Dani dazzles with his blue gaze and one of his frequent smiles. Until he begins to move or talk, nobody notices that he suffers from cerebral palsy.
He is happy, about to turn 10, has parents who care for him and want, a five-year-old sister who helps him in everything he can, friends at school and a life full of good times.
But getting here has not been easy. Maria José knows well, his mother, who has been fighting for almost 10 years so that his eldest son becomes as independent as possible. She tells us her experience.
Lack of oxygen in childbirth
María José Jimenez says that it was very difficult for her to get pregnant and that in the end she got it with an IVF treatment. From there had a perfect pregnancy, without any complications. He even went into labor at his time: at week 38 + 1 day.
And there the problems began. Too much time already dilated in the hospital, with the epidural on and the broken water bag without anyone doing anything. A very long and exhausting expulsion that led the mother to a state of exhaustion such that she almost fainted.
After two hours in the operating room they decided to help Dani to be born with suction cups and that was when he stopped breathing. “They put it on my chest and I realized that I wasn't crying. I asked if that was normal and then they picked it up and started with resuscitation ", says María José.
"I remember my husband's pale face, the movement of the staff, but I was so tired that I was not very aware of what was happening. Then I knew that my son was a few minutes without breathing before he was intubated and taken to an incubator. of the UVI They talked about 1-2 minutes, but after the time we thought they were more ”.
But from there, it seemed that its evolution was good. After 12 days he was discharged and just had to go back for review.
When mom realizes that something is wrong
It wasn't until Dani was six months old that María José began to suspect that something was wrong. “We met a childhood friend, who had a baby one month older than Dani. And there I saw the difference between both children: my son had no flexibility, he did not sit well ... ”. The doctors still insisted on "that his brain was still immature and that each child evolves at its own pace".
Even so, Dani's parents decided to take him to a physiotherapy center. "It was Ana, his rehabilitator, who began to explain what was happening to my son. But even then the rest of the specialists who treated him diagnosed him: 'chronic motor disorder of moderate consequences' and explained that he had no problem, that simply, maybe, when I was older I would be a little more clumsy than the rest of the children ".
But María José was not happy. He knew something was wrong and before his son turned nine months old, they decided to consult the child neurologist Antonio Barrio. And he knows it is clear: “Dani has cerebral palsy due to lack of oxygen in childbirth”.
"Without a doubt, that was the worst day of my life. On the day of delivery we had a very bad time, seeing that I was not breathing, but I was so tired that she stayed in a scare. But when They gave us the diagnosis, the world sank and his father and I were unable to stop crying. What would happen to him?".
María José tells us that, assuming that her life was not going to be as she had dreamed it, she put the batteries to ensure that Dani advanced as much as possible and discovered that it is the parents who direct the therapies of their children.
"I went through the Early Care Center, recognition of the handicap to be offered help, therapy with horses, swimming pool, rehabilitation with Ana, Bobath treatment in the Child Jesus ... We are changing from one to another according to the evolution and results".
And the effort, as he acknowledges, is worth it:
"I still remember the first time Dani turned around, it was in Bobath's class, and he was nine months old. He had seen Ana so many times to help him turn around, that when he did it alone he couldn't believe it, he had got it without help !, I did not cry for shame, but the feeling was incredible. Or when he took his first steps with 3 years in the Infant Jesus ... ".
If you want to know more about Dani's therapies and understand them better, María José encourages you to enter her blog, Dani my angel, her escape route to face the daily life in Dani's life and with Dani.
As she herself tells in her presentation on the blog:
“My goal is to be able to help all those parents who are or have been, as lost as I was. Make known what is cerebral palsy, its hardest part and also, that part that is not seen, and that only someone who lives every day with a person with paralysis, can perceive. "
A child with different abilities
It was Dr. Barrio who explained that there are different degrees of cerebral palsy and that Dani's problem was motor. It has affected both legs and both arms, but does not present problems at the cognitive level.
Dani walks, but irregularly and seems to be falling at any moment. And, although he has been in speech therapy for many years, his speech is slower than that of other children his age.
In addition, she has the support of a private teacher at home, because she did not suffer cognitive damage during childbirth, but cognitive development starts from the beginning: when babies crawl on the ground, they explore ... something that Dani has never been able to do and that, in the long run, as her mother clearly explains, has affected her learning. So although he does not have curricular adaptation at school, he does need reinforcement. "For example, memorizing for him is a world."
It has many fine motor problems. Not only does his left arm just go back, but he writes poorly and has to use a tablet to study. "We know that Dani will not be able to write, or button up or dress alone or eat with a spoon, but it is improving." He has an occupational therapist who goes home to do some routine things with tricks. "For example, he starts showering alone, although I supervise him", explains his mother.
How far will it go? Let's go step by step
Dani's mother is very clear:
“I never wonder what he will get, out of fear. In the first months no one assured us that he had a cognitive injury, if he was going to recognize us, if he was going to fix his gaze, if he was going to talk ... Do not ask questions because you are terrified of the answers. Then I would have signed because 10 years later, Dani was like now ".
And he recognizes that he is still afraid to think about the future, that he prefers to live day by day. "I am aware of how much a mother who has her child in a wheelchair and who knows that she will never walk suffers. I know them, I talk to them. But she does not suffer less from having a child who walks and does not you know if it will ever be autonomous ". He adds, for example, that one of his father's concerns is knowing if he will be able to shave alone.
"The first years are very hard for the parents, because you don't know what they can do and what not. A roller coaster of emotions happens. Your well-being depends on whether your child has achieved something that day or has taken a step back."María José acknowledges that she remembers every advance of her eldest son in detail, but nevertheless not those of her sister Paula, who is now 5 years old. "She has done everything much more naturally", Explain.
"Luckily, as it grows, as time goes by, our emotional state begins to depend less on its achievements and more and more days are beginning to be happy."
Dani is a happy, cheerful child
"Every day he gives us an incredible lesson in overcoming and strength", proudly recognizes María José. "Perhaps thanks to all the therapies he has gone to, he has developed impressive social skills, especially with adults. That is why today he is very sensitive and with a very mature speech for his age".
"Until two years ago, I was not very aware of what happened to him at birth. Even today, it is not a problem. He has charisma, he makes himself loved immediately and with those blue eyes inherited from his grandmother, he hypnotizes you."Even at school he has always got on well with everyone, even with 'class abuse'. Although he started in a public school with integration, he has been going to a school for motorists for a year. There it has a chair and a special desk, to ensure that its column is kept in the best possible position, since it has an arched one.
Perhaps the most complicated part of your paralysis is the practice of sports, recognizes his mother:
"It's hard for your son to tell you that he doesn't want to go out to recess, that he hates it, when you remember your school age and you were looking forward to the bell ringing to go out to the playground to play. Dani the other school was left alone almost always, while the others played soccer. It is an aspect in which integration must work. "
But, apart from that, Dani is happy. He has his sister Paula, who with five years loves him a lot and helps him in everything he asks, even before Dani asks for his help.
In addition, this year is more integrated with children of their age, thanks to the technology that so many parents hate for the 'hooking' it causes on their children. But in Dani's case, as his mother explains,
"Video games have served to be one more among children his age. He has never had friends because with so many therapies and rehabilitation he had no days off. But now, he has even asked me one day a week without activities to go to a friend's house or to play distance with them. "
Insufficient aid
Dani is privileged. Your parents can give you all the specialized help you need. But other children with cerebral palsy don't have it that easy. This is recognized by María José, who says that more than once she has ever thought about the luck they have of living in Madrid, with all the resources at their disposal, and of having economic means and training.
“It has to be very difficult in a small town without resources, because The help provided by Social Security falls short. If we didn't have money to give our son private therapies, he wouldn't have advanced. Public health offers you therapy once a week. With that, nothing is achieved. ”
And the same goes for economic subsidies. For example, "The special chair that Dani has at school was paid by the center because he wanted to, since he had no obligation. And the desk, we paid him. Then you get help from the Community of Madrid, but first you have to advance the € 800 ", explains his mother. "And not all families can."
Although when you see how much these therapies, that these operations or that technology can make your child move forward, "you get strength and money where it is needed". This is explained by Beatriz, mother of Iker, a little boy with cerebral palsy who, with only 6 years, turns to help others. But that's another story we'll talk to you shortly.
Meanwhile, we are left with the strength of María José, who seems not to be aware of everything she is achieving with her son thanks to her courage, how he is happier because she normalizes her day to day, both in family activities and in in Dani's own. Maybe it's because his training and psychologist job, or maybe just because she is a mother and loves her son above all things.
Photos Facilitated by María José Jiménez (publication consent)
In Babies and More A mother invents a harness so that her son with cerebral palsy can walk, "I don't need to feel fulfilled in anything but my family," we talked to Irene, mother of nine children, "I'm walking!": The overflowing joy of a girl with cerebral palsy taking her first steps, it will excite you,
