By Nathalie Foppen
One year has passed again, so it’s time for a new blog, today on World PTLS Awareness Day (March 8th)! Every year, of course, there are huge milestones for the now 14-year-old Jelle. But this year there were a few very strenuous ones.
Last year Jelle increasingly wanted to be home alone and that went very well. By now it’s going so well that he really wants us to be gone as often as possible! First we practiced keeping and using the key: motorically he was not very handy with that. Jelle has a huge sense of responsibility: he’s very careful with his stuff, so he never lost a (bicycle, locker or house) key ever! And he wants to learn. He indicated earlier that a phone would be very useful now for all involved, so he got one. Practicing how he can call us, and how to send voice messages through WhatsApp. He now finds it so peaceful to be home without us, that we reduced the after-school-care from 3 dayparts a week to 1. What he does need when he’s alone, is an interim prognosis of our homecoming, but he never wants us to come home immediately. What a step forward in his independence!
Matters of the heart
There have always been stress-triggers with Jelle. It used to be the hairdresser, so we had one coming to our home. He can now go to the regular hairdresser. Then it was the dentist, so we went to a patient pediatric dentist for a while. Meanwhile, we can visit the regular dentist around the corner. Now the hospital is thé nr 1 stress factor, not surprising of course. Earlier we went to the pediatrician every six months, then once a year and in the last few years only if we were worried about something. That went well. We did heart research every couple of years in the Children’s hospital, but that was always stressful for him. There were 3 distinct heart defects: a narrowing in the aortic arch, a heart valve that looked abnormal and an opening in the ductus (it usually closes after birth). Reasons to be alert. There was already talk of placing a stent, but because there were no pressing medical issues, it was a possibility for later on in his life. In September, the medical team thought it would be better to already place the stent and to eliminate the narrowing now before the abnormal valve would come under more pressure. That was a shock, of course, but also logical, so we agreed. Preliminary surveys had to be planned and the intervention itself in November, including an overnight stay.
You can try to be lighthearted about it to Jelle, but because he doesn’t know exactly what is going to happen, his stress level simply is sky high. We have planned an extra ‘talk only’ morning, to prepare him as well as possible, to have him ask questions, to show everything. But … it builds up, until it’s his turn (for whatever examination) and then the bomb will burst; he will cry and be angry (to his parents). Inhale, exhale, don’t think too much and just get through it with all our strength. He has endured it all as bravely as possible. What you can do, you’ll do; be with him, reassure him, show understanding for his grumbles, questions and worries, make jokes, comfort him, get him his favourite sausage rolls… He raced out of the hospital the next morning; get me out of here! Of course it was nice that he had a week off from school and got some beautiful Lego, but he was really ‘spooked’ in the days after, it was very intense to experience, for all of us. The stent is placed well, and it seems big enough to stay there if he is an adult. The ductus is closed, but 2 valves are abnormal, so we’ll remain alert.
‘Grandma is with the dolphins’
Our kids had little to do with death in their lives. Unfortunately, their great-aunt died in October, and only a few days after the stent-procedure, their grandmother (my mother-in-law) died. What is death then? And where are people who have died now? According to Jelle, grandma is on a nice warm beach with the dolphins. What a wonderful thought. Jelle certainly did not want to go to the funeral of his great-aunt. But he attended the service and funeral of his grandmother. We talked about it, and both kids dealt with this loss completely different. Jelle didn’t want to see his grandmother after she had passed, but he helped out during the service moving the coffin and lighting a candle. He was amazed at the many acquaintances attending the service, and was completely captivated by the mechanism by which the coffin went down into the grave. He thought it was a nice day, but he was sad for everyone who had to cry, especially for his brother. We did not see Jelle grieving, even later on he was not sad. In the following weeks he was mainly concerned about one of our cats dying. That he is very afraid of that and how sad he will be. We do not try to explain it all too much; he talks about it and deals with it in his own unique way.
Mr. Jelle has saved up a long time and bought a cool playseat for racing on his Playstation4; he is the best PS4-Formula 1-driver we know! He is still a big Max Verstappen fan (Dutch Formula 1 driver), so we will see Max again like every year during the Race Days in Zandvoort. He still plays soccer every week with great pleasure, he loves (ice)skating, bowling, swimming, music, the Dutch island Terschelling, our cats and his brother. He is cheerful and enjoys going to (his great) school. His body is transforming big deal now, and although he often is very charming, he now gets cheeky sometimes, calls us a ‘soup chicken’ or ‘dude’, and he always forgets to put his braces on. But hey, if puberty continues like this, I will be very glad. I am only too proud of this energetic dude.