Hope is a Journey….

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I’ll Give You 56 Reasons

In honor of International Plasma Awareness Week!

Show Your Hope!

Many of you have probably never given blood donation much thought….
And if you haven’t….let me help put the importance of it into perspective for you:

If that isn’t enough….let me give you 56 reasons to get out there and give blood:

  1. 4.5 million Americans would die each year without life saving blood transfusions.
  2. Approximately 32,000 pints of blood are used each day in the United States.
  3. Every three seconds someone needs blood.
  4. One out of every 10 people entering a hospital needs blood.
  5. Just one pint of donated blood can help save as many as three people’s lives.
  6. The average adult has 10 pints of blood in his or her body.
  7. One unit of blood is roughly the equivalent of one pint.
  8. Blood makes up about 7% of your body’s weight.
  9. A newborn baby has about one cup of blood in his or her body.
  10. The average…

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Dear Disney…

As we surpass the 1 year mark for this ‘New System Introduction’ – I just want to RE SHARE this and keep it on the front burner. These changes are NOT acceptable for many in the disability community and many have chosen to go other places for their “Magical” vacations because of nightmare experiences with this ‘New System’ – Please share this post and help us be heard!

Show Your Hope!

Dear Disney,

I would like to take a moment and thank you for the joy you were able to give my children the last time we visited.

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I can’t begin to tell you how wonderful it was to see joy scribbled all over their faces….IMG_1079

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Last year, after a particularly tough time for all of us (medically speaking), my daughter had only one wish….to go to Disney and see the Villains during Halloween.  We scrimped, we saved, we planned – and our entire family went….it took a lot – but we made it happen for her.

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It was a magical time for all of us.

You see, vacations like these are truly gifts to us.  My family battles Mitochondrial Disease, Primary Immunodeficiency Disease, Autonomic Dysfunction, Seizures, Episodic Ataxia type 2/Familial Hemiplegic Migraine, and more.  Life is not easy here on our side of…

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To My Sunshine

My Dearest Sasha,

When you were a heartbeat within my own, oh the dreams I had for you….the plans I had for you…

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Never in a million years did my plans involve the quiet hum of hospital pumps,

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The urgent screams of the monitors intermittently interrupting our slumber as we count the hours til daylight,

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Counting breaths instead of moments….

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Some nights are harder than others…and tonight, I can’t help but weep for your tiny little heart….you see….I always thought that those precious lips would sing with joyful laughter, not cry out in fear or pain….

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Those eyes….I hoped they would only see the splendor of this earth, not pour out the hurt that overflows from within….

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Those ears….I prayed that they would only hear giggles and songs of happiness that swell from your heart – I never thought they’d be hearing the monotonous alarms going off next to your bed….

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I always hoped those tiny little toes would feel the warm sand or the cool water rushing around them…I never imagined that they instead would know the feeling of the adhesive of a pulse oximeter squeezing tightly…

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I always wanted those tiny sweet hands to hold your dreams…I never for one second thought that they would ever clutch starchy white sheets in pain…

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I always thought your arms would know only warm embraces….I never – for one second – thought that they would bear the scars of countless IV’s.

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My precious sweet sunshine…you should drift off to sleep in peace…I always thought that’s how things were going to be…you deserve that.

20140814_131112I can’t promise you that every tomorrow will be beautiful, peaceful, gentle, or merciful to you – as a matter of fact, my heart breaks a little more each and every moment that passes by – because a lot of your ‘todays’ have been pretty rough lately…but I can promise you that I will never stop trying to make it so your lips sing with joyful praise, your eyes see the splendor of this earth, your ears hear the giggles and songs of happiness that swell from within your heart, that your toes feel the warmth of the sand and the coolness of the ocean kissing them every chance we get, that your hands reach out to hold mine in peaceful moments as we carry your dreams together, that your arms would know more warm embraces, that your heart would know sweet peace…I would go to the ends of this earth for you – to give you that peace.

Lord only knows why He chose you to live this life, to walk this path, to know this suffering – and I struggle with that…but I TRUST in Him and I TRUST that He is with you, that He will never leave or forsake you, that He will mend you in the broken places and make you stronger.

Someday, my Sweet Sunshine, we will all understand why things have to be the way they are – but until then, I will rest in the knowledge that our God is Bigger, Stronger, and Mightier than anything that can happen to us.

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I love you to the moon and back….

Mom

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