Better

We're leaving our church home of fourteen years for one that has a special needs ministry. It is not the church's fault. They have made it clear that they are happy to start a Buddy Program but we would be the test case. Frankly, we have too much going on to tackle that right now and I was finding that, as there wasn't a place for Bogdan, I was just staying home with him and isolating myself more than I already was. 

I'm feeling a bit nostalgic because of it. 

Honestly, everything changed when Eon was born. That tiny bit of extra chromosome altered the course of our lives. 

I am partly to blame. I jumped into the world of special needs with both feet, attempting to drag my friends with me. I waxed eloquent about how "normal" our lives were with Down syndrome, daring anyone to challenge me. I developed a whole new vocabulary and insisted on people first language. 

I made it all about me. 

I became so defensive, friends were uncomfortable even asking me questions and, eventually, felt unqualified to speak into my life at all. The gap between my reality and theirs widened until there was very little common ground left. I regret that aspect of this journey.

But there has been so much good, as well.

I struggled with my faith that first year. Ideas that had been nebulous speculation before, now became concrete reality. My faith deepened. I deepened as I wrestled and grappled with belief. My paradigm shifted and I released my expectations of perfection for myself and my family.

God was gracious to us. Because of it, I have more grace for others and my circle widened to include those of different faiths, or of no faith. He's teaching me, "Imago Dei"...Image of God. All people, regardless of ability, race, belief, intelligence, bank account, manners....all people are created in His image. If I look closely and love deeply, I can see Him reflected there.

My sense of justice was ignited with the birth of Eon. Discrimination of those with disabilities is not just on my radar; I see it rampant everywhere throughout the world, but no more than against the unborn with known special needs in this country. The current hunt to discover and eliminate these unborn babies smacks of eugenics. We should recoil in horror at what's being done to them instead of hiding behind "choice." 

In other countries, particularly in Eastern Europe, those that make it past the womb are in for a horror of their own. Children abandoned at birth, live in their own filth in cribs they will never leave. One percent of orphans will escape through adoption. One percent of 147 million. 

Our Bo was one of the one percent. Now that we have him and know him and love him, I am awestruck at how simple it was to meld him into our family. Don't get me wrong, just like parenting in general, adoption was ten times harder than I expected, but it was one hundred times more wonderful, too. Without Eon, we wouldn't have Bo.

Eon, himself, is hilarious. We laugh so much because of his antics! He is full of personality and engages life more fully than anyone I've ever seen. He is confident and friendly, sneaky and brazen. He makes me smile.

Life before Eon was good. While I didn't know it at the time, it was easy and comfortable. But life with Eon is amazing! It is challenging and fulfilling, crazy and deep, and decidedly not comfortable or easy.

But it is better!

He Chose Life

While in his country to adopt Bo, we were given information about his background and medical history. Some things stood out to me.

His birth parents struggled with infertility for ten years and Bo was a product of fertility treatments. Fertility treatments that often fail, but didn't this time, so insistent was he to become. 

Experts estimate that eighty percent of Down syndrome pregnancies end in miscarriage. Termination rates are high, too and in his country, prenatal testing for women over thirty-five is the law. His birth mother was thirty-four. It is a wonder he survived the womb. 

After birth, he was diagnosed with Down syndrome and a heart defect that caused pulmonary hypertension. His parents walked away. He had trouble breathing initially, and spent some time in the NICU, alone, before being placed with his foster family. 

At six months of age, the social worker picked him up and delivered him to the hospital where he underwent open-heart-surgery. He had undisclosed complications and spent many weeks in the hospital, alone, before being discharged to foster momma and returned to their home. 

In that home, filled with the smoke of unfiltered Turkish cigarettes, he continued to wheeze and was mistakenly diagnosed with asthma and prescribed nebulizer treatments which did nothing for the potentially life threatening condition he actually has. 

Unaware that he has swallowing issues, his caregivers gave him bottle after bottle of juice and milk through a nipple with an over-sized hole, in effect drowning him with every gulp and setting him up for countless bouts of pneumonia that should have cost him his life, but miraculously did not.

Even being home with us, his forever family, did not eliminate his risk of death. Not knowing about his subglottic stenosis, we mistakenly thought the bout of croup he suffered his first week home was something we could handle without medical intervention. With our new-found knowledge, we now understand that a trip to the emergency room was most definitely in order. Still he survived. 

With all the talk of terminating pregnancies for Down syndrome, no one speaks of what the child would choose. By his very survival, against all odds, Bo has spoken. He chose life. Time and time again, orphaned, abandoned, rejected and without a known future or a hope, he fought to survive. He chose to live.

He chose life.

I am so incredibly glad that he did.

Guest Blogging

I have the privilege of guest blogging for my friend, Beck Gambill, over at The Accidental Mama, today. Head over there and read my post. Leave me a comment, too!

Also, please pray for Beck this week as she's in Serbia loving on the least of these in mental institutions. 

There Are More

I've laid low on the orphan front these last few months since bringing home the new kid. I stopped reading blogs about orphans or adoption, stopped following the adoptions of other families, stopped contributing to those causes. Just dropped out.

I admit adoption was tougher than I anticipated. He's not difficult to love or get along with, but just adding another person, along with all of his appointments and dirty diapers, into the chaos of our lives was challenging. 

Having accomplished what we set off to do made me feel a bit finished with all the advocacy. And, honestly, who had time for all of that thinking? I was just trying to keep my head above water. Pride played a part, too, I'm sure. It usually does. It seemed presumptuous of me to suggest that others should do as I was, given that I wasn't doing it all that well. 

But the other night, as I was rolling over in bed thinking about how grateful I am to have him, God spoke. It was almost audible so clearly I heard it in my heart. My breath was taken from me as this thought leapt into the center of my brain.

There are more.

I sat up. What? As realization dawned...

Oh God, there are more!

As I watch this child blossom in the love of family, as I see even his skin transform from good nutrition, as I look at the devotion he has for his daddy, I remember. 

There are more. Thousands of them. No, millions of them. Orphaned, abandoned, rejected.

Alone.

My boy is not special. He is funny and quirky and delightful...and special to me, but EVERY child has the potential to be funny and quirky and delightful and special to the people who love them!

Every orphan has that potential...all of them.

I get lulled into complacency on this cruise ship called America. I begin to think that my next vacation or how much sleep I'm getting or where to find the best local coffee is real life. 

But it's not. 

If you try to keep your life for yourself, you will lose it. But if you give up your life for me, you will find true life.  And how do you benefit if you gain the whole world but lose your own soul in the process? Is anything worth more than your soul? Matthew 16:25-26 

If I live for myself, I'll lose my soul.  Real life is gained when we give ourselves away. How could I forget those we left behind?

There are children without homes. Children who have never experienced love and have probably lived their whole lives without experiencing a kind word or gentle touch. Children whose care is a paycheck to someone, if they get any care at all. Many of them will die from neglect, starvation, or lack of medical care. 

And these children could blossom if they could just find someone who will give a damn about them. 

Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done. Proverbs 24:11-12

 There are more. So, so many more. 

Giveaway WINNER

The winner of the Trades of Hope giveaway is....

SABRINA!!!

Thanks to all of you who entered! Please remember Rainy's site when you have gifts to give. 

Sabrina, please email me your address so we can get your scarf to you. 

Congratulations!

Home Nearly Five Months

Bo has been home almost five months. The change in him is amazing. He is no longer content to play by himself or stim in a corner. He wants to be part of the action! 

Loving the big kid swing!

We went to a family reunion a few weeks ago and stayed in the family cabins in a state park. He hated every minute of it and cried most of the time, wanting so much to go home. We knew, even then, that it was good for him to experience being away and then returning home, to better understand that home is forever, but it was hard while we were there.

The one thing he did enjoy was time at the pool. He loved it! We doubt he'd ever been swimming before, but he is a water lover without fear. Since our return, we joined the local YMCA and swimming has become a favorite activity for the family. He still loves it. In the kiddie pool, he sticks his head in the water and walks forward until he needs to breathe. I suspect he likes the quiet under the water, since it is never quiet here. 

Mudding in the creek is a favorite, too!

He currently attends three therapies a week, but speech will soon increase to twice weekly. (Add in speech therapy for Ben and Eon, and we are starting to feel like we live there.) He has an appointment with a highly recommended ENT the end of the month for a second opinion about his subglottic stenosis since I loathed the first doc, but specialist appointments and procedures have slowed down. 

Teaching him socialization has been a priority. When he's tired or unhappy, he will clobber whoever happens to be closest. When he is finished with his dinner, his plate flies across the room unless we're quick enough to catch it. If he doesn't care for the food provided, he takes it out with his hand and flings it. He is learning that we won't allow him to gnaw on inanimate objects in public...or people either, for that matter. Keeping his hands out of his diaper is a constant battle. 

But there is much he has already learned. Walking is his primary mode of mobility now, instead of the sideways ape scoot he used to do. He watches the other kids run out to play on the trampoline and comes and takes my hand to let him out, too.  He can put his shoes on mostly independently (a skill I wish he'd teach Eon.) He can take them off, too (a skill I wish he didn't have.) He's learned to come into the kitchen and tug on my pocket to get a preview of what I'm cooking for dinner. He looks up from playing cars and, with a little smirk, comes and tickles my feet.

First fireworks display...Crazy Americans!

So many firsts! And so much that we missed those first years. So many firsts that we will never share. Or things that we assume are firsts that he may have already experienced a hundred times or more. 

So many questions.  What experience did he have with shoes that look like these that makes him pull his feet back and cry every time we try to put them on his adorable feet, even though he has not yet worn these?

Why is he so terrified of the stuffed alligator we found in the back of the boys' closet?

Where does he get his complete fascination with shoes (except those pictured)?

We may never know. But, at some point, we will have more shared history than not. One day, his life will be more son than orphan. Until then, we are enjoying the process.