Monday, February 27, 2017

Let's Be Honest

We've been in the hospital for a long time. Nearly 3 months to be exact. 3 months of ups and downs, good new and bad news, 3 months of hospital food and sleeping in a recliner most nights and 3 months of a lot of sitting. With a lot of sitting comes a lot of time to think.

As I sit and think, I think about what I want to be when I "grow up". I love what I do. I love being a massage therapist, doula and placenta encapsulation specialist. I love the flexibility of being a small business owner and setting my own schedule, but I also can get overwhelmed with all that comes with that.

Even more than that, I realized this past year that as of right now, I can't support our family off of my small business income. The hope would be that I wouldn't ever be in the position again to have to support our family off of my income alone, but that might not be a reality for us.

The thing is, lung transplant does not have great success rates. We were told to see the statistics, but not dwell on them because CFers tend to do better than other transplant patients because they are younger and stronger at the time of transplant. But I'm a numbers persons and when I see the numbers, it's hard to unsee them. 5 years post transplant only 50-55% of patients are still alive. That's the flip of a coin. I'm acutely aware that there may come a time again when I have to single handedly support our family financially and right now I can't do that.

So I've been thinking a lot about other areas that I'm really interested in. I've been thinking about returning to school for awhile so that I actually have options if I want to enter into a new career or if I find myself in a position where I have to support our family on my own.

We have been incredibly blessed to receive so much support that we can live here in Pittsburgh until Elias is cleared to go home and not have to stress about how we will pay the bills and rent both here and in NY. It's been such a gift and incredibly humbling When Elias had to stop working in August, we only had enough finances to get us through a couple of months at most in NY, I wondered how we would get by and I don't want to be there again if we don't have to be.

But there is another thing, something that is even more crucial. Health insurance. As a self employed individual, I do not get employer based benefits and Elias has worked in positions where he either received no benefits or part time benefits that were not comprehensive and left him "underinsured". With the changes that are happening in health care in our country, having employer based coverage might be our only option and that is if they don't deny him coverage based on his preexisting condition.

So I'm thinking about going back to school, so that I have options for a career that I will enjoy and that can hopefully provide health insurance for our family and will allow me to support our family on my own if need be.

Thursday, February 16, 2017

"What Do I Know of Holy?"

Over the past year, my faith has been challenged in ways I didn't expect. I've learned that I understand very little about God and his ways and I've had this desire to explore that further, to "figure out" who God really is beyond what we are told or taught. To really understand the character of God. What I've found is that I have more questions than ever.

I tend to be analytical. I like things that are more concrete like math and certain sciences like myology. With math, there is one answer. There might be multiple ways to get there, but there is *usually* one right answer. With myology or muscles, each muscle has attachment points and actions. A muscle cannot move in way that it's not designed to move and function. It's concrete and easy for me to understand, it's logical and can be rationalized, but the abstract stuff is harder. The gray area where there is more interpretation is harder for me. It leaves me uncomfortable and with a lot of questions that don't necessarily have answers.

I have learned this past year that I don't want superficial answers or a superficial understanding of God. I want to go deeper and I struggle to find comfort in platitudes that are well intended, but not necessarily encouraging. I want to peel back the layers of the character of God, but I also want to be able to be at peace with having a God that I cannot analyze or comprehend. I want to be okay with having questions that have no answers, but I also want to be okay with being uncomfortable that sometimes there are no concrete answers.

When Elias got his transplant just in time, many people talked about "God's perfect timing". We tried to analyze and understand and rationalize why we had such a struggle to get to that point and why those lungs were meant specifically for him. That maybe if we hadn't had those struggles he would have had lungs that weren't as good of a match, or this or that. But God cannot be rationalized.

While we were waiting for insurance and transport it was also suggested that all would fall into place in "God's perfect timing". But what would have been said if he was one of the 22 people who die every day waiting for transplant? What if lungs never came and I had become a widow at 29 with two year old twins? How would the body of believers have supported me in that? We've also been told that how sick he was after transplant and his long recovery is why they like to transplant people before they get this sick. Was that all part of God's timing and plan, to make him wait while he got sicker and result in a more difficult recovery, or did God keep him alive long enough to show up in the nick of time with a good match?

We so want to understand God and rationalize every part of him and how he works, but maybe we're not meant to. Maybe we're meant to know and trust that in the good and bad, easy and hard, sickness and in health that God still good, still sovereign and that he still loves us in ways that we can't understand.

I've had to remind myself many times through this process that God actually loves Elias more than I do and that he understands and knows our suffering, our grief, our anger, all of it. That even when we feel alone, he has not abandoned us. This season of suffering has lead me in some ways into a deeper relationship with God, while also driving a divide between God and I. A divide that with time can be healed and repaired.

Then again, maybe I'm completely missing the mark.

"To begin with, that you can't grasp the wonder of my nature is rather a good thing. Who wants to worship a God who can be fully comprehended, eh? Not much mystery in that." - Papa, "The Shack"