4 Money Lessons From Our Son’s Rare Diagnosis

This is a guest post from Sandy over at Nature Girl in a Technical World. She tells her touching story of adjusting life, and finances, to unexpected personal circumstance changes.

In the fall of 2014, we had a typical suburban life. My husband and I worked full-time, and we were happy with our careers, our family, and our financial position. Two kids, ages five and 10 months, lit up our previously boring lives. We owned a house in a great neighborhood, had a savings account for emergencies, a monthly budget, and healthy retirement plans. Our kids went to good schools and we loved our weekends filled with hiking, beach time, and relaxing with friends. We’d met with a financial coach to create goals for retirement and saving for our boys’ futures. In essence, we rocked. Everything was firmly in place for our lifestyle and the future we wanted for our children and our retirement.

Then, our world shifted

Credit: Sandy K Mickey

Our youngest son, Jack, was diagnosed in late 2014 with a rare spine condition called Progressive Infantile Scoliosis. The diagnosis shoved us unwillingly into a realm we weren’t comfortable with and had little experience in. Suddenly, we faced complex care, overwhelming medical bills, and an uncertain future for Jack. Those first few months were a whir of doctor appointments, second and third opinions, research, specialist appointments, x-rays, MRIs, insurance calls, and countless other tasks. We discovered our large metropolitan children’s hospital did not have much experience with his condition (most don’t). I spent hours on the phone, as little existed online, and we eventually discovered Greenville Shriners Hospital in South Carolina, where he still gets treatment every eight weeks.

During this time, we decided I needed to leave my job. It was the easiest and the hardest decision I’ve ever made. I’d thrown a lot into my career – passion, two degrees, and 15 years. But I never second-guessed it. I still don’t. Our financial plan, however, never considered one income. Nor did it include medical bills like we were about to see. Our comfy financial position was in for a shock.

The Foundation

When our first son was born several years before, we hired a financial coach. She walked us through creating a budget, tracking expenses, and practicing healthy savings habits. When Jack was diagnosed, we knew our position and had tools already established. It was a huge relief. Our online budget program kept budgeting, our tracking program kept tracking, and bill payer paid the bills. If there’s one thing I point to for keeping us afloat during this time, it’s the foundation our financial coach laid out for us. Though we didn’t know it at the time, we now recognize the importance of what she did for us so that we didn’t have to worry about money in those first few months; we were able to concentrate on Jack.

Taking a Deep Breath

A few months in, our heads peeked out and we looked around. I’d been out of work for three months, and it was now time to face the future of one income and years of medical expenses. Even though we had the basics established, we found it difficult to talk about shifting our long-term plan. We’d just never considered it before. We were short on sleep, and spending the few hours we had in the middle of the night figuring this out would not have led to marital bliss. Instead, we talked in quick bursts and did the best we could, but it took several months for us to wrangle our thoughts.

Eventually, we made a big decision to live off only what was coming in. We knew one more hit was all it would take to put us under. So we started living on the cash we had. I signed up for rebate programs and downloaded apps to stretch our dollars. We also took advantage of discounts for cell phone plans and car insurance through my husband’s work. We cut out expenses we thought were essential before. All those tips you read about online? We did them. We’re still doing them. It’s amazing what we save each month by combining tricks.

Shifting our Perspective

Credit: Sandy K Mickey

Before Jack’s diagnosis, we donated money and time to causes we care about. We still donate time, but we had to stop the financial giving. While this was difficult to do, it was even harder for us to switch gears entirely and be the ones to seek out help. My first big step was calling our local Shrine. Because Jack receives care at a Shriners Hospital, he’s eligible for assistance through our local Shrine Center. We can’t say enough for what they do for us and other families. They assist us with travel, navigated us through the first few months, and host gatherings so we can connect with others in similar situations. In addition, we only pay what we can for Jack’s treatment at Shriners Hospitals for Children. Donors take care of the rest.

About six months into Jack’s treatment, we were beginning to adjust. While we still needed to work more on our long-term plan, we were accepting our new direction and letting go of previous notions of what our futures looked like. Our budget had received its make-over, our spending was down, and we were pulling together a new vision for ourselves. We still had financial goals, just on a longer timeframe. We were beginning to “turn the ship” without losing ourselves in the tide.

Our Takeaways

Looking back, it’s amazing how precarious our situation was, even with our good foundation. No one can truly prepare for a situation like this, but there are a few things we encourage everyone to do:

1. Create and follow a budget

We are so thankful we already had a financial bedrock established. Our budget was good, we managed our spending, and we knew our future goals and how to get there. Not having these during the first year of Jack’s care would have been disastrous for us. I can’t imagine having to develop budgets, begin tracking expenses, or developing a long-term plan under these circumstances. If you don’t have a spending plan or budget already established, drop everything and do it now. Even better, establish or double-check life insurance to ensure it covers what you need. With only one source of income, our life insurance policy is the best expense in our budget.

2. Establish a big emergency fund

I wish we’d put more emphasis on long-term “emergencies” in our original plans and saved more than four months of income. I highly recommend everyone think about this scenario in their planning and have six months to a year of savings. Letting go of prior dreams is hard, but doing it under pressure hurts. With a healthy savings account, you may not have to. [Read: How Much Should YOU Have in Your Emergency Fund]

3. Know where you stand financially

Medical emergencies can take the strongest minds and make them putty. Normal thought processes and decision-making are taken hostage by urgency, a frantic mind, and the desire to fix something you actually have control over. When you know your financial position, it’s easier to determine how to pay for those bills, which are often presented upon arrival at a hospital appointment. Maybe you have a credit card with a low rate or a healthy savings account. You may know upfront that you need help and can reach out early. Whatever the case, knowing your position will help you make healthier financial decisions during stressful times and avoid unnecessary expenses and scams.

4. Accept available help

There are thousands of organizations, businesses, and individuals ready to help. From local churches and restaurants to national non-profits, the help is there if you seek it. This support network has enriched our lives beyond our finances. I learn about resources I wouldn’t have known otherwise, and get access to programs only through these groups. Their support is overwhelming, and we are so grateful for them. Without the Hospital, our local Shrine, and other programs, our lives would be drastically different both financially and emotionally. Their donors are our heroes, and we hope one day we can give back. It’s in our long-term plan.

New Beginnings

Most importantly, we have overwhelming gratitude for what we do have. We are grateful for the health we have and for medical care that many in this world do not have access to. Jack has a phenomenal medical team and is in the hands of one of the best surgeons in the world for his condition. Shriners Hospitals for Children have saved his life and given him a normal outlook. As long as they provide treatment for a condition, the care is often free. We don’t take these things lightly.

Credit: Sandy K Mickey

Jack’s care now is relatively boring, at least for us. It’s our normal. And while we may not have the retirement plan we originally dreamed of or the annual vacations we took for granted, our family is doing well, and our path is still a good one. I’m now a freelance writer and blogger, which allows me to both earn money and take care of Jack’s needs. We’re in this for the long haul, and now our financial plan is too.

Bio:

Sandy is the voice behind Nature Girl in a Technical World. She’s a former Park Ranger who left in 2014 to care for their infant son and his rare spine disorder, for which he wears a permanent plaster “Mehta” cast around his torso. She writes about their lives “wrapped in plaster” and how they aim for a life in nature, even when their son’s disorder is at odds with it.