What came to my mind today was an image of a tired frog that lay down and said “sorry I can’t today. My sister’s, friend’s mother’s, grandpa’s, brother’s, grandson’s uncle’s fish died and yes, it was tragic.
I didn’t want to do anything but stay indoors and rest. After all, I am on holiday.
I decided to write about cerebral palsy and the reason Nimmy is in Hungary.
Since I started sending out articles on 30 days in Hungary, many people have sent their prayers, love and well wishes. To all your prayers, love, care and wishes, I say thank you. God bless you and protect you always.
Some have prayed that by the time she comes back she would be healed. Some have said that this second trip would be better than the first time we came. Some have asked me to stretch my faith and believe, while some asked me to be positive. Someone asked me if she has started walking.
Let me start by saying I believe in miracles, I believe in prayers and the manifold love of God. Through the years, the lord has taken me through a process; the first thing God did was for me to understand what cerebral palsy is and how it relates to Nimmy. I am a firm believer that knowledge helps prayer to become more effective. Therefore, let’s start by reminding ourselves what cerebral palsy is?
What is Cerebral Palsy?
It is a condition marked by impaired muscle coordination and/or other disabilities. Cerebral palsy is caused by abnormal development or damage to the parts of the brain that control movement, balance and posture. Most often the problems occur during pregnancy; however, they may also occur during childbirth, or shortly after birth. Often the cause is unknown
Signs and symptoms vary among people. Often, symptoms include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, swallowing, and speaking. Often babies with cerebral palsy do not roll over, sit, crawl, or walk as early as other children of their age. Other symptoms include seizures and problems with thinking or reasoning, each of which occurs in about one third of people with CP. While the symptoms may get more noticeable over the first few years of life, the underlying problems do not worsen over time.
A number of sub-types are classified based on the specific problems present. For example, those with stiff muscles have spastic cerebral palsy, those with poor coordination have ataxic cerebral palsy, and those with writhing movements have athetoid cerebral palsy. Diagnosis is based on the child’s development over time.
Another type of grouping: Four types of spastic CP, grouped according to how many limbs are affected.
Hemiplegia or diplegia: One arm and one leg on the same side of the body (hemiplegia) or both legs (diplegia or paraplegia) are affected. These are the most common types of spastic cerebral palsy.
Monoplegia: Only one arm or leg is affected.
Quadriplegia : Both arms and both legs are affected. Usually the trunk and muscles that control the mouth, tongue, and windpipe are affected too. This makes eating and talking difficult. Babies with spastic quadriplegia may:
Have problems sucking and swallowing.
Have a weak or shrill cry.
Have a very relaxed and floppy body or a very stiff body. When held, they may arch their backs and extend their arms and legs.
Be irritable and jittery when awake. For example, they may startle easily.
Sleep a lot or show little interest in what is going on around them.
Triplegia: Either both arms and one leg or both legs and one arm are affected.
There is no cure for CP; however, supportive treatments, medications, and surgery may help many individuals. This may include physical therapy, occupational therapy, and speech therapy. Medications such as diazepam, baclofen, and botulinum toxin may help relax stiff muscles. Surgery may include lengthening muscles and cutting overly active nerves. Often external braces and other assistive technology are helpful. Some affected children can achieve near normal adult lives with appropriate treatment – Wikipedia
I have heard some physiotherapist say, I worked with so and so and he walked after one year or the boy could sit after two years. Often times, it depends on the diagnosis and severity or otherwise of each case. (In fact, no two CP case is exactly the same) Give that same Physiotherapist another child to work with, after two years he/she starts complaining that the child is non-responsive and he/she runs away. Don’t get me wrong most children with cerebral palsy need regularly physiotherapy. In fact, a minimum of two times a week. Nobody is a superstar, you do your bit and God heals.
I remember when Nimmy was around three years old, during her neurology clinic I told the Neurologist she could say about 8-10 of her sounds (a,b,c,d,e.t.c.) very well; she could also say some of her numbers and colours. Then I said that is the only thing she could say for now. He looked at me and said, ‘and you think that shouldn’t be celebrated? That is a miracle. According to what she experienced from her medical records, she not even supposed to speak or comprehend anything.
That changed my perspective. I began to see miracles every day in the little things Nimmy accomplished. To friends and family, if she couldn’t sit or stand by herself, then there isn’t any tangible improvement but that is completely different to a mother who understood that God works in diverse ways. The way he works with A is different in the way he works in B.
For A, it may be an instant miracle and for B it may be a process. Is God good? Yes, he is. Is God faithful? Yes, he is and I will serve Him forever.
The first week we got here, Nimmy kept crying because of the exercises (albeit play therapy). By the second week, she was attempting to do more than she would normally have done and by the third week she made a huge progress in her movements. To the one who doesn’t understand cerebral palsy, you would think sheer waste of time and money; after all she didn’t stand on her own. What was the whole process for then?
Nimmy is not here for surgery, Nimmy is not here to be fixed, Nimmy is not here for drugs or treatment. She is here to learn skills. Skills you and I take for granted such as sitting, standing, using her hands because cerebral palsy like I mentioned above affects muscle coordination.
What Nimmy really needs is your love and acceptance; seeing her abilities beyond her disabilities, at the same time believing that He who is able to do exceedingly, abundantly above all we can ever think or imagine, will perfect all that concerns her.
30 days in Hungary Day 17 (30.07.17) SundayWhat came to my mind today was an image of a tired frog that lay down and said “sorry I can’t today. My sister’s, friend’s mother’s, grandpa’s, brother’s, grandson’s uncle’s fish died and yes, it was tragic.I didn’t want to do anything but stay indoors and rest. After all, I am on holiday.I decided to write about cerebral palsy and the reason Nimmy is in Hungary.Since I started sending out articles on 30 days in Hungary, many people have sent their prayers, love and well wishes. To all your prayers, love, care and wishes, I say thank you. God bless you and protect you always.Some have prayed that by the time she comes back she would be healed. Some have said that this second trip would be better than the first time we came. Some have asked me to stretch my faith and believe, while some asked me to be positive. Someone asked me if she has started walking.Let me start by saying I believe in miracles, I believe in prayers and the manifold love of God. Through the years, the lord has taken me through a process; the first thing God did was for me to understand what cerebral palsy is and how it relates to Nimmy. I am a firm believer that knowledge helps prayer to become more effective. Therefore, let’s start by reminding ourselves what cerebral palsy is?What is Cerebral Palsy?It is a condition marked by impaired muscle coordination and/or other disabilities. Cerebral palsy is caused by abnormal development or damage to the parts of the brain that control movement, balance and posture. Most often the problems occur during pregnancy; however, they may also occur during childbirth, or shortly after birth. Often the cause is unknownSigns and symptoms vary among people. Often, symptoms include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, swallowing, and speaking. Often babies with cerebral palsy do not roll over, sit, crawl, or walk as early as other children of their age. Other symptoms include seizures and problems with thinking or reasoning, each of which occurs in about one third of people with CP. While the symptoms may get more noticeable over the first few years of life, the underlying problems do not worsen over time. A number of sub-types are classified based on the specific problems present. For example, those with stiff muscles have spastic cerebral palsy, those with poor coordination have ataxic cerebral palsy, and those with writhing movements have athetoid cerebral palsy. Diagnosis is based on the child's development over time. Another type of grouping: Four types of spastic CP, grouped according to how many limbs are affected.Hemiplegia or diplegia: One arm and one leg on the same side of the body (hemiplegia) or both legs (diplegia or paraplegia) are affected. These are the most common types of spastic cerebral palsy.Monoplegia: Only one arm or leg is affected.Quadriplegia : Both arms and both legs are affected. Usually the trunk and muscles that control the mouth, tongue, and windpipe are affected too. This makes eating and talking difficult. Babies with spastic quadriplegia may:Have problems sucking and swallowing.Have a weak or shrill cry.Have a very relaxed and floppy body or a very stiff body. When held, they may arch their backs and extend their arms and legs.Be irritable and jittery when awake. For example, they may startle easily.Sleep a lot or show little interest in what is going on around them.Triplegia: Either both arms and one leg or both legs and one arm are affected.There is no cure for CP; however, supportive treatments, medications, and surgery may help many individuals. This may include physical therapy, occupational therapy, and speech therapy. Medications such as diazepam, baclofen, and botulinum toxin may help relax stiff muscles. Surgery may include lengthening muscles and cutting overly active nerves. Often external braces and other assistive technology are helpful. Some affected children can achieve near normal adult lives with appropriate treatment – WikipediaI have heard some physiotherapist say, I worked with so and so and he walked after one year or the boy could sit after two years. Often times, it depends on the diagnosis and severity or otherwise of each case. (In fact, no two CP case is exactly the same) Give that same Physiotherapist another child to work with, after two years he/she starts complaining that the child is non-responsive and he/she runs away. Don’t get me wrong most children with cerebral palsy need regularly physiotherapy. In fact, a minimum of two times a week. Nobody is a superstar, you do your bit and God heals.I remember when Nimmy was around three years old, during her neurology clinic I told the Neurologist she could say about 8-10 of her sounds (a,b,c,d,e.t.c.) very well; she could also say some of her numbers and colours. Then I said that is the only thing she could say for now. He looked at me and said, ‘and you think that shouldn’t be celebrated? That is a miracle. According to what she experienced from her medical records, she not even supposed to speak or comprehend anything.That changed my perspective. I began to see miracles every day in the little things Nimmy accomplished. To friends and family, if she couldn’t sit or stand by herself, then there isn’t any tangible improvement but that is completely different to a mother who understood that God works in diverse ways. The way he works with A is different in the way he works in B.For A, it may be an instant miracle and for B it may be a process. Is God good? Yes, he is. Is God faithful? Yes, he is and I will serve Him forever.The first week we got here, Nimmy kept crying because of the exercises (albeit play therapy). By the second week, she was attempting to do more than she would normally have done and by the third week she made a huge progress in her movements. To the one who doesn’t understand cerebral palsy, you would think sheer waste of time and money; after all she didn’t stand on her own. What was the whole process for then?Nimmy is not here for surgery, Nimmy is not here to be fixed, Nimmy is not here for drugs or treatment. She is here to learn skills. Skills you and I take for granted such as sitting, standing, using her hands because cerebral palsy like I mentioned above affects muscle coordination.What Nimmy really needs is your love and acceptance; seeing her abilities beyond her disabilities, at the same time believing that He who is able to do exceedingly, abundantly above all we can ever think or imagine, will perfect all that concerns her.
Gepostet von Diary of a Special Needs Mum Initiative am Sonntag, 6. August 2017
