Dear Genetic Counselor

The way a diagnosis is delivered has a profound impact on how that diagnosis is accepted.  A grim delivery versus a hopeful one can make all the difference in not only how we internally process that diagnosis, but in how we choose to deal with it tangibly. 

"I'm sorry..."

"When do you want to schedule your termination?"

Low quality of life...never drive...never read...never walk...

I've been a special needs mom for 3 1/2 years and by now, I've heard every version of the diagnosis story possible, it seems.  But my story was different. 

A year after my son's birth, I wrote a letter.

April 2014

Dear {Genetic Counselor} and staff:

Now that our son is a year old, I wanted to take a moment and provide some feedback on the diagnosis experience that we received from you and the MFM clinic.

When we first met Kathryn, we'd been told that my quad test showed a higher than usual chance for Down syndrome. We were coming to MFM for the very first time, about to have an ultrasound. Kathryn was great at explaining everything that would happen during the ultrasound and immediately after. We talked about what tests we wanted to run and what those results could mean. My husband and I both appreciated Kathryn's professionalism.

During the ultrasound, during which several markers for Down syndrome were found, we were scared. Afterward, {the doctor} came in and explained that our baby's chances were 1:3 of having Down syndrome. We rejoiced to be having a boy but terrified of Down syndrome. {Our doctor} helped us to feel more secure. We returned the next day to have blood drawn for the MaterniT21 test.

Two weeks later, Kathryn called to let me know that it was positive. We visited her again to learn more about the diagnosis and what would happen next with our care. She explained all about how Down syndrome occurs, that it wasn't anything we did or didn't do, and what kind of life our baby could expect to have. And in this, her true compassion showed beautifully. Kathryn gave us hope for our baby as she explained that he would go to school with other kids, that he would almost certainly learn to read. That someday he very possibly could live independently. She painted a realistic, but ultimately hopeful, picture of life with Down syndrome. We were given options for termination and adoption, but when we turned them both down, she didn't bring them up again.

{The doctors who} cared for me throughout my pregnancy made me feel like me and my unborn son were equally important patients. I never once felt pushed to terminate. I've heard horror stories from friends about misinformation, lack of support, and a general sense of doom from doctors. I so very much appreciate the treatment we received from the doctors and staff at MFM.

Our son is now one year old and he's doing fantastic. I am so proud of him.

Thank you,

Heather Hicks

My actual result, given to me that day in the genetic counselor's office.

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It's my life

Recently, a lot of things on Facebook or in the news have caught my attention.

First is the letter a fellow mom wrote to the doctor who diagnosed her daughter with Down syndrome.  The letter has gone viral for a lot of great reasons.  It was even a top-trending topic yesterday on Facebook.  Major news networks have picked up the story.  It's a simple story that has touched hearts worldwide.  And stirred up a lot of controversy.  The letter is short and essentially tells the doctor, who encouraged abortion, that children with Down syndrome are a joy and a blessing; they don't degrade our quality of life, they enhance it beyond our wildest expectations.  The letter is meant to encourage a doctor to present unbiased information rather than encouraging a single course of action.  But the comments, egads, the comments.  Horrible, hateful, full of vitriol.  Reading just a few of the comments made me ill and sad.  Do people really see our kids as ugly blights on society?  Do they truly see so little value in a life like my son's? 

Second is a blog post shared by a dear friend of mine.  She didn't share it to me, it was just a general post on her own page.  But it struck a chord with many of our mutual friends, as they all posted affirmative reactions.  The post detailed how social media allows everyone to share their passions and causes, and how it feels like you're a horrible person if you don't take up the causes personally.  The author basically said "I don't have time for this" and that she was no longer listening to the causes of others, she was letting the guilt go, and she encouraged readers to let it go, too.

And third is an outcry from the disability community in response to the movie Me Before You.  (Disclaimer: I haven't seen the movie nor read the book.)  The main character is seriously injured after an accident, and he chooses to end his life because living with a disability isn't a life worth living.  I casually mentioned to a friend that there's a lot of controversy because the movie sends all the wrong messages.  She replied that people are too sensitive and need to get over themselves.

All of this culminates in some uncomfortable realizations.  The world doesn't care about my son.  It just doesn't.  I can post all the cute photos to advocate and spread awareness, but I'm not changing anyone's opinions.

Last night I stayed up too late and alone.  And my mind wandered...what's the point?  Should I keep this blog?  Should I post on Facebook?  If even my closest friends just don't care, then why bother?

But I came to this decision...

Because it's my life.

Down syndrome, disability, fighting for inclusion...it's not my cause.  It's my life.  I live this every single day.  Yes, I have other children and I still have friends outside the T21 community, but mostly, Down syndrome has become my focus.  Every day, I work with my son to teach him what he needs to know; how to talk, how to be polite, how to fend for himself in a world that doesn't give a rip.  I see a world that refuses to accept my son unless he talks like them, walks like them, and acts like them.  I don't see myself on a "Look at me!" disability high horse.  I've never even thought about that until someone posted such a comment on the letter to the doctor.  I see my life.  My son's life.  My family's life.  It's a life worth living.

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Somewhere out there

Somewhere out there is a mom who isn't with her children today on Mother's Day.

A mom who, for whatever reason, has made the choice to not see her children.  A heartbreaking choice that she grieves, even as she posts to Facebook that it's just too much trouble and she's so tired of fighting.

Right here in our house are two children who don't realize, not really, what they're missing.  And yet, on some level, their little bodies know.  One clings to me, unable to tolerate me leaving the room, fear of abandonment etched into each feature on his tiny face.  The other doesn't care, that itself a protective measure built into her brain by past abandonment.

Two children whose lives are changing by every decision made by the grown-ups around them.  Two children who have absolutely no say in any of it.  Who just want to be home, but home isn't what they remember.

Two children who call me mommy, but who will soon lose me, too.  I pour in love and affection and snuggles, and I hope it will be enough.

I wish I could see their mother one more time.  I wish I could say, your children NEED you.  They're worth fighting for.  Your children need to know that you're out there, that you're okay, that you love them.

To all the mothers who fight every day for your children, happy Mother's Day.

To all the mothers who've given your babies in adoption, happy Mother's Day.

To all the mothers who've desperately wanted your children here with you today, but they've gone to Heaven before you, happy Mother's Day.

To all the mothers who can't fight another day, who let these precious days slip through your fingers, happy Mother's Day to you, too.  There's still time to make another choice, to choose your children.  They're waiting for you.

Not my children.  Thank you to offset for the stock photo.

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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

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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...?  

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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. 

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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. 

 

 

 

 

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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!

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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.

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.

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.

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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.

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