Given a name

Twelve years ago today, we were given a name.   The name of the disease with no cures or treatments that doctors ensured us would take the life of our daughter by the age of two.  The name that invited us down a path that no parent dreams about going. The name of the disease that had stolen her ability to laugh, to smile, to roll, to sit up, to sleep thru the night, and to make eye contact.  The disease that had caused tens of thousands of seizures and countless hospital stays.  The name of the disease that would take away her ability to swallow, enjoy food, and to organize her movements.  The name of the disease that makes the common cold a dangerous battle. The disease that has caused us more sleepless nights than I can recall. The disease that introduced us to the world of therapy, medical equipment and specialty doctors. The name that gave us a care team of several specialists including palliative or comfort care. The name that would force us to completely rely on friends and family in so many circumstances because two hands are never enough.  The name that introduced us to having nursing care in our home. The name that would give us entry into the special needs community, birth to three, and IEPs. The name that opened our eyes to handicap accessibility and how one size never fits all. The name of the disease that has had me bedside, night after night, praying that she would turn the corner, that the breathe I see would not be her last. IMG_4471

This morning, my husband gave thanks for this day twelve years ago, for the name of the disease that brought us completely to the end of ourselves and caused us to rely fully on our Lord and Savior.

The name of the disease that would cause us to reevaluate all that was important to us and appreciate time together.  The name that would cause us to give thanks for the little things like an appropriate smile because they are such an amazing gift.   The disease that would teach us that some of the greatest teachers can teach without saying a word. The name that would be a label on medical records but never a definition of who she is. The name that would introduce us to an amazing world of some of the most selfless and loving doctors, nurses, teachers and therapists. The name of the disease that would teach us what real love looks like. The name that would continually open our eyes to the love of the church and what it means to be the hands and feet of Jesus. The name of the disease that lead us to the cross and gave our family life.

How big is our God?

Psalm 28:7  The Lord is my strength and shield. I trust him with all my heart. He helps me, and my heart is filled with joy.  I burst out in songs of thanksgiving. (NLT)