What if we changed our thinking when we dream of our children’s futures? What if we make the shift to dream that instead of being the most popular girl or guy in school that our child is the most kind and respectful girl or guy in school? What difference would that make? That instead of vying for everyone’s attention, that our child would strive to make everyone around them feel special, remembered, seen.
What does this really look like? Maybe something like a shift from...
Most likely to succeed. Most likely to run a Fortune 500 company. Most likely to be President of the United States.
...to...
Most likely to be kind to every person they encounter. Most likely to be respectful in every life situation. Most likely to greet others with compassion when they need grace extended in their direction.
Imagine a world where skin color is not seen, wealth is not a factor, and pasts are not important... For most, this is impossible to imagine, but for Reece, and others with Down syndrome, this is reality. Reece doesn’t see skin color, wealth, pasts...all he sees are people to love. The beauty of Down syndrome is that it replaces judgment with unconditional love. Bitterness with joy. Hurts with hugs. Sorrow with smiles.
If this is what Down syndrome is all about, why are 92% percent of babies with a prenatal diagnosis of Down syndrome still being terminated today? In some countries, 100%.
Seems to me society has forgotten that God doesn’t make mistakes. In fact, it’s quite the opposite. God knows what He is doing. He carefully crafts our DNA, He thoughtfully designs our personalities, and He strategically shapes our hearts. Not one single part of us is a surprise to our Creator. “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:14
In his six years on this planet, Reece has taught me more about unconditional love, acceptance, and choosing joy more than any adult I’ve ever met. He breaks down barriers, fosters unity, and welcomes everyone into his heart no matter who they are, where they’re from, what they’ve done... It really is incredible. And, I wish I could be more like him.
When people ask me what it’s like to have a child with Down syndrome, I simply say, his diagnosis was a surprise, it took me a longer than I care to admit to move from complete fear to total acceptance, but today, I wouldn’t change a thing.
It’s no surprise This Is Us is sweeping the nation and
taking us on an emotional ride every Tuesday night. If it’s not one episode
that moves you to tears, it’s the next. I can say with 100% certainty that
anyone who watches this well-crafted show will relate to something they cover.
I’ve never had a miscarriage. I know countless women in my
life who have experienced this devastating kind of loss. They are warriors exuding
the kind of strength no one wants to find out exists within them. This week’s
episode invited us in to a deeply personal and painful look at a character’s
experience with miscarriage. And, although I’ve never lost a baby, I have
experienced grieving the loss of the baby I thought I was going to have. I do
not mean to write this to include myself in the group of women who’ve
experienced miscarriage, but I write this to share how I can relate to the character’s
emotions and the idea of feeling like I did something wrong to cause Reece’s
diagnosis. (Many know my story, but for those who do not, you may want to start
here.) Take a moment to watch a clip from this week's episode.
And then the wondering sets in…
“Did I do this? Did I do something wrong? Did I sleep on the
wrong side? Should I have gone on that walk?” Much like the show portrayed, these
are like the questions that took up residence in my mind when Reece was born.
Questions that haunted me day after day, night after night…until a Geneticist
gave me a valuable piece of information. He explained that Down syndrome is not
caused by anything done during pregnancy; rather it is caused by a genetic
abnormality which results in an extra (or third) copy of the 21st
chromosome. The amount of relief that rushed in after hearing someone let me
off the hook from the guilt I had been carrying was immeasurable.
One of the hardest parts of receiving Reece’s diagnosis was
that I was told before I had the chance to hold him for the first time. This is
one of the many things I wish I could educate medical professionals about when
it comes to delivering an unexpected diagnosis. Because hearing that the child
you thought you were going to have is not the child you actually have is a
level of disappointment you don’t realize is possible until you experience
something like that. And, in me, it caused an almost immediate detachment from
Reece when I should have been bonding with him. The line in this week’s episode
that vividly brought me back to that day… “I felt like if I didn’t hold him,
somehow it would lessen the pain.” Maybe that’s the notion that doctors and
nurses operate under. That maybe if the news is delivered before a parent falls
in love with their newborn baby while holding them, it will somehow lessen the
pain of hearing the news. I cannot believe that to be true. Because at least if
I had the chance to hold Reece first, it would have begun the bonding
experience every new mom deserves to experience. And, how I can so relate to the character's grocery store meltdown. "Tell her I want what I came for. It's not fair." I'd be lying if I said I didn't wallow in the "it's not fair" moment when Reece was born. And by moment, I mean months. Months of feeling like I didn't get what I signed up for. Months of my mind jumping to the worst scenarios of what life with a child with special needs looks like. Months of wishing I could rewind to the moments before Reece was born so I could remember life before disappointment. That should not be read as Reece being a disappointment to me, rather the unexpected diagnosis. That's what grief does to you. But although grief can hit you at any time, it should be a place you walk through, not a place you stay in.
So why write this now? Why dust off this blog after years of
silence? Because I feel like there are others out there, like me, who need to be let off
the hook. Those who need to hear the answers to “Did I do this? Did I do
something wrong?” And just like the character’s mom tells her “this wasn’t your
fault”…that’s what I want women to hear and let settle into their spirit. Let
go of the guilt, shame, wondering and let them be replaced with the grace you deserve
to walk in instead. I’m not saying getting to this place is easy. In fact, it
may be the hardest journey of discovery you will ever make. And, I did not arrive here on
my own strength. That strength comes from God who lovingly and patiently
carried me to this place. Please know there is room here for you too, you just have to take
the first step.
Before you read this blog title and think this is a plea for
attention, let me attempt to change your mind. In a recent conversation with my
brother-in-law, he told me about how he and his family were out to dinner and
he happened to notice a family with a little boy with Down syndrome around the
same age as Reece. He watched the parents interact with their son and said he
could see how much they loved him just by observing them in an everyday setting
like dinner out. When they were leaving, he stopped by their table to say hello
and was able to connect with them by sharing about Reece. He told me that he
may not have ever noticed them, but having Reece in his life has made him more
aware of others with DS.
Isn’t it interesting how that works? You may never be aware
of something until you’re exposed to it. That’s how it is with DS. Before
having Reece, I didn’t know a single person with DS. Sure I’d see families
around, but it was a very rare occasion, and of course I knew of Corky from
Life Goes On! But I’d never had a real encounter. It’s amazing how many
families I see now. My eyes are open to a world that has always been around me,
but I never had a reason to focus my vision on it.
And it makes me wonder, what do others see when they look at
us? What are we showing the world when we are out in the community? What I want
the world to see is the same unconditional love Reece shows to those around
him.
I want the world to see a little boy who can do anything his
peers can do, just on his own timeline.
I
want the world to see two parents who are dreaming big for their little boy.
I want the world to see that DS is not as scary as it seems.
So, look at us! Future mothers and fathers of children with
DS, LOOK AT US! Look and see that these children are incredible little humans
who are worthy of the life you can give them. Look at us and see that life with
DS is beautiful. Maybe if more people look at our family showing love to Reece,
then maybe the fear of DS can be eliminated.
Today, on World Down Syndrome Day, we celebrate our loved ones with DS. We celebrate the
six million parents who said yes to life and we keep on educating until the 92%
termination rate dwindles down to zero. I won’t stop waving this flag, not
today…not ever.
***I’m partnering with the International Down Syndrome Coalition (IDSC) in celebration of World Down Syndrome Day (WDSD). Bloggers who write about Down syndrome were asked to write a post and share today on 3/21 – which stands for three copies of the 21st chromosome. This year’s theme is “This Kind of Love”, so please take a moment to read my take on this theme and view the beautiful video created by the IDSC.***
I didn’t know my heart had the capacity for this kind of
love.
When you dream of becoming a mom, you imagine loving your
child from the moment you lay eyes on him or her. But what if you receive
devastating news that makes you question the love you have for your new baby?
That’s exactly where I found myself when Reece was born. I
knew as soon as I saw him that my fear of having a child with special needs was
confirmed. I closed my eyes and wished to be pregnant again, to go back to not
knowing. To go back to not having to think of the challenges he would face
throughout his life. Clearly God had given me a baby meant for someone else.
I wish more than anything now that I could go back to myself
on that day and whisper in my ear what I know now…I would say:
“I know you’re afraid he’ll never
have friends, but just last week he had a play date with a friend from church.
I know you think people will
stare, they do, but only because they are captured by his loving and friendly
personality. He has a fan club, you know! The girls at the gym day-care scold
Jeff when he visits the gym without him. And the cashier at the grocery story
tells us she loves when we’re in her line because he is just so cute!
I know you’re scared he won’t
walk or talk, but he’s so fast you can barely keep up. And although he doesn’t
have real words yet, he can communicate through sign language. Today he told
you he wanted to take a bath.
I know you’re nervous he won’t
understand what’s going on, but he is so smart. Recently, when you were crying
after a rough day, he walked over to you and put his hand on your check and
said “oh” with the most sincere concern for your feelings.
I know you worry he won’t be able
to express how he feels about you, but his hugs, oh his hugs, so tight you can
barely breathe. He gives the sweetest kisses. He squeals when you and Jeff hug
AND he pushes you and Jeff together to make you kiss. He understands love and
shows it in the most amazing ways.
And, I know you don’t think you
can love him the way you dreamed, but you do. You love him MORE than you
dreamed. Don’t be afraid to open your heart to him, God knows what He is doing.”
Thinking back now, it angers me that my first reaction was
to question if I could love him the way I dreamed of loving my children.
There isn’t one thing I would change about Reece. Not his
fun-loving personality. Not his friendly attitude. Not his obsessive love for
Mickey Mouse Clubhouse. Ok, well maybe I would skip through the typical two
year old meltdowns. But who wouldn’t?!
When I think about how much I love Reece, and how strongly I
feel about him, if I love him THAT much, how much does God love us? I can’t
even fathom God’s kind of love. The lyrics from a Christian music group, Group
1 Crew, paint a beautiful picture of how God’s love for us is unconditional and
never ending:
HIS KIND OF LOVE – Group 1 Crew
There
are no words, no phrase I could create
There is no melody that I could make
How do you sing about a love so deep
Without feeling like you missed something
I could try but I could not explain
His kind of love (His kind of love)
Is reckless for us
His kind of love will never give up
‘Till the whole world knows how far He went to show
His kind of love
His kind of love
His kind of love
His kind of love
Tell me what kind of God would choose to save
The bruised, the broken, the sinners, the runaways
How do you ever try to comprehend
this love that knows no limit
I could try but I could not explain
His kind of love (His kind of love)
Is reckless for us
His kind of love will never give up
‘Till the whole world knows how far He went to show
His kind of love
His kind of love
His kind of love
His kind of love
This is our God
He is strong and His mercy is our song
He won’t stop chasing us
That’s just His kind of love
His kind of love
His kind of love
His kind of love (His kind of love)
Is reckless for us
His kind of love will never give up
‘Till the whole world knows how far He went to show
His kind of love
His kind of love
His kind of love, His kind of love
His kind of love, His kind of love
This is our God,
He is strong and His mercy is our song
His kind of love, His kind of love
Just
think about that for a minute. Let it soak in. God’s love is reckless for us.
That means He would do ANYTHING for us, anything. And when I think about my
love for Reece, I know I would do anything for him, giving me just a small glimpse of
how God feels about His children. This kind of love I have for Reece…it’s
definitely reckless, definitely.
Take a moment to watch the 2014 World Down Syndrome Day video capturing "This Kind of Love"
Read an incredible story of a bond so great between parents and a woman with Down syndrome. For a complete list of bloggers participating in the IDSC 2014 World Down Syndrome Day "This Kind of Love" campaign, click here!
***I’m partnering with the International Down Syndrome Coalition (IDSC) in celebration of World Down Syndrome Day (WDSD). Bloggers who write about Down syndrome were asked to write a post and share today on 3/21 – which stands for three copies of the 21st chromosome. This year’s theme is “Who I Am”, so please take a moment to read my take on this theme and view the beautiful video created by the IDSC.***
So, your baby walks, talks, is out of diapers, can say the ABC’s, count to 10 in Spanish, and you haven’t even left the hospital yet?! Clearly that’s an exaggeration, but the real question I’m getting at is why do parents feel the innate need to share how early their child started doing things? As parents, we fall so quickly into the habit of comparison, something I’ve heard described as “the compare snare”. It is two-sided really. One side is quick to brag about accomplishments and the other side feels like they are failing as a parent because their child isn’t on the same time table for that same accomplishment. This “compare snare” can cause quiet dissention between friends, crippling thoughts that you are doing something wrong or not doing enough.
I can be real here, right? In five years, will it matter when they learned to walk? No, what matters is that they walk. It’s like a high school or college GPA…does it really matter once you’re in the work force?What can we do, as parents, to change this? I want to encourage you to rethink questions between each other, to intentionally think about this idea of comparison. I want to know about your child, about his or her personality, not necessarily what he or she has accomplished. Instead of asking “does Bobby walk yet?” ask “what makes Bobby laugh?” There is a huge difference between those two types of questions. The first may make a parent feel uncomfortable answering because their child may not be walking yet – I personally fit into that category. The second allows most everyone to answer, and who doesn’t love sharing a fun story of how they’ve gotten their child to giggle?!
I recently read a poem that describes this idea of comparison in a way that I think we all can relate to in one way or another:
Reaching –
Sometimes I wonder where it comes from?
This idea of reaching, you know, wanting more?
It seems like it’s all I can remember from the moment I was born.
My mom says people wanted to know my length and weight,
And told her about how big their babies were with a size chart for debate.
It didn’t stop there though, following me through school.
We compared who took the first step and said their first word,
Who sat on the potty and who was first to drop friends at the pool.
Was I the teacher’s pet? Who could go the whole way on the monkey bars?
Who could run the fastest and get straight A’s and be so smart?
In junior high, I wanted the clearest skin,
But those darn pimples kept popping up like pins.
Who got asked first to the dance?
Did that girl really like me, or did she really like Mike Vance?
I tried not to worry, I tried not to see,
That so many others seem to be creeping ahead of me.
The years to come didn’t get any better as I reached for more,
When can I get the best smartphone and drive the best car?
How many friends on Facebook do I have?
What about my first date?
Does it really matter what label I wear? I was so caught up just in case someone might stare.
But the reaching never stopped, I kept wanting more.
Whatever everyone else wanted, I wanted it before.
What college would I go to? Would I marry someone they all liked?
Is my career what I’m passionate about or would it merely buy that new motor bike?
We searched for a house to live in but they all seemed too small,
My best friend just bought one on the nice side of town.
It wasn’t just me that seemed to get caught inside the frame,
My kids were growing up and acting just the same.
The bumper sticker on my car said my boy was smarter than yours,
He was an honor roll student and played nearly every sport.
And we grew as a family with things and such, always reaching for what was just out of touch.
Hoping and praying that we could do anything we wanted -if we just believed.
Hoping no one really was looking inside our hearts too, deep.
Trying to be better than anyone else around,
Trying to get ahead rather than slow down.
And see life couldn’t be found…In the buying and selling of stuff on this earth.
Filling our hearts to cover the hurt.
And, now that I’m older, I’m wondering about the end.
Who will attend my funeral,
Will my casket be made of wood or some new plastic trend?
Did I save enough so I can live just like I used to,
Or will I be stuck in a home with a small window view?
Looking back, I wished I done less looking, to see if the person beside me was better than me.
I wish I had done less reaching, less focusing on the more, for all I want now is for someone to come through the door.
To let me know I’m loved, that who I am was enough,
I wish I would have let God know He was bigger than all the stuff.
Now it all sits in an 8 by 8 frame, rotting and piling with dust,
Where moths can destroy it and thieves can lust.
For where your treasure your heart is, not in the reaching for more,
But in simply believing beyond this life is what’s at life’s core…
Sometimes I wonder where it comes from?
This idea of reaching, you know, wanting more…
Author: Rempel, Mark A. (Copyright 2013)
Today, we celebrate World Down Syndrome Day (WDSD). A day to spotlight the sweet ones in our lives who rock an extra chromosome. God created each one of us to be unique. He was purposeful. You are who you are…and that was His perfect plan. “I praise you because I am fearfullyandwonderfullymade; your works are wonderful, I know that full well.” Psalm 139:14
TheIDSC chose “Who I Am” as this year’s theme for WDSD. I love it because it is so incredibly all encompassing. It is a powerful statement that shows others how you view yourself. And, since Reece is a little too young to tell me who he thinks he is, I took the liberty of selecting what he might say:
Take a moment to view the beautiful "Who I Am" video created by the IDSC to celebrate uniqueness on this special day:
For a complete list of bloggers participating in the IDSC World Down Syndrome Day 2013 "Who I Am" campaign, click here.
