In daylights, in sunsets In midnights, in cups of coffee In inches, in miles In laughter, in strife
It’s been almost a year since I’ve written here. The pictures tell the story, but it’s hard to show the depths of the darkness and the brightness of the light that circumscribed our year.
Ellianna got sicker. Much, much sicker. She was hospitalized for a week in late November. We travelled back and forth to Cincinnati Children’s Hospital twice in February and March for extensive testing. She underwent surgery in May. We know not much more now that we did a year ago. We’ve added a few more acronyms to her laundry list of diseases. We established that she has the MTHFR mutation, and with the help of a nutritionist and treating with methylation donor medication, she has finally turned a corner and has experienced some healing- gaining weight, stabilizing blood work, and better overall color. We’ve learned to treasure the moments and live in them. Will she get even better? We hope. Will she get worse? It’s possible. When the world-renowned specialists at Cincinnati are adding her to studies and consulting cross-disciplines…let’s just settle for our Elly-bird is a rare, rare kiddo.
I was not underestimating things when I said in my last post a year ago that I was worried what the cost of the constant trauma would be on our family. It was profound. We’ve spent the year learning to heal from all of it; a few family members are in counseling of one sort or another. Mental health is as important and physical health, and I implore you to consider counseling too if you have wrestled with as much medical trauma as we have (or even less! I wouldn’t wish what we went through on our worst enemy.) It has helped us knit back together the strands of the tapestry of our family, which was getting rather strained trying to hold so much. We are a healthier family now in all respects than we have been in the last three or four years. It feels a bit strange, to be honest. Once you’ve got on the adrenaline train of constant medical chaos, it feels very odd when it all finally stabilizes and you realize you can actually breathe again. You almost have to be taught how to do it again, because the stress has made you forget.
Let’s not forget the light, though.
We have spent so much time laughing. Splashing. Dancing. Learning to drive. Learning new things. Growing. Thinking. Hoping. Imagining. Painting. Drawing. Building. Loving. The list goes on and on.
We lived, and we loved. We failed, and we tried again. We fell, and we got back up. The measure of the shape of a year.
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.
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.
It appears we have another interesting summer on our hands. So much has happened already, and you can read all the updates here, at our medical fund page. I try to remember to come here and post Handbook entries, but even that hasn’t happened. You can always see those over on Instagram. I keep trying to do them even in the midst of it all; it helps calm and center me, helps me keep my peace.
I have quite a bit of catching up to do now that the move is finally over, don’t I? I was able to keep sketching a bit but just finally got to paint in the last few days. I also have been playing with a new lettering pen. I wanted to capture the spirit of my old neighbourhood before I left it with this sketch, though the colours of the actual neighbourhood are a bit more subdued. Artistic license! 😉(57/365)
My parents had the funniest little bird sculptures in their front garden. I knew I had to bring their funny little faces and long, long legs to life in a sketch! They still make me giggle just looking at this page. (58/365)
This quote has taken on more meaning for me than I could ever give words to; I also basically sobbed through the entire second half of the audio book version a few weeks back. I don’t recommend listening to it while driving. 😉 It is fitting this one lands here during Holy Week, on Holy Wednesday, the Feast and Sacrament of Holy Unction. (59/365)
I keep playing with cloudscapes. The 365 practice definitely keeps me stretching. Loved how the sky turned out; could have passed on the landscape. Practice, practice. (60/365)
I didn’t plan it this way, but the quotes are lining up so neatly with Holy Week. On Good Friday, in the dark, we look forward to the Hope. (61/365)
These birds keep showing up. (62/365)
If you remember my little girl dreaming of spring from a few weeks back- she has discovered that it has sprung! (63/365)
I remember when I sketched this; it had been so frigidly winter cold and then one day it was finally warm. I remember standing outside and just basking in the warmth, like a cat. (64/365)
I sketched this the day we found out we were moving; a little country house down a country road from the echoes of my memory. (65/365)
I’ve finished my first full Handbook; 65 little 5 x 5 paintings. I had no idea where this little #365daysofpaint project was going to take me. It’s been such a delight and an eye-opening experience. I can’t wait to see where it takes me next.
It has been forever, dear ones. I know. I was so in the thick of living it that I couldn’t pause here to tell you all about it, but as it is all coming to a close now, I can slip in here quietly with my tea and fill you in on all the news.
Where do I begin?
Ellianna passed her sixth birthday, as healthy as her new healthy can be. It was a strange feeling, to be honest. So many February days past have been filled with hospitalizations and stress and illness. I do think we finally got to the bottom of all that troubled her, God willing. The cycle of her illness has evened out and almost disappeared (if you didn’t know where to look)- meaning that we finally, finally found the sweet spot with her treatments and diet. Glory to God!
Josiah, too, continues to heal. They stepped back some of his medication, to evaluate if some nerves have started firing, and so far, so good. We won’t know for sure until his next colonoscopy (when they replace his c-tube), but we are all curious to see. He may or may not have to have surgery this summer; he’s reaching an age where they may be able to replace his tube without putting him under, but as he also needs to have some exploratory surgery for some other things, they will probably do it all together all at once. All that aside, we have definitely reached a new season with them both, a normal, an expected path; they will always have these chronic life-long incurable illnesses, but their illnesses no longer define them or us in such a profound way as they have these last few years.
The real news, however, and the reason that everything suddenly got so quiet- was some really tremendous changes for us all. James found a much better job back in our home state of Tennessee, rather unexpectedly. Given the children’s medical needs/insurance (we can’t be without it!) there could be no downtime between the two jobs, and we had to move in basically a week. Not only did we manage to do it, we actually had space left in the truck! Four years in pursuit of minimalism definitely paid off. It was a wonderful feeling, and it was a blessing that we could move so quickly because of it.
For the first time in the history of our marriage and family, we split up for an extended period of time, which felt very strange. Some of our children still had things going on in Virginia; some doctors appointments, some birthday trips (Swan Lake! The Symphony!) gifted by the grandparents before we knew of James’ job, some music lessons…and of course, closing up our house here and preparing it for inspection. A few kids here, a few kids there, and mom and dad in different states. It went well, but I’m glad we won’t have to do that again any time soon!
Homeschooling and my 365 painting practice definitely took a back seat this last month. The kids did continue in some of their schooling on their own; we grabbed these unschooling journals for a bit of fun and a change (while still giving a bit of structure- a must in our family), and they were a big hit. I was able to sketch and paint in some small snatches, but not at all in the way I expected to. I somewhat foolishly told my friend whose commission I am working on that I thought once the bigger part of the move was over I would have plenty of time to paint and finish before the month was up; he (far wiser than I) knew better and told me not to worry and return to it when the time was ripe. So that’s on deck in the next few days and weeks- such adventures!
Ah, there is the other news: a beautiful, wonderful, far reaching commission, with a fellow artist halfway around the world; one of the serendipities that could only have happened in the universe’s own timing. It is so exciting and so life-giving, but I can tell you absolutely nothing about it! HA. All in good time.
As I’m writing, I keep thinking of my dear friend who faces some incredibly difficult medical challenges; we spent a long afternoon over coffee recently comparing notes about what life is like with chronic illness. It’s a very lonely path to walk some days, whether you are the patient or the caregiver. It’s hard for many to understand the challenges. But as we were talking, she said- all I can do is live now, in this moment. Her words have stuck with me, and have become somewhat a whispered mantra: lean into the beautiful now. Give me eyes to see and to rejoice in the place where my feet are set.