Monday, January 26, 2009

Baby #3 and The Unexpected

I'm way behind in posting this and some of you know and some of you don't that we are expecting baby #3 (a little girl!) on April 5th. We, of course, have known for a long, long time but I don't usually tell people that I'm expecting until after I know the gender or until people look at me and realize I'm wearing maternity clothes--which I have been wearing for several weeks now, but some people STILL don't know (I guess they just think I'm getting really fat?!?) so I thought I'd post about it. I'm a little at a loss as to what to do with a girl and completely overwhelmed at all the accessories that come with girls--you'd think that, being a girl myself, I would know what to do, but after having two boys, I'm not sure that I know what to get when I walk into the pink aisle!

Along with the newness of having a girl, we also found out that our daughter has Down syndrome and a congenital heart defect (called AV canal defect, or AVSD) that will require open heart surgery sometime this summer. While the news came as quite a shock, we are excited about welcoming this sweet little daughter of God into our family and no sympathy is needed. We have been very blessed to have children sent to our family and feel that our daughter will also be a blessing to us.

Since receiving this news, we've realized that most people don't know what to say when we tell them or that people say things that they don't realize are offensive. While we don't want to be the politically correct police, we do plan on being an advocate for our daughter. So here are a few things that people should know:

  • Using the word retarded for anything you don't like is extremely offensive. If you think something or someone is doing something unpleasant, please use a different word. Retarded actually means "slow" not stupid or rediculous.
  • An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.
  • Please use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs". It is also inappropriate to say "a person is Down syndrome"...they are a person, not a syndrome.
  • A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."
One other story that is well known among parents that have children with disabilities and which describes the feelings really well, is called "Welcome to Holland" by Emily Perl Kingsley. We thought we'd add that here to give some insight.
Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley. All rights reserved.


Kate said...

I am sorry Sis. Roberts!! But You're right, she's going to be a BEAUTIFUL daughter of God, and will be extremly lucky to have you and Darrin as parents. That is really scary though! I hope everything goes okay- and you'll be in my prayers.

The Luebbe Family said...

Carrie, I just wanted to tell you that your writing was really beautiful and you and your family continue to be in our prayers. Kate has prayed for baby Roberts with me, too.

I think you are an amazing mother and I admire that you are already thinking and acting like her advocate. Your daughter is so lucky to be coming in to your family full of love and protection. I also like that you posted about what words you don't want to hear. It is nice when parents just put it out there like that! I read some of Jenny McCarthy's book recently at the library and I liked how she said children with autism are not and should not be labeled as "autistic." That really made me think about how much words can hurt. In this world, your child will find so much opportunity!!!! I will continue to pray for you and your family- I can't wait to see pictures of your beautiful bundle of love!!!! :)

Marisa said...

Seeing as I am not around to see you "get fat" let me say-Congrats!!!! As for her "disability" I have always believed that the most righteous of our Heavenly Father's children are protected when they come to this earth, so how fortunate are you to be able to be the parent of such a special child. Travis has one brother with Downs and another with a mental disability-they are the best! Good luck with the surgery this summer, let me know if you'd like any girl clothes as ours will be a boy!

Lisa R said...

I am so excited that you are having a little girl! I kind of feel the same as you, that I don't know what to do with a little girl! I am sure she will be adorable and that your 2 sweet big boys will be a big help to you and will help you on your new journey! So do you always have kiddos in the midst of moving!!!

I work with adults that have Downs, and they along with their parents are always so inspiring and I am amazed at how much they accomplish despite their challenges. Many times more than the average adult! Thank you for sharing your story, you have inspired and educated many.

abi said...

I love the Holland story. I know that you will be a great mom to your little girl and your family will adore her so much. You and your family will grow so much through the experience of bringing up your special little girl and I think it is wonderful! I hope that all goes well with her heart and your pregnancy continues without problems! Do you have a name picked out yet?

Kurt and Kristy said...

How exciting it will be to have a little girl! She will be so blessed to have you as her parents! You are in our prayers and hope and pray everything continues to go well and her surgeries as well!

Jaydee and Shaunda said...

You don't know me. I came across your blog from Marisa's blog. I have never commented on a strangers blog before, but I felt like I needed to today. I was raised in Lincoln, but have sinced move away.
Congratulations on your little girl. I don't know if this will help or not, but my good friend gave birth to her sixth child last year, and he was diagnosed with Down Syndrome. Reading her blog has been an inspiration to me. She also has links on it to other blogs and support groups. Maybe you have information, but if not here is her blog address if you are interested in linking up with her.
Also, I saw that your husband is looking for jobs. My vote is for Havre, Montana. We have lived in Great Falls, Montana for six years and have LOVED it. (I am assumming you are LDS from other posts I read) Havre ward is in our stake. Havre itself is a small town, but has lots of opportunities. If you have any questions about Montana, I would be happy to answer them.
Our prayers are with you and your family with the upcoming birth and also new job!
Shaunda Burns

Joni said...

Congratulations! I felt a little overwhelmed too when I found out I was having a boy after two girls. But you will have so much fun with a little girl!

She is a very lucky little girl to be coming to your family. She will never know anything but love. I too will pray that the birth and surgery go well!

Michelle said...

Carrie you are so amazing! I agree that your little girl is so lucky to have such a wonderful family to come to and be a apart of forever. I am also sure that she will be the cutest girl ever, because you know I just think your boys are the cutest kids and so it's a given. :)Thank you for being such a wonderful example to me. You and your family are in my prayers.

The Mussertons said...

Your post is beautiful Carrie! I love what you said about being an advocate for your daughter, after all parenting is never easy. BTW, you look fabulous. :) I am so excited to meet your little girl, I know your boys are going to love being big brothers to a little sister. Melaney

rachel said...

Hi Carrie -
Thanks for your post on my blog. Sorry you had to catch it on a crummy day. Congratulations on your pregnancy! It is always exciting to add another little one to the family. I love the "Welcome to Holland" it touches my heart every time I read it. I would love to chat with you about our life with a kiddo with Down Syndrome. Email me and I'll send you my phone number. I'll be happy to send emails back and forth or chat with you on the phone.

Hugs! Rachel
PS - I am indeed LDS and my birthday is Jan 1st - what a coincidence!! I bet we'll get along just fine! :)

Heidi said...

Carrie, thanks for the post. Your children are adorable, and you have a very lucky little girl coming to your home! Jim & I ran into Rylan (and Darrin) with his little shopping cart today, and I thought about what good parents you are to your children!

I especially like the attitude portrayed in the Holland story. It's hard to think that Heavenly Father knows what he's doing, but I truly believe that with all my heart. I am positive that definitely some extremely sweet moments in your future!

Kate said...

Thank you- I hope I am growing!!! Perhaps it's because I have once again started reading my scriptures and praying (Finally!) or because I have such an amazing young womens president!! :D

Jaydee and Shaunda said...

Sorry it took me a little while to respond. It looks like you and Rachel have linked up. I don't know the Campbell or Houston family. There are 7 wards here in Great Falls, but they are divided among two stakes, so I don't know many people in the other stake. We are in the military and will be moving from Great Falls at the end of March; but we have lived here for six years and have loved it.
Anyway, we wish you and your family the best.

Courtney said...

Extremely well put. I love the Holland story. I can't wait for you to have a little girl- they are so much fun to play dress-up with. (and yes it is totally okay to change their clothes 3x a day)

Katy and Landon said...

Hi - this is total random post...I was leaving on comment on Rachel's blog and saw your comment and now I'm here. I feel like a stalker. Anyway, I have a two year old son with Down Syndrome (he's our first) and I'm so glad you are already trying to educate the public on your special child. And yes, the Holland story is a must and something you will reread quite often. Congratulations for the upcoming birth of your baby girl!

Don't feel that you have to, but feel free to check out our blog (by clicking on my name above) or feel free to ever email me if you have questions, vents, whatever, from yet another LDS mom that knows what you are going through: I too love connecting with other moms that know and understand this unique road we are on.

Good luck and good wishes for your pregnancy! I hope all goes well and know that Heavenly Father has a special eye out for moms like us!

Kate said...

Nope- still extremly stressed!! Just wait- I'm sure you'll get to hear all about it one day when I really do have my mental breakdown!! I got my shoes at Forever Young in Utah. Amazing store- wish we had one here!! :D
How's Tate?

Wilkerson Family said...

I found your blog through the Cannon's. I was being a bit of a blogging stalker today...
I really liked your post. I think your right when you say that people aren't sure how to respond. I loved the story you posted. Having said that, I'm so excited for you to have a girl. Your boys always look adorable, but dresses and bows are so much fun.

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