Category Archives: Seizures

Whatever It Takes….Even if it Makes me Uncomfortable

whatever it takes

Have you ever heard people use any of these sayings, “I’ll do, what I have to do; Use Me Lord; It ain’t nothing to it, but to do it; I got this; By any means necessary; I’ll do whatever it takes!”

Most of us, if not ALL of us, have spoken at least one of the above sayings, or some variation, in an effort to attempt and achieve goals that either take us out of our comfort zone, or aren’t so easy to achieve. For me, these last 8 months have definitely taken me out of my comfort zone. In my last post, I’ve Always Wanted to be a Full-time Pastor, and Finally….,I shared how my wife, Erica did most of the bathing, feeding, dressing, and administering of medicine for Super Mighty Max; but how when the roles got reversed, it was primarily on me. My attitude, when it comes to Super Mighty Max, has always been “I’ll do, what I have to doUse Me Lord; It ain’t nothing to itbut to do itI got thisBy any means necessaryI’ll do whatever it takes!” However, I never realized what that entailed, and how uncomfortable it would make me.

Again, to take care of Super Mighty Max, stretched me for about 6 weeks, to care for Super Mighty Max from sun up to sun down, without a babysitter. I can’t stress enough how difficult this was for me, especially since Super Mighty Max still had a lot of medical issues not be addressed at that point in time. I now had the responsibility of giving all medication, which made me very uncomfortable, many times I was scared that I may give him an overdose. I had to learn how to properly use, vent, and care for his G-Tube, which always carries the risk of being infected, which it did! That was most uncomfortable, considering that Erica was out of town on a job interview at the time. Mentally, it was uncomfortable, because I had to remember every medication he was on, every dosage, every doctor’s recommendation, every upcoming appointment, and be a first hand witness to the discomfort of my son, Super Mighty Max. Oh, and who can forget the $15,000+ in hospital bills, I mean really, what do you do with that?

Fortunately, as the months have gone by, and days have passed, its gotten a little bit easier! Not totally easy, but a little easier! We still have a lot of appointments, we had 3 last week and 5 this week, but we’re used to it. The hardest for me to do thus far, is to give my son an injection of ACTH (Adrenocorticotropic hormone) by needle each day! injection

I hated when my son had to get shots, he’d cry hysterically (I would too), so the thought of me giving one didn’t sit well with me. Thankfully, he no longer cries when receiving the injection, which makes it easier to administer. I also hated giving him the ACTH (seizure medication) because it costs $30,000 a vial (THANK GOD FOR INSURANCE”)ACTH

At one point, we had 4 vials in our refrigerator, totaling over $120,000; I’d wonder at times, how much I could sell it on the black market, LOL, just playing!

So, while I’ve been made extremely uncomfortable these past 8 months, my attitude is still “I’ll do, what I have to doUse Me Lord; It ain’t nothing to itbut to do itI got thisBy any means necessaryI’ll do whatever it takes!” While it’s surely easier said than done, I thank God for a supportive wife, a Village of family and friends, a closer church, and prayer! This has helped tremendously!

familyandfriends

Thanks for reading and keeping us in your thoughts and prayers!

Brandon

Working Mom: Becoming the Primary Breadwinner

Working Mom
According to the New York Times article written in 2013 four out of ten American households with children under 18 now include a mother who is either the sole or primary earner for her family, according to Pew Research Center analysis of Census and polling data.  Most of my close girlfriends make more or have gradually earned more than their significant others.  As my husband Brandon, shared his perspective in his post on Tuesday (please check it out here) of being a work at home dad/full time pastor, that a special needs child requires a entree of patience with a side of compassion.
Having a stay at home dad as the primary caregiver is still very foreign in today’s society and places stigmas on the men in those roles.  We have been conditioned from our parents and grandparents in the 1940/50s era where most moms stayed at home while dads were the primary breadwinners.  Now it’s common to find both women and men working to combine incomes for household expenses.  I try my best to not use the term stay at home dad because of the stigma of being Mr. Mom.  I always say Brandon is a work at home dad.  He does work and he does bring in income.  Brandon just doesn’t have a traditional 9-5 job as he had in the past to help bring in some additional income besides pastoring.  His primary focus is taking care of Maxwell and our amazing church family at Ebenezer AME Church Capeville, VA.

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