A Little Thing Called Hope

“The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope.”
–Barbara Kingsolver

It’s been two months since I wrote, friends, and I’m not sure where to begin. My last post was about the death of my mother, which is an event that I continue to process. I feel a lot of relief that the hard part, the end of her life, the suffering is over. And I feel sad that she’s gone, whenever I realize it, because I seem to realize it again and again. I think on the one hand, I just don’t want to believe it. But on the other hand, she had been gone a long time already. The person I knew as my mom was taken by Alzheimer’s long before she died. Now, I am free to remember her as she was before. And I do feel her presence, all the time. My last thought here: the dying is so much harder than the death itself.

There are some other things happening in my life as well. Yes, my life, that continues onward, hopefully for a long, long time. The biggest news….I am pregnant! I am at almost 15 weeks now, and this is probably the main reason I haven’t been writing, because I have been sick and tired and tired and sick. Besides working and parenting, I just want to read or watch movies, anything to comfort me and take my mind off feeling like shit. So far, the prenatal appointments have been good. Strong heartbeat, low chance of genetic problems according to the first screening and NT scan. It has been such a scary ride for me due to my past miscarriage and subsequent partial molar pregnancy. I rented a Doppler so I can reassure myself at home between doctor appointments. I have used it twice so far, and have heard a heart rate of 150 both times.

The other big news has to do with my partner. Danny has a condition called retinitis pigmentosa. This condition affects his vision. He has always been night blind, and when I say this, I mean he is truly blind if he does not have good lighting. It also affects peripheral vision. People with RP get tunnel vision that gradually gets more and more narrow, depending on that person’s progression. For Danny, it has always been a struggle, as he needs a guide at night. He can never drive or go out alone after dark. In the winter months, he has to work short days in order to make it home before dark. He has been lucky for a long time, because his vision has seemed to be relatively stable rather than getting progressively worse. However in the last few years, his eyes have been shifting, but we mainly attributed this to him being in his 40’s and needing reading glasses. Then, in the last few months, he started getting blurred vision that’s been making it hard for him to function at work. Uh-oh.

This is the life of my little family for the last few months. In June, Danny started feeling the shift in his vision. It freaked him out, but he did not tell me what was going on for a couple of months! He thought maybe his eyes were tired, or he needed a new prescription, but nothing was helping. In July, I found out I was pregnant. It was such a surprise, because we hadn’t started trying yet. My mom was on her deathbed, and we were gun-shy after the last pregnancy losses. One week later, my mom died. There was the grief that hit like a tidal wave and the burial and the memorial and the gradually worsening morning sickness. Danny stepped up as the main care provider for our 4-year-old son.

About a month ago, Danny finally shared with me what was going on with his vision. We started researching, and found that people have actually been treating his very condition since the ’80’s with something called micro-acupuncture. They stick needles into one’s hands and the soles on one’s feet. I felt like kicking us for not learning about this sooner. A crazy synchronicity: Danny has always been into astrology. Years and years ago, his astrologer told him that traditional chinese medicine would help him with his eyes. Acupuncture comes from traditional chinese medicine, so go figure!

To make a long story short, we have traveled across the country to work with one of the handful of people who offers this treatment. We chose the man who has been doing it for the longest, and has trained several others. It is a shitload of cash, but we figure if it helps, it’s priceless. On the first day, Danny underwent vision tests for acuity and visual field. Then he had two days of treatment, with five sessions each day. Today was day 3. He had to do the vision tests again this morning to see if he is a responder to this treatment. With no improvement he would be sent home. To our elation, there was improvement! So, we will be here for two weeks to continue the intensive treatment.

It’s not a cure, but it can get him some acuity and peripheral vision back, and halt the progression of the RP. Danny is noticing the changes. Colors are looking brighter and everything is looking sharper. Hopefully, he will be able to continue driving and working on a computer, so he can keep his job. This is a miracle for us. Western doctors will simply tell you that there is no cure, you will eventually most likely be (at least legally) blind, and it is a good idea to learn Braille.

The town we were initially going to come stay in for this treatment was called Mt. Hope. The doctor moved to a new town down the road this week, but the vacation rental we found is on, can you guess, Hope Court. Sometimes, hope is a really hard thing to have, when you have been struck with the cruel limitations that are so very real in this life. I’m not saying I don’t have faith. Even when life hands me a bitter pill, I try to understand the lesson, and I am usually able to somewhat sweeten the bitterness with acceptance. At least, so far. One never knows what catastrophe may be around the corner.

But that’s the thing: one never knows what beautiful spirit-fulfilling blessing may be around the corner either. One just never knows. Right now, I am daring myself to hope. We are daring ourselves to hope. Our tears are out of gratitude rather than despair. I am not of a Christian faith, but as you know if you follow my blog, I am a spiritual person. Maybe it is that we are currently in the South, where there is a church on every corner I swear, and probably it is because we are seeing the possibility of the miracle of answered prayers in our lives right now, but I find myself wanting to run to the nearest hillside and yell out at the top of my lungs, “Praise the Lord!!!”