Wednesday, March 28, 2012

Something to tide you over

So I've fallen off the face of the earth. Ok that was quite a stretch but I feel like it. Everything always happens at once and, let me tell you, I am spinning many plates right now. One of these plates is this blog and it is falling off. Forgive me. I'm going to get it spinning again and get my life back this weekend!

This should ease the pain.....

video

Lots of changes have happened in two weeks which calls for updates but this mama is TIRED. Make that TIRED.


Wednesday, March 21, 2012

Celebrate! It's World Down Syndrome Day!

I am like any other mother. I worry about TODAY for my daughter. Did she eat enough? Does she have pink eye? That's a weird cough, should I call the doctor? I am like every mother. 

Harper is like any other baby girl. She is rolling. Eating bananas, squash, peas, avocados, and sweet potatoes. She smiles when I enter the room and cries when I leave. She is like every other baby girl. 

Harper has Down syndrome and had heart surgery on her little heart when she was 4 months old. She has gone through things that other babies do NOT go through. But she is Harper and day by day she is just like every other baby girl.


I am her mother. Andy is her father. I am the director of a preschool and Andy is the Assistant VP of a staffing agency. We are not extraordinary people. We donate to Goodwill. Give change to the red kettles during the holidays and buy Girl Scout cookies and Boy Scout popcorn. I participate in food drives and I recycle. We are normal, ordinary parents. We are not extra special in our every day lives. We are extra special because Harper is our daughter. But not because she has Down syndrome. 

I am grateful for Harper. I am grateful for Down syndrome. Yep, you read that right. I am grateful for Down syndrome. It has given me my daughter but it has changed me to be a better person. My eyes are open. I am nicer  trying to be more kind. We are handpicked to be Harper's parents just like you were chosen to be your child's parent.

Often, people tell me that I must be really special to be picked to be Harper's mom. Or, I must be very patient to be given a daughter with Down syndrome. If you know me, you know that I am the furthest thing from patient. And I'm special but not super special.  Harper was given to us because we created her. She is our daughter and I would love her the same if she didn't have Down syndrome.

I LOVE that Harper has Down syndrome. The truth is...I don't know any better. She is my only child. I don't know any different. Doesn't matter because she is magical. Her smile melts my heart. Literally, the girls' smile makes me want to stop everything and kiss her cheeks until I can't anymore.

Today is World Down Syndrome Day. This day rocks. I could write many posts for today. I could write about the new blood test to detect Ds, or the lawsuit a family won in Oregon because the doctors didn't prenatally diagnose their daughter. But today is a day to celebrate. Without Down syndrome there would be no Harper. If there was no Harper, there wouldn't be pictures like this...







Or this...


I mean come on. Those cheeks. Those eyes. Down syndrome ROCKS. Today is a day to celebrate. Her entire 6 1/2 months is reason to celebrate. Celebrate today in honor of Harper. I have great readers. Some of you have met Harper in person but most of you meet her through my blog posts. I know she has touched many hearts....I get the emails almost weekly. These emails come from complete strangers. And I mean complete. strangers. I am now asking you---family, friends, strangers, blog followers.....to spread acceptance. Do it for Harper and her friends. 

Help spread the word that Down syndrome is not a death sentence. Yes, there will be difficult times but that's life. Down syndrome is a scary diagnosis but I am here to tell you that Down syndrome is an amazing syndrome and there is nothing DOWN about it! 




Sunday, March 18, 2012

Splendid

The pictures will do most of the talking.....

Badger day at school with bf Easton

high school friends and their babies

Go Badgers! 

I was channeling my inner cheerleader

Auntie Dajen

So comfy

Glitter Toms makes a Sunday perfect

Add caption

Cuddles

Sad daddy is leaving for long work trip



Wednesday, March 14, 2012

Down Syndrome Diagnosis

I have been vocal in the past about how supportive our doctors were after Harper's diagnosis was revealed. We were given our options, we made our decision and everyone moved on. We were NEVER pushed to terminate but we were given that option. We were NEVER ridiculed for keeping Harper and we were NEVER made to feel that Harper was not going to be well taken care of after she was born. As a matter of fact, it was the opposite. Every person (ok minus one pain in the ass doctor) was supportive and excited to meet the little muffin.

Barely bigger than the sub


I like to think that part of this is because we have evolved as a society (I said, I like to think) but I also firmly believe two other things. One, Andy and I accepted it and were excited. Our acceptance rubbed off on others. If we would have been miserable....everyone would have been miserable. And two, we live in a very liberal city. Madison, WI. My favorite place on earth. The Madison Area Down Syndrome Society was wonderful and still is. Each nurse or doctor had a personal friend that, if we wanted, they would connect us to.

Once we were ready to move on, we were immediately bombarded with support. It was amazing and not pushy and they let us take our time. They wanted, in the long run, for me to delivery a healthy baby girl. Their main concern was her heart....not Down syndrome.

I think she's doing alright



The reason I am talking about this now? Harper and I were able to help a friend out and talk about our story. I have talked about Patti and Lily before and I'll do it again. Read her story here and see little Miss H and read a snipit of my story.

What has H been up to? Ahh just a whole lot of sweet potatoes!

video


video

Sunday, March 11, 2012

Regrouping and happiness

This weekend was about regrouping. Just Andy and I....at the Kalahari in the Wisconsin Dells. Me, Andy, the Kalahari, and two monster drinks. Yep, monster.

I was lame and had the bartender add more Sprite in mine. 



It was a simple weekend, a fun weekend, and a much needed weekend to regroup.

This was my first weekend without Harper and man did I miss her! I was reminded of her every time we passed a giraffe at the hotel and when we passed by the cutest girl who had to be around 4 who had Down syndrome but had the cutest long brown pigtails! I just wanted to stop and squeeze her but thought I'd be arrested or slugged by her mother!

The happiness I felt while passing that little girl was genuine. I don't know her or her mother but I know them. I hope that her mom has had the same support and love that I have felt in the past 6 months. I hope she knows what a blessing her daughter is and how she is helping change the world.

World Down Syndrome Day is approaching. March 21st to be exact. There is a fantastic video that you can see here that the International Down Syndrome Coalition for Life created. I had every intention to participate but life got in the way (I really need to get it together). I have only watched this once because I cried. While I cried Harper laughed at me. So, I know it's a good video. This video means the world me to not only because I recognize a few friendly faces but because I recognize what it stands far and what each parent  has felt.

Take a second to watch the video but in the meantime here are a few pics from the past week.

Which of these things does not belong?



Can't leave the girl alone now. 

Loving my yellow shoes and hanneling Kelle Hampton. 

Saturday, March 10, 2012

Blog friends are real friends too

My blog friend Patti has been posting a series of posts regarding prenatal tests done in the first trimester of pregnancy to detect Down syndrome. She is a wise woman that Patti (and also preggers with baby number 11).  Recently she had a request for us mama's to share some words regarding our experience and asked for pictures of our babies/kids. Of course I wanted to help!

You can find Patti's post here. And you can see a pic of Miss Harper Alice.....she is going to be famous one day I swear!

Take a minute to read Patti's posts on the prenatal testing. I have many thoughts on these tests, but sadly, I struggling with finding time to write them down to share.

This is a short post because the hubby is whisking me away to Wisconsin Dells for the weekend and grandma and grandpa will be here any minute to watch the monkey for the night!


Saturday, March 3, 2012

Down syndrome and unwanted apologies

This March 21st marks World Down Syndrome Day. It's 3.21 for 3 copies of the 21st chromosome. This day is going to rock this year. I am excited because it's a day of celebration in this house. We are celebrating and embracing Down syndrome, not only for Harper but for her other friends out there is blogland. This day is going to Harper, Fiona, Lily, Nella, Liddy, Ollie, Bree, Mia and all of the other kiddos that we are "friends" with. We love you and couldn't have made it this far in our journey without you!



It's not often that I think about Down syndrome.  It's the honest truth. I don't look at her in the morning when I wake her up and say, "good morning Down syndrome." I say "good morning Harper." Down syndrome is not often on my mind. I am even pretty good at not comparing her to other typical babies. And when I do I compare abilities because of her heart condition, not because of Ds. With or without Ds, Harper isn't a typical baby. She is a delight. She is sweet, loving, and damn cute. Her smile can melt a rigid heart and turn a frown upside down. If you look close she has one dimple and that one dimple alone will make you swoon.



Lots of people (not my readers because my readers are wise and intelligent) think Down syndrome is a curse or unwanted. I am a member of many Down syndrome groups on Facebook and friends with many other mamas of kiddos with Ds. Usually I enjoy these posts. However, I recently read a post of a member who is pregnant and recently had a Ds diagnosis. In many cases her "friends" apologized. That made me mad. Chalk it up to lack of sleep and influx of stress but I was so mad I cried. This mama-to-be is embracing Ds before it was even confirmed. She is one of us. Her and her husband are the chosen ones. They had big enough hearts to research the crap out of Ds before it was even confirmed and people are apologizing. Now I am not speaking for her and she will, most likely, not even read this post. But please do. not. ever. apologize to me because Harper has Down syndrome.

The day, and I mean the day, we found out that Harper could of Down syndrome we told our immediate family and a few friends. We also told them that our little girl was a baby first and foremost and Ds and heart condition came after that. We didn't want apologies. We wanted blessings and love. And we got it. 

Our doctors were magnificent. Yes they told us our options but only mentioned it once and didn't push. Madison is a great liberal city and progressive doesn't even begin to describe this town accurately. The doctors were accepting and began leading us in the right medical direction. They were as excited to meet Harper as we were. 

My point is please do not look at a parent of a child with a disability and feel sorry for them. Most likely, they don't want sympathy. Your energy can be spent elsewhere. Instead, look at those parents and remember they were chosen for this path. Just like you were chosen for yours. Every child is special and meant to be a child and to have loving parents.