swerta
“..how frequently parents who had supposed that they couldn’t care for an exceptional child discover that they can. The parental predisposition to love prevails in the most harrowing of circumstances. There is more imagination in the world than one might think.”
― Andrew Solomon, Far from the Tree: Parents, Children, and the Search for Identity
It’s been 6 long years since my son was born and it’s hard for me to really remember with clarity all the anguish of the early days. A million doctor’s appointments, the blur of all the family and friends surrounding us. I remember feeling like my heart was on fire, worried that God had abandoned me, fearful to pray for anything less I get that and have something else taken away.
When my son was 8 months old, things were going spectacularly bad. We had just gotten used to the idea that we were going to have a physically challenged child (prognosis= no walking) when at 6 months old he developed a severely disabling form of epilepsy- Infant Spasms. Ninety five percent of kids with this diagnosis end up severely cognitively impaired (I clung to that 5% chance that this wouldn’t be Joaquin with all my strength, but alas, no). On top of that devastating news, the seizures caused Joaquin to go legally blind. Suddenly my smiley, sweet boy who loved to make eye contact was gone. He stopped smiling. Stopped cooing. Stopped playing. Stopped looking at me. I really had no capacity to recognize this as a permanent state of my son.
My husband and I wanted to prove to ourselves that our lives had not changed too drastically. Part out of denial, part out of fear- we did the only thing that made us feel like we were still us; we planned our first family trip out of the country. Joaquin’s doctors gave us the okay, they understood much more then we did that this was not a “crisis” to get through, it was our new normal we would have to learn to adapt to it.
We chose Panama because we had traveled there many times before, and loved the island Bocas Del Toro. My husband and 20 of his closest friends had spent 6 months over 2 years building a house there. It was foreign but not unfamiliar and we had something like a second home to arrive to. The island is equipped with all the basics- food, toiletries, great restaurants and a hospital. But if anything had gone really wrong we would have had to fly back to Panama City for treatment, a one hour plane ride.
My son was only breastfeeding at the time so I didn’t have to bring much in the way of food supplies. We brought a rugged stroller- the BOB, a car seat because he was still so little he couldn’t be in the stroller very comfortably and I liked him to face me, and a front facing pack because he liked to be carried face forward.
I also brought nipple shields- because this was the key to breastfeeding.
I don’t know what I expected when we got there. Maybe I hoped that I would magically be able to have fun just because I was in a beautiful location. I thought that a break from the relentless appointments with doctors, neurologists, Physical therapy, Occupational therapy, EEGs and infant development specialists, might make life seem more normal. We traveled there with a group of our best friends- all ready to lean into a good time. But I found I felt more alone then ever. In retrospect it was not having constant things to do made me more accurately aware of how withdrawn Joaquin now was. He was so checked out it was painful. I still remember clearly the few times when he cooed- I cried in hopes that it was proof the little boy I had know was going to come back to me. So, I did what I always have done in hard times, put one foot in front of the other and just kept on going, waiting until this hard time passed.
The most memorable day of this trip was when we went to the mainland to hike to a waterfall. We had met a guy in the Peace Corps who was living in a village of indigenous Indians. He told us we could come and visit, an opportunity one should always take up if you want to really get to know the land your visiting. The village was mostly comprised of a few small huts where a large extended family lived with many similar small villages nearby. The family offered to guide us to the waterfall and so we set off. The description we were given was “its close by”, but 2 hours into the hike I started doubting that we had the same understanding of what close meant. The family of 10 were all barefoot and included an elder, a pregnant woman, and 3 kids under the age of 5, none of them found the hike remotely strenuous. I had not anticipated anything like this and hadn’t brought snacks which always make me nervous, plus it was humid, muddy and hilly- Joaquin was in a front pack quietly enduring the trip. One of the tour guides asked my husband if I had ever taken a walk before- so I guess I wasn’t playing it off too well that I found this to be challenging. 1 hour later we arrived at a beautiful waterfall, hot and exhausted I jumped right into the water, but I forgot to take my nipple shield out of my top (where I stored it) and it floated away. Now I had lost the ability to feed Joaquin-and as far as i could tell we were about 4 hours away from getting home where we had another one.
There are a lot of moments like this in traveling- or at least the kind of traveling we do. And there is not much you can do except for keep trudging on. In the end the way we hiked back was only an hour to the village (apparently they had taken us in on the scenic route), Joaquin wasn’t hungry until after we got home so loosing the shield was no big deal, and the day had been an epic adventure.
I was so ready to get home by the time we left, I usually am after a ling trip. But you know that saying “wherever you go, there you are”? My life back home didn’t have any answers either. Taking off to a far away land didn’t help, and neither did returning to the comfort of home. I figured it was time to accept that I couldn’t run away from myself to my problems.
please don't cue the sad music 