The Making of a Hospital Mom

"When the Unthinkable becomes your Reality, 

you have two choices: Regret or Redemption"  ~ The Hospital Mom

On January 27, 1999 the unthinkable became our reality. Our pink and precious daughter of 6 months suffered a massive mid-cerebral arterial stroke. The main artery between her spine and her brain had become blocked from a blood clot at the juncture where it splits into the left and right hemispheres. Worldwide, 1 in 25,000 live births will suffer a stroke each year.  

The years that have followed have been tumultuous. Doctors, therapies, drug studies, seizures, and surgeries. There are times where I felt I have earned doctoral degrees in Physical Therapy, Occupational Therapy, Pharmacology, Neurology, Developmental Pediatrics and Child Psychology from the Mother's Medical Institute.

At any moment I can walk into an emergency room and speak in medical terms with any nurse, doctor or specialist. Pity the poor nurse who argued with me that my child could not possibly have suffered a stroke. "Children do not have strokes," she said with condescending authority.

Ashley was having seizures and I walked into the emergency room in Tulsa, Oklahoma telling the medical team what she needed. I had been on the phone with her neurologist and we agreed I could transport her to the hospital quicker than an ambulance could find me - plus I was already in the car and on my way - and he would meet me there.  

My dad met us at the hospital and while he entertained my 25 month old daughter, I politely asked the nurse to step outside the room. "Never tell a parent in front of a child that they are making up a diagnosis, especially one this horrid," I said with the indignation of a mom who was living the unimaginable. The nurse continued to argue with me as the doctor approached and I told her to go pull up the MRI and CT scans from the past 2 years. "I will," she assured me and stomped off, hands on her hips. And she did. The neurologist arrived, treatment began and later, he brought a very apologetic nurse into the room and assured her that infants do indeed have strokes.  

That night I realized that parents must be advocates for their children. As the years passed, I learned most parents are so intimated by the medical process, hospital personnel and are simply overwhelmed by their situation that they are afraid to speak up. They will accept whatever is told them and not ask questions, advocate for help or seek solutions for their children.  

I have worked with families in numerous settings - adult education centers, as a parent advocate in schools, at church and as a chaplain. The redemption of Ashley's story is in sharing the wisdom, education and experiences we have gained in this struggle.  

Parents of chronically medically challenged children are more likely to divorce, have extra-marital affairs and battle addictions. As their world centers around their children, hospitals and the medical world, they withdraw into themselves and face depression while living in a constant state of regret - the "would of, could of, should of" state of mind.  

Our purpose is simple:

         To provide Hope and Humor to Families of Chronically Medically Challenged Children. 

The ways we do that are numerous:

         Website - Hospitalmom.net

         Facebook - Hospital Mom

         Writing for Blogs like this one and at HospitalMom.net

         Answering Emails of Hurting Families at      
                    Kim@hospitalmom.net

         H.O.P.E. Delivery Bags for Caregivers at Hospitals

Currently, I am writing a book to bring Hope to Families. The following is an excerpt from "Beautifully Complicated," the story of redeeming the hurt in our lives in order "to Know HIM and Make HIM Known."

from BEAUTIFULLY COMPLICATED

“This is my Father’s World

and to my listening ears

    All nature sings and ‘round me rings

The beauty of the sphere.”

Eighteen years ago I first sang this song to my infant baby girl. Born early - eager to change our world. Born tiny - proving size does not matter. Born the baby sister - her brother in love with her before she was before. Born a surprise - her daddy named her the moment he saw the positive pregnancy test. 

“This is my Father’s World

I rest me in the thought

   Of rocks and trees; of skies and seas

His hand the wonders wrought.”

Fifteen times I have laid her on an operating table and sang those words in her ear as she drifted to sleep. Sometimes easily.  Sometimes fearfully, gripping my hand.  Sometimes I have had tears in own voice and many times, I have sang to a room full of surgeons and technicians who came to the operating theater because they had heard of this family who sang before surgery and wanted to experience the peace that is in the room.

Three times I have sang this hymn in the surgery waiting room because that facility did not allow me to accompany her into the operating room.

Eighteen surgeries.  

        Thousands of miles driven in rain, snow, sunshine and shadow. 

        Months our family has lived apart - separated by 8 hours and the Rocky Mountains.

        Dozens of professionals. Hundreds of medications. Thousands of phone calls to doctors.  
Ten Thousands of hours in research by specialists and parents.   

        Millions of prayers raised by family, friends and even strangers.

This indeed is My Father's World. The Unthinkable will happen because this world is in a fallen state where the sin of mankind has brought heartache. Yet God redeems the pain of our fallen state to help each other. When we help each other that pain becomes bearable, even manageable as we allow Him to reveal His glory as we live other lives for others.  

           “This is my Father's world. 

                    O let me ne'er forget 

              that though the wrong seems oft so strong, 

                   God is the ruler yet. 

            This is my Father's world: 

                   why should my heart be sad? 

            The Lord is King; let the heavens ring! 

                  God reigns; let the earth be glad!”

Are you living the Unthinkable?  

Where you never dreamed you would be?

Are you living in Regret - depressed, lonely, self-pity -  or in Redemption?

As you listen to the song below, go to God in Prayer and 

ask the Father -

"How will you redeem the pain in my life?  

Who can I serve?"

"This is Our Father's World"

Our Favorite Version! Enjoy!

  Amy Grant "This Is My Father's World"