Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today…The Lord will fight for you; you need only to be still.” -Exodus 14:13-14
Father, thank you for always hearing me.
After being diagnosed with multiple sclerosis, I immediately recalled my original plan should the MS screening results turn out to be out of my favor. I was to leave my job and return to Connecticut with my toddler. Welp, needless to say, that never happened, but maybe it should have. I made the decision to stay at my job with the Library of Congress in Washington D.C., and it was a good decision because I had full time benefits. With MS on board, I would need the best options for health care for me and my daughter. In Connecticut, there was no guarantee of work or health benefits. That said, to this day, I still mull over that decision. Maybe I would have been better off being near my parents. Maybe I would have more options for child care and health care assistance. I did try to go back, but it didn’t work. I’ll come back to that later.
Over the week following my diagnosis (dx), I knew my neurologist was anxious to get me started on a disease modifying drug (DMD). But FIRST he wanted me to sign me up for a three day course of Solumedrol steroids to treat my current symptoms that were slowing me down, giving me foot drop, causing heavy legs, and whatever was making me feel itchy under my skin.
Following the steroid prescription, I had nurses and medication deliveries coming to my home and several phone conversations with the neurologist and his office staff. It was very overwhelming dealing with the doctor’s office. I had to learn how to get medicine in a brand new way. It was more than a trip to the pharmacy. I was entering the mysterious, but surprisingly efficient world of specialty pharmacies and mail order medication. At the time of this writing, almost nine years later, I feel like an old pro at receiving specialty medication. It all makes sense to me now. It is very efficient, as noted above.
Back to my Connecticut move, three months after my diagnosis, I found a perfect job opening for a Document Analyst at the U.S. Bankruptcy Court in Hartford, CT. Yes, that’s U.S., and yes that’s federal, which meant benefits! Yay! My mom would be pleased. Since would be working with the same “company” I was working for in DC, I decided to pursue it, but it did not pan out. I went all the way to Hartford to interview, but I did not get the job. Even sitting here today, I still feel regretful that I did not get that job. So back to Maryland I go, with my tail between my legs. Heading back to the place I said I would leave if I got this diagnosis, but now it was time for me to figure out a new plan, a new direction for me and my daughter.
Little did I know, I was pregnant actually. Lord help.
More decisions at my feet. Ultimately, I chose to keep the baby, but there were other plans for her as well. When her father and I went to get a sonogram, we were so excited, but it turned out to be a heartbreaking experience for both of us. The doctors found an encephalocele at the base of her brain, which basically means her brain and spinal cord never joined and were growing outside of her body. I received many opinions about keeping the baby regardless of the defect. Her father and his family were not as encouraging. They felt that her life would be too painful for her and everyone involved. My family was the same. One sister pointed out an online parenting group for families making this decision. The most memorable opinion came from a close friend. She suggested it was from the medicine I was taking for MS. She said, and I paraphrase, anytime you put a foreign substance in your body while “preggerz” you run a risk of something going wrong with the baby. Yes, this is true, but through further research, I learned that it was not only what I was putting inside my body (Rx’d DMD), but also what I was removing from my body (folic acid). More specifically, it was a shortage of folic acid. MS absorbs folic acid from your system and on top of that I was not taking enough vitamins, which made it even worse for the baby. So if I fast forward to the end, she did not make it. So that was a result of an equally weak choice in judgement and an unstable personal relationship.
Getting back to my attempt to return to Connecticut, The job I was going after was picked up by an employee who was coming out of retirement to re-enter the workforce. Needless to say, I was highly disappointed when I was informed. Had the position been available, I think I would get it. My decision to stay in Maryland was good. After this happened, I began a new motto to hold my position and do not make any sudden moves. I had to believe that everything happening to me was part of a bigger picture and I had to live through it.
There were a lot of discouraging moments in that experience, but I felt thankful for where I stood at the time, and I was led to remain very still while things unfolded for me. It felt like things were not working out, but I knew eventually the discouragement would turn into success. I knew that eventually my health and my financial well-being would be secure. So if discouragement eventually leads to success, then that has me thinking, how many failures equal a success? In other words, how many times do I have to fail?
Father, thank you for always hearing me.