Parenthood. Life. Down syndrome. Faith.

My life changed a lot when I found out my 3rd child would be born with Down syndrome. But then again, it really hasn't changed so much.

We're still living life, trusting God, raising our kids, and loving having a baby in the house.



Monday, March 31, 2014

In the news

I post a lot on my personal facebook about Down syndrome awareness.  One post about the new Down Syndrome Diagnosis Network caught the eye of a friend who is also a local news anchor and he came to our house to do a special report!

You can see the report here, or watch the video below.






In other news, today is Super Cade's birthday party.  Can't wait to watch him dig into a cupcake!

Sunday, March 30, 2014

My last first birthday

My last journey of motherhood began one year ago today.  *sigh*  One year ago, I woke at 3 am.  I laid awake in the dark and thought how nice it would be to go into labor.  My mom had arrived from Missouri, the bags were packed, everything was ready.  I thought "Please Lord, just a little contraction, just to let me know the baby is okay?"  Lo and behold, a tiny contraction.  I smiled and rubbed my belly.  "Wouldn't it be funny, God, if my water broke right now?"

Gush.

Um....seriously, what was that?

I laid there a bit longer, and decided that one way or another, I had to get up and change clothes.  In the dark bedroom, as I stumbled around for fresh clothing, I felt one little gush after another.  I think...really?  I think my water broke!

Sure enough, that was the beginning of Cade's birth.  My mom had barely been in town for 12 hours.  I hadn't even had a chance to show her where things were yet.  After a mad scramble to shower, get the last things ready, and show mom where Colby's diapers were, we headed to the hospital. My OB was on call that day and she was in my room soon after we arrived.  Things were progressing and I couldn't wait to meet Cade.

Around 10:30 am, Cade's heart rate plummeted.  My OB rushed in and as they worked to bring up Cade's heart rate, the room filled with people.  Ten minutes later, my doctor said his heart rate was too low and we couldn't wait any longer.  Down the hall we went (seriously, it was like a movie, the hallway lights flashing by overhead) to the OR.  Minutes later, I heard my son cry for the first time.

 

A NICU team was standing by just in case his heart issues were worse than expected.  I chatted with my OB and anesthesiologist while I waited for my son.


He was perfectly healthy, beautiful, and ready to meet his mama!


Today our tiny boy is one year old.  He's not tiny anymore, though when he's asleep and I hold him just right I can still pretend that he is.   My last baby, my last newborn, my final first birthday. 





Wednesday, March 26, 2014

One year

Holy smokes, where does time go?  On Sunday, this guy turns one year old:




When he was diagnosed with Down syndrome halfway through my pregnancy, I felt fear, discouragement, and mostly more fear.  The "what ifs" kept me up at night.

When he was born, I was excited to meet him.  I instantly fell in love with our new little boy.

A few days ago, someone asked me what it was like to raise a child with a disability.  I thought for a moment and realized, I have no idea.  Cade's just a baby.  I've been able to raise him the same as my other babies.  So far, Down syndrome means nothing except more doctor appointments.  He's funny, and adorable, and charming.  He cries when he's unhappy, he laughs when he's tickled, and his face lights up when he sees his brother or sister. 

Later this week, we'll celebrate this big boy's first birthday.  But for now, I'm going to enjoy his babyhood just a bit longer.

Sunday, March 23, 2014

World Down Syndrome Day

March 21 was World Down Syndrome Day!  We celebrated by wearing a 3/21 tshirt and laying around feeling yucky.  It would have been more fun if we hadn't been sick!  But anyway, a lot of fun things happened this weekend.  Here are the highlights...


Down Syndrome Diagnosis Network (DSDN) launches with a website, Facebook groups, and lots of support for families just receiving a diagnosis.  I'm super proud of this site and the mamas who've gotten it started.

Our Mission: The Down Syndrome Diagnosis Network (DSDN) supports families with current information and real-life accounts of life with Down syndrome during the prenatal to early childhood phases. DSDN is committed to facilitating unbiased, family-centered discussion of Down syndrome within the medical community.  We strive to cultivate a culture of acceptance and inclusion for people with Down syndrome at all stages of life.



{Unexpected}: Stories of a Down syndrome diagnosis also launches.  This amazing collection tells the stories of dozens of families who've received a diagnosis.  Prenatal, birth, those who waited out a potential diagnosis, and those with unusual circumstances have all come together to share stories with the world and encourage families just arriving at their Down syndrome journey.  Cade's story is in the Prenatal Section.

{Unexpected} is a collection of stories that include real-life accounts from families who have received a diagnosis of Trisomy 21 (Down syndrome).  Families from around the world share what it was like for them to receive a prenatal, birth, or uniquely timed diagnosis, and those families with a potential but unconfirmed diagnosis share their experiences as well. Readers will follow along as the contributors describe the many facets of their diagnosis experience and the range of emotions that came with it.




Gift Baskets for Down Syndrome Diagnoses is my own personal project.  While I received a prenatal diagnosis and had plenty of time to prepare before birth, many families are still surprised with a birth diagnosis.  A gift basket full of useful items, books about Down syndrome, and brochures for local and national resources is a great way to welcome these new families into our community.  I've started a GoFundMe page to help raise the money for these baskets.  Only $500 will pay for baskets for every family receiving a Ds diagnosis in our local area for 2 years.  My plan to assemble all of the baskets, then deliver them to maternity nurses and lactation consultants who can get them to the families while still in the hospital.  

$500 will pay for 10 (or more) gift baskets.  I'll buy as much at wholesale as possible, and even ask for donation from our business vendors.  More baskets = more families reached with a personal welcome.  Thank you for your support and for sharing this goal!

Wednesday, March 5, 2014

Spread the word to end the word

There's a word that's always made me uncomfortable.  Even as a kid, I had an icky feeling whenever anyone used it.

Retarded.

There, I said it.  And now I have a bitter taste in my mouth that water can't wash away.

When I was a kid, our school housed the special education students.  They were in another wing, away from all of the other students.  They were, officially, "learning disabled", or LD for short.  Occassionally our line would pass their line in the hallway and we'd all have a good stare, tittering amongst ourselves later about the one who was flapping, or drooling, or had funny eyes.  They were LD.

Later, in high school, boys would tease one another.  "You're LD!" they'd say.  It was never, ever, a kind term.

The word "retarded" is like that now.  No one ever says it and means it in a good way.  It's never complimentary and it never means you've done something well.  It doesn't mean you're beautiful, or that you've said something witty.


Someday, someone will say this precious boy is retarded.  They won't be talking about how cute he is, or how much we love him.  Instead, they'll be teasing him.

I pray that day never comes.  And there's something that you can help me do about it...pledge to never, ever, ever, use that word.  Don't use it to tease your friends.  Don't use it to say that something is unattractive.  Don't say it because you've done something stupid.  Just don't say it at all.  Words hurt.  It doesn't hurt Cade right now, but it hurts his mama.  It hurts his sister.  It hurts his papa.  And we love him very, very much. 

Sign the pledge at www.r-word.org.  Stamp out the word.


www.r-word.org

www.r-word.org



Tuesday, March 4, 2014

End the r-word

Don't let my Cade become another victim of the r-word. 
End the word.