Tim was born 2 months early. 3 weeks after his birth we received the terrible news that Tim has serious brain damage. Our world collapsed. Only sadness. How do you proceed then? The floor is for Jessica, the mother of 6-year-old Tim who suffers from a severe form of cerebral palsy.
The pregnancy didn’t go well from the start, because I constantly had blood loss and hard bellies. After four hospital admissions Tim was born with 31 weeks and 5 days. Sure we were worried, but Tim is doing well anyway. Tim is breathing himself! After a week, Tim can leave intensive care and return to the pediatric ward in the hospital in Woerden. I exchange the Ronald McDonald House for a mother-child room in the hospital. The specialists of the LUMC in Leiden had assured us that everything would be fine with Tim; the white spots they had seen on the brain echo would disappear, so we didn’t have to worry about that at all.
Look at your child
Look at your child. Focus on that and not on what I have said or what has been seen on the MRI scan
In the hospital in Woerden this is continued and these spots turn out to be serious. A few days later, Tim receives an MRI scan. Tim must be admitted for one night at the WKZ in Utrecht. Immediately after the MRI scan is completed, we have a discussion with the doctor. She tells us the bad news: the brain damage that Tim has sustained is serious. On a scale from 1 to 4, Tim is rated at 3; the second-heaviest form. We ask what the expectations are. She says: “Between difficult walking and a wheelchair.” And we have to deal with that. But she also says: “Look at your child. Focus on that and not on what I have said or what has been seen on the MRI scan. ”
The painful word “disabled”
After a few weeks in the hospital, Tim can finally go home because he is strong enough. We are so happy! But at home we can only talk about our grief with each other. Talking to other people about it is very difficult for us. You must then say that your child has brain damage and will be disabled. Those words do not occur in our vocabulary. We don’t see Tim like that at all. He is just our sweet happy Tim
Search for the cause
Within the hospital, they did everything the could possibly do to find out
A period of time follows with many examinations and checks in different hospitals: to the pediatrician, the neonatologist, pediatric neurologist, the ophthalmologist and examinations of his heart and lungs. The pediatrician is always happy when she sees Tim and is surprised that he has developed more since the last check-up. “He’s doing so well. Tim surprises us time and time again, “she says. These questions are important to us: How come Tim suffered this brain damage? What is the cause? Why was Tim born too early? Is that the cause of brain damage? Did I do something wrong during my pregnancy? Is it my fault? Within the hospital, they did everything the could possibly do to find out. But unfortunately, except that it is not my fault at all, we do not get an answer to any question.
No visit please
Tim’s first year is tough. In addition to all the hospital visits and therapy at home, we receive a strict instruction from the pediatrician to treat Tim with care: Tim should not get sick, not go to a daycare center, not swim for up to two years, not go to waiting areas, not visits from people who only coughing or having a cold, limiting visitors to a minimum and not having parents with children under the age of 12 visting us. That was such a difficult assignment and sometimes not feasible with all hospital visits. Tim receives an injection against the RS virus every 4 weeks for a year. You are proud of your child and want the maternity visit to show your child, but we are very reluctant, which was not always understood by everyone. That incomprehension hurt us. During the visits to the consultation center I can wait with Tim in a separate room where no other children come. Tim has such vulnerable lungs that I am afraid he will become ill and die. When I am walking in the stroller with Tim and I meet strangers who look intently into the stroller and make a compliment, I look suspicious and hope that person will leave quickly, afraid that Tim will become ill.
Staring and commenting from strangers still hurts and will never disappear, but I do my best not to see or hear it
The world of Tim
In addition to the weekly physiotherapy that we have had at home from birth for Tim to stimulate his motor skills, Tim went to a medical daycare from the age of one and a half. And we followed the Early Intervention program. For this, Marieke came to our house every week to playfully stimulate his development. I also trained with Tim every day. I have to be careful not to forget to be Tim’s mother instead of his physical therapist. When Tim is two years old, he can go to the rehabilitation center, but unfortunately he is on the waiting list for six months. Tim went to ‘De Hoogstraat rehabilitation center’ in Utrecht three mornings a week. Tim is trained hard there. This is noticeable by his longer afternoon naps. The Hoogstraat is like a warm bath. The practitioners there are so positive and enthusiastic. They ask how you are doing and assist you with all your questions and with obtaining the tools that Tim needs. Those people really work for your child with heart and soul. That positive feeling is nice. Recently, I spoke to another parent who wonders if we are not sad about Tim, because everyone here is always so happy and cheerful; and how hard it is if you lose friends because they don’t understand. Grief is mainly at home there. The why question continues to nibble. Why Tim? Why us? If only everything were different. I would do anything for Tim to be healthy. Friends try to understand you, but they do not always or only partially succeed. In the perfect life such a thing is hard to imagine. We live in two worlds: in addition to the normal world, there is another world for us that other people do not know, the world of Tim. With all care and support to bring him as well as possible and as far as possible. But we have to go further. For Tim! We try to be positive about life, no matter how difficult some days are. By doing things on the weekend that an ordinary family does, such as taking a walk and drinking tea on a terrace. Staring and commenting from strangers still hurts and will never disappear, but I do my best not to see or hear it.
Tim will make it
Tim’s future is still “between difficulty walking and a wheelchair”. The uncertainty is painful. I know it is coming: the house needs to be adjusted. Because we have had a major renovation with a lot of hassle, we are very restrained with this. But it is certain that Tim needs a room downstairs. That is no longer possible. We will do everything we can to keep Tim at home and to make him the most beautiful and functional room with bathroom. Tim is now 4 years old. We try to be cheerful and positive in life. That is why we keep reminding each other, when Tim takes another step, of the pediatrician’s words: “Tim surprises us time and again, he is doing so well”. In his way, he will get there.