Monday, May 28, 2007


I'm sure I'll delete this later, I'm just getting it off my mind and out of my fingers.

It is true that I have known far too many children who have died - three since December, making six in the last three years. All these children have been born with health challenges. Their parents have loved, have struggled, have stood by, and ultimately, have had to let go.

I am amazed at the fortitude they've shown when dealing with the death of a child. I wonder where it comes from, that strength.

It must be that the Spirit of God whispers peace to their souls. Or maybe, a quiet acceptance of what cannot be changed sets in and they do the best they can with one of the hardest trials in life.

Saying goodbye.

These last three have reminded me of the very real possibility that not all of my children may outlive me, but I happen to be a tenacious parent. The kind who researches, reads, and absorbs as much as I can about the law (as it pertains to education), science (as it pertains to medical conditions), advocacy (as it relates to disabilities), and health and educational philosophies. So, how do I know that my determination to help my son is not an attempt at hanging on by my fingernails to keep him with me?

I'm not sure I said that very well. I just wonder if my protective desires as a mom are running contrary to the will of the Lord. Of course, you say - and I know, this is where prayer comes in. I need to have a close relationship with God in order to hear Him speak to my heart. I somehow think that I am insulating my heart - you know, my version of putting my fingers in my ears and singing, "La, la,la - I can't hear you!"

It is painful to think of separating from Tyler, even for a time. I think of the two of us as parts of a whole - it's almost as if we have a symbiotic relationship. It is difficult to explain, but it is sometimes how I know to take him to the doctor. I have poured so much of my heart into him, into helping him become that I'm sure I would be lost without him. So, while it is a strange thing, I can't help but wonder if he feels that and is hanging on just for me, for our family. It may be that he will live for several more years and actually outlive me, but at the back of my mind is the nagging thought - "Am I holding him back?"

There is no way for me to turn that "momness" down a notch, it just feels wrong. If I don't keep searching, keep trying to find a cure or information for this latest health enigma then I feel like I am giving up. And giving up on Ty is not something I think I can live with.

Is this why my hair is turning gray at an alarming rate, the pounds are creeping on, and my skin (grr, my skin!) is hating me?

1 comment:

Montserrat said...

What a deep thought provoking post. I've had a few friends who have had to deal with the loss of children, some from disease others through car accidents. I'm not sure which is worse, to suddenly lose a child or to slowly watch a child dealing with pain and suffering finally slip away. I believe as mothers we are given a deeper spiritual intuition about each of our children that we need to use to help them. As you stated though, sometimes it is hard to decipher whether our "protective desires as [mothers] are running contrary to the will of the Lord." I think you are doing the best you can, acquiring as much information as you can, to help Tyler. I admire your strength.