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I’ve been quiet lately. Why? Cancer.
Yep, you read that right.
And I almost wish it was because I, myself, had cancer. But it’s not.
It’s the worst nightmare parents can have. It’s my almost three year old son.
There were some signs if you read back on the blog…
Remember I had that series about visiting Hawaii On The Cheap with Kids?
Well, the next post in the series was going to get real cheap because we started to not do much as my son was getting sick.
Even in some of the posts I did make, looking back, the clues to what was going on were there. It was generalized problems of course. Nothing that was highly out of the norm for a toddler, but now we know the reason.
I haven’t been able to get myself to continue with the series because it’s just too hard to dissect what we were doing as my son was starting to crash. The hindsight is 20/20 issue makes it really hard to look back on that in any positive manner.
Maybe eventually I’ll get back to it, but right now there is just too much guilt involved.
As things got worse, the blog reflected it
After that, I wrote a post about trying to do Freelance with a Sick Kid.
Little did I know that post wasn’t just going to be a snapshot in time about a short term illness. It was only the beginning on what will no doubt be a complete change to my life.
So what’s been going on?
Well, to sum it up, he started to get sick on our vacation. And he continued to get worse when we got home… and worse. Eventually we were admitted to one of the main children’s hospitals in our state, 3.5 hours from home on CHRISTMAS EVE.
We’ve been here since. After our pediatrician told us to get up to that hospital, we ran home, packed a weeks worth of clothes haphazardly, cleaned the food of the counters and hit the road.
Our dog was dropped at a boarding facility on the drive up (he’s still there). Our presents were left under the tree. Technically they are still sitting under the tree, though, it’s more like the tree, as in dead needles, are sitting on top of the presents.
We spent a month inpatient in the hospital, got a diagnosis (not good– this cancer has about a 50% 5 year survival rate) and he underwent two rounds of chemotherapy. We discharged to stay in the area one week ago until the 3rd round of chemo in a couple weeks.
Finding, accepting, and appreciating generosity…
Much to our surprise a friend of a friend graciously offered a small guest house for our use, which, after trying out Ronald Mcdonald house, is much more to our low key, quiet lifestyle liking. Staying close is necessary as we had three appointments on three days last week, plus an emergency room visit. Over the weekend we had to have a home health nurse come out and help with something and an on call Dr. phone call for something else we “watched” and resolved without us needing to go in.
Grief and Focus
Whatever the phases of coping are, I suppose, I’ve entered at least the second stage. The palpable, heart wrenching, grief and sense of loss that entered my thoughts every moment have subsided to a point where now I work to cope with what we have to deal with.
For the first few weeks we cried daily. I entered a strange high alert coping mode, where I was highly productive and made a website to inform friends and family of ongoing developments and allow for donations. When I wasn’t in crisis mode I was in crying mode.
I was actively mourning the change in our life, the anger and fear of the loss of some part of childhood my son will have. I was angry and sad that I saw him mature leaps and bounds in a few short weeks the way no child should ever have to.
And, of course, I feared for what this meant for his future.
Now, over a month later and I’m trying to be hopeful. I’m trying to establish a new norm and give him some sense of structure, routine, and normalcy as much as is possible in this nightmare. I only cry now and then.
I get through the days by only thinking about the next few days. If we think too far ahead, the grief sets in again. And panic, and overwhelm.
The hardest thing to deal with right now has been the complete loss of control.
We’re not at home. We are accepting the charity of others. I’m still not really working (yet we don’t qualify for any social safety nets). We have appointments seemingly around the clock, interspersed with an upcoming schedule of chemotherapy, surgeries, radiation, transplants and immunotherapy that will last a year minimum if everything goes to the best expectations. And of course the frequent monitoring and visits that would come after therapy for years.
That’s the best case scenario.
Worse, we have to go to another state or states for treatments not available to us here or clinical trials.
We hope these things will be covered by insurance.
Being OK with not being OK, and accepting help…
Crisis mode continues as we work to save every cent possible and “plan” for future possibilities that leave more families of children with cancer bankrupt than I care to hear about.
And, as I said, I’m still not working. I did get a couple weeks with some work at my per diem job the week we went into hospital (crazy, right!?) due to sick calls and vacations during the two holidays. But I haven’t had any other offers since. I have to get some hours as that’s where we get our insurance.
Practically speaking, continuing to search for work is nearly impossible. I’m 3.5 hours from home and I have absolutely no reliable schedule. It would be hard enough to maintain a job and use your FMLA. Getting a new job? Ha. And even if I did, you’re not eligible for FMLA immediately.
I’m looking for and applying for remote opportunities and per diem work in the area we are right now.
I was highly resistant to asking for or accepting help. It’s not something we normally do. There is a lot of guilt in it, which I’m working to get over.
Since we’re “that cancer family” like you see on a brochure now, I suppose it’s exactly the time to be willing to accept any and all help we can get.
The guilt part arises from the fact that it’s not like we’re broke (yet). So it feels really strange accepting help. Of course, the help that has come in takes a lot of the pressure off to feel I have to find regular work. It really offsets some of the strange expenses and costs associated with basically setting up in a new city on no notice.
I’m highly aware of the fact that most offers for assistance come in early on. Which, in my mind, is when we don’t “need” it yet. So it just feels really weird. But I know we will need it eventually, and, by that time, the natural course of interest and shock will have worn off for many and they would be less inclined to offer support. So, we’ll take it when we can get it. And, I’ll just keep practicing cognitive dissonance in working to be ok with it.
Finding more support than I ever hoped for in my Personal Finance community!
I do want to mention that we’ve had some amazing generosity from friends, especially some of those in the personal finance space.
Special thanks to Angela at Tread Lightly Retire Early, Chelsea at Smart Money Mamas and 76k Project for being a great behind the scenes support team. As well as many others who have offered support, like Dillon at Dollar Revolution for advice on navigating a major health issue that needs crowd sourced support.
They plus many others have offered some financial or emotional support during this difficult time.
It was a bigger turnout than I ever could have hoped for or imagined would have happened based on my less than one year of blogging. But there are some genuine, caring people out there, and I’m extremely grateful for the little community that I’ve become a part of. Having people to lean on and talk to, even those you’ve never met in person is so important in a time like this.
I know I have made some real friends that I will keep in touch with throughout this journey and into the future.
To wrap it up…
There’s so much to say here. I feel I’m, as is in my character, losing sight somewhat of what I intended to relay in this post. So I’ll wrap it up.
Suffice it to say, my life, my priorities, my goals have all taken a new turn.
Make a life worth living. Live it every day. Hold those you love close.
Don’t sacrifice the present too much at the sake of the future you plan for.
You never know when that future might not happen or may look nothing like you ever intended.
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