Life As A House

Anyone seen that movie? It was released in 2001 and the premise of the movie was about rebuilding.

Not just a house but about family, faith, relationships, etc.

I often reflect back on that movie.

Because our son Luke’s story is also a story of rebuilding.

But the rebuild was not all about him. Yes, he needed a rebuild. He needed a family, love, medical care, proper nutrition. All those things are a given.

However it was ME that got the biggest upgrade in the process.

Luke came home at the age of 19 months old. His listed special need was cleft lip and palate. We received updates from the orphanage during our wait which described a little boy who was mostly on target….one that was walking, riding a tricycle… doing all the things that a toddler should be doing.

We arrived in China in May 2007 to meet him and bring him home. And our spirits were crushed when we received him at the Civil Affairs office. This little boy was nothing like what we were told. In fact, he was the absolute opposite. He was a 19 month old who was the size and weight of an infant. He was a child who could not hold up his head, sit up, roll over or walk. He was clearly a child that had MANY MORE special needs then what was listed in his documentation. I mean MANY MANY MORE.

And I wanted to run.

I wanted to bolt out of there because I knew it would be difficult. But even though my HEAD wanted to run, my HEART and God’s leading gave me the courage to stay. But it wasn’t pretty for me. And I have been struggling with Luke’s reality ever since. In September 2009 he was diagnosed with an Intellectual Disability. My stomach turned over and over and I wanted to throw up.

Well… I DID throw up. But not in the office space.

That would have been disgusting.

Life with Luke…well… God is using Luke to be my teacher. My lessons are: realistic expectations, patience, faith, hope, understanding, perspective, diligence, etc.

In other words….for me it’s been a total rebuild.

Not that I didn’t have those things before. I did.

But it wasn’t at the level they needed to be.

It wasn’t at the level God wanted them to be.

So began a complete renovation. And folks, it hasn’t been gentle… at all. It’s been tough. Lots of tools and nails and lumber.

And in a way I guess I was scared with each adoption that I would be changed. I mean… I knew I would be changed in some ways but… it was the big ways I was scared of. I think no matter how much we prepare to adopt a special needs child- or ANY child for that matter- all adoptive parents are all scared of the changes we will experience: to our schedules, our home life, our relationships, our time and energy, our other kids.

But oh how I have come to learn to embrace how these children have changed me. Especially Luke. And I think that you will find it the same way if you commit to one of these beautiful children. Change is inevitable. How beautiful it is to have the change occur because you have loved and embraced a child with special needs.

-Nicole from

Whatever Wednesday

Each Wednesday we post links from the previous week that touch on special needs adoption. Our hope is that these small snapshots provide you with a glimpse of life after adopting through China’s waiting child program… both the long-term blessings and the challenges that come with parenting a child with special needs. We also hope to raise awareness about a variety of special needs.

HIV+ Adoption: Filling the Roomadoptive momma (Ethiopia) Lisa at the group adoption blog Grown In My Heart… a short question and answer session with Lisa, who is not only an adoptive mom, but also a care coordinator for From HIV to Home

Racist me, against my childadult adoptee (Korea) and adoptive momma (China) Raina at Faiths & Illusions… on decisions about school grade levels and older child adoption

Mirrors… adoptive momma (China) Jean at There’s No Place Like Home… a discovery about orphanage life after talking with her daughter, who was adopted at an older age

She got her Birthday Wish!!!adoptive momma (China) Karen at Always In My Heart… home from the hospital on her birthday

The Long and Winding Road, Day 12adoptive momma (China) Robin at Dreaming of Tea for Two… an update after their most recent visit to see the neurologist

is this permanent?adoptive momma (China) mama d at the life that is waiting… a trip to the dentist offers an important opportunity for a mom who adopted her son at an older age

Homemade Sensory Diet for Summeradoptive momma (foster care) Hartley at Hartley’s Life With Three Boys… inexpensive ideas for sensory activities during the summer

Deaf, Not Dumbadoptive momma (China) Cheri at Infinite Love… new Phonak hearing aids and thoughts about how others treat those who are deaf

Jacinda’s Appointments Todayadoptive momma (China) Sherry at Our Adoption Journey… a day at CHKD to see Jacinda’s craniofacial team of doctors

Special Needs Adoptionexecutive director Amy Eldridge at Love Without Boundaries… information about their first video about a specific special need (this one is about thalassemia; the next one will be about albinism)

The One Thing Rory Doesn’t Have That Her Siblings Do, Still.


That’s not entirely accurate–Rory has friends at school, and she has plenty of kids her age who come over often and romp through our house for various family events and family playdates–but she has no friends of her very own, who would invite her and only her over for a playdate or…the ultimate…a birthday party.

Sam goes to birthday parties (he’s 8).

Lily goes to birthday parties (she’s 5).

Wyatt goes to birthday parties, and this is the unkindest cut of all. He is 4, and Rory is 4.

But the only birthday party she’s been to was one that Lily and Wyatt went to also. She has never been the one to come home with her bagful of candy and assorted themed toys and decide whether or not to share. She has never been the one dropped off with a big, glorious present, chosen by her, to a strange house filled with balloons and a pinata. And oh, she wants those things.

Barring that, she wants a playdate. Not a playdate at our house–no, she wants to be dropped off for a playdate all by herself. At Alex’s, or Miles’, or Ann’s or ANYWHERE. I would worry–have worried, in advance–that she would be afraid on some deep level that we wouldn’t come back but we’re almost at the year mark now, and apparently NOT. Last week she cried for 20 full minutes in the car because Lily had a playdate, and Wyatt had a birthday party and she had…nothing. (Not right then, or I would have taken her somewhere fun–these were distant plans that she just couldn’t compete with.)

And she is so sad. She gives us, instead, a regular litany of her friends in China–friends we don’t have, friends that are not ours, friends that would only invite us over if she asked them to: Bethany, Logan, Mitchell, ‘Cilla (Rory was raised at Hidden Treasures, an American-run foster home in Fuzhou, Fujian). But it doesn’t help, I know.

Part of me says, well, most 4-year-olds don’t get dropped off at friend’s houses. It only happens for Wyatt with one particular friend because he is only a week older than one of our neighbors and family friends’ son, and we do a lot of trading off of the boys–but adding Rory to that mix isn’t great, and wouldn’t count anyway. We don’t do the kind where Mom comes to hang out too unless all the kids are there. And we spend most of our time with families we’ve known since Sam was small–I’m not out there making new friends with the parents of kids in her class who don’t already belong to us in some other way. Those are all the normal reasons.

But I suspect there’s another reason, one that lies within her “other”-ness. I think people are hesitant–fearful that they might not understand her, or she might have issues, or a tantrum, or just be unpredictable in some way. And there are plenty of other little girls or boys to invite–”normal” ones, with no difficult speech or history. White ones, too, although I think that’s only a tiny part of the equation. I get that, I do. I think I might feel that way myself. Why not invite over an easier kid? Why not push your kid in a simpler direction–oh, yes, Rory would be nice, but what about so and so, or so and so? Rory’s family is weird, too–so many of them, and the mom works, and the older kid goes to that private school, and hey, why not cultivate a different relationship? Some family more like us.

Maybe I’m overly sensitive, but I don’t think so. I’ve avoided friendships myself on weaker grounds. They’re four–they’ll push us in the direction they really want to go in soon enough. Why not keep things under control as long as you can?

Yes, I could make some calls–approach another mother, explain. I could invite a different kid over and hope the parent would reciprocate for Rory, and not for the others. I could try to fix this, and maybe I could put a band-aid over it for the time being…and that would help for now. But really, things are still new. There’s lots more change ahead in her classroom. New kids will come, Lily will be in elementary school next year and Rory, still in the preschool classroom she’s been sharing with her sister, will be four months older and clearer and more ordinary in everyone’s eyes, and even one of “the big kids.” The other kids like her at school. She gets along well when there are kids here at home–better every day. There was a time when half an hour of different voices and chaos would overwhelm her, and that’s gone. She’s still changing; we’re still changing. I think I’ll let this grow away on its own. For now.

Cross-posted on

Parenting Special Needs – Real Life

Recently our family had an experience that will forever be etched in our lives. It involves an adult with special needs…..and since we who parent children with special needs are raising children who will grow into adults with special needs, I feel strongly that this must be shared here. I don’t feel I can share it on my blog, but wish I could but there are too many people who know all the parties involved and the last thing I would want to do is hurt anyone. But I am sharing some very honest stuff about our lives here in hopes that it will encourage all of us who parent special needs kids. It is our story, so I am making myself and my family very vulnerable.

First a little background. My husband, Dw, and I have been married for almost 32 years. We are very, very, very {did I say “very”?} happily married. We have a blast together. We are soul mates. We have ten children. Three have grown and left the nest. Seven remain at home. The seven at home range in ages 3 to 16. We are abundantly blessed.

Dw was raised in Western New York, the youngest of four boys. My husband Dw is 55 years old. His oldest brother, Mark, is 70 years old and mentally handicapped. Let’s just say that from the time Dw and I were first married we planned that one day, Mark would come to live with us. It just seemed natural. We are family and we care for each other. Period.

We lived for the first 13 years in Western New York so we saw Mark regularly. If we went home to Dw’s parents we always invited Mark along to join us in whatever we did {things like go to the drive-in, get ice cream, etc.}. We would call and talk to him on the phone. We loved him greatly. We talked to Mark over the years….”when something happens to Mom and Dad you can come to live with us”. He was always eager at the thought.

Eventually we moved out of state and years passed. My in-laws got older and so when we were looking for a home we would always plan which room Mark would have one day. My father-in-love died 2 years ago at the age of 95, he was a very gentle, quiet man. This past January 2nd, on the anniversary of my father-in-love’s death, my mother-in-law had congestive heart failure and suddenly the reality of what we had been planning almost our entire last 32 years happened. We talked to Mark on the phone, yes, the time was right….he wanted to come live with us.

Dw flew to Western New York within days and before long he arrived home with our long-awaited Mark. Their flight arrived late at night and so I was the only one up waiting when they got home. When I heard them on the front porch I threw open the door and was squealing and jumping up and down, “You’re here, Mark – you’re finally here! Welcome home!” The kids were just as excited as we were. We have been preparing all of them that one day Mark would live with us.

Now the reality: Obviously we are a big family. Everyone has chores to do. Everyone has to pitch in whether you are three years old or sixteen – you pitch in. Even Elijah, at 3 years old, can get himself something for breakfast {as I keep an eye out for him}. He can fold clothes. He can put things away. He attempts to sweep. Chores the kids do: clean bathrooms, vacuum, sweep, do dishes {we don’t currently have a dishwasher}, put dishes away, etc. Everyone helps. Everyone. We make it fun when we work alongside each other and before long the house is pretty spiffy looking! It doesn’t last long – but those few moments of cleanliness are so appreciated by this mama! Our kids with special needs work right along with everyone else.

So the first morning after Mark arrived he came down and sat at the breakfast table and barked, “Get my breakfast!” I thought, “Uh-oh, this might not be the picnic I was envisioning.” Ugh We knew that my mil had given Mark everything he had ever wanted. She had waited on him hand and foot. If his bed wasn’t made by her in the morning he would refuse to go to bed at night. She was 93 years old and climbing the steep stairs in that old farmhouse to make Mark’s bed so he would happily go to bed at night. We had foolishly believed that when Mark came to live with us he would adjust and settle in. Not so. He began very quickly to make life very miserable. He had been waited on his entire life and he expected to be until he died.

I quickly realized what a monster had been created by my indulging mother-in-law. Surprisingly, she had not done this with her other three boys. She had actually largely ignored them. But Mark was the “special” one and I’m guessing she felt that since he was mentally handicapped life “owed” him an easy ride.

Mark soon wanted to go home. We explained that he would not be going “home” cause there is nothing to go home to, but that he would be going home to a group home or an institution. He wouldn’t believe us. {My mother-in-law is in a neighboring town about ½ hour away in a nursing home.} As the days passed, Mark would argue and complain {loudly} about anything that didn’t go his way. He would lie often. It was exhausting. I told Dw that at 51 and 55, “It would be easier to adopt quintuplets then to care for Mark!” {I wasn’t kidding.}

The whole point of this post is to challenge anyone with special needs kids not to allow them to believe that because they have special needs they are “owed” a life free from responsibilities or accountability. My intent is not to bash my mother-in-law for how she raised her son, but to be honest about the consequences of our parenting – they are lifelong!

We are convinced that had my mother-in-law held Mark accountable and required him to have chores {even chores he didn’t think were fun} she would have been better preparing him for life without her. If she had held him responsible for his lying she would have been making him a responsible adult. As it was Mark was allowed for 70 years to believe that he was at the center of the universe. What a shocking blow for him to find out otherwise and what a shock it will be when he goes to live in an institution or group home.

Mark eventually got aggressive and almost what would be considered violent toward our little ones – I was completely shocked!! A 70 year old man, mentally handicapped or not, knows all about hurting others and that he would purposely inflict pain on a little one – deplorable!

Dw came home from work and said, “That’s it. He’s gone.” I was thankful and relieved. It took awhile to get all the details worked out and over the ensuing weeks there were two times where I had to tell Mark that if he didn’t knock it off I was going to call the police. It has been a very difficult time, needless to say.

My husband, Dw, left for Africa in the wee hours of this past Wednesday morning. He took Emma {16} and Graham {15} with him. Mark was scheduled to leave on Friday. That left just all day Wednesday and all day Thursday with me alone with Mark and the little ones. It was two of the longest days of my life. He, again, got violent toward one of our little ones – because they sat on the end of “his” couch while he was watching TV. I had to keep them away from him – completely. He was belligerent.

Yesterday morning Mark left for good. Dw and I both have had to struggle with what all of this meant. We had dreamed of this for almost 30 years – but often dreams aren’t reality – in fact they can be nightmares!! We have had long talks. I had to realize just how frustrated I have been at my mother-in-law for her parenting choices. It has been a time of soul-searching and praying that I can be a parent who raises responsible adults that when presented with circumstances that don’t go their way, they respond with grace, integrity, humility and thankfulness. I pray that our painful experience will allow all who read this to look at their parenting choices as well.

Linny @ A Place Called Simplicity

next shared list

A new shared listing is expected on May 19, 2010. Wonderful news for families waiting to be matched!

If you have been matched off the shared list recently, feel free to share in the comments and I’ll add a link to your blog… we’d all love to hear your news :)

Congratulations to the new families!
Amy at A Red Thread Connection

Whatever Wednesday

Each Wednesday we post links from the previous week that touch on special needs adoption. Our hope is that these small snapshots provide you with a glimpse of life after adopting through China’s waiting child program… both the long-term blessings and the challenges that come with parenting a child with special needs. We also hope to raise awareness about a variety of special needs.

Wish I Had More To Updateadoptive momma (China) Karen at Always In My Heart… an update on her daughter Cassandra, who continues to heal from an infection

So Blessed! adoptive momma (China) Kim at Our Journey to Addison Hope… about her biological son’s special need, which is osteogenesis imperfecta, or brittle bone disease

adoptive momma (China) Sarah Kate at The Shoe Princess… about her daughter’s recent IEP meeting

I Don’t WANNA Have Special Needs!
adoptive momma (China) Holly at A Purpose Driven Life!… about her son’s recent expressions of frustration about his limb difference

Devastatedsweet Nikki at Ladybug Makes Four… this family needs us to cover them in prayer, as they just discovered that the daughter they were waiting to adopt from Nanning passed away

Sensory Detectiveadoptive momma (through foster care) Hartley at Hartley’s Life With Three Boys… on life as a sensory detective, struggling to determine the difference between tantrums and meltdowns

A new look on life

Well, the most recent eye exam didn’t give quite the results we were hoping for.

At the last visit three weeks ago Dr. F was encouraged by the reduction in pressure in our little one’s eye and hoped that we’d be able to avoid further surgery for months, possibly even years. But the pressure has remained the same since then and so our next visit in three more weeks is a combo eye exam/pre-op. At that time Dr. F will determine if the goniotomy was successful enough to try to open the second half of the drain or if it is time to go ahead with the Baerveldt valve implant. If I’m going to be perfectly honest, that news was disappointing.

But there was a really good part to visiting Duke again. Cause these precious little Julbo frames were waiting for us when we got there.

Our little girl has a new look on life. Her strong eye went from 20/60 to 20/40 and her helper eye went from 20/400 to somewhere between 20/200 and 20/125.

And not only does Dr. F (and therefore we) know she is seeing better, more importantly, it appears she knows she’s seeing better.

Cause she grinned as soon as they were on her face. Then she spent a little extra time studying mine. She never once tried to take them off all day. And when she reappeared from her bedroom after her nap, she was sporting her little pink frames.

Something tells me that her little grin means she thinks she looks as pretty as we do.

And you know what I love about my kids? Both of her siblings were supportive of her new look. Of course I wasn’t really surprised about that. These days, about 90% of the time, that’s the way these guys are. Loving life. Laughing. Smiling. Together.

Now, there is the news that we will start patching her strong eye so that the brain is forced to accept information from the helper eye. Three hours a day. Seven days a week. For the next two years.

Can’t say that I’m looking forward to it. Course from what I know about this little girl, she’ll roll with the punches. It’s what she seems to do best. And when she gets a questioning look from someone in public about her patch, she’s got her posse by her side.

When you got love like this on your right and left, who needs to worry about what others might think…

**reworked from a post on my personal blog from last week. It’s been a little hectic around here as late.**

Mean Mom

I have two daughters who were born just over a year apart. They are both smart, funny and beautiful. They love clothes and doing hair and shopping. One is dramatic and fiery and active. The other is practical and sensitive and still. One I have known her entire life. The other, I met in June of 2009.

Both my girls are creative and artistic. Both love dance and music and self expression. One of them dreams of flowers and meadows and princess dances.

The other dreams of Mean Mom.

Mean Mom looks like me. She talks like me. Her eyes and hair and body are mine. But Mean Mom is not me. My daughter always makes this very clear when she tells me about the dream.

In the dream, Mean Mom does one of three things: She leaves my daughter at the store or at church or in the park, she refuses to feed her when she is hungry, she laughs when my daughter cries.

Mean Mom is mean. Pure and simple.

For months after the first Mean Mom dream, my daughter eyed me with wary consternation. “How do I know, Mommy, if I am dreaming or awake?” she’d ask, and I’d feel my heart shiver just a little.

“What do you mean?” I’d respond.

“How do I know you are Nice Mommy and not Mean Mom?” She’d persist, and I’d tell her, once again, that dreams are never real, and that Mean Mom doesn’t exist. Then I’d renew my efforts to bond with her. I’d take her to the park and church and the store, and I’d always bring her home. When she was hurt, I’d cuddle her close and give her band aids and kisses. When she was hungry, I would bring her to the kitchen and let her help me fix a snack.

There were times when I doubted the effectiveness of my laid-back approach to my daughter’s dream. It was such a weird and bizarre thing, this manifestation, this haunting evil twin of mine. I had thoughts of doctors and therapies and years of working to loosen Mean Mom’s hold, but instinct told me love and persistence would win the day. So, I kept on the way I was going, reassuring my daughter until the dream faded and Mean Mom was nothing but a memory.

I have two daughters. One has suffered loss and trauma and betrayal. Cheeky’s past is so full of all those things that it seems the dream reflects her fears, her losses and all that she is afraid of losing again.

Yet, the dream is not Cheeky’s.

It is Sassy’s.

From the time Sassy was three until she was nearly five, Mean Mom was almost as real to her as I was. When we began the adoption process, I read books on bonding and attachment, and it occurred to me that Sassy exhibited many of the signs of a traumatized child. She did have a difficult birth experience. As I lay bleeding out, she was whisked to the NICU where she was poked and prodded. It was twelve hours before I was stable enough to see her and touch her and speak her name. Sometimes, I wonder if those hours cemented a thought in her brain, a chemical memory, perhaps, of betrayal. One way or another, I have always felt that I had to work harder to connect with my fiery girl. She loves passionately, but she has such a hard time being vulnerable.

Does that hark back to being ‘abandoned’ at birth, or is it simply a product of her personality and temperament?

I will never know, but the juxtaposition of my daughters’ dreams is interesting to me. Cheeky was abandoned by the world’s standards. It would seem that she should be the one dreaming of a mean mother who leaves her behind and laughs when she cries. Instead, she dreams of dancing and flowers and all things light and wonderful. Sassy, who was simply whisked away to be cared for by competent and caring hospital staff, is the one who suffered through months of thinking an evil mom lurked somewhere in the shadows waiting to snatch her away.

Why is that?

That’s the question I’ve been asking myself often lately.

But the more I ask it, the more I realize that it doesn’t matter.

Mean Mom was here, and now she is gone – a blip on the radar, an odd chapter in my daughter’s life.

A battle we fought together and won.

And, I guess that is what parenting is really all about. Whether we adopt our children or birth them, we must be committed to fighting for them and with them, no matter the struggles, no matter the reasons for those struggles. There should be no thought that what our child brings to us is a product of who she once was or how she once lived and that her troubles are, therefore, not our responsibility. There must simply be acceptance and the understanding that her past is our past whether we lived it together or not. Only in embracing that truth can we discover the miracle of love – that it isn’t built on one defining moment, but on millions of mundane ones piled one upon the other until we are left breathless from the sheer wonder of it.

Happy Mother’s Day, friends. May you find joy in the good times and peace in the trials, and may every mundane moment with your children be a miracle.

The Best Stuff’s Never Planned

The family photo shoot was certainly planned. The outfits, the hairstyles, the location, the photographer, all planned.

The head bonk, however, was not. And I love it.

The day before we left for China, five year-old Rose flew by herself to Idaho to stay with her grandparents. I snapped this picture at the airport, blinking back tears. My baby wouldn’t be the baby anymore. The next time I saw her, things would be different. Hopefully better, but different.

What if her new sister had issues that would now take the lion share of my time? What if I’d tempted fate and messed up the good thing we had going? Would this changing-point-in-our-lives moment be something Rose would thank me for someday or need to hash out with her therapist?

It’s been over three years now. Almost four. And the joy I see pass between these two little girls, even when they’re hitting heads (literally and figuratively), warms me through and through. Cholita, our baby number 4, was planned. Ditto with the trip to China. Finding Rose a best friend was unplanned. And I love it.

Artyom and Chrissie

For almost a whole month, I’ve been thinking about 7 year old Artyom who was sent back to Moscow on a one way, nonstop flight with a note pinned to his coat that explained that his adoptive mom no longer wished to parent him. I’m not going to go into how I feel about what she did because I’ve already hashed all of that out on my blog but it’s pretty obvious to most that this child had problems that his family were not equipped to deal with. If there’s a silver lining to his story, it’s that his next (and hopefully last) family will be MUCH more aware of his needs and better able to dedicate the patience, time, and resources to give him what he needs to thrive.

All children deserve to thrive.

Chrissie is trying very hard to thrive right now. She’s hooked up to a ventilator in a hospital in San Antonio with her mother near her side. Right where her mommy’s been since April 19th when Chrissie first arrived at the hospital to fix a heart defect that her new family knew was “incompatible with life.” They had all of the information they needed and they made the choice knowing full well that she’d need serious help to survive.

I’m almost ashamed to say that I’m not sure I could have made that choice. I know they didn’t do it to earn the admiration of people like me but they sure do have my admiration and respect anyway.

I’m thankful that there are people like Chrissie’s parents who will do this in spite of all of the emotional risks and I’m thankful that Chrissie orphanage in Serbia didn’t downplay or minimize (or completely withhold) the severity of her heart condition. If they had, an unsuspecting family might have easily fallen in love with her sweet smile and brought her home. But other than love, would they have been able to give her what she needed? Would they have been able to dedicate the physical, emotional, financial and medical resources necessary to give her the best hope of a full life? A life beyond her preschool years?

Could you do it? Could you adopt a child like Chrissie?

I couldn’t.

I know my limitations. If I’d been handed a child like Chrissie, I would have done my best and it would have been a fantastic effort and I’m pretty sure that nobody would find any fault with it but I’m almost certain that it wouldn’t have been as good as the mom and dad she has right now.


Because this family knew what was coming and they were prepared for it while most of us would only be able to respond to it.

Proactive vs reactive.

Two children.

Two countries.

Two adoptive families.

Two totally different outcomes.

Hopefully, they’ll both have happy endings.