As a parent I do a lot of things. I read to my children, I pack lunches, we host play dates and I schedule activities...oh, and I drive (rather a lot). I try to be their best advocate while ensuring that I see my children as individuals with their own separate strengths and weaknesses. I try to teach as I go, and to connect with each of them at various points in the day...recognizing that they each have their own unique personalities, needs and "best" times of the day.
I am up with Susan at 4:50 almost every morning. We cuddle. I make her breakfast...and I sit with her while she eats. It is "our" time. I make a point of being present for Meg from the minute Susan and Paul walk out the door to go to the rink until the minute Meg gets on the bus or I drop her off at school (Carl squeezes in there, too -- although as a late-to-bed, late-to-rise kind of kid, he is usually on a tear!). I make a point of listening to Meg practice her violin most days...and I carve out time (even when I am so tired and DONE with being a parent that it is the LAST thing I want to do) at the end of the day for Carl, who is at his ABSOLUTE best then.
There was a time when I thought a lot about my parenting goals, philosophy and the like. I think I even read some books on the subject. At this point, I do not think about those things that often -- while there are CERTAINLY areas in which my parenting could improve (I probably speak for all parents out there), most of what I do is ingrained at this point in time. (Yes, even the occasional loss of patience...)
I have been busy today...but, in the back of my mind, tomorrow has loomed -- ever-present. I find myself wondering about my role as a parent in the plan for tomorrow. I find myself thinking of the parents we know who faced heart-wrenching decisions about their son's medical care -- eventually signing consents to allow the treatment they believed would give him the best possible chance...and I wonder -- are we (am I) right in the decisions we have made leading up to this day? Is it ever clear?
We sought out a clinical trial for Susan. We felt (feel) fortunate to have been offered a spot...and we were thankful when Susan was enrolled in the PRROTECT clinical trial at Lurie Children's Hospital. This is exactly what we wanted...right?
Tomorrow is the day that Susan will be presented with 250 milligrams of peanut protein (broken into a number of smaller doses over the course of the day)...with the hope that after a series of injections (with either Xolair or a placebo), she will be able to tolerate consumption of that much peanut protein.
[That is (approximately) one whole peanut, by the way...and about 20 times what Susan consumed at the outset of the clinical trial -- the consumption of which resulted in a delayed anaphylactic reaction later that night...]
The sane, rational, clear-headed part of me says:
-- This has been done before (but not with my child)
-- There has been documented success (but not with MY child, at least...not yet)
-- This will be in a clinical setting (BUT they told us to bring our Epi-Pens...)
-- This could be incredible (but WHAT IF it is not? I read that consent...and who needs to fly?)
-- This is what Susan wants (but WHY? And isn't it OK enough even as it is? No, NO. I know it is not good enough as it is. And if I need convincing, I only have to listen to her remarks at the FARE Luncheon -- In Susan's Voice)
-- This is for the greater good (and so please, please dear universe, remember that this is MY child...)
As a parent, all I can do is my best. I do not know what tomorrow holds, and I am...afraid. (Is my best good enough?)
I am afraid of what tomorrow will bring...
And I am afraid of the tomorrows beyond it.
I am so incredibly afraid of home dosing -- and yet, we will do it -- exactly as instructed.
Because my wish for a better future for my daughter is stronger than my fear.
But, that doesn't mean I am not afraid.
What if, in our desire to make things better for her, we make things...worse?
And -- irrationally, probably -- I am afraid that someone out there will think "oh, she's not allergic any more..." (which could have devastating consequences...)
For years, we have avoided peanut -- cross-contamination, dust, even airborne exposure -- and now, as Susan's mother, I am going to sit with her -- supporting her, encouraging her, ENDORSING her...consumption of peanut. Insane. Incredible...and hopefully, hopefully, so worth all the fear, all the anxiety, all the...risk.