She’s smiling now…but you should’ve seen the dirty look Tamiko gave me after I wrangled her into this family photo.
We met when I was a Junior in High School and, corny as the Iowa flatlands, it was love at first sight. Nearly 30 years later, he is still the love of my life and I can’t fathom a future without him in it. They’ve been years of incredible adventure, unconditional love, and crushing hardship. We’ve grown up together, grown into each other and along the way, created a rich tapestry of life.
We weathered all the typical problems that come from being too young, mostly broke, and completely idealistic. We stuck together through my 4 years in the military and after I got out, had the most beautiful baby boy in the whole multiverse. He came 2 months early on an April Fool’s Day and since we almost lost him in the delivery, the fact that he had Achondroplastic Dwarfism didn’t faze us at all. We had a live baby boy and he was perfect in every way.
Looking at Dad–from the bunk of our old trimaran.
Sometimes, kids with Achondroplasia have pretty serious medical complications, and our kid had a bunch of them. When he was born, a social worker sat us down and flat out told us we should give him up for adoption because, “No one will think any less of you–it’ll destroy your marriage if you keep him. We can just discretely adopt him out and then you can try for another baby a few months from now.” I shit you not. That woman is lucky she didn’t end up double throatpunched.
Eli being a monkey, during a nebulizer treatment. He was trached for 2 and a half years. I scheduled a tonsillectomy for Eli, on my husband’s birthday. LifeProTip: Don’t do that. Our boy came out of surgery with a trach, instead. Got it removed right before starting kindergarten.
I won’t lie–it was insanely hard making it through the endless loop of medical crisis after medical crisis. It felt like he was practically dying on us, every time we turned around. But he was ours and we had each other and the three of us were unstoppable. Together we could overcome everything, anything–we were badass and yes, we rocked.
Eli, 4th grade…showing us how strong he is, before having emergency neurosurgery.
They took a Dremel tool to the hole at the base of his skull, and also chopped off half of the first vertebrae, to give his spinal cord more room.
So yeah, things we hard, but we were making it through. Right up till we were staring hard down the barrel of The Most Epic Summer Ever. We’d bought a house and a dog; we were making good money; and most important of all–Eli was healthy. We were gonna go camping. We were gonna hang out at the beach, teach him how to surf, barbecue the heck out of everything and give him a summer to just be a kid, you know? Enjoy the magic of regular summertime kid stuff, for once in his life.
Yep, May of 2006 had us paddling like crazy, trying to catch that Epic Summer Wave. But the barrel turned out to be something other than a wave of summertime bliss. It was, instead, the barrel of a gun. A powder coating gun, in the hands of my boss. Apropos of nothing, he started laughing and then, unbelievably, turned the gun on me and pulled the trigger. Several minutes and 95,000 volts later–I’m permanently messed up.
We lost everything that was important. Steve no longer had a wife who could function as a partner. Eli no longer had a mom who could do all the things moms are supposed to do. I no longer had a me…we were broken and adrift.
For years.
Our rich tapestry has grown awfully threadbare. It’s stretched and torn and unless we can make some pretty drastic changes, it might not even be fixable.
This is the story of how we’re putting our lives back together.
How we’re facing this new future, and making it into something we can all live with. This is the story of how we’re beating the odds, bringing an old sailboat back to life, and then taking her around the world. This is the story of our family’s journey from darkness into light.
We’re glad you joined us. See you out on the Great Big Blue…
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