The Thief of Joy

There’s a word attached to China adoption that has  become a household word for us:  special needs.  It was big and scary and hard to swallow at first.  In all honesty it down right terrified me.  I felt so ill equipped to embark on this journey, and the unknowns of adopting a special needs child threatened to put a stop to us moving forward.

The Lord has changed all that, and one of the avenues he has used was a surprising friendship.

It all started with a little light Instagram stalking.  It didn’t take long before I was TOTALLY fan girling over this super hero of a mom.  I found her through the search page of Instagram, as I was obsessively trying to find families who had adopted from China.  Super weird and stalky…I understand that.  She had brought home the cutest little nugget I had ever laid eyes on.  It felt like proof that it could happen for me too.

And then, as I was stalking this, then stranger, I encountered Deacon, her son, who was born with down syndrome and life as I knew it was over.  I was IN LOVE, obsessed even.  (You too can be obsessed…simply head over to @ahtharpe on Instagram and click on #deacondude)

And to be completely honest, the words special need lost their bite a little after I watched every video ever posted of Deacon.  What I saw was an incredible family, leading a completely normal life, TOTALLY embracing the special need that Deacon was born with in a way that normalized it and put it out there for the world to deal with.  And also Deacon is hilarious and by far the cutest human I’ve ever seen.

I was smitten by this family and continued to stalk them until ONE DAY while sitting on the patio of a local restaurant, SHE WALKED BY….this mama that I had grown so mesmerized by.   What the actual heck?  She lived in my city??  And then….right behind her…came Deacon.  THE Deacon.  I could not even deal with my level of fan girl at this point.

I approached her and I think told her I was obsessed with her and thanked her for the way she lived her life and raised her babies.  My husband walked up and did a fake bowing down gesture….a “we’re not worthy” kind of gesture.  She had every reason to not make eye contact and block me on all social media.  FAN. GIRL.

Fast forward a bit and now WE ARE BESTIES.  This rockstar woman I admired from a far is now in my inner circle.

Being her friend has changed me forever.  I have had to face my own insecurities about a “not so perfect” kid, face the truth of what my role as a parent is, learn to think of people as people before I define them by their diagnosis and embrace the life that God has given me, no matter how hard or unexpected.

Her family has placed a mirror in front of my heart, constantly reflecting back my views of life and causing me to ALWAYS think of the person God created first.

God has used her life as a way of pushing mine outside of the boundaries of what I once coveted when it came to my babies: healthy and “normal”.

God gave me Andrea at the absolute perfect intersection of my life, and the Lord, through her, has prepared my heart for Esther more than I can even explain.

SO…. TODAY YOU GET TO HEAR FROM HER!  Oh my word I’m so excited for you, because what she has to say is going to ROCK YOUR WORLD!

So, blog family, meet my bestie: Andrea Tharpe!

Alright Andrea, tell us a little bit about yourself:

My name is Andrea Tharpe. My husband and I have been married 13 years this month.  We have four kids ranging from 2 to almost 12.  We are evened out with two boys and two girls.  Three of them are belly babies and one is adopted from China.

We recently moved from a gated community in the city to the full blown, middle of nowhere country.  We went from our only pet being a fish to now owning a dog, a cat, chickens, a rabbit, ducks, and my husband who used to just sit on the couch and watch tv has become a farmer/gardener extraordinaire. I don’t even know who we are anymore.

I am a photographer and also run an online shop/blog called Be the Light Project.

(You guys, she is not lying.  They live in that actual middle of nowhere.  NO INTERNET people.  I have a friend with no internet.  Surely I’m the only one.  The first time I went to her house I texted her and asked her, “What should I wear” because I am so unaware of the country and what is appropriate)

One of Andrea’s children, Deacon, was born with down syndrome.
Andrea, can you tell us about the day Deacon was born.

The day my youngest son, Deacon, was born we experienced a roller coaster of emotions.  My pregnancy with him did not go as smoothly as the other two, and because of that we were seeing a high risk specialist.  Six weeks before my due date, I had my final visit with them.  They discovered that my blood pressure was high and my placenta was shutting down, and within two hours of that appointment I found myself lying on an operating table, scared to death as they prepared to deliver my son.  I’ll never forget the feeling of relief when I heard him cry for the first time and the tears that poured down as they briefly held his little face next to mine.  Friends and family flooded in to see me while I waited in recovery.

We were all surprised at how fast things happened, but so excited that he was finally here safe and sound.

But then I waited.  And waited.  And waited.  Hours had gone by and they still had not brought my baby back to me.  Each time I asked, they told me they were just waiting on a room to be available.  Finally, the Neonatologist came in with a team.  He started with some small talk, but he kept asking for Dad in a way that I could tell something was up.  I thought he was just going to say that Deacon was experiencing your typical preemie problems, but when we finally got Dustin back in the room, the doctor proceeded to tell us that he noticed many of the characteristics of Down Syndrome.

He said he could not confirm it without a test but that he had seen it enough times to be confident that was the case.

We were stunned. And I was in denial.

I knew nothing about Down Syndrome, and I remember thinking, “Nope. Uh-uh. This cannot be happening.  You’ve got the wrong person, God…I am not cut out for this!”  Later that evening, we finally got into a room and all I wanted to do was go to sleep, wake up, and realize that it had all been a bad dream.  As things got quiet and we laid there in the dark, I heard my husband sobbing like I’ve never heard before from the couch.  I called him over to my hospital bed, where we just held each other close, speechless.  I was still so numb and in shock that I didn’t shed a tear.  But then morning came, reality sank in, and I cried uncontrollably for, pretty much, three days straight.

During that time, I would go visit Deacon in the NICU and hold him, but I did not feel connected to him.  I felt like I did not know him.  I did not feel like this was the same child that I had been carrying inside of me all of those months.

There was a grieving process that took place, I had to let go of the child that I thought I was having and accept his diagnosis, accept him fully for who he was.  Then I was flooded with guilt over those feelings and the lack of bonding.

The time came for us to go home, but we had to leave him behind in the NICU.  He was having some issues with breathing and feeding and needed to stay for what ended up being two more weeks.

Driving away from the hospital was when it clicked….THAT WAS MY BABY.  He was the one God gave to ME. Down Syndrome or not, he was MINE, and I loved him like crazy.  Then a whole new set of tears came over having to leave him there, over him not being in my arms.

So, after the dust settled and the shock of his diagnosis wore off, what was life like?

During those two weeks at home without him, I felt very lonely.  I knew nothing about what to expect having a child with Down Syndrome, so I went searching online.  I discovered the blog of a mom who had a daughter with DS not much older than Deacon.  I read her birth story and discovered that she had experienced many of the same emotions that I was struggling with guilt over.  It made me feel better to know I was not alone in that.  Also, she was a photographer and had lots of pictures with her posts.  Her family looked “normal”.  They looked happy.  That’s when I knew I could do this.  From then on, I knew it was going to be okay. Not easy, but OK.  I also knew then that I wanted to do for others what she did for me by sharing her life openly.

You guys, how cool that the same way God used Andrea in my life, He used a total stranger in hers to display what could be possible inside of the new way of living God had handed her.

In Heather Avis’s book The Lucky Few (EVERYONE GO BUY IT AND READ IT NOW), she says that there is nothing negative about down syndrome.  How do you feel about that statement?

I think I would have to agree that there is nothing negative about Down Syndrome.

I would not take Down Syndrome away from Deacon even if I had the chance.

What a powerful statement.  Let that sink in to your bones.  The very thing that terrified and shocked and looked big and scary and ugly is now the very thing that this mama would not part with, even if given the chance.

(You are now dead over the cuteness of those rolls and those glasses.)

Yes, there are parts of this journey that are not easy, like watching your child fall behind and struggle to do things that come naturally for others, or having to fight harder for your child to receive the education that he or she deserves.  We have been very blessed in that Deacon hasn’t had any serious medical issues, but many of his friends have had open heart surgery and some have even battled Leukemia.

Yes, these things are hard, but life in general can be hard.  That does not necessarily mean that it’s bad.

Hard does not always equal bad, sometimes it’s just hard.  It can be good, it can be the center of God’s will and it can be hard, all at the same time.

Deacon has completely expanded my horizons and taught me how to truly love and appreciate the differences in people.  ALL people.  Deacon has a love for others that is unconditional and resembles Christ’s love for us.  Because of that unconditional love, my mom has this theory that we are the ones with the incorrect amount of chromosomes and that those with Down Syndrome are just like God intended us to be. I think she may be right.

Your favorite quote is, “Comparison is the thief of joy.”  Can you preach on that for a minute?

Having a child with Down Syndrome has definitely changed my view of parenting and what I value as important.  As I began to change, so did my goals for my children.  I remember as a first time parent reading the “What to Expect when You’re Expecting” books.  Each month I would nervously look at the list of things my child should be doing at that point.  I was so concerned with whether or not they were on track.  From there I worried about them getting into Magnet school.  I wanted them to be the best, have the best, do their best.

But then came Deacon.  I had a nephew born one month before him and another born 5 months after.  One of the hardest things was watching them fly by Deacon with their milestones.  I was constantly comparing and being reminded of the things that he was not able to do.

One day I came across a quote, “Comparison is the thief of Joy”.

The more I pondered on this quote, the easier it got for me to not be brought down by the things that Deacon was not doing, but rather celebrate the things he was doing.  Little by little, I learned how to appreciate the small things.  I also realized how much this applied to other areas of my life.  All my life, I had worked to be someone that I thought others wanted me to be, and I began to realize that as a thirty year old woman, I didn’t really know who I was.  I didn’t want that for my kids.  I am now working hard to instill in them, YOU do YOU!  Don’t worry about what others think and don’t compare…just be yourselves.  I am also striving to lead by example and teach them how to love others.  Even those that aren’t like them.

Just last week I was at my oldest son’s school selling necklaces.  He’s in middle school where everybody is awkward but trying hard to be “cool”.  There is a little girl in his class who has Cerebral Palsy and is in a wheelchair.  Her aid came up to me and told me that Noah was one of the first people to talk to her at the beginning of the school year and make friends with her.  When I talked to him about it and was telling him how proud I was, he said, “Mom, I don’t know what the big deal is.  She is SO nice and very smart and really is just like the rest of us.  It just takes her a little more time to talk and do things.”   I could care less if he ever made an “A” on a report card again as long as he continues to love like this.  In my book, this is success!

How would you describe what it’s like to raise a child with Down Syndrome?

One of the best ways to describe raising a child with Down Syndrome is a poem written in 1987 by a woman named Emily Pearl Kingsley after her son was born.

WELCOME TO HOLLAND

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says,

“Welcome to Holland.”

“Holland?!?” you say.

“What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.

And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

We’re five years in, and I’ve lost my desire to go to Italy. (Figuratively speaking, of course!)

I’m finding Holland to be a VERY beautiful place! 🙂

Friends, I told you.  Isn’t she wonderful.

So what are some take aways from this conversation:

God’s goodness for our lives isn’t always what we expect.  His definition of GOOD and RIGHT and PERFECT sometimes looks nothing like our definition.  His purposes are so much larger than our very small views of reality.  His purposes are to bring himself glory, to grow us and stretch us and make us more like Him.  And what better way to do that than through something unexpected, unplanned, where we have no manual or strategy.  We only have HIM.

Hard does not always equal bad.  Sometimes hard is good, sometimes hard is the better route. But hard is still hard.  We can be completely in the center of God’s will for our lives and still struggle and grieve and be really heart broken.  Hard is not a marker that we are on the wrong path or have ended at the wrong destination.  Hard is just hard, and hard causes us to need Jesus even more.

Comparison is the thief of joy.  Ain’t that the truth.  Comparison takes our eyes off of what we have right in front of us and places them only on what we don’t have.  We miss out on the goodness that is our own lives.

What we think matters with parenting our kiddos, sometimes doesn’t matter as much as what God would have us teach them.  Our littles are ours to steward and shape.  Their hearts are moldable and curious and they are looking to US to learn all the things.  What I love about Andrea is that she has an effortless way of teaching her kids about the stuff that really matters: loving people.  It is not forced, it is in the DNA of their family.  And they love BIG.

 

Get outside of your comfortable standards, out of the status quo, and in whatever way you can, experience life lived in the full joy of whatever it is that God has handed you.  He is always good.  His ways are always perfect.  The goodness of what He gives is not contingent on what He has given the person next to us.  Comparison is the thief of joy.

 

Want to get in touch with Andrea?
Follow her over on Instagram at @ahtharpe or check out her amazing jewelry at Be The Light Project .

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