There was a time during our journey to get our daughter better that I felt utterly and completely alone. So much so that one evening I screamed—yes screamed—toward the heavens, proclaiming my anger toward God for not healing our daughter. Afterward, slumped on the floor sobbing, I had what our pastor called a "pivotal circumstance," where God was doing something powerful in me.
In chapter six of Good Morning, Beautiful, this event is described in detail, but here the point I want to make is that something inside of me changed that day. The pimary thing was that I realized that we are not in this alone. Our Creator—the One who fearly and wonderful crafted us, according to Scripture—is here right now with you and me.
When I pulled myself together and stood on my feet that day, I felt empowered and renewed. I dropped the “poor me, why me” attitude and began to advocate for my child. Why? Because I realized that it wasn’t about me, and all I had to do was take the step of faith and He would be right there.
In Jolene Philo’s new book, A Different Dream for My Child, the same message is woven intricately through the stories of others who have already traveled the road of hearing the doctor say, “Something isn’t right.” Hearing the stories of others who share your experience can be a great comfort when you feel isolated by circumstances.
If you are the parent of a child with special needs or an illness that seems insurmountable, don't forget—you are not alone.
Showing posts with label advocate. Show all posts
Showing posts with label advocate. Show all posts
Friday, April 2, 2010
Wednesday, March 10, 2010
Advocates in a foreign land
Like most families dealing with seizures, we had no book of guidelines or tutorials to refer to. As our child's parents, we had to become advocates in a foreign land—the land of medicine. I don't know about you, but we did not have the training for this sort of position. Nope, no background, well, other than high school Biology and Health class. And to be honest, I don't even remember most of that.
In order to be the best advocates for our child in this unfamiliar land, we had to learn about Christina's condition. We researched, prayed, and asked anyone we came into contact with if they knew anything about what we were going through. I read as much as possible about the diagnoses that were inked onto medical charts with our child's name at the top.
Reading through medical jargon was, for me, an act of bravery. I was totally intimidated, but my struggling daughter motivated me onward. I learned the meaning of some words that I still cannot pronounce. And this small act of advocacy provided the knowledge my husband Larry and I needed in order to make one of the most important decisions of our lives.
That decision brought us to the part of our story from which the previous excerpt was taken from Good Morning, Beautiful and now continues below:
Christina moved her head and cried softly. I realized her ears were feeling the pressure change as the plane began to descend. Touching her cheek, I whispered softly, “It will be okay.” Feeling a contradiction in my own words, I knew how serious her condition was and that we didn’t know why she was ill, or how to help her.
The skies remained clear as millions of stars traded places with the lights of the Minneapolis-St. Paul area. As we descended, streets and highways became visible, illuminated by lighting. Looking similar to a miniature racetrack, vehicles moved in different directions.
When the flight attendant came by to check our seatbelts, she offered words of encouragement, citing Mayo as the best place in the country. “They know what they are doing there. We wish you and your daughter the best of luck,” she said empathetically.
A feeling of urgency came over me, for it wasn’t luck that was needed. In fact, it was the farthest thing from Christina’s need. For a moment I hesitated, almost afraid of what the reaction might be, until I could contain it no more.
“Don’t forget to think of her when you pray,” came rolling out, announcing the hope that was burning, dimmed by a tempestuous wind, but still lit.
What we needed for our Christina was a miracle.
One thing was certain we were in the fight of our lives, for her life. With this, just one of the squalls, of a violent storm with the worst yet to come. It would be the storm that would bring us to our knees in desperation and jubilation.
In order to be the best advocates for our child in this unfamiliar land, we had to learn about Christina's condition. We researched, prayed, and asked anyone we came into contact with if they knew anything about what we were going through. I read as much as possible about the diagnoses that were inked onto medical charts with our child's name at the top.
Reading through medical jargon was, for me, an act of bravery. I was totally intimidated, but my struggling daughter motivated me onward. I learned the meaning of some words that I still cannot pronounce. And this small act of advocacy provided the knowledge my husband Larry and I needed in order to make one of the most important decisions of our lives.
That decision brought us to the part of our story from which the previous excerpt was taken from Good Morning, Beautiful and now continues below:
Christina moved her head and cried softly. I realized her ears were feeling the pressure change as the plane began to descend. Touching her cheek, I whispered softly, “It will be okay.” Feeling a contradiction in my own words, I knew how serious her condition was and that we didn’t know why she was ill, or how to help her.
The skies remained clear as millions of stars traded places with the lights of the Minneapolis-St. Paul area. As we descended, streets and highways became visible, illuminated by lighting. Looking similar to a miniature racetrack, vehicles moved in different directions.
When the flight attendant came by to check our seatbelts, she offered words of encouragement, citing Mayo as the best place in the country. “They know what they are doing there. We wish you and your daughter the best of luck,” she said empathetically.
A feeling of urgency came over me, for it wasn’t luck that was needed. In fact, it was the farthest thing from Christina’s need. For a moment I hesitated, almost afraid of what the reaction might be, until I could contain it no more.
“Don’t forget to think of her when you pray,” came rolling out, announcing the hope that was burning, dimmed by a tempestuous wind, but still lit.
What we needed for our Christina was a miracle.
One thing was certain we were in the fight of our lives, for her life. With this, just one of the squalls, of a violent storm with the worst yet to come. It would be the storm that would bring us to our knees in desperation and jubilation.
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