This time I tell this story from a father's point of view.
The birth of your first child is special. You are on seventh heaven. You want to teach your son everything.
Mother works morning and afternoon, Dad works evening and night, a lot of father son quality time, you build a bond, you want to protect it well.
Then suddenly when he was almost 4 something happened that you can't help but just stand by him. Make sure he doesn't get scared. Within 24 hours he deteriorates until his breathing stops. The doctors were able to save him just in time.
They put him in a sleep coma for 5 days, in an isolation room because the virus is very contagious for the first few hours. They don't know what to do. You feel so powerless. Then he wakes up, paralyzes, intubates, all kinds of IVs and cables for the monitors.
He can't say anything. But you can see the question in his eyes: "help me!!"
We always have a tune before going to sleep, where he finishes the tune. This time he couldn't say it but let 1 big crocodile tear. That moment I broke into a thousand pieces. I never got over that.
You want to make him better but even the doctors don't know what it is and what to do. He is at that time the first in the Netherlands.
Your child is physically broken, your family is broken, your youngest son wants nothing to do with you because you have been away too long, you are broken because everyone is pulling on you, your wife is broken, your relationship is broken, you wants support and your wife wants support from you but you can't give it because you ask for help yourself. Everything is "on hold" because Geuko has to get better. You don't trust the doctors anymore because they don't know and don't want to accept anything from the outside. Always ask for a second opinion, that is your right.
You will get different values in life, you worry about other things. Your relationship gets a different place in the rankings, you let it go, jealousy is exchanged for understanding. You're better off worrying about other things.
Nobody is going to understand it only the people who have experienced the same, that's why the AFM community is very important there are the only people who understand.
You find out who your real friends are and what your family can do for you. Some friends can't handle your situation and walk away, others don't understand your way of thinking and turn their backs on you. You can't explain it either because you barely understand it yourself. Family gets jealous because you get more attention than the rest because you need the help. Antivaxxers attack you and call you bad parents, other people think you can work, try to explain to such people that it is not that easy.
Because of all the regulations and ignorance they even send him abroad. After 140 days PICU for storage.
He is no longer welcome in his own country for a year and a half and we beg to send him to the Kennedy Krieger Institute.
We're still fighting for it, we've even had to hire a health insurance doctor to get the insurance over there—they can offer him perspective in life there. We are standing still now, they can make him stronger and in the meantime we hope for a few small miracles.
Getting his ventilator in order, that is only possible in the KKI, they cannot manage it here, rehabilitation in their own country is also not allowed here due to ventilation rules.
You need so much patience.
Geuko can no longer embrace me that hurts, you often argue with your wife because you do not understand each other because you think differently and are both broken, even after 6 years. You have stress and you eat your stress away. 10 kilos more.
My tip: Exercise, it clears your head and gives you new insights.
Rely on the family and friends who are willing and able to help you. Go collect money and register with the AFM community, you will need them.
AFM is rare and real.
Remember this: "accept the diagnoses, but not the prognoses". (Victoria Arlen)
Keep on fighting for your child even if your not seeing a end!! Take a breath and a rest and you can go further.
We still have hope, when we see Braden Luke Scott. In the same period, Braden and Geuko became ill and almost the same loss. Rachel was my first contact with someone else with AFM. Braden is lucky to have the right people around him, thankfully. look at him now, we are very proud that he has made it this far. That gives us hope. This allows us to hope for more recovery than now, the KKI specialists say so themselves and that there is more potential. So we stick to that.
