Two of my biggest character flaws are not taking a compliment and not asking for help. So if you applaud me on something, I may rapidly offer an excuse about it not being the normal or perhaps reciprocate the gesture taking the focus off me. As for not asking for help, well, even with three children under the age of four, I just thought I was supposed to do it all myself, rarely being okay with admitting the superwoman stereotype was a myth.
Okay, let’s be honest. There are at least two more. I am a perfectionistic procrastinator and I despise gray area anything. The PP is an elite step above the lazy, slacker who simply doesn’t care or is not organized enough to pull something off. Au contraire. I over think and care too deeply to not pull it off perfectly. Which in reality means, I don’t even start. And double standards? Well that brings me to selling my kidney.
Why is that I can donate and/or receive money for my plasma, but I cannot sell a kidney. Double standard. People need them. I have two. My daughter needs to be pain free. Seems like an obvious solution. Now I’m halfway kidding here, but a mother will do anything for their child…almost.
So when people question my methods of what we have and have not tried, I politely smile and understand that they don’t have a clue about the hold this disease has on her. And the whole family. They don’t walk in our shoes and really are suggesting things from the purest of hearts. Down south we say “well bless their heart”. And I do, often, in my mind. So let me reiterate that, for right now, we are just biding our time until June’s arrival. But also not wanting to rush anything because our senior is graduating.
So we long for time to both stand still and hurry up.
For the kind words of what a great advocate I am for her and how I manage to juggle things so well…thank you. But I’m like a duck swimming along. Smooth and calm on the surface, but paddling furiously beneath. I know some other pretty phenomenal woman who I wish you could meet and hear their stories. Much like our own. An online closed Facebook group of other parents fighting these same battles, comparing stories and therapies tried and abandoned, cheerleading one another when we reach our lowest and darkest places. I have been on both sides. They truly understand this war and its aftermath. Family and friends can understand to a degree, but its limited. Sadly, some don’t even acknowledge this battle exists. I simply don’t have any energy to devote to their loss because my daughter is one of the strongest and bravest people I will ever know. My prayer is to be as encouraging and share my testimony as best I can as these women have done so with me. So when you are admiring my tenacity, know that I have a village of mothers behind the scenes that know my darkest secrets, meet me there, and talk me through it.
As for asking for help…well, God certainly knew how to handle that. I received an email from Andrea telling me unless I told her not to that she was doing this. Sounds just like her for those who know her, doesn’t it? She has taken this bull by the horns and made serious progress. I amazed at what she’s accomplished in just under 25 days, raising over $7k and 682 likes. Andrea calls it putting “skin on our prayers”.
Oh dear, the procrastination one. These days, I’m just lucky to get through. So many variables. May is busy for everyone. I’m certainly no different. End of year Mayheim is what it is. Add college and financial stuff, plus pending surgery, discussion for 504 for next year for her, along with recovering economy so work is slamming me right now, and…well, I spend my days putting the fires out. The must do’s eventually get done and some things actually do get crossed off the list, but not to the degree I’d desire. The kids are fed and laundry is done, although more often than not we clothe directly out of laundry baskets and the kitchen is untidy. But I drop what I’m doing and go where I’m needed. And I’m learning to be okay with that.
I still don’t like things to fall outside a box. I prefer them neat and tidy, one way or the other. I loathe political correctness. Saying something one way to please the crowd you are with at the moment, but another elsewhere irks me. So back to medical care. My daughter needs something that insurance deems unnecessary. I guess they prefer not only that she spend her life in pain, but also downing loads of pharmaceuticals with their side effects for the rest of her life. And they don’t mind us traveling to Chicago and staying in the hospital for IV therapy that destroys her veins where they paid nearly $17k or one single trip to the ER for a migraine cocktail that will last a few short hours with a price tag on average of $575 per trip. We could also have a surgical neurotransmitter implanted that, in theory, would work much like the surgery will do. One is temporary with battery changes every few years, which means more surgery, while the other is permanent. No, it makes far more sense to leave her in pain, never finding and treating the source, than getting to the root of the problem. So with this mentality of random payments for various treatment opportunities, why am I not surprised that selling one portion of the body is okay, but not another?
I’ve often said, have Anthem card, will travel. And we have. As a mom, I will do anything to help my child.
Well…anything legal.
Now may the God who gives perseverance and encouragement grant you to be of the same mind. -Romans 15:5