How do you measure a year in the life?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.
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…
I remember staring off in middle space on warm afternoons, chin in hands on a high school bleacher. My friends scrambled for the football below, thick with sweat, working towards unseen goals, games to win or lose. I tried on different futures those hazy afternoons- What if I became an artist? What if I travelled the world? What if I never got married? What if I did? I would glance down at my friends’ muddied faces, marveling at their perseverance, and then escape back into my thoughts. I never considered that I could do what they were doing- that I could fix my eyes and fight for every inch and make a mark. I know my school girl self. I thought I had faced hard things. Maybe I had. But I was untested in the arena of life, and I couldn’t fathom that I’d have to face storms so wide and deep that I’d swear I was drowning. In some distant way, though, my school girl self wondered what it would like, facing storms. Would it all change overnight? Would it be a slow burn? The heartbeat of the question underlying all those school girl wonderings- will I be able to handle it? Will I be enough? Will the world fall down?
Dear younger self,
I know you have a lot of questions, but all I’ve got for you is Doctor Who quotes. You haven’t heard of the show yet, but it’s worth it. Don’t skip Nine. (Trust me, it’ll make sense when you get there.) But anyways. Here ya go.
“When you’re a kid, they tell you it’s all… Grow up, get a job, get married, get a house, have a kid, and that’s it. But the truth is, the world is so much stranger than that. It’s so much darker. And so much madder. And so much better.”
“The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.”
Life is going to be so much more than you ever expected. Keep your head up. And when a handsome country boy asks you on a date, say yes the first time.
The truth is, you can only write about it using conjunctive phrases. Youth makes you think that every answer will be exact. Life teaches you that everything is a both/and, and rarely an either/or. The storms will take your breath away and put wind in your sails in the same sentence. Push and pull. Ironies and contradictions. Very, very few absolutes. I can’t help thinking about the Doctor’s wise words lately.
Simply put, we returned to UVA. We had to leave in the middle of night to get to the appointment on time. Waiting for us was the elusive diagnosis that has been lurking in the background for two years, frustrating her doctors, making treatments harder:
Hyperimmunoglobulin D syndrome (HIDS), [Mevalonate Kinase Associated Periodic Fever Syndrome]
Your life changes all at once and not at all. That’s what storms do. You finally know what haunts your girl. She doesn’t act any different. She has the longest stretch of good days she’s had in months, while the Vacutainers line the counter in the lab, her life force distilled into numbers and titers. Life gets insane for days on end with the back and forth, and she stands there giggling, looking for all the world like a healthy kiddo. She plays in the water like her whole life hasn’t changed.
I wouldn’t have it any other way.
It’s our new world.
A new world in which she has not one, but two, chronic life-long autoimmune diseases. A reality that means that she will never have a normal functioning immune system, that she will always be more susceptible to illness, and that her anemia will most likely also be a life-long fight, a specter always in the background. Two auto-immune diseases that have no cure. You can add all the math and the answer will always be less than you want it to be.
But it’s our life. Her life. Our new world.
The last two weeks have been ridiculously intense in ways I can’t even describe. There is no such thing as a good mail day anymore. James and I have faced levels of exhaustion we didn’t think were even possible anymore. It’s our life.
The same two weeks, friends slipped in and took care of things we couldn’t. They dragged me away to quiet harbor, they made sure that my children’s curriculum will be taken care of for next year, they made me laugh, they made me think, they made me remember that there is a much larger world outside of this intense storm and that land is close. Our new world.
I see green on the horizon.
“It is the soldier, not the reporter, who has given us freedom of the press. It is the soldier, not the poet, who has given us freedom of speech. It is the soldier, not the organizer, who gave us the freedom to demonstrate. It is the soldier who salutes the flag, who serves beneath the flag and whose coffin is draped by the flag, who allows the protester to burn the flag.”
–Father Dennis Edward O’Brien, USMC
“Courage is almost a contradiction in terms. It means a strong desire to live taking the form of a readiness to die.”
Honoring all the veterans in my family from every branch of the military stretching back generations. I am so grateful for those who returned home, and I remember and honor those who were lost. We will never forget. Thank you for your service.
Please, today, consider how you can get involved with caring for our veterans and wounded warriors coming home from Afghanistan and Iraq. For so many of them, the war is just beginning. The rates of catastrophic trauma to the brain (TBI) have exponentially increased for our military brothers and sisters returning from these engagements more than any other war before. The co-incidents of PTSD have also rocketed. Every day, a veteran commits suicide. Never forget that these are fathers and mothers, brothers and sisters, daughters and sons- family- so very loved. Reach out and consider what you can do to help. They have lost so much. Let us give back as if they were our own family.
This grand-daughter, niece, daughter, sister and cousin of the military thanks you in advance.
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
~ 2 Corinthians 1:3-4
This weekend always feels a little holy and a bit hollowed out at the same time. It’s the knowing and the not knowing. My sweet baby would be four years old now, on the cusp of leaving toddlerhood altogether. It’s the realization that life was never the same. It is the remembrance of how life nearly slipped from my fingers.
And yet, with each of turn of the sun, the day becomes more sweet and less bitter. The raw gaping wound is now soft and white about the edges, time’s stamp. I can breathe now. The waves crash over my feet and not over my head. A peaceful place. Its become my touchstone in the year…my way of turning my eyes to the horizon and heavens…fresh clarity. Sometimes it amazes me how much I’ve forgotten how I nearly died; and yet other days it hits me fresh, gratitude coursing through my veins that I have this moment of laughter with a freshly bathed kiddo on my lap or that beautiful sunset or those flowers on the table. When it first happened everything seemed bathed with technicolor, almost so beautiful and so clear that it hurt to look at it. That feeling fades over time, and yet it doesn’t. The veil slips for a moment and suddenly you are caught breathless by the miracle of life all around you.
It always happens on this weekend. Always I see the mosaic jewel-toned light of day and the twinkle stars of night and I remember. How the Father of all lights bent close and held me. How love lifted me from the water. The skillful hands of my surgeon and friend. The prayers that echo still.
Although the grief never leaves entirely, it is a gentle friend now. Another year given to me, another year to pray, to praise, to love. It is enough. It is more than enough.