Tuesday, November 30, 2010
Friday, November 26, 2010
Children's Hospital Development Center
I got "the packet" from Children's today. It's ahmmm....not short. I will spend a large chunk of tomorrow filling it out. Then "the packet" goes to a team of experts to be evaluated. Then we get "the evaluation"; it's an all day deal where Princess, and her respective parental units get... well we get evaluated.
I don't know the results, and I don't know if we will get a "diagnosis" but just reading through the packet was affirming. I am not making stuff up. There are legitimate things in my youngest's medical history and family history that contribute to the stuff we see. It's documented by medical doctors, occupational therapists, and social workers. It's real.
Funny how I can trick myself into thinking that nothing is wrong. Abnormal becomes normal and we forget...
-most people don't have to drug their children to get them to sleep (well technically herbal supplement them...but whatever)
-most people can take their children into a store without them becoming unglued.
-most people do not plan sensory diet events into their day.
-most people don't walk into a new situation with a transitional item in place.
-most people don't start every every morning the very same way because change sends their little one into "behaviors" that aren't worth a few extra minutes of sleep.
-most people can ask their children "why?". (we tell "what")
-most people don't have to frame every stinking thing as a choice.
-most people aren't on hyper-alert all the time for when their child might impulsively do something to hurt themselves or others.
-most people aren't kinda expecting to change their child's diaper till she's 6.
But because we've developed a hefty repertoire of coping strategies and parenting tools that might look weird to others our lives operate relatively smoothly. Normalish. Nearly invisible differences. Yet, you take away the crutches and holy guacamole; chaos abounds.
I promise to stop blogging about this soon, but it's on my heart right now.
I don't know the results, and I don't know if we will get a "diagnosis" but just reading through the packet was affirming. I am not making stuff up. There are legitimate things in my youngest's medical history and family history that contribute to the stuff we see. It's documented by medical doctors, occupational therapists, and social workers. It's real.
Funny how I can trick myself into thinking that nothing is wrong. Abnormal becomes normal and we forget...
-most people don't have to drug their children to get them to sleep (well technically herbal supplement them...but whatever)
-most people can take their children into a store without them becoming unglued.
-most people do not plan sensory diet events into their day.
-most people don't walk into a new situation with a transitional item in place.
-most people don't start every every morning the very same way because change sends their little one into "behaviors" that aren't worth a few extra minutes of sleep.
-most people can ask their children "why?". (we tell "what")
-most people don't have to frame every stinking thing as a choice.
-most people aren't on hyper-alert all the time for when their child might impulsively do something to hurt themselves or others.
-most people aren't kinda expecting to change their child's diaper till she's 6.
But because we've developed a hefty repertoire of coping strategies and parenting tools that might look weird to others our lives operate relatively smoothly. Normalish. Nearly invisible differences. Yet, you take away the crutches and holy guacamole; chaos abounds.
I promise to stop blogging about this soon, but it's on my heart right now.
Sunday, November 21, 2010
Thankful
Topping the list: a bald dude on the downhill side of thirty. I so love him. He's my best friend and biggest ally. He responds to my, "Hey, let's..." with a " Sure!". Some of my ideas are nuts, some are risky, and he's always game. He's the feet and hands to my dreams. And I cannot tell you how much that means to me.
Next: My kids all one, two, three and four of them. My life is FULL, but less would feel empty.
In no particular order:
Next: My kids all one, two, three and four of them. My life is FULL, but less would feel empty.
In no particular order:
- Lattes, and mountains. So maybe the connection isn't obvious. But I love them both. With their respective deliciousness and majesty the feed my soul.
- My suburban. I love my miniture green school bus of a vehicle.
- Friends who "get" me.
- Gluten free "oreos".
- Writing, and books. I love words. Nerdy, I know. Shut-up.
- Living a story bigger than myself.
- Family. I really had a "Leave it to Beaver" childhood. You can thank my parents for my general level-headedness and well balanced outlook.
- Anti-depressants. Okay- so you might have to thank the makers of Wellbutrin too. They have heavily contributed to my sanity.
- Puppies. I am a recovering animal hater.
- My lovely home. I am even sorta thankful for the kitchen table missing most of its finish and marked with crayon. Good things happen 'round that table.
- Will Farrel - I'm not even gonna explain that one.
- Our church
- many many other things
Friday, November 19, 2010
No Lone Rangers in this Story
-Invisible disabilities can be such a head game. I got "in" with Children's Develpment Clinic. It's lot's of paperwork . Evaluations are scheduled 4 months out. That doesn't bother me. I'm nervous they are going to tell me that I am making stuff up, and that bugs. I would like someone, besides my husband, to validate what we see.
-She's cute, and charming. And, well, really charming. She doesn't regulate sleep. Or tolerate certain sensory input. She is potty training challenged. She looks for bizzarre sensory input. She has food texture issues. Just because she hears it, or even says it back to me does NOT mean she get's it. She is cause and effect challenged, and has barely perceptible motor delays. Impulse control what? She is impulsive and sometimes jet propelled. It is unsafe to keep her unsupervised for even a half a minute. She loves to be at home, or outside in the mountains. She becomes absolutely UNGLUED in stores. We both have post-traumatic stress after a trip to get groceries. And don't even get me started on what happens if her routine gets goofed up. It ain't pretty.
-At church, we've been talking a lot about what it means to do life WITH. We've been using words like: authentic community, and selfless sharing, and vulnerability. The value of this becomes really apparent as we consider that our daughter may always NEED to do life with others. She's bright, and delightful, but she will NEED someone. The truth is that we all need community, and life isn't meant to be lived in isolation. But the ramifications of my daughter trying to "do it alone" could be disastrous - all the data indicate it would be disastrous.
And so I question why "independence" is a metric for a successful life. For my littlest success will be defined in terms of whether she has the support people and systems in place to become all that God would have her be. And I am convinced she has much to offer the world. But the operative words will be interdependence, and connected, and supported, and valued. There will be no Lone Rangers in this tale - not if it is to be a "happily ever after".
-She's cute, and charming. And, well, really charming. She doesn't regulate sleep. Or tolerate certain sensory input. She is potty training challenged. She looks for bizzarre sensory input. She has food texture issues. Just because she hears it, or even says it back to me does NOT mean she get's it. She is cause and effect challenged, and has barely perceptible motor delays. Impulse control what? She is impulsive and sometimes jet propelled. It is unsafe to keep her unsupervised for even a half a minute. She loves to be at home, or outside in the mountains. She becomes absolutely UNGLUED in stores. We both have post-traumatic stress after a trip to get groceries. And don't even get me started on what happens if her routine gets goofed up. It ain't pretty.
-At church, we've been talking a lot about what it means to do life WITH. We've been using words like: authentic community, and selfless sharing, and vulnerability. The value of this becomes really apparent as we consider that our daughter may always NEED to do life with others. She's bright, and delightful, but she will NEED someone. The truth is that we all need community, and life isn't meant to be lived in isolation. But the ramifications of my daughter trying to "do it alone" could be disastrous - all the data indicate it would be disastrous.
And so I question why "independence" is a metric for a successful life. For my littlest success will be defined in terms of whether she has the support people and systems in place to become all that God would have her be. And I am convinced she has much to offer the world. But the operative words will be interdependence, and connected, and supported, and valued. There will be no Lone Rangers in this tale - not if it is to be a "happily ever after".
Wednesday, November 17, 2010
Sunday, November 14, 2010
With
Independence is as American as apple pie. But as we bite into it I wonder if it will not turn to rot in our mouth.
We were not meant for independence, and self-reliance is over-rated. If we bear the image of our creator (and we do) then we are meant for relationship.
Kitchen tables and campfires.
Sleep-overs and girls-night out.
Rainy afternoons and board games.
It's true we are meant to be free, but independence is a distortion of freedom. Some of the most enslaved people I've met have been fiercely independent. Fear of abandonment, pride and self-reliance have built a prison they call a fortress. They believe they are safe, but really, really they are just in a jail of their own making.
Then there are those who live on the margins. They are unseen, unloved, forgotten, and unkown. But most of all they are alone. Alone. Not independent. Not free. Alone.
Independence is over-rated.
We were meant for community.
The beginning of the Story starts as God walks WITH Adam and Eve in the Garden.
The end is the same.
Revelation says, "Now the dwelling of God is WITH man and he will live WITH them. And he will dwell among them and they shall be his people, and God himself will be among them...
WITH is the bookend - the beginning and the end, and the purpose in between. God intends to know us, and be known by us. He intends for for us to know each other. WITH is woven throughout the fabric of history...
Broken and then Restored.
Have you ever wondered what it means to be restored?
John 1:1 says, "In the beginning was the Word, and the Word was WITH God, and the Word was God."
The Word: that's Jesus. God in the flesh, dwelt among us. Emmanuel. When Jesus came he came to be WITH us, to restore us and redeem us from the jail of our own making, and the jails we did not make at all, yet find ourselves in. There is freedom in WITH. There is power in WITH. It is the power of God.
We are meant to be in relationship WITH God. We are meant to be in community in WITH each other. And when we reach out beyond our self-absorbtion to walk WITH those who live on the margins God is honored. Because when we walk WITH, we become imitators of God. True followers.
Be careful here; a danger lurks. Just as independence is not freedom, neither is near the same as WITH. Near is a cheap substitution for WITH.
Near is about proximity.
WITH costs. Jesus was Immanuel, God WITH Us, and it cost him his life. His life.
If you think you know a thing about WITH, yet it has not cost you it is not WITH. Do you want intimacy in your marriage? WITH is going to cost you.
Do you want to know the heart of your child? WITH is going to cost you.
Do you want your life to be a story worth telling? WITH is going to cost you.
It always does.
But a story WITH is the only story worth telling. It is the Story, in fact...and so all great story, must be the same story.
Walk WITH God.
Walk WITH Others.
Walk WITH the Least of These.
"See, I have engraved you on the palm of my hand..." God said this to Israel, His People. He says it to us as well. We are the people that he loved, that he remembered, that he restored. He wanted to be WITH us. And so he engraved my name (and yours) on palms of His hands. So deep, in fact, did he engrave my name that it pierced His flesh. I think it may have looked like a...
A Spike.
A Tree.
A Hill where he died as soldiers mocked and crowds jeered.
WITH is a priceless gift.
We were not meant for independence, and self-reliance is over-rated. If we bear the image of our creator (and we do) then we are meant for relationship.
Kitchen tables and campfires.
Sleep-overs and girls-night out.
Rainy afternoons and board games.
It's true we are meant to be free, but independence is a distortion of freedom. Some of the most enslaved people I've met have been fiercely independent. Fear of abandonment, pride and self-reliance have built a prison they call a fortress. They believe they are safe, but really, really they are just in a jail of their own making.
Then there are those who live on the margins. They are unseen, unloved, forgotten, and unkown. But most of all they are alone. Alone. Not independent. Not free. Alone.
Independence is over-rated.
We were meant for community.
The beginning of the Story starts as God walks WITH Adam and Eve in the Garden.
The end is the same.
Revelation says, "Now the dwelling of God is WITH man and he will live WITH them. And he will dwell among them and they shall be his people, and God himself will be among them...
WITH is the bookend - the beginning and the end, and the purpose in between. God intends to know us, and be known by us. He intends for for us to know each other. WITH is woven throughout the fabric of history...
Broken and then Restored.
Have you ever wondered what it means to be restored?
John 1:1 says, "In the beginning was the Word, and the Word was WITH God, and the Word was God."
The Word: that's Jesus. God in the flesh, dwelt among us. Emmanuel. When Jesus came he came to be WITH us, to restore us and redeem us from the jail of our own making, and the jails we did not make at all, yet find ourselves in. There is freedom in WITH. There is power in WITH. It is the power of God.
We are meant to be in relationship WITH God. We are meant to be in community in WITH each other. And when we reach out beyond our self-absorbtion to walk WITH those who live on the margins God is honored. Because when we walk WITH, we become imitators of God. True followers.
Be careful here; a danger lurks. Just as independence is not freedom, neither is near the same as WITH. Near is a cheap substitution for WITH.
Near is about proximity.
WITH costs. Jesus was Immanuel, God WITH Us, and it cost him his life. His life.
If you think you know a thing about WITH, yet it has not cost you it is not WITH. Do you want intimacy in your marriage? WITH is going to cost you.
Do you want to know the heart of your child? WITH is going to cost you.
Do you want your life to be a story worth telling? WITH is going to cost you.
It always does.
But a story WITH is the only story worth telling. It is the Story, in fact...and so all great story, must be the same story.
Walk WITH God.
Walk WITH Others.
Walk WITH the Least of These.
"See, I have engraved you on the palm of my hand..." God said this to Israel, His People. He says it to us as well. We are the people that he loved, that he remembered, that he restored. He wanted to be WITH us. And so he engraved my name (and yours) on palms of His hands. So deep, in fact, did he engrave my name that it pierced His flesh. I think it may have looked like a...
A Spike.
A Tree.
A Hill where he died as soldiers mocked and crowds jeered.
WITH is a priceless gift.
Thursday, November 11, 2010
Barking more than the puppy!
This morning I thought I would blog about why I love homeschooling. It would have been a lovely post about deliciously homeade buckwheat pancakes and lattes, and lazy snowy mornings...
it would have been a post like that...
except...
There is a ten year old learning to write research papers, and that apparently requires a fair amount of pissing and moaning.
There is an 8 year old who does not want to learn 6x8, or 6 time anything for that matter. It makes long division an extremely LOOONNNGGG and excruciation process for anyone in the vicinity.
There is a 7 year old who doesn't feel well - and inherited his mother's tendency to get emotional when hungry, tired or sick.
There is a 3 year old who does not enjoy her schedule being thrown off by such silly things as buckwheat pancakes and lattes.
There is a 12 week old puppy who doesn't like to be drug around by her front leg by a preschooler wearing a fairy costume. Imagine that!
There is a thirty something woman who is trying to model long-suffering and tolerance, but in actuality might have been barking more than the puppy.
SO...
We are declaring an extended recess/PE. The big kids are going outside to build a snowman in 3/4 inch of snow. And peanut put herself down for a nap.
See there are some good things about homeschooling after all...
it would have been a post like that...
except...
There is a ten year old learning to write research papers, and that apparently requires a fair amount of pissing and moaning.
There is an 8 year old who does not want to learn 6x8, or 6 time anything for that matter. It makes long division an extremely LOOONNNGGG and excruciation process for anyone in the vicinity.
There is a 7 year old who doesn't feel well - and inherited his mother's tendency to get emotional when hungry, tired or sick.
There is a 3 year old who does not enjoy her schedule being thrown off by such silly things as buckwheat pancakes and lattes.
There is a 12 week old puppy who doesn't like to be drug around by her front leg by a preschooler wearing a fairy costume. Imagine that!
There is a thirty something woman who is trying to model long-suffering and tolerance, but in actuality might have been barking more than the puppy.
SO...
We are declaring an extended recess/PE. The big kids are going outside to build a snowman in 3/4 inch of snow. And peanut put herself down for a nap.
See there are some good things about homeschooling after all...
Wednesday, November 10, 2010
Orphan Sunday
6 years ago God broke my heart for a thing that breaks his - a worldwide orphan crisis.
It never really mended - my heart, that is. And somehow I don't think it was meant to. Millions of orphaned children should chafe at one's soul. Child led households should be disturbing. Babies with cleft palates destined to short lives lived out in institutions - that should keep a person awake at night.
So because God broke my heart for these things, I wrote a little email to the leadership of our church suggesting we host a Orphan Sunday event. I was not at all sure that they would take it seriously. But guess what? They did. We did. And Jacob's Well hosted our first ever Orphan Sunday. I'm sure big churches with big budgets pulled off some impressive events. Ours was simple yet... God was on the move.
One family made a commitment to adopt. Another is seriously considering it. Small groups are supporting child led households. Our church is commiting to help an organization who cares for kids who've aged out of foster care and are living on the streets.
There is a buzz...a rumbling...an undercurrent and a subtext.
I am so excited.
Partly, it's that I know many orphaned kids need to have the church act as their defender. If we are really, truly the hands and feet of Christ, then we need to be feeding, protecting, advocating and caring for the least of these.
But it's more than just that...because in some weird way we (the American church) need these orphans too. We need the to draw us out of the bondage of our own self-absorption. We need them to teach us about joy, and hope. We need them to redefine "treasure" for us. We need them to lead us to the heart of our Father.
When my heart broke for the orphaned child it broke, really and truly. Yet somehow in the process I found that life was bigger than I ever knew, and I found HOPE. I believe that as our little church cares for the things that break God's heart we will find life. Our world will grow. We will grow - both in numbers and in maturity. And I am so excited to see what God will do.
It never really mended - my heart, that is. And somehow I don't think it was meant to. Millions of orphaned children should chafe at one's soul. Child led households should be disturbing. Babies with cleft palates destined to short lives lived out in institutions - that should keep a person awake at night.
So because God broke my heart for these things, I wrote a little email to the leadership of our church suggesting we host a Orphan Sunday event. I was not at all sure that they would take it seriously. But guess what? They did. We did. And Jacob's Well hosted our first ever Orphan Sunday. I'm sure big churches with big budgets pulled off some impressive events. Ours was simple yet... God was on the move.
One family made a commitment to adopt. Another is seriously considering it. Small groups are supporting child led households. Our church is commiting to help an organization who cares for kids who've aged out of foster care and are living on the streets.
There is a buzz...a rumbling...an undercurrent and a subtext.
I am so excited.
Partly, it's that I know many orphaned kids need to have the church act as their defender. If we are really, truly the hands and feet of Christ, then we need to be feeding, protecting, advocating and caring for the least of these.
But it's more than just that...because in some weird way we (the American church) need these orphans too. We need the to draw us out of the bondage of our own self-absorption. We need them to teach us about joy, and hope. We need them to redefine "treasure" for us. We need them to lead us to the heart of our Father.
When my heart broke for the orphaned child it broke, really and truly. Yet somehow in the process I found that life was bigger than I ever knew, and I found HOPE. I believe that as our little church cares for the things that break God's heart we will find life. Our world will grow. We will grow - both in numbers and in maturity. And I am so excited to see what God will do.
Thursday, November 4, 2010
Quotables and Bullet Points
- Caleb, aka kid #3, is laid back. He's seriously low key - and it sometimes disguises itself as laziness. Yet, underneath he's got this creative and incredible inner world. He's got a fabulous ear for music. He's funny - but he can be so quiet you miss funny comments. So, I thought I should record recent Caleb comments for posterity.
"When I die and go to heaven I want to get the body of a lego guy." - Caleb
"Mom, I think I can breathe through my ears." - Caleb
- I am riddled with guilt because our puppy has an ear infection. I have no idea why this is my fault, but it feels like I failed at puppy ownership and will have to turn in my " Humane Individual Card". This is compounded by the fact that we returned Psychotic Oso, may he rest in peace, to the shelter a week after rescuing him.
- We're homeschooling. It's going well. I am still not convinced we are lifers. Homeschooling is an imperfect solution (Back-off you homeschooling nut jobs - It is NOT perfect, and not everyone should do it.). However, public school are jacked too, and so is private school. So where does that leave us?
"Je ne sait pas" is French for "I don't know".
I think it sounds classier than, "I'm clueless."
So
"Je ne sait pas."
- I have a cold. I hate colds.
- Abby is wearing a princess dress over her footie jammies tonight. She is kid number four, so we don't care. She's sleeping. Sleep is good - she could ask to sleep in medieval chain mail and we'd probably say "yes."
- I talked with this amazing woman who just adopted a newborn. She's in her late 40's and has 10 kids, and a whole bunch of foster kids. Most are special needs. She's normal looking, and put together - in case you were wondering. I'm pretty sure she knows a lot about the important things. Plus, she said, "Get Pull-ups; it doesn't matter if your daughter is 6 years old when she is finally potty trained." , and that makes me like her even better.
- I'm excited our little church is hosting an Orphan Sunday initiative. Go Us. We're little. We're made up of mostly new Christ-followers. And we're talking orphan care.
- I've taken to carrying around a bottle of childrens' antihistamine with me. My allergies are become a PAIN, and I've found a swig of liquid Benedryl is the fastest solution. Pretty sure nobody's doctor recommends that.
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