syndrome and some kids with Down syndrome have something wrong with their heart that needs to be fixed.

What is Down syndrome? 

This is it. Come on Kaiti, give her a great answer. I knew her mom was listening and I wanted to say the right thing and finally it came to me....Down syndrome means that Harper may learn things slower than you or your brother. But she will eventually learn everything you know. It may just take her longer. 

Megan understood. She accepted my answer.  She understood that this is why H is crawling yet or why she isn't walking. 

I looked over at her mom with tears in my eyes. She approved of my explanation. 

I knew I had just helped one form a new positive attitude toward Down syndrome. I was proud of myself. And proud of Megan for being so....normal about it. She didn't start treating Harper different. She still doesn't. She just wants to help Harper learn as fast as she can. 

Flash forward to a few days later. We were at Megan's house and baby Owen was there. He is the cutest baby boy I have seen in awhile and he was putting weight on his feet. His mommy and I were having a conversation about how Harper won't put weight on her feet and she is older than Owen.  

Megan was right there and said, "is it because she has Down syndrome?" 

I said, yes it probably is.

Megan, "Does Owen have Down syndrome?" 

"No," I responded. 

Megan, "Oh, well Harper will learn how to stand but it may take her a bit longer." And she walked away. 

I cried. But happy tears.

My wish for Harper is that she has many more "Megan's" in her life.

Megan gets it. She is accepting and doesn't bat an eye because Harper is different. 

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There are times that I tell adults that H has Down syndrome and they give me the sad face. Honestly, I want to smack that sad face right off and sit them down in front of a computer to read this blog. 

Then there are trips to Target like the one I had recently.

Harper was in cuteness overload during that trip. She was a talkative and smiley bundle of happiness. We were getting ready to check out and a gaggle (how many is a gaggle?) of ladies stopped their shopping to talk to Harper. They asked me her name, age, and told me over and over how cute she was, how blue her eyes were, and how happy she was. 

I left that conversation thinking to myself that they had no idea that Harper has Down syndrome. How did I know that? 

I didn't get the sad eyes. I got the "OMG, your baby is sooooooo cute eyes." 

They enjoyed Harper's cuteness because, well, she is really cute! But I knew that Down syndrome helped make her that adorable.

Down syndrome Awareness Month is important. The blogging community always steps up it's game. I felt awful every day in October when I didn't blog or post a Ds fact on Facebook. But honestly, Down syndrome awareness happens everyday in my life. Everyday, Harper is breaking stereotypes. She is loved in this family because she is Harper....not because she happens to have an extra chromosome. Would I take that extra chromosome away if I had the opportunity? Absolutely not.
























Tuesday, October 9, 2012

Trisomy 18 and beautiful Juliet

My mind has been elsewhere the last few days. Constantly thinking of Allie and her daughter Juliet. I blogged about Juliet's prenatal diagnosis of Trisomy 18 a few months ago. Monday, Juliet entered this world.....crying! She is a fighter. And a beauty. 

Please checkout Allie's blog, as well as Juliet's story here


Leave her a note. She will read it and appreciate it. Us Trisomy moms have to stick together. 

Sunday, October 7, 2012

Fall has arrived!


Before I wave my fall freak flag, let me take a minute to thank my new found Ds mama friends! Through our Ds Society in Madison, mommies get together on the fifth of every month and this Friday was the first time I was able to make it! I needed it for so many reasons. So thank you and hopefully I'll join you next month! We had many meaningful and helpful


Saturday was the day I have been waiting for since last year. I've had a rough couple of weeks and the pumpkins, goats, and the corn maze was calling my name. And it didn't disappoint.












Thanks to Tara for the pictures and for joining us with your family! 


Wednesday, October 3, 2012

Tuesday, October 2, 2012

Day 2: Breaking Stereotypes

Harper doesn't know she is breaking stereotypes but she is doing it every single day. Let's take my job as an example. I'm the director at a child care center. We see up to 100 kids every day. Only one child has special needs. Harper. But she is loved by the teachers, classmates, older children, and even other parents. Obviously my staff are aware she has Ds and some of the parents have confirmation from me but that's it. Harper is loved at school because she is Harper. She is cute, talkative, and awfully cuddly.

The children who "love" Harper at school don't even realize they "love" a child with special needs. One day that will change. There will come a time where young friends and family will realize that Harper is different. They may shy away or they may continue to help break stereotypes and continue to treat Harper as they are now....the same as any other child.

The stereotype that constantly plays in my head is that "people with Ds are always happy." Today that was on a loop. Why? Because Harper was the farthest thing from happy today.


It would seem reasonable to insert a video of Harper being dramatic but technology is not on my side tonight. 



Before the dramatics





I don't live in la la land. I am fully aware that Harper can't get by on her good looks for the rest of her life. She has charmed the pants off of many people...Ds or not, the girls got spunk. But for now, I'll stay in la la land and enjoy the fact that strangers stop to see the pretty baby. Not staring because there is a girl with Down syndrome.

...................................................................................................................................................................

For readers who visited my friend Allie's blog and read about her daughter's prenatal diagnosis with Trisomy 18....we are officially on baby watch. Allie and Juliet have reached the due date. They will allow nature to take it's course but if Jules isn't moving then Monday will be the day. Allie and her family are in my thoughts daily. Please keep her in yours.



Monday, October 1, 2012

Day 1: Down syndrome Awareness Month

October is Down syndrome Awareness Month. Thirty one days of pictures and updates about this girl.





I'm sure you won't complain. And if you do then you will not see pictures like this...
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Or this....



I promise to raise awareness each time I post. But will it be every day in October....probably not! We have many topics to talk about, but better yet, lots of pictures to post. 



Monday, September 17, 2012

Harper's Heartbreakers


Your reward for reading all the way through is a hilarious video of Harper!


The Madison Area Down Syndrome Society is reaching out to the entire community in an effort to raise awareness about Down syndrome and the meaningful contributions people with Down syndrome give to our community everyday.

This year's walk is extra special - we have two important announcements about MADSS and two national partnerships we are working on for 2013 and this walk is critical to pulling these off. You read the first announcement here. You can read the second, even bigger, announcement here.


11th Annual Step Up Walk for Down Syndrome Benefiting the Madison Area Down Syndrome Society
Date and Time: Sat, 10/13/2012, 1:30pm
Location: Monona Terrace, Madison, WI
Exhibition Hall B
 
  

Come join our community and have a boat load of fun!

We'll walk from the Monona Terrace to the State Capitol and back to the Terrace. (About 1 mile)
JOIN US FOR:

  • Bucky Badger from 3:30pm - 4:30pm!
  • Face painting by Nuria Vega
  • Photographer Audrey Grunwald
  • Visit the Oscar Mayer Weinermobile!
  • Go through the Obstacle course by Special Olympics
  • Play in a Bounce House
  • Play games from Its Your Party!
  • Bid on awesome items in the Silent auction
  • ...and much more!

Free Parking at the Monona Terrace (Value $6) if your registration and payment are received by October 1st!

Other Important dates:Sept. 17th - To be guaranteed a t-shirt, payment must be received by Sept. 17th.  Sept 29th - Custom shirts must be ordered by Sept 29th to guaranteed delivery before the walk.  Click here for more info.  Oct 1st - Payment received by Oct 1st guarantees your registration at the Walk.

*Get a brand new look with Nuria Vega's fantasy makeup!Nuria is a bilingual artist with more than 20 years of experience transforming the faces of both kids and adults.

Click here to visit the MADSS Website.


video





Thursday, August 30, 2012

Harper is ONE!

I have tried so many times to write this post. Just the thought of this day has put me in tears for the last few weeks. Today is no different. But I am going to power through. Today was a celebration of the wonder she has brought since her arrival one year ago.

Today at 11:54 am I was out to lunch with co-workers and Harper. Last year at 11:54 am I was in an OR delivering my baby girl. Today my co-workers "oohhed and aaahhed" over how cute and well-behaved Harper was sitting in her high chair. Last year the nurses and doctors (along with Andy and myself) were impressed at how healthy Harper was. Under 5 lbs, heart defect, and over 3 weeks early.

Last year...

The day was a whirlwind and one that I remember every detail of. I was wearing black yoga pants, and a blue and white striped cardigan. My hair was in a low pony tail. Andy was dressed for work and joked with the nurses that he needed to transform into Dr. Clooney. He was trying to soften the mood. I'm pretty sure I told him to "knock the f*&# off!"

We knew the Friday before that we were most likely going to have H early. My OB gave me her personal cell phone number so I could tell her (before anyone else) what the specialists decided. She canceled her appointments for the day to come deliver Harper. Dr. Burns held my hand and wiped my tears away while I was getting the epidural. She didn't have to do that but she loved Harper from the beginning. She was proud of us and was the perfect person to deliver my angel.

Turns out that the whole hospital knew about Harper. They were expecting her in the NICU. They were ready for the baby girl with Down syndrome and a complete AV Canal defect. They were stunned and happy when she was too good for them. News spread fast. I found out this out not too long ago from a few different people. The hospital was proud of Harper without ever meeting her.

What a difference a year makes.






Today...


I took the day off today to spend it with H. Andy is traveling for work so it's just me and my girl. And as Kelle Hampton would say...today was made of unicorns and rainbows. 



Harper slept in an extra hour, started whole milk today, started bringing her sippy cup to her mouth herself, made many more "close to crawling" motions, and actually put some weight on her feet. 

I realize these are milestones that many "normal" one year olds have already mastered. But my Harper is doing things in her own time. And who cares? She is the happiest baby I have every met. She has a fantastic family, great friends, and many other people that love and adore her just the way she is. I wouldn't change her for the world. 

Today she grew in front of my eyes. We sang. We danced (ok I watched Glee 3-D movie too many times this week), and we bonded. 

She has found her voice for months now but, boy oh boy, was it out today. She was so talkative in the mall that 2 ladies had to stop and talk to her. Yep, that cool kid is mine. And she is wonderful. 




Help needed...

Thank you to all who came to Harper's party and thanks for the gifts but I'm asking one more favor. Join Harper's Heartbreakers for the Madison Area Down Syndrome Society Step Up for Down Syndrome Walk on October 13th. If you can't walk...we will take your money too! No seriously, we appreciate every penny and every step you can contribute. Please visit here for more info. 

You all know her story and you know how much paying it forward means to me. We have been welcomed in the Ds community with open arms and enjoyed educating/involving you along the way. Without events like the Step Up for Down Syndrome Walk and fundraiser, my voice wouldn't be able to be so loud. 


Thank you for the love you have shown my family the last year. The comments and emails that I receive from perfect strangers have touched my heart. This year has been amazing (and fast) and we look forward to sharing many more with you. 





Monday, August 6, 2012

Life as we know it

Thank you for all of the support you gave my friend Allison. I checked up on you and you guys left her some amazing and encouraging comments. You made my heart sing. Thank you for helping a complete stranger. I know she appreciates it. And I will keep you updated on her as often as I can.

Time to change topics.....


Times flies when you are having fun. Or having lots of stress. Someone asked me recently what I do for fun. Hmm, drink. I was sarcastic. Kinda. I have been so occupied with selling the house, buying a house, moving, new(ish) job, teething Harper, and everything else life has to offer that I don't have time for fun.

Occasionally, I'll get together with a girlfriend. But I spend my nights drinking wine (I swear I don't have a problem), decorating the house, and texting my friend Tara my hilarious  daily occurrences with 100 children in one building. In turn she texts back how fabulous her Monday's off were. She sucks.

Some may tell me that this isn't fun or a hobby. And to that I say: too bad. I have painted the majority of this new house, hung pictures, organized, and painted furniture. That is my fun. I like projects. Ok I LOVE home projects. I may bitch and complain while I'm doing them but I crave the final product.

Here are a few I have been meaning to share with you. ENJOY!









Just a taste of what I have been working on. The table, chairs, and china hutch were my Nonna's. My parents were gracious enough to drive down to IL and bring them to me. I'm sure my Aunt Sharon was happy to get them out of her garage! Thanks Uncle Dan for the truck!

Some things that Harper has been up to: