As 2018 came to a close, I was in a serious season of seeking the Lord about the upcoming year. He gave to me the scripture Matthew 6:33:
“But seek first His kingdom and His righteousness, and all these things will be added to you.”
He had given me that scripture before in different seasons of my life, but it had been quite a while since it had been a direct mandate. Don’t get me wrong… it’s always His mandate that we seek first His kingdom and His righteousness, but I’m talking about it from a very personal angle. Rhemainstead of logos.
In order to really understand why this is a big deal, I have to back up into the early parts of 2018. Those of you who know me already know these things, but many of you don’t, so I’m going to recap it briefly. It was a year of huge transition, not just for me, but for many of the people close to me. For the last year and a half, one of my closest friends and I had been roommates, and she was also my primary caregiver. Quite unexpectedly, she met someone she began dating, and it quickly became apparent that it was moving toward marriage. I knew this was going to change my situation, but it was okay because, during her courtship, I met someone as well, so life was good.
My friend and I moved to the Midlands of South Carolina from the upstate for two equal reasons:
- She could be nearer to the man she was dating to be certain she wanted to move toward marriage, and
- I could get involved with the disability community in the capitol city region.
As we began to get settled in our new place, I really wanted to become as independent as possible. I knew that within just a few months, my friend would be getting married and I would want to release her from her caregiving responsibilities when she married and moved out. So I began re-applying for a number of governmental programs that would make me eligible for waivers which would in turn provide services for me that I cannot do for myself.
Most people have no problem doing normal activities of daily living (ADLs), but for a person who has a disability like I do, those ADLs are impossible without the help of other people. I have been fortunate in my life to have always had someone to do these things for me, and I never take that lightly. But it’s also always been on just a volunteer basis for the most part, and I’ve never really quite felt like I was as independent as I wanted to be. It’s sort of hard to explain this, but I only know to say it this way. When a person is already so dependent on other people for their physical care, it is important to achieve the highest level of independence possible, especially when it comes to self-directing and scheduling reliable long-term care.
As I continued exploring these options, my own relationship was growing. The man I had met, Tim, was kind, handsome, wise, funny, and overall just an extraordinary man who loved Jesus deeply. Perhaps what was the most extraordinary to me was that he loved me so unconditionally despite all of my limitations. I knew I had found someone special. Actually, it’s more that I realized God had introduced him to me because I would never have been able to find someone like him on my own. As our relationship progressed, we got engaged in the fall, as many of you know. At that point, we set a wedding date for March of 2019.
During this whole process, I was still keeping my eye on my applications for waiver services, participating in planning my friend’s wedding, and seriously wondering how my life was about to change. As her wedding day grew closer and eventually passed, the shift was more apparent than ever. I continued to feel a growing need to release her from all caregiving, although she still was willing to do all that she could. She never abandoned me because she loves me too much to do that, but I could feel the season changing. Tim, my fiancé, felt it as well, and so we decided to move our wedding date closer so that he could go ahead and move in and participate in my care. Even though we did not know how things would work, we would just have to figure it out. I had made it clear to him that I did not want him to be my sole caregiver — I wanted him to be my husband primarily — but he made it equally clear that if he had to take care of me every day, all day, for the rest of our lives, he would do it. He continued to reassure me that he wanted to love me as Christ loves the Church, and that he was well aware that it would come with sacrifices, but those were sacrifices he would make joyfully. I had truthfully never met anyone like him.
At first, this seemed like a logical solution to a practical problem. There was just one major issue with it for me. When I was younger, long before I met Tim, I had developed a mindset and a desire that if I ever did get married, I did not want my husband to become my primary caregiver. I had seen the strain that single-person caregiving had on relationships. My own relationship with my mother was permanently damaged due to her having way too much to do. The responsibility was overwhelming and caused serious stress for her. It wasn’t fair to either of us, and in the long run, it did not go well. Apart from myself, I’ve seen countless friends burn out over time with their own lives when stuck in caregiving situations with their loved ones without respite. I now had two incredible friends who were regularly switching out my caregiving, but I knew that marriage was going to be different. So, as Tim and I discussed our expedited marriage plans for December, I really struggled with the idea of him jumping into the caregiving role as the main caregiver, again because I knew how much strain it could cause in a relationship. I felt like it would start our marriage off on a difficult foundation.
Three weeks before my wedding, I absolutely panicked. I make no excuses for this. I simply panicked. I was feeling the pressure of a major change, experiencing severe concerns about my new husband having to do all of my care, and overall, I began to doubt if I should even consider marriage. I tried to convince myself that I didn’t even want to be married period. Marriage can be a challenge, even in the best circumstances. However, my life is complicated and I am fully aware of that. So I started to feel like maybe the best solution would be to simply never marry. There were many reasons that I started to feel this way. I have quite a number of friends in the disability community across the country, and a great number of them have experienced severe hardships when they did choose to marry. They would fall in love, get married, and immediately lose all services. Some have even lost their homes because they had to expend their resources for the basic needs of getting out of bed and getting dressed in the morning. Therefore, they were not able to maintain regular bills. The solution that a lot of them have started using is simply making a private commitment to each other, but never legally getting married. For some people, that might be okay, but after I examined that possibility for myself, I knew that it was not really an option. I was left with this scenario. There was a man I loved and who loved me and we wanted to get married. But if we got married, I was concerned that I would not be able to get caregiving services to avoid burnout for him, me, and ultimately, our marriage. He would either have to take on the role of sole caregiving, or we would have to lie to the government about our relationship in order for me to receive help that would allow him to be primarily my husband. So in a fog of reeling emotions and difficult decisions, I chose to cancel my wedding. The initial idea was to simply remove the pressure of getting married so soon, in order to let me rethink the situation and see what options there were. I was hoping that maybe something would come to light that I hadn’t discovered yet. But I did also strongly consider the notion of simply breaking up so Tim could go find someone whose life was less complicated. He asked me if the choice was his…whether he stayed or went. I said yes and released him. And in his love and compassion, he said, “Then I choose to wait for you. God makes all things beautiful in their time.”
I continued to pursue caregiving waiver program options. Eventually, I was able to speak with a state representative’s aide, who put me in touch with an influential person within the program that I needed. I applied, things were looking up, and it appeared that I would be able to receive caregiving services. Even better, to my understanding, if I was deemed eligible for services before marriage, my eligibility would not change if I got married. This gave me relief in knowing that delaying my marriage had actually opened the door for this resource, and that if I had married earlier, it would not have been available. Suddenly, there were a number of rays of sunshine. I was now going to get the private caregiving that I needed in addition to being able to marry after all!
There were a few weird requirements, such as the fact that I would not be allowed to make any more money than I currently did. In my own job, I would not be able to accept any raises or future pay increases on contracts. It would also mean that I would be able to have no income from my publishing business. But since I desperately needed the caregiving services, those were sacrifices I was going to have to make. Ironically, right after I first got that information, I received a notice from my job that I was eligible for a merit increase beginning in January. I had to speak with my department head about refusing the raise. So almost immediately, I had to face the fact that I would not be able to prosper any further financially.
But yesterday, I touched base with the individual who has been helping me through the process of applying. After going over several of my questions, I wanted to confirm the eligibility after marriage. As it turns out, what I originally believed to be true was not. I would be deemed eligible as a single person, but if I married, I would have to report a status change, and then everything would change. I would lose eligibility. At that moment, I realized I was back at square one.
But I also noticed a very peculiar thing. I no longer reeled with the emotion of uncertainty. In fact, I had no emotional response at all. Just a smile and an odd peace that I could not understand. So after I hung up the phone with her, I sat quietly for a while, just listening in the presence of my Father. I realized that there were really very few options left on the table.
1) I could simply stick with my decision to never marry. Problem solved. I would get the caregiving services that I needed and Tim would eventually move on, find someone else, and marry.
2) We could get married privately, or with a small group of friends and family, but not file a marriage license with the state. In other words, we could marry in the eyes of the people we love and of God, but be single in the eyes of the state. In short, we’d be living an illusion, a.k.a. lying.
3) We could throw out the idea of using any governmental help, marry legally and openly in all aspects, and trust the promises of the Lord.
As I looked at those options and pondered them, I realized there was only one acceptable choice for us. Tim and I talked, and for both of us, we agreed. Option number one simply wasn’t an option. So we tossed that one. We talked about option number two, and we are fully aware that many people choose this route out of what they believe to be a necessity. We judge no one for their choices to do what they feel like they had to do. But for us, our conscience before our Father will not let us do this. As followers of Christ, especially since we’re both active in ministry, our testimony must glorify God and His Kingdom.
That left us with only one option. We talked about it more, and with very little hesitation on either of our parts, we decided to take that route. And as we discussed it, I remembered more than ever the promise behind Matthew 6:33. If we seek the Kingdom of our God and His righteousness, which means doing things as rightly as we know how, then we simply have to trust that He is going to provide for our every need.
So what does this mean? It means first, that there is still going to be a wedding, likely on our original March date. But most importantly, there’s going to be a marriage. In our discussion yesterday, we both were in agreement that we are far more concerned with the quality of our marriage than the pizzazz of our wedding. We also believe that this means we are taking a huge leap of faith. Additionally, Tim will be coming on board at Spiritfire Publishing with me. He is very gifted in writing, editing and in design and layout. I would ask that you come into agreement with us for growth in our business. We are choosing to believe that if we pool our incomes, along with an increase in our publishing revenue, we will be able to hire people for caregiving out of pocket without government assistance. This will allow him to be maximum husband with minimal caregiving. 🙂
In other words, we are making an active decision to seek the Kingdom of God. We are making an active decision to seek His righteousness. And by doing these two things, we are also making an active decision that we trust that God will be true to His word to add all these things to us. I believe there is a severe flaw in the systems of man that would require people to choose between being able to marry or be able to actually live, or between being able to say yes to marriage without penalty or being able to have simple basic needs like bathing, dressing, and eating met. But what we also realize is that while we live underneath the laws of the government of this world, we are not of this world. We may obey the laws of the land, but we are of another Kingdom. The governments of this world are flawed, causing individuals to get stuck in a vicious cycle of dependency on them in a place of being unable to advance. They simply cannot provide the freedom that the Kingdom of Love can.
So here’s to Freedom of the sort that only God can give, and here’s to the One who is making all things beautiful in their time.
Oh, and yes…I asked for my raise back. 😉
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