Should They Look Through Our Looking Glass?

I really wish we were not in the midst of another conundrum. Our path has never been simple nor straight forward. Many disasters we prepared for never happened. We have been blessed with some miracles. There has been and will always be extra uncertainty where Rose is concerned.

I was reminded of the very beginning of our journey today by a message of a parent that is on the line between febrile seizures and official epilepsy. They are not sure whether to hang back and hope for only a febrile seizure diagnosis or take the plunge into the dreaded diagnosis.

I told them to message an address and I would mail them a book. Now, I question the wisdom of that offer. Maybe they are ready for the first few chapters of Seizure Mama and Rose by Flower Roberts, but they might need to stop at the big E diagnosis.

I asked myself, would I have wanted to know the rest of the story twenty-eight years ago? There is some wisdom in the biblical term, a light at your feet. I do not think I could have handled the foretelling of all that would follow.

We took many challenges as they unfolded. We had faith that a treatment would come along to save Rose, or atleast stop the worst seizures. We needed that faith. It helped us get through terrible surprises that emerged.

So here we are, decades later, on the cusp between faith in drugs and the risk of a seizure that will most likely come at some point. Wanting her to be as free as possible.

Her dad and I are older now. We are tired. There has been enabling and spoiling that is difficult to correct. Rose is still hoping for independence. Everybody needs that to happen.

She may be allowed to drive in April. Then what? An instant job and apartment? Sudden interest in cooking and cleaning? This could all fall apart with one drop.

Do these anxious parents really want to see through our looking glass?  Part of me says yes. Rose is still alive. She is a college graduate. She has a great sense of humor. She has only broken one bone in all those seizures. All that is positive.

She is still at home in a room I have dubbed, The Rose Museum, because things go in and never come out. We suspect she needs physical objects associated with memories. No change has been made in there. I do not allow myself to enter.

If that looking glass pans over to see her weary parents and worried brother, they may wish they had not seen the effects it has taken on her caregivers. We call it, The Toll.

I question my role as a advocate for parents when we have not reached the finish line. Maybe I need to be a model for acceptance. I am not sure I am capable of that.

I told myself that folks needed company on their journey, not a leader. I can commiserate. I can empathize.  I can quietly listen. I have no wisdom for them to learn from. I still feel as uncertain and scared as I did in the beginning.

There I said it!

I am sorry if that is not what you wanted or needed. That is where I am, decades into this.

Seizure Mama