In May 2017, I was working in a consulting agency (Zenika), and I got a contract with an exciting company that was powering the replay website for the biggest French TV channel (6play). I started this new experience as part of a team of four engineers building React Native islands inside a big native mobile app.
At this time, I wasnāt expecting that one of those four engineers would change my life forever.
One year later, after having worked hardly on those mobile islands, the project has been stopped. We were splitted in different teams. I joined the āinternationalā one (or Lemon team internally) that aimed to make the streaming platform more open to welcome new RTL (the group owning M6/6play) channels and programs.
On the same weekend, my consulting agency organized a skiing party where one of my previous coworker was part of (yes, she was also working for Zenika). After a not so long conversation, we decided to try something together.
Some months later, weāve taken a plane and spent a whole year in Canada.
The relationship was an extraordinary adventure across the ocean, and we decided to go back to France to think about the future. We spent some time in a beautiful apartment in Alsace (French region at the frontier of Germany) before finally buying a house two years later in the same region.
Time passing, and love growing, we finally decided to get engaged and visited the Mordor in Iceland.
A few month later, I was joining a new company, and I had to leave my home for a week to get the onboarding done physically. So Iāve left my wife, visited my parents living ~1h30 by car from my new job workplace and got on the train to meet my new team mates. The second evening, I received a call from my wife: she told me we will have a baby planned for June 2023. Funny thing, the baby was supposed to arrive around my birthday.
šŗšŗšŗ I was very excited and eventually got drunkk sooner than expected on that day.
Months have past, and my wife was breathing life joy. The pregnancy was going very well, and our baby was very dynamic. From the echography he was moving the arms a lot and trying to push on his feets just like he was going to walk at birth.
The 23rd of May, we were going for a short walk of 20 minutes around the neighbour when she told me that she felt contractions differently. She already had small ones during pregnancy but didnāt pay too much attention: it was a usual business from the doctor.
After this short walk, we finally got back home and played a video game when she told me: āContractions are weird, and they are very closed to each othersā. We finally ended up at the hospital where the real work started. In the car, contractions were going stronger, and stronger, and once arrived, the doctor announced us that the baby will arrive during the night or on the next day.
The excitement was there: we will be parents and have our first child š§. As expected, the night was a long one of work and pain until 9.20am finally ringed on the 24th of May. Our baby boy Ćmile is born.
One thing that nobody could have expected is that my little boy, at birth time, has ingested Meconium (which honestly looks like Venom from Marvel) that has gotten into his lungs. The problem with Meconium is that itās basically baby poo and that it sticks a lot. My babyboy was having baby poo stucking his lungs and was not able to breath as expected.
We didnāt even had the opportunity to say hello to the little thing, or even to be happy and to welcome him. He was immediately transported through the different emergancy services at the hospital until he finally got to the āreanimation serviceā. This place is the most stressing place you can ever be. Itās a service where the (amazing) people deal with babies that come way too early or that are in a very complicated situation without knowing if they will live or not.
We spent two weeks here, sleeping at the hospital, wishing for the baby to be okay.
Days were passing way too slowly. We had to feed the baby using a pipette, putting milk inside and pushing so that it got directly to the stomach. We were not authorized to hold him for obvious reasons. The baby was passing heart, brain and stomach echographies to detect anomalies. We were standing here, waiting for the doctors to finally tell us something.
This was a nightmare and a flood of hurtful feelings.
We finally got throught those days that felt like a century until a doctor accompanied by a genetician came at us to explain that our baby may have physical details that could lead them thinking he might have a genetic pathology. That they would like to make blood test and will inform us about the situation one week later.
Hearing those sentances while being tortured by the health situation of the child was destructive. The days that felt like centuries were then feeling like inifinity. We were clearly not prepared to hear that and I canāt remember a single day of this hospital stay without one of us broke down on tears.
In a week, Iāve lost around 5 kg. I was not able to eat. Sleeping was impossible. I donāt know how we managed that, but we finally got to the next week, which was also the day we were supposed to leave the hospital.
Verdict: our little Ćmile is born with Down syndrome.
Another blow to the head. We were not prepared for such a scenario. In France, during the pregnancy, you do a bunch of tests that give you a score. This score is basically a probability. According to that score, we were clearly not in the range of a high risk to have a baby with Down syndrome.
We finally got back home on that day. Staying at the hospital was not possible anymore for mental health reasons. Obviously, the excitment was not there.
I remember, while driving, having seen a dad and his two kids riding bikes on the street, and I was wondering if I will be able to do the same with my son. The feeling of jealousy was there. But the most terrifying one was that we thought we will be alone, the tree of us, until the end. We cried a lot in the first week.
At home, we did what many people would do when they donāt know about a certain topic: they google it. It was not a good idea. The internet is a good place to share information and to provide details about a certain thing but it lacks nuances. And Down syndrome is a very nuanced thing.
Also, people told us things will go better with time. While itās hard to hear, itās probably true. To me, one of the biggest error we did, and probably the most hurtful thing, is trying to project our son in the future, without having the experience to know him. We were imagining him at 40 years old, just like it was itās first day of living. This is not how life works, you donāt go to bed at 1 day old and wake up at 40 years old. Time and experience are part of the process for both the child, the parents, friends and family too.
For obvious reasons weāve been in contact with a psychologist. I highly recommend if you are in the same situation as us. It helps to throw feelings to the face of someone else.
Time has passed since the nightmare, friends were right.
It has been five months that we now live with him. Heās such a funny little boy. He smiles a billion times a day. He loves to eat, and gymnastic (we have kinesitherapist sessions multiple times a week, heās smiling and laughing at each session). We donāt think of him as a āDownā person anymore. Heās just our son, we love him and he gives this back by a thousand.
We were fearing to be alone in this life for, honestly, no real reasons, and I think itās because we were burnt so much at that point that thinking was just too painful. But the reality is that our friends love the little boy, the family has fallen in love with these smiles and almond eyes.
He loves food so much that he yells at us when the spoon does not arrive fast enough š¤£.
My boy is different, but who is not after all?
