Thursday, November 11, 2010

God can't give you what you can't handle!?????????

"I hear people say all the time with good intentions. ‘God will never place a burden on you so heavy that you cannot possibly carry it.’


Burden


Really?

My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone. He will break your back and your will. He will buckle your legs until you fall flat beneath the crushing weight of your load. All the while He will walk beside you waiting for you to come to the point where you must depend on Him.



‘My power is made perfect in your weakness,’ He says, as we strain under our burden.

Whatever the burden, it might indeed get worse, but know this-God is faithful. And while we change and get old, He does not. When we get weaker, He remains strong. And in our weakness and humility, He offers us true, lasting, transforming, and undeserved grace.”



-Greg Lucas

burden art by ChristArt.com

Thursday, October 14, 2010

Amsterdam International

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." (see previous post below).  It is supposed to explain what it's like to have a child with special needs.  It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending.


The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.



If I had written "Welcome to Holland", I would have included the terrible entry time.  
And it would sound like this:

Amsterdam International


Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.)  But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do.  You rise to the occasion, and embrace your sense of humor (or grow a new one).  You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little).  But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds.  And forget the damn tulips or windmills.  In the beginning you’re stuck in Amsterdam International Airport. 
And no one ever talks about how much it sucks.



You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”.  The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.).  Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . .
but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.


(Although you don’t know it yet, this will become a pattern.  You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this damned unfair deviation to Holland.  At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting.  Some in Italy, some back home . . . all wanting to hear about your arrival in Rome.  Now what is there to say?  And how do you say it?  You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say?  You’re not even sure what to tell yourself about Holland, let alone your loved ones.


(Although you don’t know it yet, this will become a pattern.  How can you talk to people about Holland?  If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all!)

And their attempts at sympathy?
While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help.  When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell.  Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony.  So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

And what you keep thinking...

but can’t bring yourself to say aloud...

 is that you would give anything to go back in time a few months.

You wish you never bought the tickets.
It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.”  But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.


Although you don’t know it yet, this is the part that will fade.  After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled.  Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”



Each traveler has to find their own way out of the airport.  Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row:  Denial to Anger to Bargaining to Depression to Acceptance).  More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again.  You may be here for months.





But you will leave the airport.


You will.


And as you learn more about Holland,

and see how much it has to offer,

you will grow to love it.




And it will change who you are, for the better.


by Dana Nieder, 10/2010.   http://niederfamily.blogspot.com/2010/10/amsterdam-international.html

Welcome to Holland



    
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it,
to imagine how it would feel.
It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

Venetian Gondola



After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."



"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.





But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."



And the pain of that will never,

ever,

ever, 

ever go away...

because the loss of that dream is a very, very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special,
the very lovely things ...
about Holland.





by Emily Perl Kingsley




Thursday, September 30, 2010

What is life like for a child with Down syndrome?

Often, when people ask me "Do you have children?" or "How many kids do you have?" that usually ends up with me talking about my kids...which often leads to me mentioning that one of our twins has Down syndrome.   That bit of information usually results in an "Awhh"  from them.  Which really is their way of saying "too bad".  Can I tell you how much I HATE that!!!!! 
When I think of Braden and his life I never think "Awhh". 
Never.
Ever. 

People are always concerned with what kind of quality life could he have?  And I have to tell you --- he has the same quality of life that each of my other kids have!  He lives in the same home, goes to the same places, eats the same food, has the same pets.  I know what they mean... is it so hard to live with this condition that they would never want to live a life like that.  Like it would be a life not worth living. 

But I think your quality of life doesn't boil down to what you know or what career you have.  What you own or the number of zeros in your bank account.


I think it is about how you feel each day as you lay your head down to sleep at night.  I think it is about what made you smile that day.  Who loved you and who did you love.  It's about ice cream and rainbows.  Swimming and swing sets.  Having some one to kiss your boo boos. I think it's about sledding and hot chocolate.  Campfires and s'mores.  I think it is about snuggling under blankets and watching your favorite movie.  I think it's about throwing snowballs and eating snow. 

I think it is about


being nutured


and belonging to a family



about being adored



and celebrated




It's about feeling the salty sea breeze



and splashing in water til your soaking wet



It's about enjoying your favorite foods



and cheering for your favorite team


It's about special outings to the zoo


and building sand castles



It's about dressing up in cheesy, homemade Halloween costumes


and reading a good book


It's about driving your truck in the sandbox


and saying your prayers


It's about slides


and brothers


and rock climbing


and holding a newborn



It's about having trick candles on your birthday cake



and having best friends



So, I say there is no "Awh" here.  Nothing to be pitied or felt sorry for.
 
What is life like for a child with Down syndrome?
Take a look at his face.

Take a look and see.

I see happiness.
and love.
and fun.
I see a life definately worth living!

Monday, September 13, 2010

My Heart

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.


You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?


The slightly broken, definitely bruised one?






Yeah, that’s my heart.



My slightly-broken, definitely-bruised heart.



Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…



You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….



You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…



But regardless of what you see, what you think, or what you believe, this is what you should know:



I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.



Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.



copied from: 
http://www.thecrackandthelight.com/2010/08/open-letter-to-all-professionals.html?spref=fb

Tuesday, September 7, 2010

Big Kids head back to school!

I'm not sure how I feel about my house quieting down?!  It's great to be able to have Greyson all to myself and he is able to have my undivided attention.  But I'm gonna miss the mess.  and the wrestling.  and the big afternoon pool parties.  and jammy days.  and half done projects sitting all over the table.  and bikes thrown in the yard.  Oh we still have the weekends, I know.  But I love the summer with all my kids home everyday!  However, it is that time of year and so off they went - with their new tennys, lunchbags and backpacks - back to school!

Allie starting her sophmore year - yikes - how is that possible?!




Cameron, Braden and Grant obliging their mama with some picture taking!


Braden starting 3rd grade!


Grant also starting 3rd grade (and waiting on the bus)!


Cameron starting 5th grade!


What a crew!



Here comes the bus!


Off they go!

Wednesday, August 25, 2010

The "R" Word




People Who 'ARE'

By: Dave Hingsburger

It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.


People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?


It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.
The people who 'ARE' what the 'R' word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.


They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Friday, August 13, 2010

A discovery!


Is there anything cuter




than a baby





finding their




BELLYBUTTON?!

Friday, June 25, 2010

Bottle Baby

One of my greatest pleasures in life is sitting down with my baby (even though he, at 14months, is entering the land of toddler time - when your the youngest of 5 you will always be the BABY) all snuggled up in his soft jammies, smelling fresh and ready for bed, and giving him his bottle. 




It's like the perfect break from everything that needs done. 
It's cuddle time.  Hand holding time.  Relaxed and sleepy time. 
Oh - I just love it. 




And even though he's been on all table food since 9 months and loves his sipper cups - I am having such a hard time packing up these bottles, donating them, or throwing them out.  It will be the end of an era. 
No more bottles in this house. 
But like I said... I'm not ready. 



So, bottle time in this house will
continue for a little while longer. 
And I'll love every single minute of it!

Saturday, June 5, 2010

Baby love!

These have to be some of my very favorite pictures of all times of the 4 oldest kids! 




Allie was holding Grant and Cameron just had to do what his big sister was doing.  Luckily for him we had twins!  So he sat right down and held Braden. 








Can't you just see in Cameron's eyes how much he loves Braden?!



I'm so happy to have captured these sweet moments between my kids.

Tuesday, May 25, 2010

Monkeying around at the Zoo!

This past weekend we enjoyed an evening at the Columbus Zoo.  The Down Syndrome Association of Central Ohio had their annual meeting and picnic there as an after hours event.  The weather could not have been nicer - it was around 72 degrees and sunny!  The venue was beautiful as we ate dinner along the river with the occasional sailboat drifting by.  Plus, the zoo was closed to the public so we had the entire Zoo to ourselves!  Really, it was one of the nicest evenings out we've had this spring.  The kids were cooperative, happy and helpful.  The planets must have been aligned! :)  Here are some photos from the evening:

Allie hanging out in front of the flamingos


Cameron and Grant by the penguins


Braden dragged his sock monkey "Monkey M" everywhere with him


our zoo at the zoo!


Allison



Ok - Greyson seemingly not so happy at this moment!


Cameron


Allie with the stinky penguins!


Greyson looking way cute (and tiny) looking at the fountain



Wonder if they paid extra to have these sailboats drift on by?!



Grant


Braden with those same stinky penguins



Allie at the fountain