Anyone else? Me.
It’s time we meet.
I think it wasn’t the whisky sour. It was the paint that we used after we had moved into our new home. That paint we used to make an old house to a perfect home for our future family. And I, pregnant with my son, put that paint that smelled badly on the walls. It could well be my fault. Isn’t it always the mothers who screw up?
Self blaming is stupid. Doesn’t help nobody. Still, I do it.
Last Sunday, the thought about having a "special” mother’s day crossed my mind too.
Our son is a bit older, 25 in July. 3 1/2 years ago he was diagnosed with a very large AVM Spetzler Martin Grade 4 after two epileptic seizures. Before that, we had no idea.
He had just finished his training to be a young professional and had gone for a two week holiday trip to Israel with his Dad. A few days later he would have entered the military service which is compulsory in our country (Switzerland) for every healthy young man. It turned out that he wasn’t as healthy as we had always thought.
The doctors in Zürich are great. They are our best cards in a difficult game. We are so lucky to live in a country with excellent health care. The doctors examined our son’s brain thoroughly and decided to leave the AVM be. They estimated the risk of a bleeding as very low, the risk of a treatment as rather high. The epilepsy was kept at bay with medication.
Our son’s AVM is big and complex, Spetzler Martin Grade 4, > 6 cm, in the right side of the brain. “Tricky to deal with”, that’s what our doctors called it.
Fast forward 3 1/2 years: What a bumpy journey lies behind us! When I have to explain our situation to outsiders I compare it to living in a earthquake zone. You never know when it hits, you never know how strong. You just have to hold on when the ground shakes. Then count the damage and start to rebuild… until the next one hits. Our son had several epileptic seizures. Every time when he went into cramping, we had to fear that he was having a bleeding of the AVM. So, we had to call the ambulance and control the overwhelming fear until he had the results of CT or MRI.
It has been almost impossible for our son to have the ordinary life of a young adult. So, he started his IT studies without trusting its success. He lost his driver’s license, his temporary jobs. He lost many of his friends who were just not ready to deal with the luring risk and what it did mentally to our son. And he lost his trust in life in general and in himself especially. I admire him, that he has never given up.
In March 2020, a week before the lockdown in our country, our son had a bleeding, against the predictions of the doctors. He was lucky that it stopped by itself and that it didn’t cause any severe damages. The doctors decided that treatment was the better option now. They started with a series of embolization, every two months. With covid 19 delays it took more time than planned.
So far, our son had 4 embolizations. They all went from okay to well. I felt like dying of fear every time when they shoved my son into surgery. And the waiting for THE call afterwards is beyond words. I know you know.
Now we are at a point of the treatment which I call doomsday: The doctors are planning on doing one more embolization to reduce the AVM and to minimize the risk of a bleeding during the craniotomy which will take place the next day.
They told us that their goal is to make the whole AVM disappear to prevent a regrowth or a bleeding of the remaining blood vessels. They want our son to be completely AVM free. But they prepared us that it will come at a cost; most probably there will be an impairment of the left arm and leg. Our son will need Rehab for at least 4 to six weeks. And this is if ALL goes well. If it doesn’t go well, I dare not think.
It’s up to our son now to decide when he is going for surgery. What a decision to make at 25! (How to deal with questions of letting our son become independent from us parents in these times of long lasting crisis is a topic for another time we meet.)
So, that’s where we are now. Yesterday our son had another epileptic seizure. It’s always the Grand Mal that he has. So, full program with the cramping, falling, stopping to breathe, turning blue. Very scary, even if we know the script by now. We rushed once again to the hospital. He is fine once more. And I’m so relieved again. Living in the earthquake zone.
For today, our son had promised to tell us his preferred date of surgery. We will see. I hope it will be as soon as possible, in June. Let’s get it over with.
I work as a teacher. I quit my job after the last meeting with the doctors. I want to focus on supporting my son and surviving my own rollercoaster of emotions along the way. Again, I know that you know.
So, this has been a long introduction. I hope you are happy to meet me. I sure am happy to read your posts here. It’s rare to meet someone who seems to get how it is. Really get it. No even my closest friends really get it.
I will not let my writing run through the correction program as I usually do. I don’t find it as important anymore to make a good impression. No use and time for keeping up the facade. That’s something I’ve learnt with the earthquakes. My native language is German. So please overlook my mistakes.
I wish you and your family all the best. May the doctors find just the right treatment to cure your son. May he be lucky to turn out fine after all these unspeakable challenges in his young life. I wish you the strength of all mothers. We are strong for our children from their first breath to whatever end.