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!

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. 

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!

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.

Slippery Slope

I know how lucky I am. Really I do. Some people do not agree or, better yet, understand. A daughter with Down syndrome and Open Heart Surgery at 4 months does not equal lucky. I disagree. If you have meet Harper you would also disagree. Her smile is contagious and her cuteness radiates. She isn't just Down syndrome or the baby who had Open Heart Surgery. I know how lucky I am. I have known since last January when I found out I was pregnant.

Pregnancy didn't come easy to us. Another story for another time. We have emotional battle scars but were fortunate that Harper survived. Yes we had our scares during pregnancy (hence the early delivery) but we didn't experience a loss of a pregnancy. I know that miscarriage is a fact of life. Like death, I don't understand why it happens to good people. Or why pregnancy occurs easily for those who are not trying and those who try and want desperately to be parents struggle. The struggle sucks but the reward is (or at least should be) life changing.

My thoughts are with you my dear friends. And know my shoulders are always available.

A child with Down syndrome is just that...a child and a human. An article came across a status update on Facebook and I hesitated to open it because I knew I would get worked up. And I bet my house that the majority of you will also.  Read the story here.


The circumstances, the authors state, where after-birth abortion should be considered acceptable include instances where the newborn would be putting the well-being of the family at risk, even if it had the potential for an “acceptable” life. The authors cite Downs Syndrome as an example, stating that while the quality of life of individuals with Downs is often reported as happy, “such children might be an unbearable burden on the family and on society as a whole, when the state economically provides for their care.”

First: After-birth abortion is MURDER.
Second: It's DOWN syndrome. Not DOWNS syndrome.
Third: The word Downs is unacceptable.
Fourth: Child with Ds are not an "unbearable burden." This thought of  an "after-birth" abortion is an unbearable burden for me.

Just look at this face

It should not be permissible to kill a child because it is not exactly what you had in mind. This is a slippery slope. I wanted a brunette baby with green eyes. I didn't get that. Should I have an after-birth abortion?

This is a topic that is completely ridiculous and sadden. Anyone who is considering abortion of a child with Ds or an after-birth abortion (even the phrase is ridiculous) can email me and we will set up a time for you to meet Harper and come visit the 90 children I have enrolled at school. I guarantee your heart will melt and you will live for your child.

Do you see now why I couldn't quote more of the article?! Thanks Faith for posting it. You are right....slippery slope indeed.

Balance

Can you tell I'm back to work? More time elapses between blog posts. Once I get my mommy feet back under me I promise I'll be better at managing my time.

The first time I returned to work from maternity leave I was able to jump right back into the swing of things. This time around....I'm struggling. Struggling to work without thinking about Harper (who is right down the hall), struggling to hang out with Harper without thinking about work (damn obsessive mind). And struggling to fight the feeling that I'm constantly doggie-paddling through life. Dishes and laundry just waiting to be done. Shows that are DVR'd from 2 weeks ago are awaiting my return (sorry Glee I promise I haven't left you).

I know this is normal but honestly, I thought because I had bypassed this feeling the first time that the second time would be even easier. Buzzzz.....WRONG! 


Today I was able to stop to smell the roses. And new baby smell. Harper and I got to meet new baby Greta today. And boy is she cute.

Cue the picture of her cuteness. Oh wait, my balance was off and I forgot to take one. See? Proof I'm not quite myself right now.

You will have to take my word for it but she is adorable. She has the new baby smell, the new baby cry, and the new baby cuddles down pat. She made Harper look like a giant and we all know H is as teeny as a 5 1/2 month old gets! Thanks Mary George for letting us spend the day with you, Greta, B, and of course Joel!

While I am a bad friend and forgot to take a picture of a sweet newborn baby...I was able to snap a few of Harper being a big girl. Give this chick a few more days and she will be rolling over on her own. That damn should gets in the way!

Cousin Mia and H

Baby Gaga

Big girl 

Happy Valentines Day

Sleeping Beauty

Now I know that finding my balance is going to take awhile. I'm impatient. I always have been so waiting is not something I am necessarily good at. I need instant gratification and quite honestly I want to feel sane again.

The Special Mother

I came across this story far too late. I would have loved to have read this after we had Harper's diagnosis but alas I read it about two weeks ago. Despite the timing, it is still amazing how true this story is and how emotional it makes me. 

I have always said that I knew Andy and I were chosen for a reason to be Harper's parents but I never knew what the reason was until I read this story. I also believe that mother can be substituted with father and/or parents. 




The Special Mother

by Erma Bombeck



Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air. 

God smiles, "A mirror will suffice."


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Pretty awesome huh?! You know what else is awesome? Harper's newest pictures! I plan on writing a complete post about the fantastic organization that allowed these pictures. But for now...a quick preview!

I got into the action too!

Closest to a smile you are going to get