About the authors:
Hikaru Nagahama and Stefanie Santana are the parents of Mia Sachi, who was born missing her entire left leg. Hikaru is a businessman working in Tokyo, and is simultaneously pursuing his Executive MBA studies at IE Business school (university) in Spain. Stefanie is a law student at McGill University in Canada. She is currently living in Montreal with Mia Sachi.
About this article:
This is the first article of a series inviting the reader to learn more about life as parents of an amputee child. One of the very first things we noticed when we became parents of Mia Sachi was our very limited knowledge regarding amputations and the difficulties of being an amputee in Japan. There are over 14.2 million amputees (1 person /[SVS1] 845 people) and 3.6 million disabled people (1 person / 33 people) in Japan, but it is uncommon to cross one on the streets. This has created misunderstanding about amputees and even taboo about this condition. We want to change the perception surrounding amputees and create equal opportunities for them so that Mia Sachi and millions of amputees around the world could live in a fairer and empathetic society. These series invite you to follow our journey to turn these goals into reality.
The beginning – By Hikaru Nagahama
The blessings through our daughter’s amputation②
Mia brought us more strengths and peace
The blessings through our daughter’s amputation①
From the moment I learnt I was pregnant, I became over-the-top cautious. I am pretty sure that you can’t name any pregnancy super-food I did not eat. During my first trimester, when I flew from Bangkok to San Francisco and back, I stayed semi-sitting during landing, because bouncing on my bottoms could cause a miscarriage. I refused to swim in my condominium’s pool for fear of bacteria, while living in Bangkok with temperatures above 30o Celsius nearly every day. This took so much effort and discipline for the go-with-the-flow type of person I am.
A bomb of disappointment
When at 17 weeks of pregnancy my doctor told my husband and I that Mia was missing her entire leg, it felt like a bomb of disappointment. I had never been that disciplined in my entire life. What did I do wrong? Plus I don’t drink or smoke, I don’t do drugs, I don’t even drink coffee…it felt like a low blow from life. I was to be the mom of an amputee girl, in the middle of law school, while literally living at the other side of the world from my husband. Not a dreamy situation for a first-time mom.
Despite this new chaotic reality, a heavenly strength started growing in me and my husband. He described it as a blue sky, where clouds had dissipated. Don’t get me wrong, it is not like I became insta-zen. I worried, a lot. I remember crying because I did not know how I was going to handle diapers. With Mia missing her entire leg, I wasn’t sure diapers were going to stay in place. I worried about how I was going to confront the sad looks of my family members when Mia was going to be born. Until then, the only babies we welcomed in my family were chubby and fully-limbed.
And to top it all, ten women around me were pregnant, including my sister-in-law and my cousin; and guess who was the only one expecting an amputee baby …that’s right, me. To add to my worries, doctors warned that congenital (from birth) amputations usually imply other health issues. But somehow, deep inside, I had peace – sometimes so deep inside, it was hard to find. I knew that whatever condition Mia Sachi had, my husband and I could handle it.
At the moment of delivering Mia, when I heard her voice, that mysterious peace materialized into true strength, whatever it was, I was ready! With the same passion as a goalie is ready to receive penalty shots, I was ready to receive any diagnose, spend whatever hours at the hospital, and foregoing any treatments. Fortunately, all the drama I was getting myself ready for, never unfold. Beside her missing her left leg, Mia Sachi was a perfectly healthy baby. Like most healthy newborns, she needed 4 things: love, milk, warmth and a clean diaper. Talking about diapers, turns out they would work just fine and leaking, if any, would come from the right side, where her human leg is located. I realized worrying was pointless, I had to take this challenge one day at a time.
Happiness because of her amputation
Two months passed and I became so used to Mia’s amputation that it was like I could not see it any longer. Around that time she started physical therapy, which encouraged me to leave the house more often and re-start my social life after having a baby.
That’s when I realized that getting used to the fact that I had an amputee child, having the discipline and energy to take her to her weekly (sometimes by-weekly) treatments and check-ups and continued the multiple exercises at home; were not the biggest hurdles to overcome as a mother.
I still had to learn how to confront the look of others, of strangers that had never seen an amputee in real life. However, I had a huge advantage, I was one of those people a few months earlier. Before hearing the word amputation coming out of my doctor’s mouth; I barely had any contact with amputees.
Whenever I would cross one, I would feel terrible for them, send them a pity look; and then, 2 minutes later forget the event. Now roles had reversed and I was on the receiving end of that awful pity. To say that it made me feel uncomfortable is an understatement.
No one deserves pity. No one.
It is just an inefficient transaction, a lost-lost situation on both ends. It was now my turn to change the game. Having been on both ends, I knew that I could not expect to change people’s judgement, but I could change the way I could react to them.
I could be a victim, get offended by every look, by every comment or I could choose to be happy.
I don’t mean happiness in spite of my child’s amputation but because of it. If I could truly embrace and enjoy the opportunities Mia’s amputation brought to my life, I could turn, perhaps, other’s pity into understanding and even empathy.
This was not easy. I was still in a healing process, I was still figuring things up.
But I figured that I had to act quickly before others’ perceptions destroyed my joy, one look, one sentence at a time.
I had to do this for Mia. How could I possibly teach her confidence if I, her mom, could not find confidence in her perfect imperfections?
I allowed myself to cry for my “misfortune” one last time, a long and very ugly last cry, while walking alone on the lakeshore during a cold march evening. Those were, if my memory is correct, my last tears for Mia’s amputation. From them on, the tears came from seeing her amazing progress. From seeing her sitting with one leg, to standing, to start walking with her prosthetic leg. There is something very special about her resilience, seeing her finding her own ways to do the same things other kids do.
There is no one day that she wakes up and tells me “Mom, Mia Sachi is happy”.
I can only think that choosing to be happy was the best decision thus far. Happiness is a secret weapon, one that can turn storms into blue skies, as described by Hikaru.
I owe this happiness first and foremost to God, that has shown me the strength I had in me; to my amazing husband, his incredible capacity of never complaining or looking back; my amazing Santana and Nagahama family, my friends spread out in different continents, in particular Chef Walter Lee in Thailand, who I very much look up to and who encouraged me to post the first picture of Mia’s amputation on social media. I want to thank all of them, and all of you who are reading this article, your support will help us to empower amputee children. Find out how in our coming articles.