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, May 30, 2015

Rockin' Moms - What my online support group means to me

When I found out Cade would have Down syndrome, I immediately went online in search of a group.  I like groups.  I've always been a birth-club-joiner with each baby, so it was natural for me to want a group of moms whose babies all have Down syndrome. 

First I found Babycenter, where I'd been on birth clubs for years.  There's a group for Ds moms and I didn't hesitate to join.  The only problem?  It's a public group and attracted a lot of "lookie loos" who were just there to watch the continual train wreck of moms with new diagnoses.  It also attracted a lot of people who believe abortion is best for diagnoses like ours.  Still, I made a few friends. 

Thankfully, one of those friends invited me to a new group on Facebook.  She said "It's wonderful and you've got to join.  You'd love it."  So I did. 

That was the day I joined the Rockin' Moms '13.  A community of women who all had babies with Ds in 2013.  I was tentative; I'd tried other groups and didn't find that I belonged.  But within a few days, I knew that the Rockin' Moms would become very important to me. 

Two years later, here's what they mean to me:
  • unconditional support - whatever we're going through, the Rockin' Moms are there for me.
  • experience - we have about 100 moms in our group and whatever we face, someone else has been there.  
  • friendship - some of the Rockin' Moms have become my best friends
  • meeting in person - nothing better on earth than meeting a best friend in person for the first time
  • advice - what questions to ask a new doctor?  what tests do we need to run?  Is this rash worrisome?  
  • middle-of-the-night - with 100 moms from all over the world, there's always someone online, great for the middle of the night when I'm up with a feverish baby
  • diversity - I can say without a doubt that I never would have seen myself becoming close friends with a goth mom, yet Ds brings us together and leads us to realize how many things we have in common.  Now I talk to my goth mom friend every single day.  I also have friends in Israel, Australia, England, and Ireland.   
My Rockin' Moms are my lifeline to sanity, to information, and sometimes to peace & calm.  It's the first group I check in the morning and the last group I check at night.  I usually have dozens of texts a day from my closest friends and we always check in with one another about medical tests, issues, illnesses, etc.

Now for the best part: there are lots of Rockin' Moms groups now, containing over 1200 moms.  Each one is a birth club, capped around 100-125 moms so that real community can form as moms get to know one another.  It's become a part of the Down Syndrome Diagnosis Network.  As moms find out about their babies, they're welcomed into the Rockin' Moms Pregnancy group, and then into a birth club.  Each mom receives unconditional support and love.

And now, even more, each baby is welcomed with a gift through the Rockin' Family Fund.  (It still amazes me how many moms with a baby with Ds never hear "congratulations".)   The fund also supports families in the hospital and those who are grieving a baby lost. 

Shouldn't every mom have my experience?  I agree!  Share the love by donating to the Rockin Family Fund.

https://fundrazr.com/campaigns/0zD50/ab/b4mz66

Behind every child born with Down syndrome, there is a mom. The Down Syndrome Diagnosis Network exists to support these parents through the diagnosis experience. Our Rockin’ Family Fund fuels our work.
Help us spread the love! Your financial donation lets us embrace our moms and dads with the care and resources they need, when they need it most.
  • When they’re new to the diagnosis: A warm welcome to our community with helpful information—and a message of congratulations, possibility, and encouragement that’s so often otherwise missing from the experience
  • When a child undergoes surgery or has an extended stay in the NICU: A card and
  • care package to remind parents they’re not alone and promote community among all our member parents
  • When a child with Ds passes away: a special gift to commemorate and celebrate that child’s life, and remind parents that they are always a part of the Rockin’ Family
  • When a parent wants to learn or recharge: a scholarship to attend Ds-related conferences, classes, or events.
https://fundrazr.com/campaigns/0zD50/ab/b4mz66

https://fundrazr.com/campaigns/0zD50/ab/b4mz66

Help us fulfill our mission and give our Rockin’ Families the support, love, courage, and community they need. Donate now. #sharethelove

Read more about what this means for families here.
Visit our website today!
The Down Syndrome Diagnosis Network is a registered 501(c)(3) charity. Your donation for our Rockin’ Family Fund is 100% tax deductible.

Thursday, April 2, 2015

All I know about perseverance...

Everything I know about perseverance, I'm learning from my son.

Cliche?  Absolutely.

I'm 37 38 years old.   I thought I knew all about perseverance.  Never quit, run the race, keep your eyes on the goal.  I imagine an inspirational poster for every quote. 

Cade is learning to walk.  He's been working on this skill for weeks.  First, it was learning to stand.  He would stand up, only to immediately fall, over and over again.  Each time he gained his feet, he'd smile and clap.

After a few weeks of standing, he took a few steps, almost accidentally.  Then he started attempting steps all the time.  But every single attempt ended with him on his face.  Every. Single. Attempt.  For WEEKS.

I would have given up at that point.  It's easier to just sit, you know?

But not Cade.  He's had a glimpse of life as a walker and he is determined to reach success.  He practices every day, everywhere.  He's more confident now and will take steps pretty easily from one spot to another, but true independent walking still eludes him. But he keeps working on it, day after day.  Week after week.  This kid never gives up.

How many times has he fallen?  Hundreds.  Thousands, even.  How many times has he bumped his head?  Dozens, surely.  How many times has he ended up in tears?  A few times, but most often, he gets right back up and once on his feet, he still claps for himself.  Even if no one else is watching, he praises himself.

As I've watched my young son work so hard to learn a skill that most kids learn in a week or two, I realize that he has more drive, more ambition, more "get up and go" than anyone else I know.  Nothing is going to hold him back, except for our own expectations. Where's the inspirational poster for that?



Note:  This is a post I started a few weeks ago.  Since then, Cade has officially become a walker.  I imagine that his next goal must surely be running.





Tuesday, March 31, 2015

A year's worth of awesome


Cade's birthday seemed to roll around again way too soon.  Wasn't it just yesterday that I cradled this tiny baby?


Sure enough, though, the calendar said it was time for another birthday.  It's been a rainbows & unicorns year, with a few stones thrown in to build character.

APRIL

MAY:  Soon after his first birthday, Cade broke his leg and spent a night in the hospital.  
JUNE: A sedated hearing test showed that Cade has perfect hearing!
JULY
AUGUST
SEPTEMBER
OCTOBER
NOVEMBER
DECEMBER

JANUARY: A sudden incident of jaundice led to a diagnosis & treatment for hypothyroidism

FEBRUARY
MARCH: "Dude! Have you tasted one of these?!"  First ice cream cone!

Saturday, March 21, 2015

He is your blessing

Today is March 21, World Down Syndrome Day.  I don't have any clever, funny, or deep thoughts to post, but I do want to share a memory.  This sticks out as the most poignant moment of my year.

Last May, Cade broke his leg.  In the weeks after, we spent quite a bit of time in the orthopedist's office.  You meet all kinds of people in an orthopedist's office.  Rich, poor, young, old.  On this particular day, I met an elderly Hispanic woman.  I barely noticed her at first, my attention on my children who were putting together a giant skeleton puzzle.



Her words eventually dug through the haze in my head and got my attention.  "How old?  How old?"  She was pointing a crooked finger at Cade, playing at my feet.  I think I said something brush-offish, "Oh, he's 15 months", and I turned back to my kids.


A moment later, I realized she was still speaking.  Her English was rough and I didn't understand everything, but I got the impression she was telling me that my children were beautiful.

Then she points at my 4-year-old son, who has typical chromosomes.  "That one, he leave you.  He will grow up and be away."

She points at Cade.
   "But he is your blessing.  He will always be with you."

I could have been offended at her implication that Cade would live with us forever, but her manner was so sweet and so personal, I knew she giving me a gift.

She went on to tell me that she had had a son like Cade, presumably with Down syndrome, although her limited English couldn't tell me that.  He had died; I couldn't tell if he'd died 42 years ago, or at age 42, but she was teary eyed as she told me about him. 

Her name was called and she left.  I didn't see her again, but the moment stayed with me.  Her words come to mind often as I watch my children.  She's right, my other children will grow up and leave me.  Perhaps Cade will, too, but I understood what she meant.  He is my blessing.



Thursday, March 19, 2015

My name in lights!

http://registerguard.com/rg/opinion/32878612-78/a-baby-with-down-syndrome-will-enrich-your-life.html.csp

Okay, so my name's not in lights.  It's in tiny black & white letters, but still, this is pretty cool. 

That's right, I wrote an editorial piece for World Down Syndrome Day and they published it in our local paper, the Register-Guard

Here's the full article:

Dear New Mom or Dad,
If you're expecting a baby with Down syndrome, or you've recently birthed a child with Down syndrome, then this letter is for you.

First, congratulations! Your baby will bring you more joy and pride than you can imagine.

March 21 is World Down Syndrome Day. I know you probably don't feel much like celebrating this year, but I promise that by next year, you'll be ready to celebrate the “little something extra” that makes your baby unique.

I know, because I've been in your shoes. My son will be 2 years old soon. This is my third World Down Syndrome Day since we got the news. The first year, I didn't feel at all like celebrating anything. I was too scared for my baby and the health issues he might face. But now, March 21 really is a day to be thankful for each and every chromosome. My son has changed my life in so many ways. Your baby will do the same for you.

A year from now, you'll compare your baby to typical babies and you'll think that her Down syndrome makes her cuter. In fact, all babies with Down syndrome will be cuter – those exotic eyes, the silky hair, the rounded cheeks. Our babies really do have the perfect baby faces!

A year from now, you'll breathe in the scent of your baby and you won't think about Down syndrome. Your baby is just that – your baby. Nothing else will matter. You'll be too busy looking forward to all of the amazing milestones your baby will be reaching: holding his head up, lifting his belly off the floor, sitting, first signs. Every one is worth shouting from the rooftops, and you will.

Whatever stereotypes you might possibly hold about Down syndrome will be shattered. Your baby teaches you that the sky is the limit for her. You'll be shocked and delighted at all that she can do and how fast she learns. Your friends and family will soon be telling you how smart your baby is and you'll nod with pride – because it's true.

Your tiny little baby – you gaze into his eyes and marvel at the beauty there. You whisper sweet nothings into his ears and he smiles back at you. You've done these things with your other children, and you'll find that it's no different with this one. Babies are babies and that's a blessing. It gives you a chance to evolve into the parent and advocate that you'll someday be for him.

Many people will tell you that children with Down syndrome are sweet and gentle and kind. This could be true, but I've also found that it inspires those feelings in us. The virtues of patience, loving-kindness, gentleness, and joy are blossoming in those around us thanks to our child. He seems to bring it out of people, even complete strangers are charmed by his wide-eyed stare or his toothy smile.

Our cultural attitudes are changing. No one has ever expressed dismay at our child's diagnosis. Instead, they tell us how he reminds them of their own loved ones or people they've known who made a difference in their lives. While everyone loves a baby, babies with Down syndrome attract a lot of friendly attention.

I can't tell you exactly what your life will be like a year from now because our journeys are all different. But I can tell you that it will be rich and full and rewarding. It's a journey absolutely worth traveling. While I wouldn't have chosen to give my child Down syndrome, I know that I've been blessed by it and made into a better person.

When you're ready, I hope that you'll connect with other parents. Locally, we have the Emerald Family Down Syndrome Network (efdsn.org). Those of us with babies & toddlers meet monthly. We love babies and can't wait to meet you.

If you prefer an online support group, my favorite groups are the Rockin' Moms and Rockin' Dads through the Down Syndrome Diagnosis Network (dsdiagnosisnetwork.org). Since our kids totally rock their extra chromosome, it's fitting that we have a rockin' place to chat with other moms and dads. Each group is like a birth club, limited to babies born the same year as your baby. Drama-free support, these people will soon be your best friends.

So happy World Down Syndrome Day. Celebrate your little person and each of his or her 47 chromosomes. I look forward to meeting you. Welcome, and again, congratulations.

Sincerely,
Cade's mom



Thursday, March 12, 2015

A very typical day

Recently, I was asked to write a blog post describing a day in our life with Down syndrome.  This was my post, submitted on www.ADayintheLifewithDownSyndrome.com.

Climbing on chairs.

Climbing on the table.

Climbing into the bathroom sink.

Getting stuck between the refrigerator and the wall.

My son is TWO!

With my other kids, the "terrible twos" have brought the usual temper tantrums and mischievous behavior.  With Cade, the twos have brought activity.  He's so BUSY all of a sudden.  We love every moment because we know how many hours of occupational therapy it's taken for him to reach this point.  I love seeing him do things that are so very typical. 

A day in my life?  Mostly just like any other mother of a 2-year-old.  I clean up a lot of messes while he walks behind me making them again.  I say "no" a lot.  And I get lots of snuggles and wet kisses.



Wednesday, March 4, 2015

The R-word

Some words are so bad that you teach your children to never, ever say them.  And then we give them names.  The F word.  The B word.  In a family like ours, and hopefully yours too, we also have the R word.

Retarded.

We've actively taught Camille to be an advocate, not just for Cade, but for all kids with a disability or difference.  And the lesson sunk in more than we realized.

Earlier this year, Camille came home from school pretty upset.  Not crying, but angry and bothered.  She described how a boy on the bus kept singing "retarded, retarded, retarded" over and over.  A couple more boys joined in.  It wasn't directed at any person, they were just being silly elementary boys.  Camille asked them to please stop.  She told them that the word is offensive and she didn't want to hear it on the bus.  One of the boys asked her why it mattered.  She explained that her little brother has Down syndrome.  The boy retorted "Then that means your brother is retarded."

The boy has never met Cade so we couldn't truly be offended.  But I did ask her teacher for tips on handling it in the future.  Turns out the boy is in Camille's class so the teacher spoke to him.  He apologized and that was the end of it.  He hasn't ever said it again, nor made any comments about Cade, since then.

My take-away message?  My daughter is amazing.  Even as an adult, I tend to ignore stuff like that and while I stew about it, or wish later that I'd spoken up, I rarely do when it happens again.  But our kids...our kids are fearless advocates.  It 's effortless for them.  We teach our kids today how to treat others, how to be kind and gentle and loving, and the message will sink in.  They get it.  Teach them to stand up for other kids and they will.

It starts with us.  It starts today.  Teach your kids...let's end the r-word.








In God, whose word I praise--in God I trust and am not afraid.  What can mere mortals do to me?   Psalm 56:4 

 (This came up in my Bible app today and seemed entirely appropriate!)

Sunday, February 1, 2015

Dear Baby L

Dear Baby L,
As I snuggle against your downy head and breathe in your baby scent, your hair tickles my nose.  Our time together is drawing quickly to a close.  There are some things I want you to know.

First, I love you.  You're the first child aside from the ones I've given birth to that I've truly loved.

I knew that it might be hard to raise someone else's child.  And in many ways, it is hard.  I don't get to make all of the decisions, I have to share that responsibility with the state and your mom.  But mostly, it's been very easy to raise you.  You have a sweet personality and your happiness sparkles in every expression.

I knew that it would be hard to see you leave us.  I don't really know yet what that will be like, but I think, in some ways, it will be easier than I imagined.  Your mama is doing so well; I'm proud of her.  She's certainly earned the right to try being your mama full-time.  It feels like a victory, even though she's the one who has done all the work.  She loves you so much and she's ready for you to go home to her.

I don't know how much I'll get to see you after you leave.  I suppose, at first, I'll see you fairly often.  But over time, the visits will wane as we, and your mama, move on with life.  But know this...there will always, always, be a place for you in our home.  You will always occupy our hearts. 

They tell us that we'll never forget our first foster baby.  You're not actually our first, but you're the first one to live with us for any length of time.  You're the first one to call me "mama" and the first one who I've watched grow from a tiny baby into a busy toddler.  The first one who I'll miss.

I have some favorite memories that I will cherish forever.  Like the way you love to pull blankets over your head and then fight like crazy to get back out.  Or all the faces you make when you're trying new foods, or how you and Cade roll all over the house like two puppies.  I reach down now and pick you up for a hug.  You're breathing hard from playing so much, and you're squirming to get back down.  I let you go, my heart breaking a little as I realize that soon, I'll let you go for the last time.

Love always and forever,
Your second mama



Saturday, January 24, 2015

I'm not blessed, I'm just lucky

My entire adult life, I've believed that all good things are blessings, gifts from God.  I've always said there's no such thing as luck.  My adult vocabulary barely even includes the word "luck".

Like so many other things, my journey with Down syndrome has changed my view on blessings and luck.

Throughout my pregnancy and birth, I often felt very blessed that Cade doesn't have any serious medical issues.  He certainly could have...Down syndrome very often brings a host of medical problems, including heart defects (he had 5, but required no surgery), leukemia, seizures, and more.

But as I got to know other mothers whose children also have Down syndrome, I was troubled by something.  So many of their children have such a hard time.  I kept feeling guilty...why is their journey so much harder than mine?  Why is Down syndrome no big deal to us, but such a hugely enormous deal to these other families? 

In June, our small community of families grieved after a series of deaths.  Three babies in one week, one from a virus and two from complications after heart surgery.  It was devastating.  And the thought persisted, why am I blessed but they are not? 

To give someone a blessing is to bestow on them a gift.  A statement of praise or congratulations.  It's not something that "just is", it's a purposeful motion from one person to another.  If my son's health is a blessing, then that means God purposefully gifted him with health.  And if I believe that God purposefully gifted my son with health, then I have to also believe that he purposefully withheld the gift from other children. 

This made me feel terrible.  Every time I would comment on a Facebook post that "we were so blessed that his spasms were benign" or "it's such a blessing that his heart defect wasn't serious" I felt like I was punching the other moms. 

I understand the scriptures about why God blesses one person and not another.  Often it's sin, but that just didn't seem to apply here.  None of our babies are old enough to be sinful yet.  Perhaps the sins of the parents?  That doesn't fit either, I'm no more or less sinful than anyone else.  At least one of the families from June are devout Christians like us.  Are our prayers better than theirs?  No, I'm pretty sure they're not. 

One scripture jumps out at me as I try to sort this out.   

The rain falls on the just and the unjust.  (Matthew 5:45)  

In other words...luck. 

I still don't believe in the superstitious nature of luck.  Wearing the same socks every day won't make your team win.  Kissing a coin before dropping it in the slot machine won't make you rich. 

But the random nature of luck?  Absolutely.  Sometimes things just happen.  They happen to all of us.  This baby gets a huge hole in her heart, while that one has a perfect heart.  This child gets leukemia while 10 others miss it. 

Cade is pretty healthy.  We've had some bumps, but they're so minor compared to what other kids go through.  Our journey has been easy and I am so thankful to God for this.  But I no longer say that we're blessed by it.  We're just lucky. 


But always, always, super blessed to have this guy.  He is indeed God's gift to us, purposefully bestowed on us, forever cherished. 

Sunday, January 18, 2015

You're normal, you're not alone. I was there, too.

This is a post for all the new moms, all of you who've just found out that your child has Down syndrome. 

It's also a post for me. 

When I first found out that I was pregnant, I was angry.  I don't like surprises and I don't like being pregnant.  I wasn't sure I even wanted a third child.  So an unplanned 3rd pregnancy did not make me happy.  By 18 weeks, I was still sick and still hadn't come around to the idea of baby #3. 

Then I found out he would be born with Down syndrome. 

This is a dark truth, but one very common.  If you feel this way, you're not alone. 

I was so angry and distressed, I lay awake at night and thought it would be best if I would miscarry.  Some babies with Down syndrome unfortunately don't survive to birth and for a short time, I'd hoped that would be the case with me. 

I told God that I didn't even want another baby, so why on earth would he give me one with a disability?

I told you it was a dark truth. 

I'm not proud of the way I felt.  It only lasted a few nights.  After that, something magical happened: I suddenly felt very mama-bearish about this new babe and suddenly I wanted him desperately because he had Down syndrome.  But I digress...

To you, New Mom...if you feel this way, if this ugly thought has entered your mind...forgive yourself.  It's okay.  It's normal.  I think most of us felt that way at least briefly.  The thought will fade and you'll still be a wonderful mother to your newest blessing.  Even if you feel that way for a long time (and some do) it doesn't mean you're a horrible person, even though you're probably feeling that about yourself. 

I guess my best advice is this:  allow yourself to feel how you feel.  Give yourself that grace.  Go through the ugliness, I promise there is healing on the other side.  Down syndrome is not the end of the world, but when you first find out, it feels like it's the end.  It's a lot like the stages of grief.  But the destination is way more fun...at the end of this journey you get a baby!  An amazing little child whom you'll love instantly.  A child who will enchant you, make you laugh, and shatter every stereotype you've ever held. 

To me...I forgive you.  I forgive you for the way you felt during those first scary nights.  I see the way you love your son, the way he's your reason for getting up every day.  (Literally.)  I forgive you for the tears you shed because you didn't know any better.  I forgive you for yelling at God.  I forgive you for throwing things.  For smothering sobs in your pillow.  I forgive you for not loving him instantly.  After all, you had no idea that you were having Cade.  If you'd known all along that it would be Cade, you'd never have had a moment's worry, because you'd have known that Cade is incredible.