Your Child Is Unique In The World by Isabelle Nougier-Gallen

You know your child is unique in the world, because his face, his character, even his genetic heritage will never exist twice in the world. As a mother, I’ve always thought it is magical. It is part of the Life miracle we carry in our womb and I’m always amazed, we, parents, create such a unique being. I love to think our babies choose us as parents and family to live on this Earth and their appearance in our life is no chance.

But, when a few months ago, the geneticist told us “Your son is unique, his genetic deletion doesn’t exist in the worldwide database” it had another sound.

It wasn’t the cute unicity I used to see in our child's individuality. It was the unknown, the blank page threatening his future, his life and somehow, our own family life.

We are now part of the rare chromosome disorder community, the orphan abnormalities.

Two years ago, they told us my son was disabled. They talked about autism and the fact he was ill in utero to explain his many differences. As I’ve already written about it, my heart broke, I felt overwhelmed with guilt and we tried to rebuild our world otherwise.

But the diagnosis search went on. IMR, genetic tests… we had them all. We are so lucky in France; all these test costs are supported by our National Healthcare. It takes time, a year in our case, but we could afford to wait a bit to have some answers.

I didn’t expect any answer the day we went to the Hospital genetic ward. We had done so many tests and exams where nothing was found, I never thought they could find something. You can’t read autism in genes and they told me it was because he was ill in utero, so what could I expect?

I was shocked when the geneticist told us they found something. When she told us it was something unknown I couldn’t hear her anymore. It was unreal. The orphan diseases or abnormalities are what you see each December at the Telethon on TV, not in my everyday life. I couldn’t focus on her explanations until my husband asked the only question I’ve asked myself every day since my son was born: am I responsible for his state? Does being ill in utero explain the abnormality?

- No, she answered him. The deletion happened while the fecundation was made. It is Nature’s work, not yours. It is pure misfortune.

When I heard her, I breathed for the first time in 3 years. I couldn’t stop repeating to myself “this is not my fault, this is not my fault”. The guilt lifted at last.

It was a new beginning.

We run a couple of more genetics tests. Since we had frozen embryos for our third pregnancy, we needed to know the risk this could happen again. It took 6 months to be cleared. This chromosomal deletion was created “de novo” which means it happens without any genetic reason. How absurd it is when you think of it.

We tried to know more about the deletion but as the geneticist told us, no one ever saw a case like our son before. We were facing again a long list of “we don’t know”.

I’ve also quickly realized it was very hard to explain to administrations and institutions something that didn’t exist before. I’ve tried to get a genetic card and a Handicap card but it was impossible to give it to me since there is no track in any database of such a disorder.

So we took back our blank canvas.

Since the only thing people understand and know is autism, we run for it. Having a diagnosis is a blessing. Knowing is a real gift as many families will never have this kind of answer.

But it doesn’t change our daily life or our son’s care. Since there is no medication nor special treatment for his state, the only solution is to stimulate him, to create for him the most positive environment to explore his possibilities.

And as always, to love him as he is, with all our heart.

We already changed our life to adapt to his condition. I’ve got my digital marketing degree and launched my small business working from home. This is not much yet but this is the beginning.

With less income, we learned to enjoy living a more minimalistic life. We got used to this new normality of having a kid who can’t attend school and go every day to the hospital. With my husband, we trained ourselves to be caregivers for autistic children. We also found an English association for rare chromosomal disorders. They helped us to realize how lucky we are. Our son is special, unique, but not ill. He can only grow and improve himself. We don’t need to fear for his life, just his future.

The world doesn’t know yet how to welcome him, society isn’t ready yet to have him but we are here to support him.

The plus side of being unique as he is, is no one can predict his future. It can be fearful and we are worried about what is going to happen for him but no one can tell us he won’t be able to do this or that. There is no foretold future, no forbidden things, no limitation.

For him, everything is possible and impossible at the same time.

Life has changed but still goes on. We are expecting our third son in a few weeks and our family is living through this new normality. We know why we are fighting and for whom. It really shaped our life’s mission day after day.

Our voice has joined many other family’s voices. We want our son to find his place in this world. We want people watching through his eyes rather than watching us out of curiosity. We want to support each other in everyday life’s challenges. We want kindness to become the new normality.

And like every parent, we want our son to live his best life, to enjoy it as much as possible, and to be loved for who he is: a unique and wonderful human being.

Isabelle Nougier-Gallen is a French mum of two special boys on a journey to live in mindfulness and kindness with every living soul, while respecting our planet. She blogs about kindness here and she is an eco-friendly digital storyteller for positive impact small businesses. She also has an interest in self-development, self-care, books and the arts. Feel free to contact her and follow her adventures on Instagram @not_a_star_just_a_mum and @pimpyourbestlife