Friday, October 10, 2014

What's a Parent to Do?

Photo Courtesy of ImageryMajestic/freedigitalphotos.net
Remind the people to be subject to rulers and authorities, to be obedient, to be ready to do whatever is good, to slander no one, to be peaceable and considerate, and always to be gentle toward everyone.  Titus 3:1-2 NIV

I've decided that God likes to humble me weekly as a means by which to give me my next "blog" topic.  At least, that's the way it's felt lately.  Just this past week, I can name two distinct times when I did NOT do as Paul had instructed here in Titus 3.

My primary difficulty is in "be ready to do whatever is good, to slander no one, to be peaceable and considerate, and always to be gentle toward everyone."  I honestly have to admit here, for all of you to read, I don't know how to do this when it comes to the medical help we seek for our daughter.

As the parent of a child with a rare disease, I have often found myself frustrated, desperate, and scared when schedules, prescriptions, and appointments are messed up.

Living in the area in which we do, we have to travel now close to 3 hours one way to see a variety of Evie's specialists.  We will see oncology, ophthalmology, and nephrology in California, while we'll be seeing cardiology, radiology and endocrinology in Nevada. If you were taking your child to see specialists three hours one way, you would likely try to schedule those appointments as close together as possible, especially if you are on a 6 month recall with all of them. 

Therefore, when I work my TUSH off to get the appointments on the same day, AND when the schedulers can plainly see that we don't live anywhere NEAR their medical facility, I would expect to at least hear something like this:
Mrs. Hefty, I'm so sorry to have to do this...I know you have several appointments scheduled and have a long drive to get here, but our oncologist with whom you are scheduled won't be in office that day any longer.  Perhaps you would see a different doctor, or we could look at another day?
What I got, however, was this:
Hi, I'm calling to reschedule Evie's oncology appointment to the 30th since the oncologist won't be able to see her on the 23rd.  
My response:
Hmmm...that's not going to work for us.  We have several appointments scheduled that day and the day after, and we won't be driving back two weeks in a row since we live 3 hours away.  What other solution can we talk about?
The scheduler is silent; seemingly taken aback by my lack of openness to make such a change.  I step in with a suggestion:
How about this~since we've never seen the oncologist there before, I'm not attached to one specific provider.  Who ELSE could see us on the 23rd?
We were finally able to work out an early morning time on the same day we were originally scheduled for.  Since I never received an "I'm sorry," or "Thank you," or "Let's see what we can do..." I was rubbed QUITE the wrong way so I said, with sarcasm dripping from my lips:
I have absolutely NO problem getting on the road BEFORE the crack of dawn so that WE can accommodate YOUR schedule change.
Kind of rude of me, right?  Not the gentleness of which Paul speaks, and certainly not doing "good".  But, I think I was TRYING to get the best care for my daughter and with as little disruption to her life as I could.  So, what's a parent to do?  I helped come up with a solution...I actually DID come up with it...so...I'm conflicted.

Fast forward to our scary experience on Thursday, when we learned, out of the blue, that our daughter has an allergy to bee stings.  Yes, she's been stung before...at least twice.  But, this time, thank the Lord in Heaven, she was stung at school and the nurse noticed she was swelling like a sated tick.  The school nurse used an Epi-Pen and called the EMS.  Evie and Daddy took a ride in the ambulance to the ER and we were thankful to be home a little after dinner time.  

We had dropped off the prescription for our newest medication, our own Epi-Pen, which we will now obligingly tote with us where ever we go.  When I returned to pick up the Epi-Pen, I was told that they couldn't fill it.  The prescription was written for a Junior size, and Evie was at the weight that would require the Adult size.  
Okay, so, fill it...
Oh no, they couldn't do that.  They had called to ask the doctor to re-write the prescription and the doctor had left for the day.
Ummm...there MUST be a way around this.  I have just found out that my daughter has a life threatening allergy for which an Epi-Pen is required to save her.  I'm quite certain the doctors who just saw her in the ER would be quite unhappy to find that she could not get an Epi-Pen for such a microscopic oversight.  I WILL NOT BE LEAVING THIS STORE WITHOUT AN EPI-PEN IN MY HAND.
 I then asked for the phone number they had called...I was given the number, and I called.  I explained the situation, and the lovely lady on the phone said she didn't know WHY the pharmacy didn't think there was any option as ANY other doctor in the ER could re-write the script.  So, I gave the pharmacist the directions that the lady had given to me, they called again, and the prescription was re-written and in my hand in fifteen minutes.  

I was not gentle...I couldn't be.  I didn't step on anyone else's rights, but I certainly did not just turn meekly away and come back the next day in order to keep the peace.  And what's that saying about the "squeaky wheel?"  I had to squeak, or I would not have been heard.  Would that have been the right thing for my family?  For my daughter?  

So, I'm really stuck here.  I'm trying to understand how I can be who Christ wants me to be while also not getting run over by people who either disrespect us or don't show compassion or concern for OUR situation.  What IS a parent to do?

Pray:  Heavenly Father, I read your instructions, and I understand them in my wise mind.  But, I need help in knowing how you would handle the different situations I have been in with my family...when safety or health may be at stake.  How do I maintain peace when I feel threatened?  How do act gently when I must act swiftly as well?  Help me, Lord, to seek your face and to hear your instructions.  Fill me with your Holy Spirit so I may act as you would have me act.  Amen.

~Tammie Hefty
 
 

2 comments:

  1. Wow, just wow, such a convicting post, thank you... It is next to impossible to not lose your cool when medical "professionals" don't/don't care to do their job correctly, we have to come up with their solutions, because they seemingly expect our kiddos and their health to bear the burden. We have also had similar prescription struggles, where a delay that could cause serious (potentially life threatening) issues is thrown out so flippantly. Thank you for this post, I am saving this prayer for future use.

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  2. Thanks for sharing your struggle - though I would like to offer a different perspective. God knows you and he knows your situation. Perhaps you had these experiences for you to help others to learn. The pharmacy now knows what they can do next time another parent has the same situation and the appointment scheduler now knows that she has options and doesn't have to stick with the script she is given. These may be small changes, but small changes lead to big things. Thanks for sharing - God Bless

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