Exploring Special Needs
For some reason, this week has been a little tough for me. Usually I feel very at peace with how Ruby is, but once in a while old dreams crop up and the “what ifs…” creep in.
Sunday morning, as part of his message, our pastor showed a beautiful picture of his granddaughter up on the screen. She is adopted from Ethiopia and her huge smile and gorgeous brown eyes would melt your heart.
How can I describe him? Who can I give words to describe the 4-year-old boy who has changed my life?
Going to China this past summer opened my eyes as I got to see how these orphans live everyday. It opened my eyes to see what life could have been like for me. You see, 15 years ago, I lived in an orphanage in Anhui Provence, China. I lived in a building full of children like me; and we all lived alone. No parents, no families, needs barely met if at all. Sometimes I still wonder all these years later, what brought my birth parents to that place of abandoning their baby–me. I was only 1 day old when it happened; knowing I was unwanted and abandoned is an indescribable feeling. For 13 months of my life, I lived that way–unwanted and alone.
Now, I”m 15 and living in south Mississippi with the most loving and caring family. My life is filled with blessed relationships and I have the joy of riding my horse and singing and playing guitar at our church. And, I love God. With the blessing and support of my parents, He has led me back to orphans in China.
As I volunteered with Bring Me Hope this past summer, He led me to one particular orphan–Wayne, a little man from ZhengZhou. Unlike many of the orphans who come to these camps who are never made paper ready for adoption, Wayne is now available for adoption. He”s looking for a forever family just like I was. And, I believe I”ve been called to help him find it.
I will try to make words bring him to life for you (in case this video doesn”t do it). He LOVES to laugh and smile, and he is good at it too! During the camp, he was a social butterfly. I taught little Wayne how to peel off stickers, stick his tongue out, and even say “I love you” in English. He would run off to other people at camp giving out wet kisses and then would run to me with the biggest smile wanting another kiss.
Wayne has overcome so much already. His paperwork lists two special needs–mild retardation and hemiparesis. But, I can tell you from spending those 5 days with him, he is a very smart and capable little boy. His mind was so ready to learn and experience new things. In fact, he was always out smarting me! Wayne could do anything he set his mind to, priding himself on putting his sandals by himself and bathing himself in the shower. On Tuesday morning, we stepped into the elevator to head out for lunch, and he was just barely able to reach the button for the 1st floor. On Thursday, two days later, he was ready for it and managed to get up on those tippy toes and push that button! And he was so proud of him self for doing that! His left side of his body is weaker than the right. But, he can run and walk with only the slightest limp. His left-side weakness didn”t stop him from chasing the other kids around at camp or walking several blocks to a meal.
15 years ago, one family stepped out of their comfort zone to follow God”s call and adopt a baby who needed a family. Now, I”m praying that another family does the same thing for Wayne and that somehow God would use my voice to help make that happen.
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Currently, Wayne is on the shared list, available for adoption for any family using any agency working in China. If you want to learn more about him or how to find him on the list, please email Laura at laura.m.knoll@gmail.com. She will gladly talk to you about Wayne.
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Hi my name is Laura, and I am 15 years old. I live in good ole south Mississippi. I was adopted from China as a 13 month old, and God has allowed me to bloom and grow with my two younger siblings and parents. I accepted his call to go back to China in the summer of 2012 with Bring Me Hope and was able to meet kids and other volunteers who changed my life. I ride horses everyday and sing in our local churches for His glory. God is the only reason I am where I am today, and I am so very thankful!
The family I’m praying for tonight has no idea there is a storm brewing over the horizon. A storm so violent, life will never be the same for them again. They will lose one of their most prized possessions–their child.
How do I pray for a family like that? I almost feel as if I have some inside information on their lives that even they are not aware of today. They will go to bed tonight and without thinking about the tragedy that lies ahead. Who knows what will happen tomorrow as they go about their day? Their child will likely disobey, talk back, whine, or have a stinky attitude that needs to be addressed. There will be sibling rivalry, fighting, and disputes over who gets to ride up front or get their turn next. Will Dad lose his temper and escape to the golf course? Will Mom utter things she swore she’d never say? Maybe.
But mothering a dying child brings a new perspective to everything. I still lose my cool and say things I wish I could take back. I still wonder what in the world I was thinking when I brought home three little girls all the exact same age. But, suddenly, in light of the reality looming on my own horizon, I am compelled to live a life of no regrets.
When we brought Rachel home from China, we simply didn’t know how long we had. We decided ahead of time that what we could not change in quantity, we would make up for in quality. More than anything, we wanted Rachel to know the love of a family, to know that she had a mommy and daddy committed to walking through the dark days with her. And, above everything, we wanted Rachel to know that the love of Jesus was with her, no matter what.
The reality is that parenting a house full of children demands a lot discipline. Rachel had much to learn in order to “unlearn” some of the terrible habits formed inside the walls of an orphanage for 7 years, not to mention the many things she must learn for the very first time. Living within a family unit requires a lot of work, even when learning begins at birth. Our home is certainly not all hugs, kisses, and chocolates, and I’ve yet to be nominated into the Parenting Hall of Fame, but our home feels so much different than ever before through the lens of a new perspective. When you are committed to living a life of no regrets, you make different choices all together!.You choose to see life differently and to live it differently. If that heart never comes and we end up losing our Rachel, I want to remember this time for what it was–precious. I want to embrace every precious moment and look back with no regrets!
We could be the family I wrote about at the beginning of this post, living life completely oblivious to all that lies ahead for myself or for the people I love so much. I have not been promised any special immunity to loss. I am humbled that as I pray for the healing of my own child through a new heart, I will only receive it through another’s indescribable loss. And I wonder, why should God give life to my child and yet take life from another? Kate has offered her own heart for Rachel several times! I tell her that is unacceptable. But, is it more acceptable only when it happens to someone else? This subject makes me terribly uncomfortable, but it haunts me every time my thoughts turn toward the “new” heart we pray for so many times a day.
Tonight, as I pray for a new heart for Rachel, I am strangely not in such a hurry anymore. God has been so merciful and has kept Rachel strong while she waits. “No hurry, God!,” I whisper, “Thanks seems enough for the sweet summer we’ve shared and for the joy that fills our home, simply because Rachel is in it! Let the parents who will soon face the fate none of us want enjoy this summer with their child too! Fill their home with laughter and sweet memories so that when the impending storm blows through, they will look back with no regrets! And if your plan is to take Rachel home instead, Lord, help us to embrace each moment you choose to give, so that our lives will be filled with love and no regrets.
Three years ago, my husband and I stood in front of the orphanage in Beijing, China, and promised we”d be back. We knew it was full of children who were dying, who went to bed hungry every night, and cried for someone, anyone to love them.
We”d always wanted four. It seemed logical: two boys and two girls. Everyone would have a best-friend for life. And Evie would know the bond of a sister from her birth country.
It sounded beautiful. And we honestly thought that was where God was leading us. He had given us Evie. He had shown us over and over that Evie was our daughter. We had prayed for months, “Bring her home. Bring her home. Bring her home.”
And then we landed in Chicago. And discovered Evie”s undisclosed special need– developmental delays. Not only did she have tetrology of fallot and cleft lip and palate, but she could hardly sit, stand, walk, talk, chew, turn the pages of a book. She was completely and utterly shutdown.
We saw hints of this in China. But we assumed she would wake up and start acting like a two year old. But she never did.
So my new life–the one with only 3 three kids–consisted of juggling them so we could go to PT, OT, developmental therapy, and speech multiple times a week. Plus, all her other doctor visits.
I was exhausted. And that fourth child seemed further and further away. And the guilt of ignoring my two homegrown kids weighed heavily on me.
As time passed, I got into the rhythm of my new normal. And now three years later, things seem almost under control.
But, still, we won”t be adopting again.
Evie needs too much. She is too traumatized, too emotionally fragile, too needy. The honest, bitter truth is another special needs adoption would take too much of my time away from her. There is only so much of me to go around.
We”ve prayed about this. We”ve agonized about this. Because we know there are kids who need parents who love them. We know there are kids going to bed tonight with empty bellies, who are cold, alone, and afraid. We know, because that was Evie three short years ago. She was starving–not only for nourishment, but for human touch.
We aren”t done with adoption. We just aren”t adopting.
So now we are praying, “Use us. Use us. Use us.”
And I wonder, how God will use us to care for the orphaned.
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I am a Christ-follower, wife, mother, and writer. I have two wonderful boys and a princess from China. We became a family of five on August 28, 2009. My new book, One Thousand and One Tears
When we began this journey the number 1 question or concern people had were for our bio children. This past weekend proved that adoption is possibly the single BEST thing we could ever do for them!
Our big boy is 13 and spent last week away at a church camp with 5 other of his buddies from school. WE didn’t sign up with them, this was just something that happened. BUT once we found out that all six were going we made sure that they were in the same cabin (already taken care of). I only tell you this because my son was surrounded by his peers.
At the very last minute, I decided to take both Brahm AND Cav, even though we didn’t have room for his wheelchair or stroller.
As we walked into the chapel area (me holding Cav) and waiting to find a seat I noticed a boy walking around us looking at Cav’s amputated legs. Now that isn’t unusual and we are fine with it until they are rude or direspectful.
Suddenly, he looks at me and says, “I know what happened to him, your older son gave a testimony!”
Hmmm, that was interesting I thought.
Finally, after hearing about how incredible camp was for TWO days, I asked my son about this encounter.
My larger than his momma, kind hearted son told me how he felt led to present a testimony about Brahm being born little and how we got Cav and FeiFei.
He didn’t tell me much more than that – cuz you know he is a 13 year old boy.
When I told him about my encounter, I found out that this boy was actually a very small 6th grader. Not as in small due to dwarfism but just a late bloomer.
I stand in awe of my sons obedience of sharing when led
and how God has already used a 13 year old and 4 year old.
Two boys who were separated by an ocean,
became brothers,
looking past differences,
to do God’s work,
and affect the life of another.
I
Mei Mei is doing well. Really well. She is sweet and loving and happy. She is an “easy” child who goes-with-the-flow and fits into our large, crazy family perfectly. She delights in everything life has to offer. Mei Mei has been our easiest child to transition. She LOVES having a family, and she LOVES being loved. She is blossoming before our very eyes.
I find her easy transition ironic because coming to terms with the magnitude of her delays has been challenging.
In the beginning, I felt overwhelmed. I felt overcome with worry. I worried about how to best address her delays, where to take her for testing, how to access services, how to prepare her for school.
I worried about school in general, how she would fit in socially, how an appropriate classroom could be found. I worried about whether she would succeed, graduate, get a job, live independently.
Yes, I am sorry to say my worry was going out a decade and more, even when she had only been home a week!
But then something wonderful happened. God stopped by. At least, His hands and feet did.
My wonderful friend, Cheryl, listened to me as I poured my worries out. Across the phone lines, she was my nonjudgemental sounding board and praying partner. I cried. She cried with me.
Ten minutes after our conversation ended, Cheryl called back. She was bringing us dinner and wouldn’t listen to all my reasons why she shouldn’t.
It was the full meal deal with homemade soup, bread, salad, and brownies. Comfort food.
She spent the afternoon with us, delighting in watching our children interact together. And then she shared a recent sermon she had heard. When we worry, we aren’t trusting God. Instead of giving it all to Him, we try to figure it out all alone–all by ourselves. We feel overwhelmed, because we know we can’t solve our problems.
But God can.
And we have to turn our worry into worship, fully trusting that He is going to lead the way. We can do our part (like making appointments), but then we have to leave the rest to Him.
So true.
So now, when I worry, I turn my worry into worship. Often, I have to do it all over again 5 minutes later–I’m a slow learner! Each time, I feel the burden on my shoulders lift as I praise God, knowing that He has a plan. A great plan so much bigger than I can ever imagine.
A plan I am blessed to be part of.
A plan that brought this angel into our lives.
“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”
Jeremiah 29:11
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Ann Henderson currently finds herself wife to one and mom of ten, including a son in heaven and a daughter waiting in China. Several of her children are adopted
Several months ago, I took Evangeline, our adopted daughter from Ukraine, five years old, diagnosed with Down syndrome, to a developmental pediatrician.
“I heard this doctor is good at what he does, and I want his opinion about Evie’s lack of development since she’s been home from Ukraine,” I affirmed rather loudly to my husband Sergei in an effort to hide that really, I was taking Evangeline to this doctor for a second opinion.
A year ago, Evie was evaluated at the Erikson Institute here in Chicago for Autism. At the time, her main activities included rocking back and forth, sitting on her bed, and looking at a light-up toy. Her eye contact was sporadic at best, and she could not tolerate textured food nor touch (unless it was rough housing). I was certain we would come home with a dual diagnosis of ASD (autism spectrum disorder) and Down syndrome because almost every time I reached out to my beautiful blond little girl, my hand would get slapped.
After several appointments, Erikson concluded that Evangeline was not on the spectrum but probably suffered from the debilitating effects of orphanage life paired with cognitive and developmental delays that can accompany Down syndrome.
But I wanted an answer.
When the report came in the mail, I opened the letter while sitting on the toilet seat behind a locked bathroom door and cried. On some level, I wanted the dual diagnosis because I wanted answers. I wanted to know why Evie ground her teeth constantly, why she sought out dust and dirt to eat but refused real food. I wanted to know why she scratched her sisters when they tried to hug her, and cried at loud noises, and sat off to the side of our lives alone, most days, rocking.
But I did not get a concrete answer. I got a “keep doing what you are doing. Find more therapy opportunities, give her time to bond with your family.” And slowly over the next few weeks, I started to shut down. I found it too painful to try to connect with my daughter. For months, I went through the everyday motions of caring for my family as best I could, all the while holding back from climbing into bed. I no longer attempted to bond with Evie. If she was fine being a part of our family without really being close to me, than maybe, I could live like that too.
And, then I realized something.
I was seeking out the wrong diagnosis for the wrong family member. Sure, it was good to have Evie evaluated a year ago. She certainly had characteristics that could point to ASD. But really, I was the one who needed the most help. I was struggling from post-adoption depression, which could have only been aggravated by a little post-traumatic stress disorder thrown in after Polly’s stroke, diagnosis of Moyamoya, and two brain surgeries. After our time at the Erikson Institute, I quietly unravelled.
I have struggled with depression all my life, but alas, it is kind of like that pesky monthly period for women. Every month I am shocked that my foul mood results with menstruation. And I am 36 years old!
Depression is like that for me, too. It sneaks up on me: a few aches and pains, feeling a little down in the dumps, sleeping poorly. I fight, I do what I absolutely need to for the family and then when I can’t anymore, I get into bed and I don’t get out.
I started to see a doctor and a therapist, but I wasn’t feeling better. I cried out to God to help me, to show me how to trust him and get back on track, but to no avail. I struggled for months, but still, somehow managed to post perky facebook stati often enough so that people outside my direct family wouldn’t suspect a thing.
But I was drowning.
This past fall, God gave me the strength to try again to get help for my depression. I went back to my doctor and let her put me on a higher dosed anti-depressant. I started seeing a different therapist and we clicked right away. I started to wake up in the morning and notice that the sun was shining.
And I saw Evangeline, a little girl considerably changed from a year ago.
Since Evie has been with us (over two years) there have been little breakthroughs here and there in our bonding. I liken them to nicking the surface of a frozen lake with a BB gun.
Now that I am above water again in life, the ice is starting to thaw. I can sit a stare at Evie for a while, marvel at her button nose, appreciate her smell, want to pull her to me.
So, why did I take Evie for the second opinion last week?
Because I wanted to make sure that a dual diagnosis isn’t in the picture for our girl. A lot of her behaviors have fallen away but she has a lot left. And although we are doing much better, I am now struggling with the guilt of that missed time when a shadow of a mother was parenting my daughter.
At the appointment, Evie climbed up into a chair, uninterested in the train set the doctor attempted to entice her with. But she laughed when he tickled her, and followed his finger as he played with her, and looked both the doctor and me in the eye almost the whole time.
I loved the doctor. He was a bit brash and un-orthodox (took a text from his wife during our interview and laughed out loud at what she wrote :). But he cut to the chase with me and it was just what I needed.
“I don’t see any definite red flags regarding a dual diagnosis off the bat, of course, if you’d like, we can do a full evaluation of Evangeline to get more in-depth. But I have to ask, why are you here? You’ve already had your daughter evaluated at Erikson?”
“Because, well”, I took a deep breath. “Because I am afraid I am not doing enough. Our other daughter got sick and ended up needing two brain surgeries six weeks after Evangeline came home from Ukraine and I. . . well, I’ve struggled with depression.” I kind of left my answer there but in my heart I added, I am afraid that I have already failed her.
“Mrs. Marchenko, your family has been through a very difficult time these last few years. I want you to know, you are doing a good job with your kids.”
I had to look away as the tears pooled in my eyes.
“And now, Ms. Evangeline,” the doctor turned to Evie and let me attempt to compose myself.
After the visit to the doctor, I realized I had been looking for two things: 1) the wrong diagnosis, and 2) validation that I am the right mom for my child.
Adoption is beautiful, but it is also very hard.
With God’s help, we all can be the right parents for our children.
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Gillian Marchenko is a writer, speaker, and advocate for individuals with special needs. Her writing has appeared in Mom Sense Magazine, EFCA Today, The Four Cornered Universe, and Chicago Parent. Gillian lives in Chicago with her husband Sergei and their daughters Elaina, Zoya, Polly, and Evangeline. Connect with Gillian on Facebook or Twitter, check out her website at GillianMarchenko.com, or follow her family blog Pocket Lint.
What would you do if your child had no hope to survive?