Jul. 16, 2015
TOPIC: Patient Stories
Posted by Jennifer Huron
By David Cry, Guest Blogger
Courage. Strength in the face of pain or grief. A tenet I have experienced on many occasions as the lead of The Adrenoleukodystrophy (ALD) Foundation. I have heard it in the words of mothers whose sons have been diagnosed with this fatal illness. Witnessed it in the tears of fathers who knew that maintaining in spite of incredibly negative odds was the only way. I saw it first hand in the eyes of my wife Jaymee. Three days post our son Logan’s fatal diagnosis. I then saw it every day, in the nurturing manner she loved him and our non- affected younger son Brennan. Courage. Not often relied on. Having now lost a child to a rare disorder, I can spot courage from a mile away.
Traversing paths unfamiliar requires solid footing. Going through the day after day of witnessing bouts of dementia, psychosis, the loss of vision, hearing, and speech, although the road became bumpy, lessons learned evolved as priority. Right and wrong ceased. Drama gone. Life unfolded in a brutal way but, it also supplied what we needed to make it through. For all of those people who say they understand, even when they cannot conceive, cling to patience. When those you feel you know say things that defy logic, understand that they don’t know what to say. Your relationships will strengthen or wither. Try not to dwell. It is a simple fact of life that when some things begin, others end. Do not allow it to affect you. In the midst of all things, it’s not worth it.
Find solace in a healthy form. I wrote which was an escape. An outlet for grief, I wrote about all we went through. “A Short Walk Home” was published June 30, 2015. My chance to help those facing a similar plight. In that I have spent fifteen years helping others through the foundation, this appeared natural. As I write this, the book has been out two weeks. A close friend, an actor, appeared on two national morning news shows and advocated my book. One of the more humbling things that has happened in my life. My hope is to reach the masses. Not just for ALD but for all rare disorders. The challenges we all face are unending. More awareness must certainly mean more results.
Today, we are almost whole again. Frankly, stronger than we were before. All of the stress of a dying child lifted through his passing, no matter how much better we become, we will never forget. As Logan was just 14 when he died, I now see it as crucial to honor him by helping to forge his legacy. I speak about him daily with anyone who will listen. I see him in his mother’s eyes. Hear him in his brother’s voice. I pray about him every night. Gone now, he will always be here.
Decide to love. Allow it to carry you. Hold tight to anyone who means anything to you. In the end, love will allow healing.