|Poise, Confidence and Grace under Pressure|
I know Who stands behind
The God of angel armies
Is always by my side
The One who reigns forever
He is a Friend of mine
The God of angel armies
Is always by my side
Chris Tomlin~ Whom Shall I Fear, God of Angel Armies
Today we honor and remember our Vets who have protected our freedoms and our lives out of love for our country. The WEGO Health Blog assignment for #NHBPM, on this Veteran's Day; (the 11th day of the 11th month), is for us to write about something we must do at a particular time of a particular day in order to deal with our (or in my case, my daughter's) chronic illness. (That just felt like a whole lot of words in a really little space). :)
For Evie, the things we need to keep on top of, and keep at as consistent a time as possible are Evie's medications. She takes two meds for her high blood pressure, a prophylactic antibiotic for her recurrent UTI, an eye drop for her glaucoma and an ointment to keep her eye from becoming too dry. Blood pressure medications are usually cumulative, or they build up to a point that they should be "constantly" in your system. So we try as much as possible to keep those with breakfast and shortly after dinner. We are also supposed to take her blood pressures daily around the same time to make sure we're comparing apples to apples. The eye ointment can make her vision blurrier than normal (she's legally blind) and makes her eye goopy, so we keep that at night right before bedtime. She's not as tempted to rub her eyes if she is getting ready to go to sleep.
Besides medications, we have to keep on top of all her medical and therapeutic appointments. Being that Evie has WAGR/11p Deletion Syndrome (www.wagr.org), and is at increased risk for developing Wilms Tumor, we started having kidney ultra-sounds when she was 6 months old. She was diagnosed with and treated for Wilms Tumor at 15 months old until she was 18 months old. I can say that one NEVER skips or misses a scan after that. I usually start dreading the day early in the week of the appointment because of the "scanxiety" Even though Evie is now 8 years cancer-free, that scan-day can sure take me back to the days of chemo appointments, port-accessing, waiting for labs to ensure blood counts weren't too low...yuck. Makes my stomach turn just thinking about it.
We see ophthalmology every 6 months as well. Back when Evie was an infant and we had trouble controlling her glaucoma, we felt like frequent fliers to Dr. Struck's office. But, once we got the pressures under control, and her eyes seemed more "stable," we were able to spread out our visits.
The first few years of a child with WAGR's life are VERY intense with lots of appointments, lots of medications, and lots of diagnoses. I felt like we were hearing about something that was "wrong" constantly. We always assure the new moms, dads, or caregivers who join our list serve support group that "it gets better." And it does. Quite honestly, whenever we would graduate out of a regular visit with a therapist or doctor, I would often cry. They would become the "reliables" in my life. I'd look forward to seeing Piper at OT, or Barb at Speech, or Betsy at PT. That's a great, and positive part to our WAGR journey; I would never meet these wonderful people without WAGR!
So, basically, our "11th hour" rituals are just keeping on course with medications and appointments. The predictable, the routine, the uneventful have become cherished blessings in our life because for so many years it seemed like we just couldn't cut a break.
From a "military" perspective, it's easy to see that we enjoy our moments of "peace." It's a good day when I don't have to don my uniform and go into "Gorilla Mom" mode; trying to be tough and not let Evie see my fear; trying not to show my tears through her tears. That being said, Sergeant Tammie and Sergeant Jeff will obey any and all orders that come down the line of command in order to best serve Staff Sergeant Evie Jo. We are proud soldiers in the 11p Battalion, 350th Infantry, 1st Wisconsin Regiment. We serve our rare disease with other amazing soldiers, and our battle cry is: In God We Trust.
10 Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.
Ephesians 6:10-18 NIV