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.



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. 

Tuesday, November 5, 2013

Loss & Update

I don't really know what to say, but as the tears roll I wanted to update on little Rosie, the baby I was fundraising for this year.  I just received an email from Reece's Rainbow that Rosie has died.  I don't know when or from what, though I do know she was never very healthy and had had a heart condition that was repaired surgically. 

In just over 24 hours, we raised $220.50 for Rosie's adoption fund, 1/5 of our 2-month goal.  I know we would have made it to the full amount with no problem.  I'm crushed by Rosie's death.  I chose her because she looked a bit like my own Cade.  I've been praying over her since September when I committed to being her "Angel Tree Warrior".  And I was excited to maybe play a small role in her finding her forever home. 

Today, I'm brokenhearted.  I do find comfort that Rosie didn't die without love, for even though I never met her, I thought of her daily.  And Reece's Rainbow is letting me choose which child Rosie's fund will pass to.  I haven't made that choice yet, but it will be another child with Down syndrome from the same country.

Anyway, thank you for supporting me and Rosie by your donations and God bless.  I'm holding my baby a bit closer and I hope you will, too. 

God speed, Rosie.




Update:  I've chosen Janie as the recipient for Rosie's funds.  Janie is from the same country as Rosie and was also born in August 2012.   http://reecesrainbow.org/66573/Janie





Update 2:  On 11/7/13 I found out that Janie has found her forever family!  A family found her via the Angel Tree program and has committed to loving her forever.  I'm so happy with this news.  
$220.50 of Janie's fund came from Rosie

Monday, November 4, 2013

Reece's Rainbow Angel Tree

Reece's Rainbow is a website dedicated to helping children with Down syndrome find adoptive homes.  Worldwide, children with Down syndrome are viewed as worthless, shameful, and completely without value.  In many countries, there are simply no resources whatsoever for raising a child with special needs.  Very often, these children end up in orphanages, where they spend their childhoods without love or family.  Sometimes they lack even basic nutrition, fresh air, and necessities.

Thankfully Reece's Rainbow has stepped in to offer hope.  And each year at Christmas, they have a unique program to help raise money for each child's adoption fund.  That way, when an adoptive family is found, there's a starter fund to get them going.

This year, in honor of Cade, I decided I could help a child find her forever family.  A friend sent me this photo and I couldn't help but see the resemblance to Cade.

Rosie - an orphaned baby girl with Down syndrome
Rosie was born in August 2012.  She has Down syndrome and a heart defect that was repaired by surgery in March 2013, the same month Cade was born.  She's often sick with fevers and bronchitis.  At the time of her listing, she was working to learn to roll over, just as Cade is now.

Rosie had my heart and now for the next 2 months, she'll have my help as well.  My goal is to raise $1000 for Rosie's adoption fund.  We aren't adopting her, just helping to start her fund for her future adoptive parents.  And who knows, maybe someone who sees her because of my efforts will fall in love and she'll find her forever home with one of YOU.

There are lots of ways to help.
  1. See update at bottom


http://static.reecesrainbow.org/angeltree2013/
 
 
Update: On November 5, 2013, I received word from Reece's Rainbow that Rosie had passed away in her orphanage.  She did find her forever home, though not quite as I imagined.  Reece's Rainbow allowed me to choose who would receive Rosie's funds, and I've chosen another little girl named Janie.  I won't be fundraising for Janie, but she'll get a nice start to her adoption grant thanks to all of you. 

Sunday, November 3, 2013

Mommy guilt: It's never enough.

Today I'm feeling vulnerable.  We had a rough night and I'm not feeling well.  Shannon took the kids out so I could rest.  Instead, this blog post bobbed to the surface of my mind and had to be written.

Mommy guilt.  We all feel it, I think it's universal for mothers of all ages.  Certainly I've had my fair share while raising our older two kids (currently 8 and 3).  But I've always consoled myself that if I screw up, they can still find their own way in the world.

Lots of groups post stories online about kids with Down syndrome who grow up to have amazing abilities.  I even track some of them on my own blog.  Professional photographers, renowned dancers and artists, violin prodigies.  And the back story for many of them is parents who followed an aggressive therapy regimen.  These stories are posted with the intent to encourage...see what your child is capable of doing!  Your kids have unlimited potential! 

On most of my days, I love these stories because they do encourage me.  But on my mommy guilt days, I feel awful for not doing enough therapy with Cade.  For skipping days altogether, for forgetting particular exercises.  And then I think, is he behind because of me?

My concerns aren't baseless.  Research has shown that the more therapy a child receives, the better they do later on.  The reasons for this aren't clear.  Is it the therapy itself?  Is it the result of more time and attention from parents?

The questions cascade.  Would he be sitting up now if I did his therapy religiously?  Would he be able to roll from belly to back if I worked harder with him?  If I buckle down, will he walk before he's two?  If he gets behind now, how much farther will he be behind when school starts?

I feel that I'm failing him.  Every day that I'm "too busy" to complete the therapy exercises is a day lost forever.  Isn't Cade more important than my to-do list?  Of course he is. 

I don't have any answers today.  What I do know is that while today may be a waste, tomorrow is not.  God has a fresh batch of hours and energy waiting just for me.


Homemade applesauce!

At 7 months, he LOVES the jumper!  He finally plays with the toys and can bounce a little to make the music play.