Who I Am - World Down Syndrome Day 2013

***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 21^st 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 fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:14

The IDSC 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.

If I Had A Magic Wand

I sit, motionless, still reeling from the words I had just heard. The words ache in my ears. The tears don’t come just yet, but they are beginning to burn fiercely as they well up. Then, like a flood gate they flow, almost unending for days on end…

 

The words, you ask? Confirmation. Science in its boldest form. Trisomy 21. Three copies of the 21^st chromosome. DOWN SYNDROME. There they were again…this time in print, so I could torture myself by reading them over and over and over.

I had been holding on to hope for nearly two weeks. This hope, resembling a strong woven rope, was holding me up, helping me through each day. Hope that our new little baby didn’t have to live under the label that doctors and nurses casually slapped on him when he was born. The karyotype blood test had been performed on Reece in the hospital when he was only two days old, but the results typically took two weeks to come in. Two weeks to stare at him and convince myself that everyone was wrong. Believing that his almond eyes were just a unique feature, and the palmar creases in his hands were passed along from a family member, after all, my grandmother has the same creases and she doesn’t have Down syndrome.

Our appointment with the pediatrician was on a Monday, a sweltering, August Monday. It was my actual due date for Reece, but the little man decided to surprise us two weeks early. This was the day we were going to get the karyotype blood test results. I dragged that hope into the exam room, feeling the rough fibers of that rope between my fingers, it was holding me up just as it had over the last fourteen days. Waiting for the doctor to join us in the room was beyond nerve wracking and all I could do was pace the floor, five steps this way and five steps back. We waited, knowing on the other side of that door were results that would determine the course of this little boy’s life, our life. Jeff held Reece as I paced and for what seemed like forever, and we waited.

The door swung open and in walked the doctor holding a crisp white piece of paper. I took a seat in the lone chair in the room and braced myself for the news. Without as much as a hello, the doctor said, “Well, we got the results…and he does have it.” My hope began to unravel faster than I could hold the rope together until it swiftly dwindled into the smallest of threads, eventually snapping from the pressure of the blow.  

 

An avalanche of sorrow fell on my shoulders and with that I began to cry. Seeing my tears, “Oh, I thought you knew?” the doctor callously questioned. I couldn’t even believe that there could be anything but encouragement coming from her mouth at a fragile time like this, and I wanted to scream at her “NO! I didn’t know. I didn’t know he had Down syndrome for sure, but now I guess I do…don’t I?” But instead, I maintained my composure and asked for some time alone. The remainder of the appointment is a blur to me, but the reality of Reece’s diagnosis was painfully clear.

 

A quiet knock, as not to wake the sleeping baby, who was now just a few weeks old. In walked a representative from a local Down syndrome organization, who called to request a visit with us shortly after we received our heartbreaking news. It took everything within me to accept her invitation as I was walking through a very dark place and struggling with acceptance. She was a kind-hearted soul who had a child with Down syndrome of her own. Finally, someone who really understood what we were going through. She gave us a new parent welcome basket filled with information and gifts, which I’m embarrassed to admit, sat in a corner for months before it was even touched. But it wasn’t the gifts she gave us that stuck with me, it was what she said that turned out to be the most precious gift of all.

“What you’re feeling isn’t good, isn’t bad, it just…is. And if I had a magic wand to wave this all away, I wouldn’t even do it, because you have to experience this heartache, this pain, this sadness to get to a place of true acceptance.”

There it was. Something I didn’t want to hear at the time, but now look back and know it was exactly what I needed. It went far beyond the “I’m sorry” that most people whispered with best intentions when we told them our news. In my heart, I knew we were not alone. How many parents had already navigated this path we were beginning to tread?

And now, 19 months into this journey…I can honestly say, if I had a magic wand to wave it all away, I wouldn’t even do it, because I did need to experience that heartache, that pain, and that sadness to get to the place of true acceptance that I find myself in now.

The Grace To Make This Look Easy

It seems that many blogs are started by parents of children with special needs.  And maybe you wouldn’t be reading this if it weren’t for Reece, even still, I want to share my heart and things I’ve learned on this 18 month journey with anyone who may be looking for the answer to “Why me?” Did you know there is a difference between “Why ME?” and “WHY me?” Let me help you understand the difference.

My husband, Jeff, and I were on the “five year plan”. You know, the one where you plan to spend five years just the two of you? Yes, that was us. And yes, we stuck to it, even amidst all the famous “when are you going to have a baby?” questions that fall so easily off the tongues of strangers and loved ones alike. I was excited to be pregnant, and thankfully, I had an easy pregnancy (don’t hate me) and I know how blessed I was, especially after hearing the stories of friends who had experienced just the opposite. Everything fell into place so perfectly, the weekly growing belly pictures, the baby shower and nursery, choosing a name, and each visit to the doctor. I would’ve done it a hundred times over…

 

But I had this secret fear. One of those fears that silently gnaws away at you, and no matter how hard you pray or wish it away, it remains, and serves as a constant reminder that some things are just out of your control. You see, my biggest fear about becoming a mom was having a child with special needs. I was standing firm on that old phrase “God doesn’t give you more than you can handle.” I was the first person to acknowledge that special needs were beyond what I could handle and God would never give that to me. Anything but special needs, God, you and I both know I can’t handle that.  Nope, safe from that, check it off the list.

I remember it vividly. I was moments away from meeting Reece, sitting in triage waiting for my 3:00pm emergency C-section. My mom was waiting with me and after a long pause, I asked the question that brought my secret, silent fear to the light. “What if he has special needs?” I can look back and see, almost touch, those words coming from my mouth, because it was a release. Like asking someone that question freed me from the bondage of that fear I’d been carrying for nine months.  I can’t tell you what my mom said, but I know that she encouraged me, as she always does, with words that made me feel confident and brave.

And then, at 3:04pm, my whole world changed. A tiny cry filled the room, the most beautiful sound. “He’s here,” I whispered to myself, Jeff holding my hand ever so tightly. The doctor carefully walked him over for my first glimpse of my son, the moment I had been waiting for and I was ready. Through tears, I stared at him, zeroing in on his eyes, they were the only thing I could see and I knew something wasn’t right. The words ‘Down syndrome’ flashed in my mind and my heart started pounding violently, body numb with fear, mind racing to the worst of places. My first glimpse of him was so fast, I didn’t have time to study him, so I assured myself that my eyes had tricked me, and that all newborns look a little funny because of what they have just endured.  I reminded myself that it can’t be true, not until someone tells me or a test proves it, and I pushed that terrible thought from my mind.

 

And then someone told me. “We have reason to believe that your son may have Down syndrome.” I looked to Jeff, who had heard that same phrase, all by himself, minutes before as I was still in surgery. I desperately searched his face for something, anything, to know that our son was ok, but his down trodden face said it all and immediately my spirit was crushed. I didn’t hear anything the nurse said after that, except when she said “you know, SOME of these kids go on to do really great things. I have a friend with an adult son with Down syndrome and he has the intelligence of a 7^th grader, so that’s good news!” I didn’t cry. I didn’t speak. I didn’t anything. My joy… stolen. I hadn’t even had the chance to really hold him, kiss him, or tell him I loved him before a label was slapped on him. Had the nurse realized that what was just business as usual to her, was my whole life crashing around me? When I finally got to hold him, ‘DOWN SYNDROME’ was all I could see when I looked at him. This was not the baby I had dreamed and this…this was not fair.

Questions filled my head as I sat there holding my new baby, who seemed like a stranger to me, not the baby I had felt growing and kicking inside. Hard-hitting, gut-wrenching, suck-the-breath-out-of-you questions like, will everyone know by looking at him? Will he ever have friends? Will people stare and make fun of him? Will he always live with me? Did I do something wrong? And the biggest question of all, why ME? Thinking back to that question I asked minutes earlier in triage…had I asked for this? Was God saying, “Yes, you can handle this…and here, let me prove it to you.”

I was at a crossroads. I could either turn my back on God because He hadn’t held up his end of the bargain or trust that He knows what He is doing and has a plan for Reece and our family. I had to make a choice. Why would I walk away from God now when He has blessed my life so immensely? And that is when my question of ‘why ME?’ transformed into ‘WHY me?’ Why had God chosen ME to be Reece’s mom? What is this innocent, sweet child going to teach me about life? I consciously made the choice to fully rely on God to bring me through this pain.

There were hard days, weeks, months…and when I was at my lowest, God picked me up and carried me to a place of peace. When I said, “I’m afraid”, He quietly answered with “I am here.” Sometimes I think God lets us go through something challenging to remind us how strong we really are and how powerful He really is. God has this amazing way of changing hearts and giving us the strength to get through something we didn’t think we could handle. When I used to look at Reece, ‘DOWN SYNDROME’ was all I could see, and now…now, I see a sweet, world changer who has stolen the hearts of everyone who meets him.

Thank you, God, for granting me the grace to make this look easy, because there have been many tough days and unchartered roads ahead. But still, I will wait on you, Lord, to guide my steps through the unknown.