Thursday, May 15, 2014

A face of Cystic Fibrosis....

I have a beautiful niece.
Maryanna is loving and kind. She is smart and funny.
She is special.
She is the first niece I ever had!! Born to my "favorite" brother and his wife!! I was only 9 years old when she was born and I remember going to see her in the hospital in Virginia (it was a very long drive!)....

She grew up.

I didn't get to see her much while she was growing up. My brother lived about an hour away from us. Most summers she and her sister Linda (and later her brother, Will-Paul) would come and visit for a week or two at my parents house, but by then I was busy in my teens and didn't have much time to spare for my "little" nieces and nephews.
Eventually, her parents moved to Jacksonville, Florida (4+ hours away!!) and that is where she "grew up".

She met a boy. Fell in love. And got married.
She was a beautiful bride!!!
My little boy was her Ring Bearer. He was so cute in his little white tux!!
Sweet memories.

She married Josh.

Josh is a nice guy.
She says he makes her laugh and I love that about him. He is funny, and sarcastic, and witty, and has amazingly blue eyes.
He loves her, and really, that's all I have ever wanted for her.  To love and be loved.

Josh has Cystic Fibrosis.

  "Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. 
It is a life-threatening disorder."

You can see more about what it is here>>>
"Currently, there is no cure for CF. However, specialized medical care, aggressive drug treatments and therapies, along with proper CF nutrition, can significantly lengthen and improve the quality of life for those with CF"

He has been in and out of hospitals his whole life and is in the hospital right now.
Fighting for his life.
And my niece, Maryanna, is right there fighting with him.
His lung had collapsed and he has tubes attached and machines helping him breathe. It is scary and awful to think that his disease could claim him and Maryanna would be left a widow way before she should.

She has a strong faith in God and I am so very proud of the way she is handling this situation. God does have a plan for her and for Josh.
God is good.
ALL the time.
Even when out circumstances seem bleak and hard.
He is our rock and our fortress. A mighty help in time of trial.

The Secret Place

"I've found a secret place of comfort and release
a special place of healing, a quiet place of peace.
And every one who dwells there finds rest beneath God's wings.
in the shade of His pavilion new strength He always brings.

I find hope, I find grace, far away from the world's embrace.
He gives me rest, He keeps me safe, I find His strength,
I seek His face In the secret place.

With every trial He brings, my Lord will make a way
to strengthen and protect me, to help me each day.
He leads me through the valley to draw me closer still,
knowing even in the shadows I find His perfect will.

I find hope, I find grace, far away from the world's embrace.
He gives me rest, He keeps me safe, I find His strength,
I seek His face In the secret place."

Such a great song!!!

Psalm 91:1 - 5
"He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty.
I will say unto the LORD, He is my God; in him will I trust.
Surely he shall deliver thee from the snare of the fowler, and from the noisome pestilence.
He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall by thy shield and buckler.
Thou shalt not be afraid for the fire by night; nor for the arrow that flieth by day."

Tell those you love that you love them.

Say, "I love you".

Don't lose a moment of time with unnecessary stuff.
Fill each day with purpose and show the love you have.
We are not guaranteed tomorrow.
Make each day count.


PS...Prayers appreciated for my niece and for her Josh!!!!

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