Blog · March 11, 2016

Until It Happens To You

I have to admit I only heard the song by Lady Gaga “Until It Happens to You” when I saw her perform it at the “Oscars” this year. It was amazing.

It was amazing especially since I wrote a blog awhile back about this particular… shall I say… “flaw” in our human existence. We seem to be ill equipped to understand something until it happens to us. Unless it personally affects us in some way, we can’t seem to put ourselves in those shoes.

Because I’ve chosen to put myself and my struggles “out there” and up front with both losing a baby at full term and raising a child with a severe form of RDEB, I’ve become a target of all sorts of callouses comments. Of course they pale by comparison of all the wonderful and supportive comments I receive and I promptly delete these negative posts because I don’t want to spend a moment giving any of these individual validations, but I would lie if I said their prick didn’t sting.

The one stinging comment that keeps coming up every now and again is this:
“We put pets down to end their pain, yet we let human beings suffer”.

Let me tell you why it stings.

For one, it diminishes my child’s existence.

For two, it assumes that my child wants to die.

Both of these assumptions are 100% wrong.
For one, he may not matter to you, but he does matter. We all have a place, a purpose. His purpose may not be evident to you, but I assure you, there is one. Besides, you wouldn’t say this if this was your son.
For two, Nicky loves life. He does not want to die. Despite the tremendous challenges, the pain and his confined existence, he can’t wait to get up in the morning. Who am I to decide his death? My job is to keep him alive and well, love him and hug him. I am his mother, not his executioner.

Usually when I research these types of conversations, the topic always comes back around to euthanasia. It’s something I really struggle with. What if Nicky, someday, will come to me and tell me he’s “done”? I don’t know how I will feel that day and, frankly, I don’t want to ponder it. If that situation ever arises, when that situation “happens to me”, that’s when we’ll face it. Until that time, I can’t possibly know how I will feel like, nor can I judge others in these situations.

So, if Nicky’s existence has taught me anything is not to judge situations I’ve never been in. The only thing I can do is be there for that person with a ear to listen and arms to hug.

Love & Light,