Last night at a special musical fireside, many people shared their testimony of the Savior through their talents. It was a wonderful experience. I was honored to sing in the choir and the piece I wrote, and Jenny McKinney put words to were premiered by a small children's choir. This is the piece that I submitted to the 2014 LDS Submission.
The music came to me very quickly and sat in the "archives" until I felt prompted to get it back out and put the word out for collaborators. I was grateful for Jenny stepping forward. As I have mentioned in previous blog posts on my regular blog (www.ldshappy.com), I believe there are no such things as coincidences.the Lord is very much aware of our lives and has a huge impact on us if we allow Him to do so. And this collaboration was no "coincidence".
Here is the text that Jenny said prior to the children singing:
On May 6, 2000, the world received a special spirit. Baylee Ann Neil was born a small 4lbs. For the most part, Baylee was healthy and was able to go home at five days old, with a heart monitor. When the heart monitor went off two weeks later, that was just the beginning of a very unknown future. Doctors not even her own were prompted to help this infant who would have otherwise died. Baylee was diagnosed with Wolff-Parkinson-White Syndrome, which is the presence of an extra, abnormal electrical pathway in the heart that leads to periods of a very fast heartbeat (tachycardia). Although she began medication to help, the next several weeks were spent in the hospital, trying to stabilize her heartbeat. There were many unanswered questions. She had many tachycardia episodes that would sometimes require medication, other times cardio conversion. This is where a special machine is used to send electrical energy to the heart muscle to restore normal rhythm. The procedure restores the normal heart rate and rhythm, allowing the heart to pump more effectively.
For four years Baylee was in and out of the hospital, trying to find something to stabilize her heart. Nothing was working. She coded three times! When she was four years old, she had an ablation done and also received an ICD implant, a defibrillator with a built-in pacemaker.
From her mother's own words:
“The day came and she went into surgery. The surgery was long. The first several hours are just mapping the heart out. We were updated every hour or so and things were going well. At about six hours into surgery, we got the news that when they put her in SVT (Superventricular tachycardia) her heart rate went much higher then they expected! This changed her diagnosis too dangerous Wolff-Parkinson-White syndrome. They were able to ablate one extra pathway but found several more. They were unable to do anything more at this time because they could not bring her out of SVT and she was going to lose her life if they could not stabilize her ASAP. After several hours she was stable and we could see her. (That was one of the scariest things in my life!) A few days later she started experiencing seizure activity and was diagnosed with epilepsy.
She is now 13 and has had many ups and downs along the way. At this point she is doing well. She is in 7th grade and loves softball, drawing, singing, and she is passionate about making people aware of Congenital Heart Defects (CHD). She lives a fairly normal life and I am so blessed to have her in my life. I would not wish CHD on anyone but I would not change who it has made us become. We are better people for this journey we live every day.”
To update you since I first planned on sharing this story, I will also add that Baylee had the device removed at 8 years of age. Until a few months ago, her heart was doing well. Then, that changed. For the past month, Baylee has spent most of her time in the hospital. While her body has struggled greatly, Baylee's faith has never wavered. She knows that for however long she is here in her mortal journey, it is all in God's hands. I know that those of us that know and love Baylee are happy to have her here for as long as we can. Brothers and sisters, the greatest truth is in knowing that we are beloved children of God.
Here are the words:
There are times I wonder who I am so I search my heart and mind.
For it seems although I'm different to some I still carry light inside.
There are mountains I must overcome I know, there are paths I will climb.
Yet the greatest truth has made me who I am, I'm a child of God on high.
I can stand up for those who are unique I'll reach out and be their friend.
Until they can find their own voice to speak I'll be there until the end.
There will be mountains to overcome we know, there can be joys we will find.
And the greatest truth can be our light inside, we are loved by God on high.