Being Mum of an autistic child of 2 ½ years old can make you feel some contradictory feelings.

Which mum with a healthy mind would celebrate the fact your son is officially considered disabled between 50 & 79% of his capacities?

Well, I did.

Tonight, when I received the official letter saying so.

When I first heard a year ago the word “Handicap” in the same sentence as my perfect & beautiful son’s name, I was devastated. I felt so angry, so powerless I couldn’t stop crying.

One year ago, all my worlds collapsed.

The first world to collapse was the one of the happy, busy Mum of 2 juggling with a crowded agenda and traditional family crisis. But now, my husband and I, would have to learn what it means to be parents of a special kid, with all the care and medical advice, with all other people's looks and judgments implied with this reality.

Then my family vision collapsed. I just had failed an IVF and the perspective to deal with a 3rd baby (potentially at risk) while struggling with my son erased suddenly this dream.

My professional and career world disappeared too. Just after saying the sentence about the handicap, the doctor told me I couldn’t work anymore for a while. He didn’t know how long. At that time, I had left my former job to change my career to be true to myself and my values and I was about to go back to school. Well, living my long-lost dreams was also lost from that moment.

Then the guilt appeared.

Just at the same time with the question “why?”

And for this question, there is really no answer, rational or scientific, so it nourishes the guilt. The fact is we don’t usually know exactly where autism comes from. In our case, they talked about the fact my baby was ill in utero and nobody noticed it at the time. My baby was ill in my belly and the doctors missed it. I missed it. I didn’t feel anything and then, I didn’t help him. I felt as if I failed him totally. And then guilt became stronger because I realized I was responsible for his situation.

Did I tell you all this happened the week before Christmas? It was the perfect timing for our family, especially after the failed IVF. Obviously, I cried. A lot. I couldn’t find the strength to get over it and imagine what our future could be.

Then it was New Year’s eve. We were only the 4 of us, so my husband and I spent this evening manifesting the year to come and talking about what was going to happen for us as individuals, couple, and family.

It was the time for action.

And by action, I mean visiting a lot of doctors. Telling our family. Confronting several medical opinions and others' perceptions. Spending many days at the hospitals. Writing a lot of letters and filling plenty of files. Getting familiar with abbreviations and handicap legislation.

And then we waited.

3 months locked down didn’t help us and it made the wait even longer.

Then we tried plenty of care. We had a lot of medical examinations, blood tests, scans, MRI... And we learned to live with the “we don’t know” sentence.

For 10 months, my answers to all the questions you can ask me are all the same “we don’t know”. What is exactly my son’s diagnosis, how would he be able to grow? We don’t know and we fear it will become our new normal for life.

So now is time to rebuild our world.

Obviously, it’s not the old one we used to know.

We are rebuilding everything brand new. We are rebuilding our family and the place of each of our special kids in it. We even think of welcoming a third child. We are trying to recreate our couple too since all this changed our loved life forever.

We have changed our parenting vision since no parenting advice, rules or models apply anymore. It is both liberating and disorienting. But I think it makes me a better Mum, a more spontaneous, observant, listening, and intuitive Mum (and a very much more tired one too). I have to find joy in what I can, to see the world through my kid’s sensitive eyes.

We have rebuilt our perception of living with the concept of inclusion. Our view of the world and people has changed so much doing so. We had to let go of all our social stigmas since facing disability we are all equal. We are more mindful and live more in the moment since we have not a clue about the future. We are learning to live our family life to its fullest.

We are rebuilding my career. I went back to school and I’m getting a degree in digital marketing. I’m creating a small business to help other small businesses with similar values to amplify their voice and tell their story to the world. That way, I’ll be able to take care of my son while trying to still be myself and not giving up on all of my dreams. And by the way, it will be to have some money.

We have rebuilt another kind of way of life. With less income, we have made choices to live more minimalistic which is a good way to stick to our eco-friendly values.

But despite all of that, I still feel guilty. I feel guilty for my two sons.

I feel guilty for my eldest who has to live with all these changes with us and suffers from some of them. And of course, I feel guilty for my youngest who will be special all his life.

I think I will feel guilty all my life because it’s what usually happens for mothers of disabled children like mine.

Especially tonight, when the relief of having a small administrative victory makes you realize you are happy to read on a paper all your worst fears.

This bittersweet feeling belongs to the reconstruction. I’ll have to get used to it, exactly like millions of mothers deal with it.

All this is hard, but it’s meaningful. It has a purpose and it shapes my life’s mission day after day.

And the good news is, I’m not alone in this. I have a husband, a family, some loved ones, and you. The very fact you are here, reading these lines with me proves to me there is a brand new world in reconstruction. People are beginning to talk about inclusion. Mothers share their fights, their struggles and overcome their guilt and sometimes, their shame. TV shows, magazines, stores are beginning to show all kinds of children.

And for all that, I’m grateful and I can only thank you for offering me support and hope.

*A family portrait of her beautiful family that Izzy painted and wanted to share with our YZM community!*

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

A (Small) Bittersweet Victory by Isabelle Nougier-Gallen