"Struggling" to Visit Northern Michigan

The kids and I spent a great few days in Michigan last week. Part of the time we went to Grand Rapids to visit family, and during that visit spent some time at the Frederick Meijer Gardens. This is a great family spot to visit and is completely wheelchair accessible --even all of "Tree House Village"!

Something funny happened on the way out of the Gardens, though, and it reminded me how so many people view our family. A very well meaning man walked up to us. He had his infant son with him and he approached me as I was placing Nappy's chair in the back of the van.

"Excuse me," he said, hesitantly, obviously nervous, "I just wanted... to take a minute and talk to you. God told me to."

I was a bit perplexed by his statement, because I communicate with God fairly frequently, and God hadn't mentioned word one about this guy to me. I pointed out to God that it would be nice if He would let me in on these things. It's like I'm always last to know. I smiled at the guy, thinking that he might be planning to ask me about adoption. At least I was hoping he was ,because I'm always prepared to give my "Millions of Children Need Families, Yes That Would be Great if You Adopt" Sermon.

"I wanted to ask you about your daughter.... I.... is there something I can pray for? What's her ailment?"

Ailment? I thought. Was she coughing and I didn't notice? Oh no, she was sick again and I just didn't pick up on it because she never acts sick! How embarrassing!

"Is she in pain?" He continued.

"Pain?" I asked. "No, she's not in pain."

Then I realized that this was about the wheelchair, so I responded, hoping to stop the questions. I toyed with claiming she had Fetal Alcohol Syndrome and that I'm still despondent over my poor choices during pregnancy, but thought better about that.

"She just has arthrogryposis and can't walk."

"Is she terminal?"

Aren't we all? I thought, but decided not to say so I wouldn't burst his bubble. Maybe that hadn't occurred to him yet.

"Uhhh... no more than anyone else."

"Well, I just really feel like God wanted me to talk to you and let you know that she can have his blessings and healing and that she is very valuable to him. And I would really like to pray for her."

So, figuring that we can always use more prayer, I told him he was welcome to offer to pray for her and asked Nappy if he could. She looked at him, stuck her lip out and said, "NO!" (I don't think that this guy really knew what parts of her need prayer.)

So, he talked to her instead, and said, "Well, I just want you to know that God loves you. I saw you struggling this morning and I know that sometimes life can seem really hard...."

Struggling? Life can seem hard? What in the world was this guy talking about? She wasn't struggling (okay maybe a bit because we kept dumping our coats and stuff on the back of her wheelchair and making it really heavy for her to wheel, but we also pushed her alot too!).

It struck me as so odd. How could this man possibly see struggling when all I see is victory? Here is a little girl who only a year ago spent most of her day sitting and watching other kids play, unable to get herself around much, and who had absolutely no future. Now she's wheeling everywhere, trying to walk, climbing all over the place and enjoying her ability to explore the world! Here she is talking up a storm, learning her letters and counting, making jokes, and constantly pretending to be a princess or a puppy or even a duck! How could anyone look at such an animated face and think she was "struggling?"

The next day I told my friend, who has happened to live her entire life without legs, that maybe God did tell that guy to come up to us. Maybe I dropped the ball because I was supposed to explain to him that life with a disability isn't a struggle, but it's actually a celebration of one victory after another as you see God redeeming things you never thought could be redeemed and you get pictures of beauty that most of humanity will never glimpse.

She assured me that there was probably nothing I could've said that would have gotten through to that guy. As she pointed out, the burden was his, not God's. So, I guess a gracious quiet was the best response.

"Sometimes rather than healing you, God chooses to inhabit you," She said. Beautiful truth from a truly beautiful person in whom the spirit of God obviously dwells.

You have to really desire to understand the heart of God to understand which is so much much better.

"Wah wah wah wah wahwah wah"

Sometimes I know that I appear to my children like the teacher in the old Peanut's Gang Cartoons.

"Mom, what does flabbergasted mean?"

"Well, honey, it means surprised, but so much more than that wah wah wah wah wah wah wah..."

"Yes mom, I understand mom...."

I have come to believe that there's good reason for this. Since I am both mom and teacher, my kids are constantly learning, right? Case in point:

We were driving down the road, listening to my favorite Christian radio station, when my 8 year old asked a question.

"Mom, what's a prophet?"

"Well," I replied with a scholarly voice, "a prophet is someone God speaks through. You know, of course, that the Bible was written, in part by prophets...wah wah wah wah ....prophecy today...wah wah wah wah wah.... false prophets....wah wah wah wah... lots of debate about that....wah wah wah.... but I think that.... wah wah wah wah wah .... Elijah... wah wah wah... minor prophets....wah wah wah wah wah wah and..."

"Uh mom, I guess I get all that, but then I'm confused about one thing. If that's a prophet then what's a 'non-prophet'?"

Ahh.... pledge drives on Christian radio.

Good Food, Great Entertainment and a Bit of Mystery: Christmas Dinner at the Old Folks Home

For Christmas, our family went to visit my parents. My parents live in an extremely nice retirement community that consists of a section of villas (where they live), a clubhouse, and an additional building that's both independent living and a nursing home. The community boarders on a large state park.

All those factors combined make visiting Grandma and Grandpa a true adventure to my children, and this time it was even more so.

On Christmas eve, we were invited to a Christmas Brunch at the Independent Living Center. Since it was a potluck buffet brunch, my youngest son (who must have a hollow leg he eats so much) was especially excited. The more variety the better, in his opinion.

Our older son, however, is a different story.

First, of all, he's 11. That, in itself, says a lot. I've figured out that having an 11-year-old boy is probably the number one source of gray hair in our nation. Monday morning proved it.

The brunch was held in a beautiful dining room in the center. After navigating our youngest daughter through the sea of elderly people -- remember, she's driving her own wheelchair -- we arrived at our table. Tables had been reserved according to the number of guests people were bringing. Since there were 11 of us, there were two tables reserved for our group. We placed the three big kids at one table, and the rest of us sat at the other (yes, that was intentional on our part).

When it was time to start, the lady leading the brunch announced that the tables would be called by number. My three big kids looked for the number at their table.

Total terror filled their eyes (especially my youngest son). There was no number on the table. Certainly no number meant no brunch! Of course, they were going to the buffet when our table number was called, but that wasn't apparent to them.

There was no need for son #2 to fear, though, because the 11-year-old instantly slipped into his alter ego: Lawyer/social advocate.

"Hey! We don't have a number!," His voice rising above the din, "That's not fair! What are we supposed to do?!!!"

That fire was quickly put out by my husband. However, the family lawyer soon found another reason to raise the alarm. He has a severe food allergy to tree nuts and shell fish, and nothing on the table had ingredients listed.

"I can't eat any of this food because I don't know the ingredients!"

"I think you can safely assume there's no shellfish in any of it, " I replied, noting our current geographical location (a good thousand miles from the sea).

"Yes, but I don't know about nuts." He replied.

"Well, I know alot about nuts." I responded, but it went over his head.

After that, things went pretty swimmingly. Until the first nose bleed.

"Where's the bathroom?" the 11-year-old asked. So, Dad and he went off to find a bathroom. About 10 minutes later, when Dad's food had pretty much hit room temperature, they returned.

"We don't have any Vaseline for my nose" the 11-year-old told me (mom hint: Vaseline works great to prevent a nosebleed from returning).

"So," my husband said, " We'll be headed out again, I'm sure."

"Hey! What's this?" Asked the 11-year-old as he picked up a packet of papers left by his plate.

"We're going to have a carol sing." I replied, with a smile that I hoped would induce some enthusiasm.

His eyes widened as he flipped through the packet.

"Mom, there are 30 songs in here!"

"I'm sure we won't sing them all." I responded.

Just at that moment, the song leader got up.

"We'll start with number 1 and then work out way thru. We won't sing all the verses of all the songs, just verse 1 and 2. And, kids, when we get to "Up on the House Top" I expect you all to come up and lead the audience in the motions."

Nosebleed number two.

As they headed out, I heard the 11-year-old whisper to his dad.

"Can we leave before #12?"

"What's #12?"

"Up on the House Top."

This trip took a while because they also looked for the nurse's station to see if she had any Vaseline. They returned with a tube of lip therapy which my son claimed he couldn't use because he didn't have a Q-tip. The excitement just doesn't end.

Well, we managed to hide the 11-year old during Up on the Housetop, and our younger son and oldest daughter did enjoy leading the audience in the motions -- which was pretty good considering that they didn't know the motions. Our oldest daughter also played "The First Noel"on the piano for the crowd, making me a pretty proud mom.

The excitement came to a head, though, when we got back to my parents place. A body had been found in a field near their home! A 91-year-old man, after presumably arguing with his fiancee, took a walk in the state park. Taking a short cut home he must have fallen or something and passed away in the field. The mystery has yet to be completely solved, but the events certainly support the idea that weddings sure can be stressful.


Several weeks ago my husband came home from work and told us about a patron of his that shared his secret for a great Christmas dinner.

"I have Christmas dinner at the hospital -- it's great food at a great price!"

And, I have to say, we did have a great Christmas brunch at the old folks home. I enjoyed the shellfish-free food, learned that there are some kind of nationally known motions to "Up on the Housetop", learned the 2nd and 3rd verses to "Up on the Housetop" (although I wonder how Little Nell can have a good Christmas when her brother, Will, is getting a ball and whip), and we probably provided entertainment for a large number of people.

And, once again, a trip to Grandma and Grandpa's House appears to be an adventure!

Deb Fixes the Myths of Therapy

Our oldest daughter came to our home, despite multiple handicaps and a life spent in an orphanage, completely able to keep up with her peers. She could dress herself, feed herself and even handle the bathroom on her own.

So, of course, nearly every medical professional, teacher and child "specialist" we met with encouraged us to place her in therapy.

"You know, she would be able to have free occupational therapy through the state -- part of the early intervention program. Your public schools would have to pay for it." One well meaning teacher told me.



"Why?" I asked. "She can do everything at an age appropriate level."

"Yes, but, it's free and would help."

Now, I should've asked, "Help with what?" but I just let it drop.

Another problem that occurred to people was the fact that our daughter spoke "Russian". That's in quotes because she actually spoke Ukrainian, which is a different language than Russian, but I could never convince people of that.

So, people kept telling me (despite the fact that she was picking up English so fast she was speaking in full sentences within a couple months of coming home) that she needed speech therapy. Of course, our insurance didn't agree, so they weren't willing to pay for it. I ended up calling our local public school to see what speech services were available for 3 year olds.

"Oh yes," the school system lady told me, "she certainly needs therapy! You need to enroll her in our preschool and then she'll get the services she needs."

"What services?" I asked.

"She can be a part of our class which has a focus on language development."

"So, all the kids have language problems?"

"Most of them."

Okay, so to learn English, I am supposed to take her away from her well-spoken older brothers and immerse her in a classroom full of kids who have language problems? Oh, that's logical!

Incidentally, 5 years later, our daughter took the Stanford Achievement test and tested at the 95th percentile and higher in her language abilities. Drat! I wish I had taken them up on that "speech therapy"! Maybe she'd actually be equal with her peer group rather than ahead of most of them.

Thankfully, our next daughter avoided all that junk, probably because her differences are not very noticeable to onlookers since it is just some missing hand and arm parts.

But our youngest, the one that can't walk, she's gotten the fullest treatment. Not just therapy, not just intervention, but a life that should be structured around therapy: therapeutic preschool.


Now, apparently, our daughter "should've" been fitted for her power chair at 18 months. She wasn't adopted until she was nearly three (what can I say, we're slackers), so she was already "behind schedule". So, to really help her catch up here was the plan:

1) Have her fitted for a 300 lb power chair that she can use no where except therapeutic preschool
2) Enroll her in therapeutic preschool so she can use the chair


Now, I love the idea of taking a child out of an institution, putting her into a family, and then placing her in an institution! That's just great for promoting healthy attachment!


Not all therapy is a hoax, of course, but I am just amazed at how quickly these professionals are willing to categorize my children. Our middle daughter provides another example. When she was originally assessed after her adoption, upon looking at her file, the first thing the occupational therapist said was,

"Well, she's from Kazakhstan so were definitely looking at fetal alcohol syndrome."

Not, "there's a chance for fetal alcohol syndrome" or "she's at risk for fetal alcohol syndrome" but, "she's got it". How's that for racial profiling?!

By the way, she doesn't have Fetal Alcohol Syndrome. Perhaps her birth family, who were Kazak, not Russian, were Muslim and didn't drink? I don't know, but I do know that I could've started years of therapy for a disability she didn't have because someone made a judgement about her based upon where she was born!

Intervention, where needed, is a good thing. Intervention, when inappropriately applied, robs my children of time they should be spending having a childhood.

Are my husband and I the only people that are really looking out for our girls?

Of course, any intervention we seek for them doesn't line our pockets or give us job security... so perhaps that's why we question more.

The Space Pen of Occupational Therapy

Tonight we took a trip to the zoo for the annual "Festival of Lights". We had a good time (we got there before the crowds started showing up), and our youngest really enjoyed the elephants, as evidenced by her non-stop chatter about them for the rest of the evening.

But, here's what is amazing to me: she enjoyed the zoo without use of a power wheelchair.

According to the therapist fitting her for the powerchair, the zoo is one of those places that she just can't keep up with other kids. Now, grant it, the therapist is right that she couldn't maneuver the manual chair around the zoo. However, as I pointed out to her in our conversation, I don't want our 3 year old running around the zoo on her own.

Well, last night proved it! I really wonder if this lady's ever tried keeping track of 5 kids in a huge crowd? I don't want more independence at a place like the zoo, I want the opposite! Has she even considered why wagons are so highly popular among mothers of preschoolers? In order not to lose them, I need 2 of the 5 confined!

Since both my husband and I were there last night, we didn't take the wagon, just our daughter's wheelchair. Our 5-year-old walked and held someone's hand. The three big kids just walked. I did wonder what some medical people would think about our oldest daughter, with the prosthetic leg, walking around the hilly zoo -- even though she despises the thought of using a wheelchair.

Halfway through our evening, I burst out laughing.

"Even besides the fact that we'd lose her if she was driving an electric chair," I told my husband, "She could never do one here!"

"I know," he replied, "too many injuries!"

The previous night, during our Sharon Woods fiasco, we visited the nature center. Using her manual chair, our daughter managed to bruise the legs of at least 10 or 12 people by bumping into them. Of course, in the manual chair, I can just reach out and stop her, as can the person being bumped. In the power chair, if you don't have access to the stop button, you're not stopping her.

Also, the entire evening would have been longer with the wheelchair, no less. In stead of walking out the front door, flipping the wheelchair into the hatch of the van, and driving off, we would have had to:

1) Get all the kids in the van
2) Carry our daughter out to the van
3) Walk down the rest of the driveway
4) Undo the combination chain lock on the driveway gate (it wraps around the bottom of the gate to hold it shut so the dogs can't squeeze out)
5) Open the garage door
6) Turn on, unplug the the wheelchair
7) Drive it up to the back of the van
8) Open the platform on the back of the van
9) Drive it up on the platform
10) Lock it and cover it
11) Then go back and close the gate

The great thing would be reversing it all when we got home. Does this lady have any idea how much work it already is trying to get 5 kids and 2 adults out the door without lugging around a 300 lb wheelchair?

All this reminds me of the story of NASA's space pen. This past summer, while visiting Kitty Hawk, we had the opportunity to see the space pen.


Until I actually saw the space pen, I thought it must be an Internet myth. The story, of course is full of myth, but the idea is the same. Americans spent thousands of dollars developing an anti-gravity ink pen. The Russians used a pencil.

Are we that prone to making things more complex than they need be?

By the way, they have since discovered that a regular old ink pen works just as well in space as the "space pen", and I'm still convinced that a regular old manual chair works much better for a preschooler than a $35K power chair.

Call me crazy. (That was rhetorical.)

Really Funny Video!

Click here to see a really funny video about home schooling!

A Beautiful Heart

Sometimes I ponder what our oldest daughter's future would have been if we had not adopted her. While the information is always sketchy, there are some things that I do know for sure. One thing is that her caregivers were terribly worried that she would not be adopted before she turned 4. At age 4, the children are evaluated and sent to various orphanage boarding schools (rather than a baby house, which will house any baby). If there is any defect detected by this very subjective evaluation, the child is then sent to an institution for the disabled. There, she would face not only a future with no family, but with no education, near starvation and no stimulation at all. (See Abandoned to the State, Cruelty and Neglect in Russian Orphanages to get a taste of what life would be like -- these aren't photos that you would want a young child to view. ) Another thing I know is that although most people in the Former Soviet Union don't talk about it, enough have for people to know that this type of institution is far too common. Of course, even just one institution like that is far too many!

But, today, our dear little 8-year-old is not tied to a chair, or left sitting in a dark room or forced to lie in a bed all day (unless she gets in trouble, and then it wouldn't be all day, just for a while). Instead, she's out in our front yard, playing in the snow, pretending to be an Inuit foraging for food for herself and her sled dog team.


Minutes earlier she was inside, reading through a box of prayer cards that we had received from Operation Christmas Child.

"Mom, what's a refugee camp?"
"Why would we need to pray for children that are in a war? How can a child be in a war?"
"Why would a child have AIDS?"
"Why are there so many children living in sewers?"
"Why would children live in garbage dumps?"

Such hard questions to answer to a child who doesn't even really remember her life in an orphanage! All she remembers is the security of having our family, a family that is far from perfect, but much better than no family at all. In an odd twist though, she does know something about that part of her life... She'll tell people that she knows that she would have a different life in Ukraine. She does know that she would not be reading, swimming or playing the piano if she hadn't been adopted. She knows that she wouldn't know about Skyline Chili, Mexican food, or Cream of Wheat. She knows she wouldn't have her beloved service dog or a family that loves her.

Of course, that doesn't mean she's not a kid. She still disobeys, she still makes mistakes, like flushing when the plumber's working on the pipes, and she still has times where she covets what other people have. But, we never expected her to say, "Oh thank you, Mom and Dad, for rescuing me and giving me life!" any more than we expect our boys to say, "Thank you so much for birthing me and giving me life!"


Her musings, today, touched me because she does, obviously, feel a connection to suffering children. None of our other kids pay attention to those prayer cards. She studies them. She remembers to pray for them. She talks about them.

So, today I didn't ponder what her life would've been like if we hadn't adopted her, I pondered what my life would be like if we hadn't. Taking her suffering and making it mine has been one of the most defining and life changing things I've ever done -- and the most rewarding. On the day we met her, there was no question in either I or my husband's mind that this child was ours and that any of the details of her disabilities would pale in comparison to the joy of having her in our life. She sparkled like a jewel among all the adorable children in her orphanage, always a gleam in her eye. Although, I might say that sometimes that gleam is more of a spark than a gleam!

I've learned so much from her (the least of which is probably what I can do with 1 arm, making me much more efficient at many physical tasks!), that I can't even count the ways it's been a blessing. The courage that she showed during her hip surgery and recovery was far beyond anything that I could muster. Her ability to deal with the indignity of having to use a bed pan and have her parents dress her for weeks after her surgery astounded us. It was like the harder something was, the higher she rose. But, it's her unyielding belief that God is good and loves her unconditionally, despite what life has thrown at her that astounds me the most.

So today, as she innocently flipped through the cards, I was blessed once again by the fact that the Lord chose me to be the mother of such a beautiful little heart that sees past the pain and loss in her own life and desires to bless others.

Now, if only I could get her to clean her room with a good attitude!

More on the Wheelchair -- Will She Ever Stop? Probably Not!

I think the thing the bothers me most about this wheelchair controversy is that the medical professionals are assuming that they know what's best for our daughter not because they know her, but because of case studies and "research" done on the use of power chairs. However, they are blowing right past one aspect of arthrogryposis: the fact that you just don't know for certain how affected the muscles and joints are! While we know that her muscles and joints aren't working properly, we don't know what atrophy is from the arthrogryposis and what atrophy is from lying in a crib in an orphanage for 2 1/2 years. The fact of the matter is that she is significantly stronger than she was when we first adopted her. However, her Doctor is certain that all the atrophy she saw at the first visit was directly related to arthrogryposis! She totally dismissed the idea that any of it could be from life in an institution.

The other thing that's bothering me is that they are making it like she needs certain things in order to be whole. There is this idea that we need to provide the perfect house, the perfect van, the perfect wheelchair. No wonder pregnant people worry so much about if their child has a disability! I mean, I had no clue all the balls and chains that our culture had attached to the parents of special needs children until we adopted our youngest (mostly because we avoided the medical scene as much as possible --- something I'm so glad about now!).

So, here I am planning a future for her that includes following God where ever He leads, including marriage, higher education, and travel, and trying to decide when she should start learning to read, study Latin, and piano. Meanwhile, her doctor is talking about her needing "on going therapy for the rest of her life" in order to just function. Are we on two different planets or what? So, when does she get to be a kid? When does she get to be a student? An adult? A wife? A Mom? In between the "ongoing therapy sessions?"


In the end, I'm angry because they just keep trying to fix her, and I don't think she's broken! I think the we just need to assess where she's at and meet her there. If a manual chair works now, then use the manual chair. If she wants to crawl on the floor, let her crawl. If she wants to use the chair, let her use the chair, and if she wants to try to walk, help her walk. She's the one that's going to have to live life in her body, and, especially considering how well spoken she is, she lets us know what she needs!

The Wheelchair Controversy

"I just don't understand how, as a parent, you wouldn't want your child to be able to keep up with other kids!" -- Therapist at Children's Hospital to me


If there is one thing I would do over, it would be the process of getting our youngest daughter a wheelchair. I do think that the professionals at the hospital really have her best interest at heart, but I also don't think that they know her or her life like I do. And, I'm really tired of medical professionals (hope I'm not offending anyone, because I do know lots and lots of good medical professionals) that say, "You know her best, so you know what's best for her.", but then turn around and tell me I don't know what she needs!

I've tried to figure out why I never got as frustrated with Doctors with my oldest daughter, and I realized it was because we hadn't really involved any doctors until recently, and then we very specifically chose what doctors and therapists would be involved. For instance, our oldest daughter has a wonderful physical therapist who not only pushes her, but inspires her. My daughter looks forward to seeing her and often talks about how "Barb will be so proud of me!"

However, I am just not on the same wave length with our youngest's doctors and therapists. The issue of controversy surrounds her wheelchair. Without ever testing her with a manual chair or even attempting any formal physical therapy, they decided she needs a 300lb power wheelchair. So, in the course of waiting for this behemoth to arrive at our home, my husband and I bought a manual wheelchair off the Internet.

It turns out that she can work the manual with no problem at all. In fact, she's so good that she can pop wheelies in it! Backward, forward, circles! Although her endurance is greatly improving, she can't go distances in the chair. Of course, she's three, so if she has a distance to go, then we push her.

Anyway, her skill with the manual led us to decide that a power chair was not necessary -- at this time. Down the road, when she needs more independence, it would make perfectly good sense. However, the power chair weighs 250-300 lbs, requires the addition of a lift to our van and we cannot take our eyes of her when she's in it (because she can hurt herself or someone else!). She cannot use the power chair in our home, at her preschool class or at Sunday school. We currently don't have a lift, so she couldn't take it anywhere anyway. And, of course, with 7 of us living in a small cape cod, storage is a big issue.

So, I ask again! What is the point of this chair!!???

Last month I called the hospital to talk to the therapist about putting the order on hold. However, she was on maternity leave so my called got bounced from person to person, and no one did anything about it. In the meantime, our insurance approved the chair.

Now, the problem. We don't want it.

So, after the therapy center found out from the medical supply company that we don't want it, I got another phone call.

Basically, they can't believe we don't want this chair. After a lengthy conversation, it comes down to the fact that she will use this chair a couple times a month, if that, for things like the zoo or the museum or taking a walk at the park.

So, saying she uses this chair 2x a month for the next 3 years (saying she's trained enough to take it into a classroom when she's in first grade at which point she will use it more regularly), that means that each time she uses the chair, it will cost approximately $449. So for $449 she can "feel like she's keeping up with her peers" those couple times a month. What???

Now, our insurance company is paying the majority of the chair, but we're still responsible for $3000 plus the money to put the lift on the back of the van (approximately $1000). The therapists are adamant that she needs this chair for her development.

Now, I'm not a therapist or early childhood development specialist, but, in the past year of being in our family, this child has:
1) Learned to speak English fluently
2) learned to count to 10
3) Learned to understand the concepts of zero, 1, 2,
4) Begun building with legos (the little ones, not the big ones!)
5) Become fully potty trained
6) Learned to dress/undress herself, with the exception of her shirt (no small feat for someone who can't bend her arms!)
7) Learned to recognize her name in print
8) Learned all the requisite animal sounds that American kids are supposed to learn
9) Learned to be silly and tell jokes
10) Learned to follow directions and obey
11) Learned how to work a manual wheelchair

And, I could continue the list. Now amazingly, she's done all this without a power chair.

But, here's what gets me. When I'm told something like, "I don't understand how, as a parent, you wouldn't want her to keep up with other kids." I just don't even know how to respond! Does this lady get it at all?? Heavens! I would cut off my own legs and give them to her if I could! Of course I want her to keep up with other kids! I live with the pain of her disability everyday, and if I could fix it I would! But that's just the point... I can't fix it. No one can! She's got to live with this for the rest of her life.

We're trying to create a life for her where she's not dependent on $35K wheelchairs, but has learned to manipulate her environment as much as possible on her own. I want her to be able to travel, to crawl out of a house in case of a fire, to be able to live independently if her power chair breaks down. If she's using a power chair from the start, I highly doubt she'll learn those things. In addition to that, we can't center our budget around a tool she'll use 1 or 2 times a month. I don't think that's fair to her (while we're at it, why don't we just teach her that our family revolves around her special needs!) or anyone else.

In addition to that, I feel guilty about the expense. Our country is so screwed up where health care is concerned, and here we are doing our bit! Our insurance company (and probably some county funds to boot!) are going to pay for this! I know I can't change the system, but I feel sick playing into it. In the meantime, it just seems like this over treating is getting worse and worse. Recently I learned that there are people talking about fitting infants with these things! Infants -- 4 or 5 months old!

In the meantime, we're watching our daughter get stronger and stronger everyday that she uses the manual chair. She's also been trying to stand and walk. Of course, the therapist pointed out that it won't interfere with any of that because she'll still be using the manual and scooting around the house and in classrooms. So, again, what's the point of this power chair?

The end of the story is that we're probably going to get the chair. The hospital staff are working with the county to access funds for the co-payment. And, while I do think she'll be using the chair in a few years, this creates another problem for us. The insurance will replace the chair every 5 years. So, by the time she is 8 or 9, she'll be ready for a new chair. However, we won't have access to those funds again, so we'll have to shell out the co-payment. Now, if we waited to fit her until she was 5 or 6, we'd at least have more time before we'd have to come up with money for the next co-payment, and she'd really use the chair the entire time we have it. From a financial side, as my husband pointed out, helping her go to college is good for her development too.

This has been so frustrating that I have wanted to find a park somewhere and just shout, "MY CHILD IS NOT JUST HER MEDICAL CONDITION! BEING UNABLE TO WALK DOES NOT DEFINE HER OR OUR FAMILY!" and "I'M NOT A BAD MOTHER JUST BECAUSE I THINK IT'S RIDICULOUS TO FIT A 3 YEAR OLD WITH A POWER CHAIR!" until I'm blue in the face. I'd probably end up in the loony bin, though, if I did.

Oh well. I think there are some therapists out there that would like me to be there.

Three Broken Glasses and Jelly on My Pants

Today I made a terrible mistake. I decided to leave my 5--year-old and 3-year-old at the table to finish lunch while I ran up stairs and quickly vacuumed the fine coating of dog hair that decorates every square inch of carpet in our house.
From these innocent pictures, you'd never believe the havoc these two can wreck. But, trust me. They know havoc wrecking like area plumbers know our main drain and laundry room (really well).

As I finished the last area of carpet, I heard my eight-year-old call to me.

"Mom, ***** broke a glass!"

Our 3-year-old has been known to break dishes. Since she can't bend her arms the easiest way for her to drink is with a straw. After some trial and error, we figured out that a coffee mug, because it's heavy and won't tip over, with a bendy straw works best. This worked well until the advent of her wheelchair, and then she got the idea that she wants to carry her dishes to the dishwasher. Normally, I would find that great, but since she's three, there's not enough lap for her to hold her dishes while she wheels.

She ends up wheeling and holding her dishes at the same time. The first problem this presents, of course, is if there is any food or drink left on her dishes. If there was at the table, that quickly changes as the food and drinks move from the plate and cups to the floor, wall, my clothes, the ceiling...

The other problem is that she will lose her grip on the dish as she's wheeling, and that's the worst time for her to lose her grip. The cup doesn't just fall, it gets launched across the room, as her arm (which is straight) is moving forward in a strong and swift movement at the precise moment that she loses her grip.

So, today, when our oldest daughter told me of the broken cup, I wasn't that surprised. Fortunately, coffee mugs usually don't shatter.

Unfortunately, that's not what happened.

I walked in the dining room to find our dining room tablecloth hanging off the table. There were broken dishes on the floor, salsa on the table, chairs, floor and wall. There was also salsa on our border collie. Both girls were crying. The dog was shaking and cowering.

It only took minutes to gather that the girls had been goofing around when they were supposed to be eating. The five-year-old had been pushing the three-year-old in her wheelchair (something she's not allowed to do, no less!) and the wheelchair got caught on the tablecloth, and pulled it and the dishes off the table.

Needless to say, I won't get mom-of-the year award for my reaction. Any person who has said that I'm a saint for adopting handicapped children would certainly revoke that honor if they saw me react to the salsa/milk/peanut butter and jelly/glass shards mess I was facing.

After my meltdown, I put both girls in separate rooms for time out. I was so angry I couldn't even look at them. My older three were great, and helped me get everything cleaned up. I think they were worried I might be sent off to an insane asylum if things didn't get fixed. No matter what their motivation, they were so helpful, but, sadly enough, my daughter cut her finger on a piece of glass (only adding to my anger toward the younger two!).

After it was all cleaned up(which took 45 minutes, and got my clothes nice and sticky), I sat down, and tried to focus my thoughts. I called the little girls together to talk to them. Still angry, I explained to them how their disobedience had caused me great pain, and it had hurt them. They like to pretend that under our table is a "Choo-choo train" and they had an assortment of toys that were ruined in the ordeal. We talked about sin and how our sin hurts other people and ourselves. We talked about forgiveness and how love stays the same no matter. It was a great heart-to-heart.

Then I asked them what they thought.

The three year old looked at me and said, "Look mom! We match! I got jelly on my shirt and you got it all over your pants!"

My five-year-old said, "Should I put shoes on now?" I had told her she had to wear shoes to protect her feet in case I missed any glass. "I'll get my pink boots. They'll protect my feet and they look great with my jeans."

I'm so glad this was a learning experience for us all!

Einstein, Babies and Flashcards

I recently skimmed through a very interesting book entitled, "Einstein Didn't Use Flashcards" . The book was written by three women with doctorates in early childhood education and such related fields. The gist of the book is that parents should let their young children just play. Why in the world it would take a person with a PhD. to point out the obvious is beyond me. But I guess we've become such an expert based society that we can't even just let little kids play unless the experts tell us it's okay.

It reminds me of a visit I had with our middle daughter when we first brought her home from Kazakhstan. She was barely 2 years old and we had her assessed by almost every specialist known to man. During those evaluations we spent some time with an occupational therapist. Because our daughters hands and fingers are unusual in design, the therapist gave us home therapy.

Playing with legos
Playing with blocks
Playing with toys that have buttons
Playing in sand boxes
Playing with sewing cards
Playing with stacking cups
Playing with play dough

Each of these activities were written on a sheet of paper, and at the bottom, there was a warning.

"Warning: these activities are to be done only under adult supervision. Do not allow your child to engage in these therapies without the consent and guidance of a trained professional."

So, is the trained professional a therapist or a person who works for Lego or Playskool?

It's not unlike a recent article that I read about a new therapy used for children with ADHD: Green Therapy. No, this is not the green therapy involving marijuana. As I read the therapy description I realized that these ingenious experts had figured out that kids with high energy levels needed to spend time playing outside! Again, it takes an expert to figure that out??

At any rate, these three ladies wrote a great book (I only skimmed it because I have lived the birth -5 years enough times I'm kind of familiar with the territory), and I would recommend this book to any parent with a young child. There was so much that I agreed with, which, of course, from my perspective, is why it is such a good book!

This book inspired me to create a list of things that I have found to be very useful for raising a child from birth to age 5.

1) T.V. is not for infants and toddlers (no matter what Baby Einstein says!), and should only be commercial free for older kids

Only people trying to sell products are telling parents to put their infants and toddlers in front of the T.V. for any purpose. Reliable "experts" are not advising parents that because all the research has shown that you shouldn't set your kid in front of a T.V. set before age 2, and even then you should limit it to less than 1 hour a day. Ditch the Baby Einstein videos and wait until your kids are old enough to sit in front of the T.V. and watch something interesting. And, when they're old enough, put off commercial T.V. as long as possible. If you do PBS and only PBS, an amazing thing happens. First of all, they don't sit there and learn how to covet the latest toys being marketed (marketed by people who attend conference workshops entitled "how to override the parental veto, no less) to children, and, as a result, they are actually content with what they have! They'll still find out what's out there, but they won't sit there and be systematically programmed to covet it. Secondly, of course, they are actually learning something some of the time. And, thirdly, they will gradually lose interest and not want to really watch T.V.

We also don't get "National Geographic Kids" for the same reason. Every other page in that magazine is an ad for a new junkie breakfast cereal, movie, or video game. It's an education that I don't really want my kids to have (or to pay for!). You get a better magazine in "Ranger Rick" from the National Wildlife Federation.

3) The most interesting thing you can put in front of your baby is your face.

I would love to talk to the creators of Baby Einstein. Since it wasn't around when my boys were babies, I've tried to figure out how they turned out so smart. Or my daughters, who had next to no stimulation in impoverished orphanages. Trust me, there was no Baby Einstein there! Yet, they are all smart and excellent students.

Buy standard toys from toy stores, don't worry about colors in your babies sheets, plates, cups and utensils or the patterns in their bath towels. I mean, somehow humanity has moved forward for all these thousands of years without specialized toys for babies and toddlers!

When my boys were babies, their favorite toy was us. They were fascinated with our faces, fascinated without voices. They loved to be held and read to (even as infants), sung to, bounced on our knees etc. You and a few simple toys are much more valuable than anything else, and the baby gym produced by a smaller company is no less a toy than one designed by "Baby Einstein".

4) Anything that can be taught from educational computer software can be taught better from a book, or basic crayons and paper.

5) The less the toy the better the educational value

They get more out of boxes, dirt, bugs, blocks, lincoln logs, paper, crayons, scissors (watch the hair though) and other such toys than a leap pad. Honestly, I don't even call leap pads educational toys. They're fun, but your kid is much better off getting dirty by learning to explore his world and use his imagination.

6) Classes for kids under the age of 4 are ridiculous, take them only if you want to have fun with your kid not for any educational value.

Fun is the only value in them. I taught, for one semester, a piano class to 2 and 3 year olds. It was ridiculous. What took them 3 months to learn could be learned in a couple lessons when they turned 6 or 7. It can be fun to take a class with your toddler, but just don't expect them to learn anything that you couldn't have taught them.

7) Outside of the obvious things (such as prenatal nutrition and maternal health) you don't need to do anything with your fetus to help it develop.

The Mozart Effect has been debunked, and, well, your baby doesn't speak English, so it doesn't matter if you are talking to it, or to someone else. He/She just really doesn't know. So instead of worrying about "prenatal parenting", then just enjoy the fact you're going to have a baby! And, then, just enjoy your baby when he/she is born.

What's really sad about all this marketing is that its taking a culturally unhealthy childhood and extending it all the way back to infancy (or even prenatally)! Is the only time in life where people can just "be" when they're about to die?

A Big Ugly Dog and Forgiveness

Several years ago, I was the victim of a crime. The event was perpetrated by a dog, but the crime was really the ignorance of its owners. They bought a dog (in a city, where it is statistically likely to have been bred from fighting stock) that was known for its power, strength and aggression, and then they never bothered to put the dog in obedience training. Instead, fairly ignorant of dog behavior, they kept the 80+lb dog in their home, letting it interact with guests and children in their neighborhood.

I met the dog when it was only about 2 or 3 years old, and within seconds of the meeting it ripped my nose and lip nearly off. The owner drove me to the hospital where I had my face pieced back together by a plastic surgeon. I was terrified, my husband was terrified and my children (who stood next to me as the dog attacked) were terrified. I spent the next week drugged in order to cover the pain which was not only in my face but entire body which had bruises, scratches and teeth marks from the dog jumping on me. With that attack, nightmares, a constant sense of shock and fear became ingrained in me.

On the way to the hospital, I could barely talk and I was praying that my lips were still attached to my face. I also begged Jesus to just get me through this ordeal and help me to use it for his glory. I held the towel over my mouth (to catch the blood) and looked at the man who owned the dog.

"I just want you to know that I forgive you for letting this happen." I said, "I understand that things like this can happen and I just want you to know that I forgive you."

He responded with some apologies, and I thought that this was going to be some great thing that God would work for his glory. Well, it was, but not in the way I thought.

The next day the owner and his wife came over to see how I was. I was still drugged and terrified, and I appreciated their concern. But then, the owner said something that made it feel like the attack was happening all over again. He implied it was not his fault or the dog's fault.

"I don't know what happened. I mean I don't want to make this matter smaller than it is or anything, but this he's such a good dog that I just have to think that this was a playful nip that just went too far."

A playful nip that went too far???? I had over 54 stitches in my face!!!

On that day, I couldn't deal with the guy anymore, so I just smiled, told him I appreciated his visit and secretly hoped he would leave.

Several weeks later, though, I got a call from him. He had talked to his vet, and his vet had suggested that the dog (because he was such a great dog -- or perhaps because he helped to make the vet have a successful practice?) not be put down. Instead, they suggested dog therapy.

Yes, I know it's really really really stupid. But what came next was even more incredible.

"See," he told me, "Sometimes a dog can misinterpret your motions and think you are being aggressive. Your body language told our dog you were a threat, so he bite you."

Oh my, I thought, he's really telling me that this attack was my fault! Instead of the victim, I was the instigator!

Let me stop here and explain just what it feels like to have a crime committed against you, to be brutally attacked and then have the perpetrator suavely explain that it was your fault. There was nothing, nothing that could've hit harder. My face was still ripped up. I had a son who was showing symptoms of PTSD, it hurt to move my arms, I was scared to take walks outside, I was scared to go to the park, I was scared of my own dog, I couldn't sleep at night without nightmares .... and he sat there and told me that it was my fault! Even now as I write about it it raises up anger, guilt, fear and shame.

He went on to ask me for my blessing on his idea to forgo terminating the dog and putting it into therapy.

Obviously, I made it sincerely clear that I thought that was a irresponsible idea. Then I hung up the phone, and really let my husband know just how irresponsible and selfish I thought it was!

Over the course of the next few months I really processed all that had happened. I couldn't believe that that guy would value his dog's life over my face, the safety of his neighbors and wife, and all rational thought. That dog could've easily killed one of my children! Thank God it attacked me and not them! But, still, he did value that dog so much more than human life and health! To my knowledge that dog is still alive today. It did help that their home owners insurance (as well as the laws of Ohio) didn't agree that the attack was my fault! And, God did use this to his glory when we were compensated for the attack and able to pay off adoption debt.

However, there was another lesson in it that came to mind again the other day when I was reading in Colossians.

'But now He has reconciled you by Christ's physical body through death to present you holy in his sight, without blemish and free from accusation." Colossians 1:22

I was thinking about what a tremendous gift this is. Christ suffered so much on our behalf, took our punishment for our sins and then just simply forgave us. For those of us that recognize the gift, it is the most wonderful thing. Similar in some ways to how I suffered through the dog attack, taking the brunt of the dog's aggression because of the owner's incompetence in dog behavior, training and handling. Then I forgave him -- something that should've been so freeing to him, and truly given by me as a valuable gift.

But just like the dog owner, there are people who don't recognize the gift. I forgave him. I'm glad I did. I'm glad that I chose to do what Christ wanted me to -- even though it fell on deaf ears. His actions showed that. My forgiveness didn't matter because he was certain that he (or his dog) had done nothing wrong. So, he threw it back in my face, almost to the point of trying to manipulate me with it.

I realized how much that is a picture of how people reject Christ. They take his forgiveness and throw it out. There is no gratitude for the blood that was shed, there is no sensitivity to the losses he faced, and there is no real acceptance of the forgiveness because they believe that they have done nothing wrong. Through this dog attack, I was able to have a tiny understanding of how Jesus feels at this rejection.

That perspective is another way that God redeemed it. Now when I look at the thin scar running across the top of my lip, or when I feel how my left nostril is blocked with scar tissue, it isn't a reminder of how I suffered. It's a reminder of the gift that Christ gave me when He took the punishment for my sin.

I also now understand that nothing, not even all the money an insurance company can throw at you, can replace the lost relationship that happens (even with a mere acquaintance) when a person refuses to accept forgiveness because they refuse to acknowledge the wrong that they've done.

I've wrestled with the question of whether or not I have truly forgiven him. Up until the night of the phone call, I felt that I had. But that phone call was so difficult to get past, that I do still question it. I can honestly say that I don't harass the guy, I don't gossip about him, I haven't made any mean websites about him, I pray for him and his family (especially their safety since they still have the dog), and I don't think mean thoughts about him. I actually don't think about him much at all. I still trust that God can redeem his way of thinking, and that God will righteously judge this incident as He will all others. So, from my human perspective I think I've come as close to forgiveness as I can, and my prayer is that I will continue to live in forgiveness towards him in whatever God calls me to.

No More Deserted Islands!

Are they cute or what????