Tuesday, January 29, 2013

Toy-FULL Tuesday: Bottle Holder

Our little bees aren't as independent as most kids... and feeding/drinking becomes a huge concern for many reasons. Some of our kids try their darndest, showing honorable displays of determination, in helping do things for themselves... but oftentimes not quite getting themselves together enough to do it alone.

I'll speak from experience in that my own little man went through periods that he would try to self feed via spoon and his beloved silicone spout Nuby cups. He would even grab his cups by the handles... and hold his spoons himself. What a glorious mess he would always make, but that mess was the best!

I stumbled upon this product via Pinterest (if you're on Pinterest, my personal account has an entire board established for all great things that are foundation related... check it out HERE, but not too intently so I can continue to snag up some more readers with the gems of info I'm finding there!)

AND, the best news is that it's available for purchase at Diapers.com... an affiliate with iGive.com who will donate a whopping 0.8% of your purchase to Global Hydranencephaly Foundation once established. Sign up to make donations with many of your online purchases at HUNDREDS of stores by clicking HERE

Here it is... so simple, yet SO great!! If you buy one, let us know how it works for your little ones:

but it now, HERE

Monday, January 28, 2013

Bee-worthy Share: Siblings



I'm sure I've written here about this before, it's always been a huge concern of mine. Brayden has two older sisters. They were 3 and 6 years old when he was born and diagnosed with hydranencephaly... we have often been criticized for being so open about his prognosis with them, they knew everything that was going on every step of the way. People have told us they don't need to know the details, that they didn't need to know will one day die. How else would you recommend handling a situation where you are told to take your child home from the hospital to die in days? We got 4 years and nearly 5 months of joy. We have no regrets...


Siblings of children with complex medical conditions have a rare set of challenges themselves... oftentimes overlooked. My girls have encountered they same nasty looks and comments that I have as a parent. They have most often showed greater strength than I have in those situations... they have come out on the "other" side, remarkable little ladies.

From those challenges come a greater breed of individual... one that is more caring, compassionate, loving, and accepting. 

Our friend Jo Ashline at "Sweet Dose of Truth" wrote about this very topic a couple days ago. While her son is on the autism spectrum, the relation still rings true:

No Pity Parties Please for My Son and His Special Needs Brother
by JO on JANUARY 26, 2013

He hasn’t heard the words yet

but I have.

“I feel so sorry for him,” they’ve said,

right to my face,

their tones casual, as if they’ve just announced their coffee is stale instead of making unsolicited assertions about the well-being of my youngest son Ian.

He hasn’t seen the pity in their eyes, too busy living the over scheduled, exciting life of a 9-year-old boy,

but I have.

It fills their pupils as they watch him interact with his autistic brother, watch him guide him gently across the playground, redirect him in the store, protect him from dangers invisible to their untrained eyes.

But if they knew what I know,  if they saw what I saw, if they felt what he feels for his older brother Andrew, they would not feel sorry for him.

They would feel envy and wonder how it was they never had the opportunity to experience that kind of relationship for themselves.

Brothers.

Theirs is a love unblemished by society’s expectations of what siblings are supposed to be for one another.

Theirs is a bond that was birthed from instinct, and built on trust, and turned into something bigger and brighter than I could ever attempt to describe.

As individuals they are unique, amazing human beings.

Together they shine pure and true and I can just imagine what the moon and the sun must think when they look down, only to be blinded by the light their love creates.

I worry about them both,

my sons.

I worry about them for different reasons, sometimes in different ways.

Ian, with a heart of a lion.

Andrew, with the innocence of a lamb.

I worry about the typical things a mother worries about, and then I worry about the things only a parent of a child with special needs would understand.

But the one thing I will never, ever have to worry about is whether or not they love each other, whether or not they were destined to be together, whether or not one deserves to be pitied because of the other.

Siblings of special needs kids have a unique set of circumstances and challenges to say the least, but their lives are also filled with the kind of experiences and expressions of love that exemplify what human nature could look like if we all stood still long enough to give a damn about someone other than ourselves.

I’m not trying to sugarcoat it or throw confetti in an attempt to camouflage the realities they both live with.

But I’m tired of those pity parties no one asks permission to throw my younger son, parties I will inevitably have to clean up after when he finally catches on that people think his brother is a burden.

They’re brothers; chosen by Chance, Fate, The Good Lord Himself (it really doesn’t matter to me).

They fight.

They share.

They laugh.

They’ve even been known to bug the crap out of one another on several occasions.

They do all of these things and more and I’m often left laughing and crying and blowing snot bubbles out of my nose when I’m in their presence.

Mostly though, I’m left thinking that I’m the luckiest mom in the world and that the most important job I have is to make sure I don’t do anything to screw either one of them up.

And if I ever catch myself wondering if it could possibly get any better between them, all I have to do is watch this video of Spencer Timme and his autistic brother Mitchel, because these brothers are my boys ten years from now.

Seems to me, the best is yet to come.

Thursday, January 24, 2013

Thankful Thursday: Make a life!


This was shared by one of our hydran-angel families, who also happens to be an amazing family with 12 children (and counting). You can follow them along on their journey at their Facebook page His Hands His Feet Today... meet and "bee" Selah!

Photo: This morning Mark Batterson (pastor, author, speaker) sent out an email to his listserve- it's copy and pasted below.  It struck me so deeply because it was regarding the word "Selah".  As you may or may not know, 2 1/2 yrs ago we adopted a little girl who was born without a brain - we named her Selah Hope.  She only lived 55 days, but like Josiah, she rocked a lot of people's worlds!  These babies are a special gift from God like no other.  They have a lot to teach us ... and so we agree with Mark ... this year's word is "Selah"!   Read on and be blessed!

********************
I’ve read two books in the past two weeks that encourage choosing ONE WORD for the year.  One is titled One Word that Will Change Your Life. The other is My One Word. I’ve spent several weeks drilling down on this.  I started out with a laundry list. Then I got it down to a short list.  Then I thought I had landed on the word margin, but I changed my mind.  My 2013 word is selah.

I think it’s one of the most mysterious words and important words in Scripture. It appears 74 times in the Hebrew Scripture. To be honest, biblical scholars aren’t 100% exactly what it means.  And that’s why I like it. Here’s my take on it.

It probably refers to a musical pause.  And I like that concept, even though I’m not a musician.  Like music, our lives have a time signature.  And we need to strategically rest so that we keep in harmony, in melody.

Here are some random takes on selah.

It’s change of pace + change of place = change of perspective. It’s being 100% present–listening with your heart, thinking with your soul, and laughing from your gut.  It’s living each day like it’s the first day and last day of your life. Or in the words of Martin Luther, it’s living like Jesus was crucified yesterday, rose today, and is coming back tomorrow!  It’s enjoying the journey.

It’s considering the lilies–Matthew 6:28. It’s numbering your days–Psalms 90:12. It’s redeeming the time–Ephesians 5:16.  It’s being still and remembering that He is God–Psalm 46:10. It’s casting your cares upon Him–I Peter 5:7.

At some point, most of us stop living out of imagination and start living out of memory.  We get into a relational, spiritual or emotional rut. Selah is the solution.  It’s the margin we need to daydream.  It’s the one day in God’s courts that is far better than the thousand days spent elsewhere. That is when and where and how we dream God’s dreams.  The more we pray, the more we dream. And the more we dream, the more we have to pray! Selah.

According to Blaise Pascal, the 17th century French philosopher, “All of man’s miseries derive from not being able to sit quietly in a room alone.” Corrie Ten Boom said, “If the devil can’t make you bad he’ll make you busy.”

One of my defining moments last year was our anniversary trip to Mackinaw Island. We sat on the porch of the Grand Hotel and let the world pass us by for a few days!  That’s selah.  There are no motorized vehicles on Mackinaw.  Just the clip-clop of horses hooves!  That’s selah.

By personality, I’m driven.  And I’m certainly not advocating for anything less than working like it depends on you.  But you also need to rest like it depends on God. The Sabbath is selah.  It’s reminding yourself that God is the one who keeps the planets in orbit.

Selah is resting in God’s mercies the same way you put your full weight in a hammock and swing back and forth on a beautiful spring day.

Selah is controlling your calendar so your calendar doesn’t control you. Selah is Spirit-led spontaneity. Selah is the willingness to go out of your way.

Life isn’t measured in minutes. It’s measured in moments. It’s the difference between chronos and kairos.  Don’t make a living. Make a life!

Selah.

"This morning Mark Batterson (pastor, author, speaker) sent out an email to his listserve- it's copy and pasted below. It struck me so deeply because it was regarding the word "Selah". As you may or may not know, 2 1/2 yrs ago we adopted a little girl who was born without a brain - we named her Selah Hope. She only lived 55 days, but like Josiah, she rocked a lot of people's worlds! These babies are a special gift from God like no other. They have a lot to teach us ... and so we agree with Mark ... this year's word is "Selah"! Read on and be blessed!"

********************
I’ve read two books in the past two weeks that encourage choosing ONE WORD for the year. One is titled One Word that Will Change Your Life. The other is My One Word. I’ve spent several weeks drilling down on this. I started out with a laundry list. Then I got it down to a short list. Then I thought I had landed on the word margin, but I changed my mind. My 2013 word is selah.

I think it’s one of the most mysterious words and important words in Scripture. It appears 74 times in the Hebrew Scripture. To be honest, biblical scholars aren’t 100% exactly what it means. And that’s why I like it. Here’s my take on it.

It probably refers to a musical pause. And I like that concept, even though I’m not a musician. Like music, our lives have a time signature. And we need to strategically rest so that we keep in harmony, in melody.

Here are some random takes on selah.

It’s change of pace + change of place = change of perspective. It’s being 100% present–listening with your heart, thinking with your soul, and laughing from your gut. It’s living each day like it’s the first day and last day of your life. Or in the words of Martin Luther, it’s living like Jesus was crucified yesterday, rose today, and is coming back tomorrow! It’s enjoying the journey.

It’s considering the lilies–Matthew 6:28. It’s numbering your days–Psalms 90:12. It’s redeeming the time–Ephesians 5:16. It’s being still and remembering that He is God–Psalm 46:10. It’s casting your cares upon Him–I Peter 5:7.

At some point, most of us stop living out of imagination and start living out of memory. We get into a relational, spiritual or emotional rut. Selah is the solution. It’s the margin we need to daydream. It’s the one day in God’s courts that is far better than the thousand days spent elsewhere. That is when and where and how we dream God’s dreams. The more we pray, the more we dream. And the more we dream, the more we have to pray! Selah.

According to Blaise Pascal, the 17th century French philosopher, “All of man’s miseries derive from not being able to sit quietly in a room alone.” Corrie Ten Boom said, “If the devil can’t make you bad he’ll make you busy.”

One of my defining moments last year was our anniversary trip to Mackinaw Island. We sat on the porch of the Grand Hotel and let the world pass us by for a few days! That’s selah. There are no motorized vehicles on Mackinaw. Just the clip-clop of horses hooves! That’s selah.

By personality, I’m driven. And I’m certainly not advocating for anything less than working like it depends on you. But you also need to rest like it depends on God. The Sabbath is selah. It’s reminding yourself that God is the one who keeps the planets in orbit.

Selah is resting in God’s mercies the same way you put your full weight in a hammock and swing back and forth on a beautiful spring day.

Selah is controlling your calendar so your calendar doesn’t control you. Selah is Spirit-led spontaneity. Selah is the willingness to go out of your way.

Life isn’t measured in minutes. It’s measured in moments. It’s the difference between chronos and kairos. Don’t make a living. Make a life!

Selah.