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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Friday, February 25, 2011

two in a week? well, i'm trying

Ridge got blood this week.  At the infusion "clinic" or room.  Which meant he arrived around 9 AM and got to come back home around 430 PM, which is still a long day. But much better than arriving at 9 AM and the blood not even getting there until 3 or 4 PM, bc THAT has happened before, more than once.  Which means we have to stay the night.

I am planning on doing a little packing and tidying up around here today if the kids cooperate....bc tomorrow, the hubs and I head out to see James Taylor.  Everyone can be excited for us, I'm excited!

I have had a heck of a week, to say the least.  Ridge is doing well, Sawyer is doing well other than we are totally in the back talk/rebellion stage (take 1 of it I am sure, I know even if it dies down, it will be back one day, as a teenager or whatever).  Nothing new with BDawg.  Nothing majorly new with me, just encountered some ridiculous stuff this week.   You know those things that just make your jaw drop, or make you think "Are you KIDDING me?"  Stuff like that.  Always super to deal with.

So at the culmination (I hope) of all of THAT crapola, I got this email...which I had read before but had not really READ well because I wasn't to that place yet, that place where I'd understand it.  And I can honestly say some of you probably won't understand it, simply because you haven't been in this position (and I am thankful that you haven't).  But this is a little bit of a glimpse into how our world has felt, and still feels so often.  It is a strange place to be, sometimes, our new world...and it is even stranger when you feel ready to step into your old world but don't exactly know how, and are met with some hesitancy and opposition and obstacles to that.  Some things you expect or at least they don't surprise you, but other times it feels like you are fighting a senseless battle, one that you didn't ask for.

Anyway, here is a small glimpse, of how our life sort of feels.  It is terrible and wonderful all at the same time, some days.  I have seen miracle after miracle and a God more faithful than any human, and I know that He has yet to fail us, and He will never fail us.  He has provided above and beyond all expectation, sustained our life, even if on some days we feel we are barely surviving.  He has been so faithful.  And if He has carried us through the valley of the shadow of death, I'm here to tell you, there is nothing my God can't do- even in the face of opposition.  And that is something no one can take from us.  He is the same. Yesterday. Today. Tomorrow. and Forevermore. ya go...our little 2 year vacation, and somewhat permanent one, to "Holland"

"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.

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.


Anonymous said...

Awesome "Holland" story! Thank you SO much for sharing!

Sara Elizabeth said...

That is a wonderful way of describing things. I hope you can enjoy you 'Holland' and still get a little taste of 'Italy' now and then. You kids are lucky to have such a great mom. Love your blog. Thanks for sharing.

Erin said...

You think of ways to explain so much in a way that other can understand. Not only about the disease, but God's word, motherhood, and many more! Thanks Alisha!