I thought about getting a divorce…
from the man I married not even a decade ago…
the father of my beautiful, sweet son.
Things have changed. He’s different. I’m different. Life is far from what we expected. Sometimes I think back to who we used to be and yearn to know those people again. But they seem like two distant strangers who we lost track of over the years.
The ups and downs of our life are drastic.
The mountains we’re faced with daily often seem too high to climb. Some days I wonder if we’ll ever be strong enough to get to the top. It’s far easier to imagine our bodies failing us than it is to imagine the two of us standing victorious at the top of a mountain that seems like it was made to kill a man.
While I’m grateful for the days, and the moments, where we overcome our obstacles and make headway on those mountains, the overall environment is difficult to take in daily. Our mountains aren’t the lush green, attractive landscape that hikers travel far and wide to take their shot at climbing. Our mountains are more like the arid, desert landscape that few animals can even survive.
We struggle. We struggle daily.
Some days we struggle well…
laughing through the bad moments…
finding hope in the darkest hours.
Other days we struggle terribly.
The light at the end of the tunnel seems nowhere in sight.
We can’t come together as a team no matter how much we desire to do so. We fall victim to negative thoughts. We lose our desire to fight. We waste our time wishing things were different and hoping it would just all come to an end.
It’s difficult to not question your faith or your abilities or your whole self during this journey.
It’s difficult to look at yourself in the mirror and see anything good…
a good parent…
a decent spouse…
even an admirable human being.
Our son deals with insanely difficult challenges every single day. It’s his normal.
Maybe he faces them so bravely, without a complaint, with a can-do attitude because he doesn’t know any better.
But, as he grows, he’s finding frustrations in the things he wants to be able to so badly, but can’t. The things he tries so hard to do, but that his body fails him at doing.
Watching that happen as a parent is the most heart-wrenching thing ever. It keeps us up at night.
All we want is to give this boy an amazing life, to keep him from facing any more issues. He’s already had his fair share.
Although his struggles might not affect him as much as another child, our hearts ache for him.
He’s made for more.
He deserves more.
We want to give him more.
It seems he’s worthy of so much more than we can possibly provide at this moment. But we’re strapped. And the hard reality that we can’t give him the world, especially when there’s no one more deserving, is one of the hardest hits we’ve taken in the past few years.
Many times throughout this journey, it seems that we exhaust ourselves carrying this family out of the hole that a pediatric brain tumor and epilepsy have dug so deeply into our lives.
Our bodies and, especially, our minds are overwhelmingly exhausted as our hands finally grab flat land…
as we catch a glimpse of the break we’ve been looking for…
as we nearly reach the level ground we so desperately want to place our feet on…
but then we fall.
We come so close to the top before we plummet again to the bottom of this seemingly endless abyss. An abyss we hadn’t realized got even deeper as we were so focused on fighting our way out.
It seems we have overcome so many obstacles with our son’s medical challenges in the past few months.
We’ve fought tirelessly to get him the special services he so badly needs to be successful academically. We’ve made headway in understanding the way his brain works, in finding ways we can help him through the many struggles of his survivorship. We face these challenges blind, as we’ve found little research and resources for survivors. Things we need to help us brace ourselves for what’s coming, know how to handle what’s happening, or be prepared for what the future holds.
We’ve made positive moves in so many directions…for ourselves, for our son, and for our family. But then we reach the top of our black hole and the devil’s foot slams down with a mighty force, causing our fingers to let go without thinking before we act.
We’re suddenly airborne, crashing back down. We lose our spirit. We let go of hope. We become burnt out, time and time again, wondering if things will ever get better.
Yesterday was one of those days.
So, I thought about getting a divorce…
from my loving, supportive, fearless, and resilient husband…
from the rock of a father who carries both me and our beautiful, sweet son through this life.
I thought about getting a divorce because it would make our lives easier. It would eliminate some of the sufferings. It would reduce stress. It would make things so much different. It would change our lives in a positive way.
I thought about getting a divorce not because I don’t love him with all my heart.
I thought about getting a divorce not because he isn’t the man I want to be with for the rest of my life.
I thought about getting a divorce not because I’ve fallen out of love and I don’t want to be married to him.
He is and always has been my person.
He is everything to me.
I thought about getting a divorce because it would mean we don’t have to fight for all the things we need….
for the things, I would like to think we deserve.
If we got divorced, our financial worries would be far less. We wouldn’t be struggling to pay our bills, to put food on the table, to cover the medical costs.
If we got divorced, our son would be easily given what he needs. We would no longer fall in the helpless “middle.” We would be handed the things we’ve been told time we don’t qualify for time and time again.
It would be a nice break from fighting all the time…for everything.
It would be a much-needed gift after all the struggles.
I’ve never shared the times I’ve asked for help and been turned down. As someone who finds it so incredibly difficult to get up the courage to ask for help, I find it even more difficult to be rejected the one time I finally do.
When the financial burden of this journey became far too much…
When my body was so exhausted from all-nighters, constant worry, countless doctor appointments, and unexpected hospital stays…
When I saw that my son needed my full attention to ensure his safety, his care, his life…
I asked. I asked for help.
And they said no.
With my big green binder jam-packed with over a thousand pieces of paper… the extensive medical history of our sweet little boy…
With bags under my eyes from exhaustion, holey yoga pants, and an overdrawn bank account and not even a dollar in my pocket, I anxiously traveled to New Haven, my pride in my throat, and I asked for help.
Sitting amongst women dressed to the nine, feeling haggard and worthless, I looked around at a group of people who seemed far more well of than I did at that moment.
My self-esteem dropped even more.
Had my inability to ask for help brought us to the absolute rock bottom?
As I watched a woman with a Michael Kors bag, classy pencil skirt, sleek high heels, and freshly painted acrylics ask security where she should go to change the address for her disability check, my doubts were lifted. I figured this would probably be easier than I thought it would. I figured that maybe all I had to do this whole time was just ask.
My number was called and my hands shook as I handed my paperwork through a little slot under a glass barrier. I sat there nervously as the woman typed on her computer. Why was I so nervous? I felt uncomfortable asking for this, but I knew it was what we needed.
I knew it wasn’t my fault we were in this position.
I knew that life had gotten the best of us.
As the woman looked from my paperwork to the computer to me, I knew she felt my pain.
I applied for disability for myself because, as a self-employed writer, I could no longer continue to work under our current circumstances while my son’s illness had spiked. I applied for disability for my son because his condition was one that fell under automatic approval. As my husband and I were out of work for days each week because of ambulance trips and hospital stays, we couldn’t even catch up never mind get ahead.
Little did I know that being truthful during the evaluation for my disability, I was shooting myself in the foot. “Believe me, I don’t want to be on disability for forever. I want to get back to work more than anyone! I just need some help while I take time to focus on my son, fix my own mind, and get ahead,” I told the evaluator.
Although we see your condition and circumstances are severe, they aren’t severe enough that you can’t work a full-time job. The reason for my denial was that I opened my mouth in honesty during the evaluation. I held it together as the woman gave me the final decision on my disability, with confidence that at least we could get some help through my son’s application for disability.
When the lady behind the glass looked up at me again, I knew my spirit was about to be permanently damaged.
“I’m sorry,” she said.
Her words were sincere and I took comfort in her empathy as she explained that my husband made too much money on paper for my son to qualify. I couldn’t hold back. I burst into tears…embarrassed because I rarely cry in front of others.
“That’s our problem,” I said. “My husband makes too much on paper for us to qualify for help anywhere, but we have nothing. We’ve lost everything over the past 5 years, unable to keep up with our financial obligations as we struggle between going to work or giving our son our full attention when he’s in need of treatment.”
“This is the part of my job I hate,” she said with tears in her eyes. “When I have to tell hard-working, deserving people like you guys that you can’t get help when all you need is a little lift and I have to tell people who clearly don’t care and don’t deserve the help that they get the most benefits.”
I pulled myself together as I nodded her way, trying to express my gratitude through my expression as I held back the rest of the tears that were so forcefully trying to explode out of my eyes.
The good news?
According to the State, my son automatically qualifies for benefits when he turns 18 based on his diagnosis.
As two parents who hope that at 18 our son will be going to college or working in a field of his dreams, hearing that he automatically qualifies only added to our fury.
I’ve never left somewhere so disappointed and hopeless.
The system failed us.
I felt broken.
As we sat down with a disability attorney at the advice of someone else who fought the system for approval, he shrugged his shoulders and said, “there is a solution to this.”
My husband and I leaned to the edge of our seats hoping it would be an easy one…
“You could get divorced,” he said with conviction.
Did he really just say that?
My husband and I looked at each other in total amazement.
Getting a divorce?!
Why would we do that?
We were happily married and divorce was something that would never come from our mouths.
But, this guy was serious!
So, a happily married couple…a fierce team for a young medical warrior…a complete, unified, perfectly functioning family could get the help they need by getting divorced, by breaking apart.
“Just on paper,” he said.
We went home and talked about it.
We actually thought about it.
It was a consideration, which goes to show the degree of our struggles. But, we didn’t want to be divorced.
Even if it was just on paper.
Even more than the fact that we love each other and are proud of our marriage and the life and family we’ve built, we didn’t want some broken system to break us further. We didn’t want to be told we had to go against our feelings, our desires, and our wishes to get help from a program that clearly wasn’t made to help us in the first place.
So, we stayed married.
We struggled desperately through the next year. And I can proudly say…
WE MADE IT.
But that experience has haunted me since. I felt a variety of emotions as I subconsciously relived the details of those events in my thoughts many times since.
I felt embarrassed, I wished I hadn’t asked for help in the first place.
I felt vulnerable. I felt exposed. I felt hurt. I felt angry. I felt sad, disappointed, defeated, anxious, depressed, and annoyed. I felt helpless.
Mostly, I felt like I was failed, like my husband was failed, like my son was failed…by a country, a state, a system that we have paid into our whole lives.
As I answered the phone yesterday, it seemed that we were falling back into our black hole again. I was disappointed to hear that our son’s out-of-state medical coverage had been canceled. As a State of Connecticut retiree, our medical coverage has allowed us to transfer our son’s care to a better treatment facility after our local specialists and hospitals failed him.
In my anxiousness and panic…
through the tears…
as I worried that our son would need to change from a medical team that finally worked for him, I thought about it.
I thought about getting a divorce.
In fact, I decided I finally would.
I decided I would divorce the man I vowed to spend the rest of my life with, the father of our beautiful, sweet son.
I decided I would cave to the system. I would go against my beliefs, my wishes, my desires. I would give in so that the broken system could give us what we needed.
If you can’t beat ‘em, join ‘em, right?!
Luckily, after a few phone calls, hours on the line, time wasted when I should be working, elevated blood pressure, and a major headache, I found out it was all a big mistake.
Thankfully, our coverage hadn’t changed.
But, I had.
I thought about getting a divorce, and it knocked me down a few pegs. It dropped me back down into the valley I had just conquered.
I thought about getting a divorce because it would be the easy way out. In a life that has been everything but easy, I was ready to hang up my boxing gloves and give in. I regret that.
I’m glad I didn’t have to cave.
I’m glad the broken system didn’t win.
I don’t want to divorce him.
I don’t even want to think about getting a divorce.
Because in this difficult, challenging, and crazy life of ups and downs, he’s the rock that keeps me strong.
He’s the one who lays with me when we finally hit the bottom of that black hole after a long fall.
He’s the only one who can tell me, with his eyes alone, to get up. He brushes me off. He gives me the little boost I need to start climbing again.
I would rather be at rock bottom and married to him than living better and divorced from him.
Even if it’s just on paper.
And even the most broken version of me never wants to say again…
that I thought about getting a divorce.