Dark Night of the Soul
The "Dark Night of the Soul:" It's one of those phrases that almost everyone understands. Life throws us curve balls; we stand facing a "train" that is going to hit us no matter what we do; we feel alone and abandoned.
Our parenting journey has led us through many of these dark nights. For those parents with a child with disabilities - autism, developmental delay - those desperate times come with frightening regularity, and many times without warning. I was thinking today of young parents I know who are just beginning this journey. For those of you who are where I was 30 years ago remember that you are not alone, even when you feel that you are.
Whenever Alan struggled, we struggled. I think we struggled even when he didn't. The school experience often left us breathless with teachers asking us why we didn't discipline him, or what we suggested to "fix" the problem. We were often just as clueless as they were. Asking "why" was fruitless. We have learned over the years that it doesn't help.
It is obvious when your child needs to be comforted. Alan could not accept spontaneous touch. The pain we felt watching Alan rock back and forth endlessly to comfort himself was our own to bear. We longed to reach out and hold him, but he wouldn't receive it. So he rocked in solitude, whispering to his stuffed animals and expressing his love and trust in them. It is because of these issues that parents of autistic children grasp like drowning men at any overture of affection. For me, the few times Alan allowed me to hold and comfort him were so precious, I could be plunged into despair knowing that it could be months or years before I would have that chance again.
Now we are dealing with Huntington's Disease, and the dark night of the soul can be kept at arms length for only so long. Last week, a casual conversation with a colleague triggered a memory of my sweet little boy telling me good night, and I lost composure. Tears streamed, and I had to duck into an empty room until I could compose myself. We try not to focus on what is lost and what is ahead, but there are times when knowing what we must endure can't be ignored. A dark time indeed.
I don't know HOW we will get through this. I know WHO will walk before us to to illuminate the way when we walk through that dark night.
Our parenting journey has led us through many of these dark nights. For those parents with a child with disabilities - autism, developmental delay - those desperate times come with frightening regularity, and many times without warning. I was thinking today of young parents I know who are just beginning this journey. For those of you who are where I was 30 years ago remember that you are not alone, even when you feel that you are.
Whenever Alan struggled, we struggled. I think we struggled even when he didn't. The school experience often left us breathless with teachers asking us why we didn't discipline him, or what we suggested to "fix" the problem. We were often just as clueless as they were. Asking "why" was fruitless. We have learned over the years that it doesn't help.
It is obvious when your child needs to be comforted. Alan could not accept spontaneous touch. The pain we felt watching Alan rock back and forth endlessly to comfort himself was our own to bear. We longed to reach out and hold him, but he wouldn't receive it. So he rocked in solitude, whispering to his stuffed animals and expressing his love and trust in them. It is because of these issues that parents of autistic children grasp like drowning men at any overture of affection. For me, the few times Alan allowed me to hold and comfort him were so precious, I could be plunged into despair knowing that it could be months or years before I would have that chance again.
Now we are dealing with Huntington's Disease, and the dark night of the soul can be kept at arms length for only so long. Last week, a casual conversation with a colleague triggered a memory of my sweet little boy telling me good night, and I lost composure. Tears streamed, and I had to duck into an empty room until I could compose myself. We try not to focus on what is lost and what is ahead, but there are times when knowing what we must endure can't be ignored. A dark time indeed.
I don't know HOW we will get through this. I know WHO will walk before us to to illuminate the way when we walk through that dark night.
Sharing the pain of loss that is very real. You are right, it is like a train coming at us. A friend shared a helpful quote, they said "our grief is too large and important". I find the image a helpful one. No one else understands just how large that loss is and what it entails. You are also right, we know who is with us and we are never alone.
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