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. 

Sunday, February 16, 2014

If you give a mom some cereal...

I wrote this a few years ago, but was reminded of it today.  I found it and decided to repost it here.  

If you give a mother some cereal, she's going to want to refill the cereal jar. 
When she refills the jar, the box will be empty.
She'll want to recycle it.
When she takes the box outside to the recycling bin, she'll realize the sprinkler in the backyard needs to be moved. 
When she goes to move the sprinkler, she'll realize the backyard has been watered enough and she'll want to water the front yard instead.
When she takes the sprinkler out front, she'll realize all the flowers need watered.
When she waters the flowers, she'll want to pull weeds. 
When she's done pulling weeds, she'll want to wash her hands.
When she washes her hands, she'll realize her cereal bowl is still sitting empty on the counter.  
She'll want to fill it and add milk. 
She'll empty the milk carton and then she'll want to recycle it.

See where this is going? I still haven't eaten breakfast!




Sunday, February 9, 2014

Fear

So here it is...my first post in almost 3 months.  You should probably just quit now.  I'll even give you your Cade picture early so you don't miss out:



Why has it been 3 months?  I've certainly been busy, but that's not the reason.  It's not writer's block, I always have a lot to say.  It's this...I have too many emotions and none of them good.  Well, some of them are.  But most of them don't feel very good.  Who wants to write about that?  Or read about it?  (But see, I told you to quit, so don't blame me.)

On December 3, it was our one-year anniversary for finding out that Cade would definitely have Down syndrome.  Pretty crappy anniversary and while I'd rather forget about, I just couldn't.   I honored the day with quiet solemnity.  Or morose melancholy, depending on whether you're asking me or my husband.  (Who, by the way, was totally fine and didn't understand why I was focusing on such old news.)

Anyway, I had a LOT of emotions well up that I didn't expect.  All the yucky feelings of the year before came flooding back, overwhelming my desire to write anything good.  Since I couldn't figure out how to write anything positive, I didn't write at all.  Really, my feelings were too big for a blog post.

I love my Cade a million different ways, but if I could take away Down syndrome, I would.  I accept that he has it, I accept that life will be harder for him, I accept that life will be harder for me.  But if I could remove it, I would in a heartbeat.  Down syndrome does not, WILL NOT, define him.  I hope.

And I guess that's my big fear...what if it DOES define him?  It surely will in the eyes of others.  I see my sweet baby, and I see how others coo and giggle with him.  Everyone loves Cade!  But he's little and he's cute and he's easy to love.  What about when he's 4, or 8, or 18?  What about when he's not so little and not quite so cute...will he still be easy to love (by others, I mean.  I, of course, will always love him.)

I've been following the Robert Ethan Saylor story since it happened.  If you're not familiar, you can read the whole story here.  Ethan's story is the epitome of my fears for Cade.  I recently saw a video montage of Ethan's life.  He was adorable as a baby, chubby-cheeked and wide-eyed.  Just like Cade.  But as he aged, he gained weight and lost the cute baby look.  By the time he died, at 26, he looked like the stereotypical person with Down syndrome: overweight, unkempt, and not all that attractive.  His mother and sister clearly loved him, but I imagine lots of people avoided him.  And it resulted in his early death.  I don't want that for Cade!!!!! 

My only ray of hope is this:  therapy is a lot different now than it was 26 years ago.  Nowadays, kids with Down syndrome go to regular schools, sit in regular classes and learn alongside their typical peers.  Kids with Down syndrome go to ballet, soccer, karate, and art classes.  Our kids can learn to play the violin beautifully.  Our kids can take award-winning photos.  I even keep a list of people who have Down syndrome but also hold professional jobs.  Pretty awesome, right?  THAT'S what I want for Cade.

I look at my baby boy this morning, playing with maracas, and I smile.  He's amazing, and awesome, and he's going to shatter stereotypes.  And even if he doesn't, I'll love him just the same.  But my mama heart hopes for more.  

If you read this far, then I'll reward you with a bunch more photos of Cade-O.  Rock on, Dudes.






Saturday, November 23, 2013

One year check-in

It's been almost a year since we got Cade's diagnosis.  How are things going for us now?

Cade is 7 months old (we got his diagnosis when I was 5 months pregnant).  He's eating solid foods, sitting up, and has two teeth.

He's generally a happy baby, but not "always happy" the way that you hear.  He has the same emotions as everyone else and lets us know when something isn't going his way.

His hearing is great.

His vision is great.

His heart is great.

His health is great.

Camille and Colby adore him and think he's the best baby ever.  Their relationship is great.

Shannon and I can't imagine not having Cade in our family.  Being his mommy is great.

One year ago, I was in tears and wondering why God would do this to us.  Today, I'm so thrilled that "God did this to us."  Cade is perfect and wonderful and we're doing GREAT!


Sunday, November 10, 2013

Tread softly

Hang around Facebook long enough, or most anywhere else, and you'll find hurting people.  But many times, no one knows they're hurting.  They suffer in silence, reluctant or unable to share with the world.

So...a reminder today to tread softly.  I know it's cliche, but you never know what someone is silently suffering.  Before you write a snarky Facebook post, make a snide comment, or fire off 140 characters on Twitter, think...

I'm going to use my sister-in-law as an example, because I'm pretty sure she'll forgive me.

Last year, at exactly this time, we started our journey in the world of Down syndrome.  From the first question mark to the diagnosis took almost a month.  That time was utter hell.  Believe me when I say that waiting for bad news can be harder than finally receiving it. 

We chose not to tell anyone, not even our mothers.  We didn't want to worry anyone because, surely, the tests would end up being negative.  We honestly thought it would all blow over and later we'd laugh nervously about how close we'd come.  So we suffered silently, just the two of us.

Thanksgiving Day was brutal.  BRUTAL.  It stands out as one of the hardest days of my life.  We had just had The Big Ultrasound a few days prior and everyone was expecting us to reveal the gender of our new little one.  But unbeknownst to all, the big ultrasound wasn't much fun since it showed that our son had a 1:3 chance of having Down syndrome.  We went ahead with our gender reveal, but in the photos I look like I'm about to cry.

Pumpkin cheesecake with a hidden layer of blue

That weekend, despite the rain, we decided to go look for a Christmas tree.  It was cold, and drizzly, but we were determined to have fun for Camille and Colby.  Our hearts were heavy as we trod the tree stands, looking for the perfect tree.  As we went, I posted pics to Facebook.  Camille by a tree.  Colby helping cut it down.  The two of them dragging it to the car.

When I got home, I had a message from my sister-in-law.  She was upset that we hadn't invited her.  And so she posted on Facebook how we should have been more thoughtful.  I cried as I deleted the post.  An hour later, she posted again.  I sobbed for an hour.

I'd been through the hardest 10 days of my life and I had at least 10 more to go before we got our final diagnosis.  I was crushed, broken, not sleeping.  I was doing my very best to hold it all together for the sake of our kids.

To my sister-in-law, whom I adore and love, it was a missed opportunity to spend some family time.  To me, in my heart I was facing WWIII and I didn't give a rip about a tree.

So today, as we go into a new holiday season, I want to give a gentle reminder...tread softly.  Think before you speak.  If your friend offends you, give her the benefit of the doubt.  She may very well be dealing the best she can with something beyond her control.