This is a special site for a special boy.
Please feel free to pray for him, ask about him, and connect with him through this blog!

Tuesday, June 10, 2008

A Purpose

This blog is here to share how God has taken care of Brother, to keep everyone updated on his life, to request prayers on his behalf, and to encourage, uplift, and inspire.

Some history for those who aren't familiar with Ryan's life:

Ryan was born on August 1, 1996. A beautiful baby boy, he was eight pounds and nine ounces with flaming red hair. But beneath this healthy exterior, he had major birth defects that were irreversible. Since his birth, God has brought him through more than twenty major brain surgeries, serious chemical imbalances, and countless seizures that he contends with daily.

Ryan has a rare condition called Dandy-Walker Syndrome. This disorder causes the patient's brain to be deformed from its generation in the womb. Complicating this, Ryan has a portion on the left side of his brain that never developed (Schizencephaly). Further, he has another condition called Hydrocephalus, where the brain and spinal courd do not circulate the body's spinal fluid correctly, causing pressure on the brain, and if left untreated - death.

From day one, Ryan had drainage tubes placed inside his brain to control the spinal fluid, medication to control seizures, and countless other treatments for a poor respiratory system. He cannot walk or talk. He does not eat by mouth because he is unable to swallow properly. He requires assistance at night just to breathe. Doctors have said from the beginning that Ryan would be vegetative and predicted a lifespan of no more than 9 months.

That all sounds really sad, right? Well, hold on to your seats because here's the "flip-side." Ryan is not vegetative. Instead, his little personality and wit bubble over when he smiles. Through the power of the Almighty, he has accomplished more in his almost thirteen years than most do in a lifetime. They are as follows:

  • Author: He has written a chapter in the lives of everyone who takes the opportunity of getting to know him.
  • Actor: He has played a heart-wrenching role that causes us to thank God daily for things often taken for granted.
  • Sculptor: He has molded his brothers and older sister into people with unusual compassion and understanding for others who are "different."
  • Architect: He has framed a faith within me that would not have existed without him.
  • Escape Artist: Ryan has defied death numerous times.

Awhile back, Ryan was placed in Hospice care. This is a service for people who are at the end of their lives. It is designed to allow the patients to stay at home, in comfort, so they can spend their last days with the ones they love.

Ryan had symptoms that indicated that his nervous system was shutting down. Hospice was called in and we all tried to prepare for what we thought was going to be the end of a very courageous and blessed life. But just like my God, it was discovered that Ryan was having an adverse reaction to a treatment for his seizure disorder. With some very mild alterations to Ryan's care, the terminal symptoms that placed him in Hospice care disappeared.

Thanks be unto our Lord, Jesus Christ for all he has done for Ryan and our family. I can't wait to see what God is going to do next with this miraculous young man.

4 comments:

Jules said...

Hey Sis Stacy and Brother Ryan! Thanks for making this blog and keeping us all updated on your progress. I have had to pull Ryan's chart now and again and often wonder how he is doing. And I often have asked Scott, when I'm over at the office, how things are going, but now I can keep up with you here. I really like how you listed all of his accomplishments throughout his life. One gets a glimps of the true meanings behind these terms. Keep trucking! :o)

Jules said...
This comment has been removed by the author.
Anonymous said...

I love your descriptions of Ryan. They are right on the money, honey!

Anonymous said...

Oh, and as for his flaming red hair? He wears it the best!!!!

RYAN ROCKS!