The “New Chapter” Began – the first year.

~   We had our little girl back home . . . but boy oh boy did things change.   ~

The calendar quickly filled to overflowing:

Doctor visits,

blood work scheduled weekly,

medication routines,

learning how to cope with seizures,

learning about therapy

–    –  what was  available, when, where, how often, what would it do to help her?

–    –    –    no development . . . small development . . . set backs . . .


Days ran into weeks, ran into months, turned into years. Relentless, unending questions. WP_20140503_00220140503121843

Our poor son, bless his heart, at age eight ended up being a co-caregiver.

He learned how to handle her when a seizure happened.

He learned how to properly hold her to help calm down after an exhausting episode.

He learned about medications.

He learned about exercises.

He learned about life – the hard way.

He never complained! He loved his little sister, and nothing was too difficult for him to pitch in and help with!

As she grew, we discovered that half of her brain was ‘translucent’ – plain and simple – it had vanished, eaten away by whatever it was that began this whole nightmare in our lives. We were told that she would NOT live to be a year! So at 11 months (silly me, believing what the doctors said, even though I knew that God gave her back to me, why would He allow her to die?),we had portraits done. This one is the largest and it still hangs in my bedroom today:



It had hung in the dining room of my in-laws for many years before they went Home to be with the Lord. It is really quite large, but we felt the need to have it as a reminder – always – of our sweet Mariah.

I had dreams over and over again about planning her funeral. Little white casket with rosebuds on it. Deep pink satin for her  to lay. A beautiful wedding gown for her to be  dressed in to meet her Bridegroom – Jesus. (Macabre, I know, but that was my life for several months approaching her 1st birthday.)

Her birthday came and went. Sweet little thing. You could almost catch us holding our breath waiting for the inevitable. But – praise be to God – it never came.





(c) klh 4Given Ministries

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