Could You Spell That Please? ~ 1 of 5

The Path That God Ordained
Could You Spell That Please? Facing the Diagnosis of a Rare Condition

by Debbie Taillefer

We were at the end of a long road of attempting to determine a diagnosis.  After much testing, prodding, poking, and more testing, we were finally at that moment of revelation.  I was concerned about what I was about to hear, yet greatly relieved to find out my child was not dying.  “We believe your daughter has a very rare metabolic disorder called, “Hypophosphatasia.”  I still remember sitting in my daughter’s endocrinologist’s office trying to wrap my mind around what was being communicated.  I clearly recall asking, “Hypo what?”  And, “Could you spell that please?”  Continue Reading…

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Not Every Battle Is Ours to Fight ~ 2 of 5

The Path That God Ordained ~ Not Every Battle Is Ours to Fight

by Debbie Taillefer

Most parents that have a child with any condition that involves research have had to advocate for their child.  This requirement is exaggerated in families that have children with a rare condition.  We are the pioneers in unexplored territory, along with hospitals, educators, therapists, dentists, pharmaceutical companies and researchers. Multiplied hours of phone time, writing, discussing, meeting, and working to be heard and understood is logged every day.  We labor to change laws, get assistance, raise funding and awareness.  Continue Reading…

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Mommy, Why did God make me this way? ~ 3 of 5

The Path that God Ordained

Mommy, Why did God make me this way? by Debbie Taillefer

One night as I was tucking my daughter into bed, she stared up at me earnestly, her eyes filled with grief.  She whispered, “Mommy, why did God make me this way?”  I was silent.  I could tell some trite answer would not suffice.  I was shaken as I faced the sober reality that my child expected me to give her a reasonable explanation that would satisfy her troubled spirit and make sense out of all of the suffering she had been through.  Continue Reading…

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Spreading His Wings to Shade You ~ 4 of 5

The Path that God Ordained

Spreading His Wings to Shade You (Rest, Yield and Wait) by Debbie Taillefer

It is the common reaction of mankind to seek to remove something that is difficult or uncomfortable.  When we get a headache, cold or flu, we seek a treatment, even if it is as simple as chicken soup.  The believer seeks to have God remove their plight as a remedy.  We know that He may employ the skills of a doctor, the science of a medication, or He may choose to heal the affliction.  The particular challenge in the beginning of our predicament was that there did not appear to be any doctors who could employ their skills or a medications to relieve or prolong the onset of symptoms.  Continue Reading…

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Such As Is Common to Man ~ 5 of 5

The Path that God Ordained ~ Such As Is Common to Man

by Debbie Taillefer

One of the temptations I have watched Jessica struggle with and overcome in her fight against HPP, is feeling all alone and that nobody understands.  How could anybody be aware of all the difficulties of HPP, if you have never had it?  I myself found it challenging at times to empathize and to see things from her perspective. Continue Reading…

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Childhood Diabetes ~ 1 of 4

Resting in God’s Sovereignty ~ Childhood Diabetes by Mary Silverberg

I have a wonderful husband and six precious children, three girls and three boys.  My oldest son is married to a lovely young woman, and they have a beautiful baby.  Many blessings have come to our home over the years, but we’ve had our burdens too. When our oldest son was just two years old, he was diagnosed with Type I or Childhood Diabetes.
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Overcoming Worry & Fear ~ 2 of 4

Resting in God’s Sovereignty ~ Overcoming Worry & Fear by Mary Silverberg

It is a frightful thing to witness your child having a seizure.  There is no doubt; it is a very real and perilous threat to his life. It’s not imaginary. It’s not an unjustified emotion, and that fear is meant for our good to help us deal with the situation quickly and effectively. Continue Reading…

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Trapped, 911 Rescue & Recovery ~ 3 of 4

Resting in God’s Sovereignty

Trapped, 911 Rescue & Recovery by Mary Silverberg

As I approached the scene an EMT, backed up by a police officer, was quick to block my path. “You can’t go near him. We think his legs are crushed, and if his blood pressure drops, he might not make it.” Continue Reading…

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Abiding in God’s Providence ~ 4 of 4

Resting in God’s Sovereignty

Abiding in God’s Providence by Mary Silverberg

I take great comfort in God’s providence.  He is good and kind, and a merciful God who only allows what is good to come my way (Romans 8:28).  I trust that He has an honorable purpose in sending diabetes into our lives. I accept it as from His hand, and He enables me to abide with this present affliction. He is how I do it. He is how I manage.  He is how I live, and move, Continue Reading…

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Our Gift from God

Our Gift from God by Kathy Hunter

A Third Little Blessing from the LORD     When John asked, “You wouldn’t want to miss a third little blessing from the Lord, would you?” What could I say?  We had 2 little girls and I had felt that was all we needed, because I only have 2 hands.  I told him if he guaranteed that there would be no more, I would have another.  So when our youngest daughter, Heidi, was 4 along came Matthew.  read more…

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