I was a deep water lifeguard my last two years of high school. This was not your run of the mill lifeguarding job. The training was intense and rigorous, and by the time you were done, the state of Virginia designated us First Responders, on par with the requirements placed on EMTs and Paramedics. The final test to become a deep water guard was the most difficult of all. These tests were shrouded in secrecy. If you were not a deep water guard or supervisor, you were not allow to view these tests. To view it would give away the punchline, and probably scare the potential lifeguard from ever testing up.
My first test involved a guy who was six foot eight and about three hundred pounds. At the time, I was five seven and half his size. I had trained hard, and I was ready. (Or so I thought.) Things were progressing normally until I saw him “drown”. Following procedures, I entered the water and approached him. He was acting like a ‘normal’ victim- I approached him, got him on my tube, and began heading for the closest ladder. A few seconds later, he, in all his height and bulk, began going ‘crazy’. He flailed, he grabbed at me, he was doing all he could to get out of the water. He was going to drown us both. I kept trying. I was nearly drowning myself, at that point, though in the back of my head I knew my supervisors would not allow that to happen. I kept trying. The whistle blew, Brian became his normal, teddy bear self, smiled at me and helped me over the side, as I was exhausted and could barely get there. I had failed.
What is often not known about active drowning victims (thanks movies!) though it should be obvious- is that they are fighting for their life. When a guard gets involved, it is not uncommon for a drowning victim in their terror to attempt to climb, grab, or otherwise compromise a lifeguard. The final test for a deep water lifeguard is to learn to let go, let the water close over their heads, and push away from the victim- so that they can return to the victim in a better form. Even more counter-intuitive, it is sometimes necessary for the guard to flip the victim into the water, nose down, to gain control.
This my supervisors told me as I lay panting and worn out on the itchy concrete. It would take me two more times before I could past the test. It goes against everything you know and everything you’ve been taught to let go and let the water close over your head. It’s as much bio-mechanical as it is psychological. Your brain fights you the whole time.
I’ve thought quite a bit about that test in the last month.
The first time I heard this song, I was driving alone, a small miracle. It was a good thing too, because barely a few measures in, I was weeping and had to pull to the side of the road, as I couldn’t see. In the play, Hamilton’s eldest son Phillip has just died in a duel. His marriage has been strained to the breaking point even before his son’s death. The way his sister-in-law, Angelica, describes grief throughout the song…it is so devastatingly, profoundly, true. Anyone who has lost a child will immediately recognize threads of their own story. Anyone who has experienced profound grief will hear their story. I still to this day can’t get through the song without emotion. The Hamiltons move uptown after this, out of the flow of politics and intrigue, to a quieter place, to heal.
August is always a difficult month for us; the month we lost our child, who would be nine years old this year. As I’ve written here before, I almost died myself, because doctors did not realize the severity of what was happening. What no one told me was how the grief would swamp us, my husband and I, and how it would feel easier to just swim down, to borrow a line. I didn’t think I’d live through the pain. But I did.
I’ve been thinking about that horrible test, the loss of a child, quite a bit this last month, too.
It’s time to move uptown. It’s time to let the water close over my head and push away.
The steady attrition of decisions that have happened over the last three years as we tried to fight for an equilibrium between our old life and the new reality of two very sick kids finally crested this month. It’s time to stop running, stop making bargains, stop trying to act like there can be a ‘normal’, because there isn’t one, and there hasn’t been one for quite some time.
If you follow my blog’s Facebook page, you’re probably prepared for this final blog entry; for other readers, this post is coming out of nowhere at you, and I’m sorry. I’ll try to speak concisely.
The most clear example I can give you of what I’m speaking of is financially. It’s cold and hard and clear, emotion stripped.
When Ellianna first got sick, we were your typical middle class family. We had some credit card debt that was almost paid off, a car loan. We were renting, because we had just moved to the area and weren’t sure where we wanted to settle. We thought we had pretty decent insurance. We could eat out every once in a while; Starbucks and Target runs were common. We had a little bit in savings. We were never going to be ‘well off’- we had six kids after all!, but we were happy.
The unimaginable happened; she got very sick.
Our insurance, as we discovered, was awful; we never had thought through what a high deductible low payment plan would do to us, what high copays would cost us. Especially because her illness(es) were so mysterious, the coding was never right, and still, three years later, we are untangling a mess that happened in the space of one week, three years ago in February. It’s not unusual even now for a ‘new’ bill to arrive related to that very first admittance.
When you are overwhelmed, you start making ‘rob Peter to pay Paul’ decisions. We can pay this medical bill on this credit card because surely, this is it…It’s okay to go out to eat tonight, we’re all so exhausted…it’s been so bad, surely it couldn’t get worse.
Ellianna got sicker, and then Josiah joined her. Thankfully, most of Josiah’s major hospitalizations fell after we were able to change our insurance plan, but still. It was too late. Most of the medical debt we have is related to Ellianna’s first few months versus all of Josiah’s (and her subsequent transfusions, surgeries, and hospitalizations) combined. This debt takes up over half of James’ income.
As things progressed, and the kids got sicker, other things began to fall by the wayside. Steady maintenance on the van, for example. A dear friend of ours realized what a challenge this was for us about a year and a half in, and then began doing the regular oil changes in the van, helping with minor repairs.
So many things. So many decisions. I remember the month a fellow parishioner brought us a month’s worth of groceries, full of pantry staples, full of things my kids loved that I couldn’t afford for them. I didn’t realize how much they had brought and they slipped away before it set in- and I remember just sinking down in the midst of my tiny kitchen and weeping, with joy, and with grief- joy that it was taken care of, joy that my kids got some of their favorite foods, and grief- grief that anyone even had to bring me groceries in the first place, grief that we couldn’t provide for our kids. Grief that they were so sick.
There are so many other stories, so many threads, many of which I can’t tell you because they aren’t my story to tell.
Anyways…we moved. Home. To Tennessee. James had found a much better paying job with much better insurance. Four days after we moved into our house, the bathtub drain in the main bathroom cracked. It was an old eighties style garden tub- huge. The water poured into the laundry room below. The cost to replace the drain neared a thousand dollars, and we realized that it would be far more cost effective to just put a new shower/tub combo in the bathroom than to pay to have this one repaired. It wasn’t very useful for our family in our present state. We had a little bit of money put by. It would strain us, but we also couldn’t go without a working bathtub for Ellianna- it’s required as part of her protocols that she take a certain type of bath two to three times a week. Given all the facts before us, we made the best decision we could with the facts before us.
Two weeks later, after all the required pieces had been purchased, demo and rebuild had begun, our van died. The cost to repair the damage would be almost six thousand dollars- for a van that was only worth five thousand.
It couldn’t get any worse….
By some miracle, an odd miracle indeed, as it meant that the reason we could borrow this person’s car was due to an injury that meant they couldn’t drive for months, we were able to borrow a car. Coupled with James’ work car, a car donated to us by a fellow parishioner the year before, we could get the family every where we needed to be.
Ellianna lands in the ER for pain management and GI treatment not once, but twice in a month, per her GI’s instructions. We dropped almost a thousand on medical co-pays and bills alone in the month of July.
A few weeks later, during a rain storm, a power issue causes damage to our main electrical board coming into the house, and a computer, our tv, and our microwave are damaged. A few days later, our stove and oven stop working, as well as our dishwasher. Probably due to the same damage. The dishwasher we’ve been able to repair, but the other things- we have no resources to do so.
A day after the dishwasher stops, James’ work car dies. It, too, has reached the end of its useful life, as the cost to repair the damage is in the thousands, and the car itself is only worth about $500.
We now own no working cars. We couldn’t afford even a used car right now, and we won’t be able to afford one for quite some time.
Josiah requires surgery this month- a surgery that was put off throughout the summer for a variety of reasons. Ellianna requires surgery in October. Both children have multiple specialists appointments each month. We are heading into another intense medical season that has been ramping up all summer.
A few days ago, my cheap, pay-as-you-go phone stopped working. I can’t even replace it.
If this is the financial damage of the last three years of this fight, I’m sure you can imagine how it has affected our family emotionally, physically…
The Lord has given and the Lord has taken away. Blessed be the name of the Lord.
Financially, it means, as we have done once before, to get rid of anything we can- internet service being one of them- to reduce burden. Which leads me to this final blog entry. I can’t afford internet here at the house, or the web hosting for the blog anymore. I haven’t written here in months, and it is time to let it go. I am deactivating the blog’s Facebook page today. As I have no access to the rest of my social media, I have temporarily deactivated them all. This blog will sit here until the web hosting renews, at which point, it will shut off too.
I don’t know when or if I will return. I don’t know what uptown looks like for me yet- what happens after my head breaks the surface of the water again. I don’t know. I’m gonna trust that God is leading me where He wants me.
We have fought throughout this all that I would not have to go out into the world for work. I have tried and successfully had freelance commissions over the years that would fill in the holes we were often experiencing, but there was a point that it was so crazy medically that I couldn’t even homeschool the kids- all of the children except for Ellianna were put in public school for two of those years.
But as things have grown so desperate, I must find work outside the home now, and I covet your prayers. I have no idea how this will look or how it will affect my family. None of my children want to return to a public school setting. I have no idea how the kids’ appointments will work, how we’ll cover them, especially the surgeries. I’m not even sure how I would get to a job at the moment, but I’m trusting that those questions will resolve themselves. How I wish I lived in an area with reliable public transport!
It’s time for me to turn into the storm and face it. Face the grief. Face the reality that my children are pretty sick and we can’t borrow from the future anymore. All we have is now. Especially with them. It changes on a dime. No more running. No more trying to balance things that are inherently unable to be balanced.
I admit tremendous sadness and grief at watching this era of my life passing. I helped midwife some pretty amazing dreams into reality with some pretty amazing people the last few years- a few have become best-selling authors, one has started a publishing company herself- and it’s been a joy to help birth people’s dreams into solid reality. I always hoped to give birth to my own dreams, too, in time, with my art, but it is not to be at the moment. It’s time to tuck it all away. All this year I have been working quietly on a huge, beautiful commission, one that I am very proud of and can’t wait to see launched in the world- and I won’t get to see it spread its wings and fly. But the fact remains that I kept company with it all year, through the most intense season I’ve faced yet, and I poured my heart into it. I am proud that it will go out into the world without me. It was a worthy companion and I hope it will find many hearts to companion with as it ventures out. I’m glad to go out on a high note. I don’t even know how I will tell you about it when it does launch, but maybe that doesn’t matter. It will be there all the same.
May the Lord bless you and keep you, dear friends.
Until we meet again…
My heart breaks for you all. You are in my prayers and my heart.
I am very sad to read your news and will miss (have missed) your blog posts. There have been very few blogs I follow, and I started reading your blog after Elizabeth Foss’ first restore workshop. I will pray for you and your family. I will be reminded of you bc I have some of your art :-). May you have the hope that God gives -that which surpasses our understanding and intelligence. Warmly, Sarah
you know we are praying for you. Lord have mercy.
Oh Joy, I’m not sure if you will even see this comment but I am praying and I will continue to pray. There just are no words I can write except that I am praying