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.



Thursday, April 28, 2016

I met a man

Yesterday, I met a man.

He was dressed like any 20-something man would dress.  He had a trendy beard and wore a few accessories in the latest styles.  Undeniably, he was hip and handsome.

I said hello, a little shy.

He reached out to shake my hand and returned my hello, not shy at all.  A friendly, outgoing man.

I liked him instantly.

We watched our Little Leaguers play ball for a few minutes, and then I left to take 4 of my children home.

I can't stop thinking about that man.  I think I might have even dreamed about him last night.  I would really like to meet him again.  Soon.

He has Down syndrome.  In the few minutes that I knew him, I wondered if my son would grow up to be like him.  That thought makes me smile.


Watching his brother play baseball

Sunday, April 24, 2016

So...did you, or didn't you?

In the 3 1/2 years since I was pregnant with Cade, I've had several friends go through pregnancy.  And every time, I wonder...

Did you take the test? 

What would you have done if it were positive?

Does taking the test tell me what you really think of Cade?

The test I'm referring to is the NIPT (non-invasive prenatal testing), often known by brand names like MaterniT21, Harmony, or Verifi.  These tests are fairly new, and are often given to high-risk women between 10 weeks and 20 weeks pregnant.  More and more, they're becoming standard for all women, but if you're over 35 you'll most certainly be encouraged to take it. 

The test is a simple blood test that can help determine if a fetus has any of the most common trisomies...Trisomy 21 (Down syndrome), Trisomy 18 (Edwards syndrome), or Trisomy 13 (Patau syndrome).  It's just a screening, which can indicate if you have a higher chance of having a baby with a Trisomy.  It's not diagnostic, so a positive result on a NIPT test means you should be offered further testing. 

I took a NIPT test at 20 weeks, after a routine scan showed markers for Down syndrome.  Our NIPT test was positive.  We chose to not pursue further testing.  We were having our son no matter what, so we didn't need to know 100%. 

My MaterniT21 results

Most of my friends are around my age (I'll be 40 this year), so I know they're all being offered The Test.  And with each delighted pregnancy announcement, I can't help but wonder...did they accept The Test? 

Do they accept the test, thinking, "Heather's kid has Down syndrome, what if ours does, too?"  I am proof that long odds aren't always a safety net (although honestly, we hit the lottery.)

Or do they decline the test?  What does that say about Cade? 

I've privately asked many of my friends over the past 3 years.  Did you, or didn't you?  One beautiful friend said "No.  I see Cade and I'm not afraid of Down syndrome."  I cried my eyes out that day. 

Another friend had markers for Ds.  We cried together the day she took The Test, and we cried together again two weeks later when the results were negative.  While I was thrilled that her child would be spared the adversity that Cade will have, we both grieved a little that we wouldn't share that sisterhood.

It's a weird feeling that I get with each announcement.  Part of me says my son's life is worthy and valuable and he's a beautiful soul.  The other part of me says disability can be a dark and scary place, there are no certainties. 

To my dear friends...congratulations.  I'm over the moon for you.  Thrilled beyond words. 

             But...did you...?  




Monday, February 1, 2016

Letter to a bio mom

Hi there!
We just got your kids the other day.  They're very sweet and doing well so far.  They ask about you a lot.

I saw your face in court the other day when you saw me and knew who I was.  Fear, anger, nervousness all flashed across your face.  I'm not allowed to speak with you yet, but here's what I'd like you to know:

We're on the same side.  We both want what's best for your kids.  We may have vastly different ideas about what's best, but really, we're on the same side.

They don't give us any information about the kids, or about you.  We've had your children for a few days, and we're guessing here.  We're shooting in the dark.  I don't know why they were removed or how long they might be with us.  For a while, I didn't even know their last names or for sure how old they are.  I know even less about you. 

As a foster mom, I have to assume the worst.  Don't think that I see you as a monster.  I don't.  But thanks to the above, everything I see out of the ordinary is suspicious.  Don't feel like I'm the enemy when I suggest that we get a doctor to examine the scar on his hand, because we have no idea if it's from a fall he took last week or from abuse.

We choose to love your kids.  When we tuck them in at night, we kiss them on the forehead and whisper "I love you" just as we do with our own children.  Every day we make that choice to love them, even if it doesn't come naturally.

The system is broken.  Yes, it absolutely is.  I once heard an attorney say that the state is a terrible parent.  Thankfully, the state doesn't take care of your children on a day-to-day basis.  I do, and I'm a pretty good parent.  You work your plan and I'll take good care of your kids in the meantime.

I respect that you're his mother.  And I never forget that.

It breaks my heart when you miss a milestone.  Baby's first smile, first steps, first birthday, first day of school...all I can do is take photos and write down the date.

I take a lot of photos.  A lot.  I don't always give all of them to you, but I document every event, every special day, and every moment in between.  Someday, when you're ready, they're here waiting for your child.  And if your child ends up being adopted, the photos go with them so they have a record of their own history.

I know you love your kids.  Every mother I've worked with so far has loved her kids.  I understand that sometimes personal demons are bigger and make you unable to care for your children right now, but I know it doesn't diminish your love.

Sincerely,
Your kids' foster mom



**Note: this isn't about any particular case or child.  This is an aggregate of all of my experience thus far as a foster mother. 

Friday, January 8, 2016

Reflection on a foggy morning

This morning my commute was crystal clear, not a trace of fog.  But just off the road, a thick layer of fog blanketed the landscape.  My daughter pointed out how beautiful it was, the delicate pinks and blues of a sunrise against the deep green of the fields.  I noticed how thin the layer of fog was, and thought aloud that anyone living over there would surely believe that the fog was thick and soupy.
 
 
I reflected on this for the rest of my drive.  From my point of view, it was obvious that the fog would soon dissipate and that the day would be beautiful.  From the road, I could see how thin the layer of fog truly was.  It barely covered the tops of the trees.  But from the ground level, it would have been impossible to see that.  From their point of view, the fog would have seemed endless and impenetrable. 
 
Like a diagnosis of Down syndrome.
 
When Cade was diagnosed, I felt mired in confusion and sadness.  It seemed, for a time, that I might never be happy again.  The diagnosis colored everything around me.  I thought about it constantly and couldn't escape the fears about my son's future.
 
A friend who had a 10-year-old with Down syndrome told me that she wished I could see into the future and meet myself a year from then.  She wished the future me could tell the current me that everything was fine.  She promised that I would someday laugh that I had ever been worried at all. 
 
She was right.  Just as the morning fog melted away with the rising sun, my sadness became lighter until it was gone altogether.  My son is nearly 3 years old now and the days are sunny and clear. 
 
If you're just experiencing a diagnosis, take heart...the fog will lift.  I know that you can't see that now, but truly your life will be full of sunshine.  I can already see it from where I stand. 
 
 
 
 

Friday, January 1, 2016

An update and a new beginning

It's been a long time since I've written.  Partly because I haven't had much to say and partly because we've been so incredibly busy.  It's fitting that I jump back in to writing with my 100th post. 

Last summer we had a blast.  After Baby L went home to his mom, we closed our home for the summer and spent it bonding as a family and doing every fun thing we could think of.  We started a new blog, Oregon Outdoor Family, detailing some of our more unique adventures. 

On August 31, we called DHS and told them to open our home, we were ready for a new baby.  Twelve hours later, they called us.  We ended up taking the baby and his sibling.  That was a new adventure for us, taking two children at once.  Sept 1 we welcomed them into our home and became a family of seven. 

Meanwhile, Cade had developed a funny symptom...broad patches of his skin turned dark.  We thought he just tanned in an odd pattern, but his endocrinologist worried it might be an adrenal issue.  We did blood tests and he failed them miserably.  We waited 1 month and redrew the blood tests.  Failed again.  So they scheduled Cade for a "stim" test and started throwing around words like "adrenal insufficiency" and "Addison's Disease".  We had the stim test a month later.  They hooked Cade up to an IV and withdrew blood.  Then they pumped him full of ACTH (a hormone with a really long name) and then drew more blood over a couple of hours to see what would happen.  Thankfully, this time the test came back normal.  However, we don't have explanation for the earlier failed tests or the symptoms, so we go back to the endo in a couple of weeks to talk some more.  I don't think there's anything really critical going on, but it may be a sign of something coming. 

The past 4 months with our bonus kids have been really rough.  The older child has some significant trauma damage that we were completely unprepared for.  We're working with a therapist and things are starting to get a little better, but I feel like we've been underwater.  Every memory is murky, like I'm watching and listening to life from the bottom of a swimming pool. 

But today is January 1.  A day rife with hopes and dreams and new ambitions.  A fresh start.  A new beginning. 

I dream of moving forward with purpose, leaning on God and my new parenting techniques.  I dream of being productive and efficient.  I hope to write more and worry less.  I resolve to color in my new coloring books and feel less guilt about taking time to fill my theoretical cup. 

One last note.  Baby L is doing GREAT with his mom.  We're still in touch and she sends photos.  I love that little guy and tears spring every time I see his smile.  I hope and pray all the best for them.


We learned to color...and we like it!

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