The Joy and Devastation of Reaching Out

Drew, I miss you now more than ever. While recent events in my life have made me grateful for God’s mercy and blessings, these same events have also refreshed the agony of your absence in my life. This all began several weeks ago when one of my close friends in the Ward informed me (very confidentially) that his one-month-old daughter’s newborn screening had tested positive for Cystic Fibrosis. I was shocked at the news. He explained that he and his wife hadn’t told anyone else and they didn’t plan to until they could do more testing to get a confirmation of the diagnosis. As he told me of his daughter’s alleged illness (one which has many details similar to the disorder which affected you) I began to relive the details of your illness’s progression in a very vivid way. I recalled all the discussion of genetics and how the disease became manifest in you (Cystic Fibrosis becomes a dominant trait in the same way). I recalled the effects it had on your body (Cystic Fibrosis also affects breathing and requires physical therapy to the chest). And I recalled the initial horror of learning of your disorder. All of this played out in mere minutes as John explained to me that (if the tests confirmed the diagnosis) his daughter would live a life constantly in and out of hospitals and that the disorder would most likely shorten her life. The hell Brittany and I experienced in the hospital with you became real again and I found myself nearly unable to cope.

However, drawing upon all of my strength and calling upon the Lord to support me, I began to reach out to John and Rachelle. After all, I knew firsthand how scared they must feel. I knew in a personal way the depths of the feelings they were experiencing. I felt uniquely qualified to try and support them. The importance of my support seemed to heighten when I considered that they had chosen to not inform people of the news until they had 100% confirmation of the diagnosis. While I agreed with this decision (the members of the Ward had endured so much during your sickness and passing that enduring the news that a second child had been born with an incurable genetic disorder would have devastated some) I simultaneously felt bad that they had chosen to suffer alone, without anyone to support them. Thus, for the greater good I laid my personal feelings aside and did everything I could to care for them. I spoke with John at length about my experience with your illness and how your passing had affected me. I shared with him some of the things he may experience himself. Most importantly, I testified to him of the reality of God’s control over our lives. I bore testimony to the great plan which makes both life and death possible and mandatory.

During these times I truly felt that my efforts strengthened him. I don’t say that in a prideful way (if anything I am humbled by the role I played). I simply mean to say that I could feel the Spirit guiding me as I tried to support him. He invited me to stand in the circle as his daughter was given a name and a blessing. Even though I knew it would painfully difficult for me, I did so to support him. As he blessed her I felt the pain of your blessing return. I nearly lost control of my emotions as I recalled the impressions I felt as I laid my hands on your head. During her blessing I pled with God, “You took my son and I’m trying to live with it, please…please don’t take John’s daughter as well. I beg you, please let her stay here and live a life of love with her parents. John and Rachelle are good people. They love You and keep Your commandments. Please don’t force them to live the hell which Brittany and I are experiencing.”

Well, yesterday was the ominous day when they went to the doctor to run the scheduled tests and definitively find out if their daughter’s diagnosis was correct. I had previously asked John if I could fast for him and his wife and daughter. I as fasted I felt the weakness of my physical body take hold of me, but also felt the strengthening of the Holy Spirit. All day I could think of nothing but them and their beautiful daughter. They had named her Lucynthia, after both of her grandmothers (one named Lucy and the other named Cynthia). She had been born only weeks after your passing. Once while holding her, Brittany had wondered out loud if she had seen you in Heaven before she came to earth and if she knew you. In some ways, she felt like an extension of you and because of this the news of her alleged disorder seemed to be nearly as devastating on me as was yours. If the tests came back positive I didn’t know how I would react, but I prepared for the worst.

As I learned late in the evening that the tests had shown that she did not actually have the disease (that the newborn screen had given a false positive) I was so overcome with joy and elation that I felt as though my physical body could not tolerate it. Indeed, only a handful of times in my entire life have I felt such pure joy. I wanted to scream from the highest mountain. This joy quickly turned to gratitude as I realized that God had given this beautiful family a blessing beyond measure. Their daughter’s life had been spared. God’s mercy had been extended to them. Their hell was now over and they could continue on with their lives. I felt as if I was filled with the Holy Spirit knowing that I had set my own needs aside and done all I could to lift up my friends. I felt that my meager efforts had truly made a difference.

Since I received this news last evening, my mind has dwelt upon our own family. Oh how I wish that our outcome could have been the same as it was for John and Rachelle! What I wouldn’t give if your sickness had only been a false positive…a scare and nothing more! Much to my horror however, the outcome to our story was much different than theirs. The devastation of your loss has been renewed. The agony of your absence seems as poignant as ever.

The joy I experienced as I reached out to John and Rachelle showed me firsthand the truthfulness of God’s counsel that we find ourselves by losing ourselves in service to others. The devastation I now feel reminds of the emptiness of your loss. And of course, Satan has now begun tempting me, “The reason their daughter was spared was because of their righteousness…maybe if you were as righteous as they God would have let your son live as well.” I know it’s not true, the but the thoughts still come.

I miss you.

With Love,

Your Father