2014, The Year That Changed Everything


Photo by Matt Sclarandis on Unsplash

This is my first blog post.  I don’t know where this will take us and who we will meet along the way, but I am excited at the opportunity to talk about a little bit about my son Hugh, while also sharing my financial interests with complete strangers.

In reality, this blog has been years in the making.  I’ve enjoyed finance since college, and even studied economics at graduate school.  I’ve learned tough lessons through poor choices and personal failure along the way.  I’d like to think it was merely an exercise in building up my financial grit quotient.  I became fascinated by financial blogs around 10 years ago when I was first introduced to the idea of an online community of like-minded individuals.  I quickly became obsessed with the bogleheads and I haven’t stopped reading it, and many others blogs since.

But why special needs finance?  Because of Hugh.  We’ve joined a new community.  One that we didn’t choose to be in.  One that I would trade away at any cost.  We’ve joined the nearly 38 million Americans who have severe disabilities.  What dumb luck…

The summer of 2014 we moved from Washington State to Fort Benning Georgia where I began a new assignment.  I had been in the Army for 13 years at that point, and I thought I could handle anything.  Hugh was two months old.  It took us an excruciating 8 days to drive across the country with a new-born baby, his two brothers, and dog in tow.  I threw myself into my new duties while my wife made a home for our family.  Two months into this new adventure I was in an important meeting.  The kind where you have to leave your phone outside.  Not a big deal.  If my wife needed me, it could almost always wait. The meeting went well, and as we wrapped up I retrieved my phone and powered it back on.  I noticed I had several missed calls and two voice mails from my wife….weird.  I will never forget those voicemails.

The first was in a panicked tone telling me that Hugh, at a mere four months old, just had a seizure.  The next message was even worse.  The seizure had been going on for 45 minutes and they were on the way to the ER in the back of an ambulance.  That was it.  No more information. Questions raced through my mind. Was he still seizing?  Would it lead to permanent damage?  Was he even alive?

I remember mumbling something to my boss about having to leave before I sprinted from the 6th floor, down the stairs, and out to the parking lot.  My mind moved at glacial speed.  What the hell was happening and what did this mean for us?  I fired up my truck and drove the 30 minutes to the hospital.  I can distinctly remember praying out loud over and over, begging God that Hugh would be ok.  He was…and he wasn’t.

After three days in the hospital, numerous tests and exams, we brought Hugh home.  Seemingly no worse for wear but also with no answers.  We moved on with life, grateful he was alive, and more appreciative of what we had.  The two weeks later…it happened again….and a month later again…then every two weeks…then weekly…

After the second seizure, our neurologist first said the words Dravet Syndrome to me.  I didn’t know what it meant, but when I researched it I didn’t think it was possible.  Later we would determine though genetic testing that is most certainly was possible.  It was the worst possible scenario.  Dravet Syndrome.  You never want to hear things like severe, catastrophic, life altering, treatment options limited.  They would be tough regarding anyone, but especially for your child. Life would be forever different for us.

We’ve had many ups and downs since those early days.  We still live daily with fear, but Hugh also brings daily joy into our lives.  We’ve joined a new community along the way.  We’ve had to become astute learners and hone our research and analytical skills on all things medically related and finance.  We’ve learned that Special Needs parenting is not easy, but it can be rewarding.  We’ve found that Special Needs Families (SNF) have unique stressors, and require unique solutions.  Most importantly, we determined we must learn from each other because there is often missing or bad information on relevant topics.  We must have each other’s backs, and share early and often.  I hope this blog in some small way achieves just that.

Categories: Uncategorized

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