The hardest decisions are the ones you make on behalf of someone else

*This post was written during ChicagoNow's Blogapalooz-Hour for June 2017. During Blogapalooz we are given a prompt and we have one hour to post. This is today's prompt: “Write about a decision you made that changed the course of your life for better or worse.”

DISCLAIMER: this is a post about a decision taken by us. In no way I imply by writing this that I think that cochlear implants or amplification are the only way to go when you have a deaf child. I firmly believe that every family should make the decision that works for them, whatever that decision is. I also believe firmly that it is not my place, or anyone else's for that matter, to judge or criticize other parents for what they have decided. I just expect the same kind of respect in return.

 

After I read the prompt for this post, my head went on a tailspin trip through all the big decisions I have made in my life. Within twenty seconds, I had a headache. For someone who hates making decisions of any kind, it turns out that I have made quite a few life changing ones. I chose a bachelor's degree that everyone around me said that had no future, I moved continents at the age of 23, I had three kids, and I just decided to change careers a couple of weeks ago at the tender age of 37. Then I have trouble if I have to choose between pizza or Thai food, pants or dress, park or pool.

But the hardest, biggest, riskier, most important decision I have ever made wasn't made for me. It was made for my son.

Any parent can tell you that parenthood is made of decisions. Most are painless and easy: cereal or toast, truck or train, sandals or sneakers. Others are trickier. Breast or bottle? Daycare or stay at home mom? Public or private? Gender neutral or gender biased? To vaccinate, or not?

When I had my first son all of those seemed like life or death decisions, terribly important, and I also felt like erring on any of them would ruin his life.

Then, I had my second son. And I had to learn the hard way that all those decisions that seemed crucial mere months before, suddenly seemed completely trivial. They paled in comparison of the task of making medical decisions on behalf of someone else, someone tiny, someone who would have to live with the result of my decision for the rest of his life. In a split second, being a mom had just turned into being a MOM. The responsibility had somehow multiplied within a doctors appointment.

Like most moms, I had planned how my life with kids was going to be. I had thought of all those aspects of motherhood that I mentioned before. But in my excitement, I forgot to make room for the unexpected, for the scary, for the worrisome. I had built an ideal picture of my life with kids, and in a minute that life was shattered.

I took an hour to cry. Then I stopped. My second and long awaited son was ten months old, and he needed me. I composed myself and decided that a negative reaction wasn't what I wanted him to see. That being deaf was very far from the end of the world, as overwhelming as it seemed that day. That we would figure out what to do.

The very first days all the decisions are made for you. The hospital has some kind of protocol, and people call you: doctors, therapists, social workers. They make sure to put the process in motion, to make appointments for you, to point you in the right direction, because you are so numbed, so paralyzed, so scared, that you are not able to operate. By the time you have to make the really big decisions, everything else runs smoothly. You have gotten used to your new reality.

In our case, the biggest decision was whether we wanted to have our son get cochlear implants. The doctors had no doubt that it was his only chance to develop oral language. The other option was to become a signing family, and skip hearing for him altogether. Rationally, I knew that there was no other option than the CIs. Anything else would have isolated us from our extended families in Spain, it would have prevented him from communicating with his grandparents, and would have made our yearly visits to Spain painfully isolating for him, as sign language is different in every country.

Still, it took me months to go ahead with it. I knew that we had a narrow window: if a kid gets implants before they are 2 years of age, the process of acquiring oral language is much more natural and easy than if they are implanted later.

I did research, on both sides of the topic. Many Deaf people are opposed to cochlear implants because they consider themselves a cultural minority. I read lots of testimonies, wondering if one day my son would question my decision, if one day he would feel like we chose surgery for him just so he would be like us, if he would think that we perceived his deafness as something that needed to be fixed, if he would turn 18 and decide to leave his implants and us behind, if he would one day hate because of it.

November 7th, 2015. 25 days post surgery. He is finally bilateral. It took us a long time to decide, and i think that was just right, because he was aware of the process this time, and he was on board. We picked bold colors for his implants so he sees them as something positive and fun, something to embrace, rather than hiding them. We chose the green in the photo the first time around, but for the second set he chose it himself: Red!

November 7th, 2015. 25 days post surgery. He is finally bilateral. It took us a long time to decide, and i think that was just right, because he was aware of the process this time, and he was on board. We picked bold colors for his implants so he sees them as something positive and fun, something to embrace, rather than hiding them. We chose the green in the photo the first time around, but for the second set he chose it himself: Red!

I also did research about the surgery. Three hours in the OR are not what any mom wants to think about. Hundreds of hours of therapy or rehabilitation are no piece of cake either, and have impacted the whole family's lives in ways that I would have never imagined back then, sometimes for better, sometimes for worse.

But then one day I thought about music. When I learned that my son couldn't hear, I stopped listening to my beloved music for a long time. I didn't want to enjoy something he couldn't share. And when I thought about that, I made my decision. We would go ahead with the cochlear implant surgery, only on one side at the beginning, and we would try for him (and us) to learn ASL too, so one day he could decide what world he wanted to live in. He would be able to enjoy the beauty of music.

As scary as it was, the surgery was a success, and three years later he was part of the decision of going bilateral. I can barely remember how life was before. Changing batteries, driving around, and speaking therapy/medical lingo have become second nature by now. We still have a long way to go, and I still question myself every now and then. But I know that I did what I thought would give him the more options, what would let him make a decision for himself later on. I know that I made the right decision for him.

And as hard as my decision was, I think every day about parents who have to make decisions much harder than mine. And about those who don't have the opportunity to make a medical decision for whatever reason, be it insurance, geography, or a court decision. And I deem myself lucky.

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