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.



Tuesday, August 27, 2013

It Is Well

In 2009, I had a miscarriage in the 12th week.  We'd tried for 2 years to become pregnant and we were overjoyed.  And equally devastated when it ended so early.  I ended up in the emergency room with massive hemorrhaging.  As they tried to stabilize me, the doctors and nurses and technicians flowed in and out of the room.  Bright lights, beeping machines, the steady drip of the IV.  Through it all, over and over and over, for hours, the song It Is Well With My Soul went through my mind.  This song was written by a man who'd just suffered the loss of his 4 daughters in a shipwreck.  He knew grief.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to know,
It is well, it is well, with my soul.

By the end of the day, lying in recovery after emergency surgery at 2 am, I didn't understand why our baby didn't live.  I didn't understand God's plan.  But I knew this: it really was well with my soul.  Though I suffered a loss I couldn't accept, I could be peaceful with my knowledge that God would never leave me to suffer alone.

In 2012, finding out that our third child would have Down syndrome was gut-wrenching.  Painful.  I grieved.  But through that time, the words of that same song flowed through my heart like a healing balm.  It is well with my soul.  It is well with my soul.  It is well with my soul.  Some nights I sobbed into my pillow as the words ran through my mind.  It became my mantra.  My lifeline.  And soon, every part of my soul was well with Cade's diagnosis.  I felt healthy and whole and ready to meet my baby.

Over the years, my husband and I have shared many joys and triumphs.  We've also shared times of bewilderment, pain, and grief.  The failure of our first business.  Bankruptcy.  The loss of a beloved pet.  Miscarriage.  Down syndrome.  But through it all, we walk together in faith in God.  I still don't understand His plan a lot of the time, but I trust in Him.  It is well with my soul.  

Camille - 9 months
Colby - 9 months
Cade - 3 months

Thursday, August 22, 2013

Dear Cade

Dear Cade,
Today I saw a photo of a grown man with Down syndrome.  He was everything people think that Down syndrome is...overweight, blankly staring, mouth open.  Tears sprang to my eyes as I stared at the picture.  I want so much more for you.  I expect so much more for you.  You will have the best of educational opportunities and therapies, neither of which the man in the photo was likely to have ever had. 

But, just in case, I'll love you anyway.

I expect that you'll be going off to kindergarten before I know it.  I expect that you'll learn to read.  I expect that you'll run and laugh and play just like your brother and sister.  I expect that you'll find a sport you love.  I expect you'll like video games.  And Funyuns.

When you're 3, I expect that you'll choose what clothes to wear each day.  And they won't match, just like your older sister and brother never matched when they were 3.  I expect you'll wear your shoes backward because you put them on all by yourself.  I expect you'll talk a lot.

When you're 8, I expect you'll have a best friend and want to spend the night every single night.  I expect you'll pass your swim lesson class, and ride a horse, and ride a bike.  I expect you'll still talk a lot.

But, just in case, I'll love you anyway.

If you don't speak a word, ever, I'll still love you.
If I tie your shoes your entire life, I'll still love you.
If you're 40 years old and your clothes don't match and your shoes are on backward because you put them on all by yourself, I'll still love you.

As I look at the photo of that grown man, I remind myself that things are different now.  We know that people with Down syndrome can accomplish so much, that the sky is the limit, just as it is with our typical children.  You can learn, you can maybe learn to drive, you might even go to college.  I expect you to have a chance at those things.

But, just in case, I will always love you. 

Love always and forever,
Mommy




Tuesday, August 20, 2013

The Big Interview

Today I had the great pleasure and honor of representing parents of children with Down syndrome during a live discussion on HuffPost Live.  I was one of 5 panelists speaking about prenatal testing and the need for counseling after a diagnosis.  As a mom who received a positive diagnosis through testing (I had MaterniT21) and received such counseling, I was chosen to be part of the panel.

Also on the panel was Dr. Brian Skotko whom I was so thrilled to "meet".  He is the leading advocate and researcher for Down syndrome.  Can I ask for a virtual autograph?!

Made some new friends, too.  Dr. Alison Piepmeier and Stephanie Meredith (co-author of Your Loved One is Having a Baby with Down Syndrome which I have on my bookshelf.  For reals.) are both new Facebook friends.  They were featured panelists as well.

The final panelist, rounding out the five, was Dr. Anne Lyerly, an OBGYN and bio-ethicist at UNC.

I was in with some serious experts!  Proud to be there, but as the lone "just a mom" panelist I didn't say much.  Whew!  Without further ado, the video of our live discussion:  (oh, and in case you really just want to see ME, I'm around minute 15)



The live discussion was in conjunction with an article released today about the same topic.  I am proud to be a part of this as well.  If telling my story helps another mom, wonderful!  If I can help be a part of positive change, awesome! 

Wednesday, August 14, 2013

Refined by fire

Somehow, during my growing up years, I learned exactly how to deal with people who are disabled:  treat them as normally as you can while ignoring any obvious disabilities.  And if you can't treat them normally for some reason, then ignore them altogether. 

Pretend the child with autism throwing a fit at the store isn't being loud or that kicking and screaming is perfectly normal.

Pretend the wheelchair isn't there.

Pretend no one is drooling.

Pretend...

I've only been Cade's mom for 4 months, but he's teaching me so much already.  Before Cade, I'd have said that the way I dealt with disabilities was fine.  Admirable, even.  But after Cade, I know that I've missed seeing the real person behind the disability.  The person who deserves the dignity of a real response.  The person who deserves real respect, even though they're in a wheelchair, or screaming, or drooling, or have almond shaped eyes. 

It sorrows my heart to realize that all these years, I've been prejudiced against those with disabilities.  Not intentionally, of course, but prejudiced just the same. 

Now, when I see someone with a disability, I look them in the eye.  I smile.  And when appropriate, I interact.  I ask real questions and wait for the answer.  I'm still learning, but then, I've only been Cade's mom for 4 months. 




Saturday, August 10, 2013

Caesar's Palace, part two

When I decided to redo Cade's spaces, I tried to think of all of the places he spends time.  His car seat and crib both made the cut as makeovers since he spends a bit of time in both.

My first project was super fast, like 10 minutes.  It's a "baby paper" toy with soft, tactile surfaces, ribbons, and crinkly cellophane inside.  I chose black and red, but you can do any bright colors.  One side is polka dot minky, the other side is some sort of fuzzy fur that's really soft and washes well.  It's about 6" x 6".  For the crinkly inside, I used discarded packaging from another toy.  And I've found it washes in the machine just fine, I just have to hang to dry. 





My second project took a bit longer, but sewed up pretty fast despite me doing it without any sort of pattern.   I wanted to make a carseat "gallery", inspired by this Manhattan Toy Car Seat Gallery :
 

Yes, I could totally have purchased it, but what fun is that?  I bought some fabric, the plastic vinyl, dug through my button collection, and printed off some more cards from BrillKids.  I printed enough cards to switch them out fairly often.  My daughter thinks this is great fun, so every time Cade is in the car he has new cards to look at.  The buttons are just for more visual interest, they don't have any other purpose.  This is my creation:





My last project (for now!) was a new mobile for his crib.  We have a store-bought mobile, but I don't like it very much and Cade doesn't seem to notice it.  I stumbled across a great blog post from a mom who made a mobile and it looked easy and COOL!  I followed her awesome instructions and this is what I came up with:




Cade NOTICES this mobile!  He loves it like crazy.  Now I take him in there just so he can watch the mobile for a few minutes.  I haven't done much else with the crib since it's for sleeping and not for play, but making this mobile was totally worth the time (about 2 hours).  I could have made it faster if I'd used black & white fabric instead, but I liked being able to make whatever design I wanted.  I really like how it turned out.  Simple, but effective, visual stimulation.





Tuesday, August 6, 2013

Caesar's Palace, Baby!

Sometime around 4 months, Cade started getting fussy.  He seemed, well, bored.  It dawned on me that our other children were ready for an exersaucer or bouncer at about this age.  Cade was cognitively ready, but physically he's not there yet.

I posted this question simultaneously on a Down syndrome online group and to our OT and asked both...what do you do with a bored 4 month old?

And the answer from both...more stimulation.  One mom on the online group described it this way:  don't be too traditional.  Skip the pastels.  Think Caesar's Palace instead.  Gold!  Sparkle!  Glitter!  She'd hung christmas lights above her baby's crib.  That was a great place to start.  Our OT suggested prisms, foil banners, etc.

I looked to Pinterest and Amazon for some ideas, then hit the road.  Mostly I shopped at Joann Fabrics for some craft supplies.  Went to the Dollar Tree for some foil wrapping paper.  Visited a lot of garage sales for hanging toys and light up toys.  And this is what I came up with...

This area in our living room features Christmas lights, a disco ball, mirrors, and more.  I have enough hanging toys for the play gym that I can switch them all out every day for several days.  I printed the black & white cards from BrillKids.



Prisms, foil banner, and a locker decoration from the "Back to School" section at Walmart

Cade loves the prisms

These photos are of our changing area.  Our changing table is in the closet, which gave me lots of options for hanging things.  I have a light that shines directly on the prisms, so in the closet they throw sparkles all over the walls. 

Almost everything in these two areas is either homemade or inexpensively purchased at garage sales, Amazon, or Walmart.  I think I spent less than $20 and I still have lots of fabric, a couple more prisms, etc, to create more fun things for Cade's enjoyment.  I'll do another post soon with a couple more projects!

And how is Cade doing now?  He loves his new play area and changing table.  We do his therapy in his play area now, too, and that makes everything so much fun for him.  It's Caesar's Place, Baby!


Sunday, August 4, 2013

Our favorite toys 0-4 months

Our son with Down syndrome is about 3 1/2 months old.  We've found a few toys and products that we really like for him.  Especially as he gets more interested in toys, there are certain ones that are clearly his favorites!

Cade enjoying his Lamaze Tummy Time toy


Big mirror - like most babies, Cade loves to look at himself and talk to "the other baby" in the mirror.  I love this mirror by Wimmer-Ferguson.  It's big, it's breakproof but very clear, and on the back there are visual stimulation images.  Mostly, I love it because it's big and it has a clear image. 

 
 
Fisher Price Kick n Play Piano Gym - Oh. My. Gosh.  This is seriously the best money you'll ever spend on a baby toy.  After the mamas were going gaga over it on my birth club, I sucked it up and bought one.  And yes, Cade LOVES this thing.  He loves it like it's his best friend, like it's the best thing to come along since breastmilk.  His OT loves it too...it builds strength in his legs and arms, it reinforces cause and effect, it encourages him to reach up above himself and bring arms to midline.  And it's not annoying.  

  
 

Manhattan Toy Winkel - The Winkel is easy to hold, easy to teethe, and can be put into the freezer or refrigerator.  This is one of the first toys that Cade has been able to hold and manipulate by himself. 

  
 
Disco Ball - okay, so it's not a toy, but seriously, this provides some of the best stimulation ever.  Cade LOVES this thing (and our other kids think it's pretty great too!).  I bought one that screws into any standard light socket.  I happen to have a lamp perfect for this use so that it's sparkling right around Cade but not directly into his eyes.  For the price, this is honestly one of our best investments for Cade.
 
 
Leapfrog Spin & Sing - this is the first toy that Cade can activate by himself.  A small touch is enough to set off the music and lights.  The best part?  It's not terribly annoying. 
 
 
Lamaze Tummy Time Spin & Explore - this toy has a lot going for it.  It holds kiddos up so they can look around a bit before they quite have the neck control to do this themselves.  The gently cupping of the saddle also holds their arms in the proper propping position.  They can use their feet to spin around, which then gives them access to lots of toys around the mat.  The toys are easily replaced to keep the mat fresh and fun.  Our OT saw this in our living room and immediately flipped it over to see who made it so she could find one for her office.  
 
 
Colby & Cade (3 1/2 months)
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