Jenni Williams

@jenniwdog | contributor
Jenni Williams is Mummy to Eve who has a rare chromosome condition, epilepsy and a smile that can light up the darkest reaches of the universe. Jenni likes dogs, craft beer, Radio 4 and nice people. Her dream car is a blue pick up truck filled with huskies.
Jenni Williams

When Things Don't Go as Expected Due to My Child's Medical Condition

Our alternative Christmas story begins at 5:35 a.m. on December 25. Our 6-year-old daughter woke us up, not because she was excited to open her presents, but because she has epilepsy and had a seizure. This event had been foretold, not by biblical prophecies, but by the fact that Eve’s seizures currently happen like clockwork once a month. The last three were on the November 26, October 25 and September 24, so my husband and I had been fully expecting one. We swung into a sadly well-practiced routine. As per Eve’s seizure protocol, I administered her emergency rescue medication and dialed 999 (the British 911). Eve has a history of serious respiratory distress during a seizure, and her protocol stipulates that we must always call an ambulance, even if we don’t end up going to A&E. The angel in the ambulance control centre listened to my swift explanation and the urgent tone in my voice, asked a few quick questions and assured me an ambulance was on the way. Less than seven minutes later our very own two Wise Men arrived. They were paramedics from the east, or rather, South East Coast Ambulance — the ambulance trust that serves Surrey, Sussex and Kent. And they brought with them some amazing gifts: life-saving expertise, medical equipment to monitor Eve’s vital signs and oxygen. They also brought compassion and concern for a child they’d never met before. They immediately swung into action, administering oxygen, checking Eve’s heart rate and monitoring her breathing. Once Eve comes out of a seizure and is responsive, then she’s past the danger zone. After a few minutes, she took the oxygen mask off by herself, started kicking her foot in annoyance at the heart-rate sensor taped to her big toe and swatted away the digital thermometer when one of the paramedics tried to take her temperature. Then she opened her eyes, reached out to me for a cuddle and I had my daughter back. After monitoring her for a while longer, the two Wise Men were satisfied with Eve’s vital signs and all-round responsiveness. We all agreed that we didn’t need to go to A&E on this occasion. They completed the obligatory Incident Report, leaving us a copy for future paramedic teams to crib (pun intended) from and went on their way. It was almost the end of their shift and we wished them a well deserved merry Christmas with their families. After the paramedics left, we laid Eve’s sweet head down for her post-seizure sleep on the sofa, a manger of sorts, where we could easily keep watch over her. Then the almost never meek or mild mother of this amazing child got rather upset. Christmas should be the most exciting morning of the year for any child, yet my little girl started her day off with epilepsy making yet another unwelcome appearance. Enter the third Wise Man in this story: my husband, Steve. He reminded me that Eve experiences “Christmas” levels of happiness on a regular basis: when she goes swimming, when she watches one of her favorite Disney films, when Daddy makes her laugh and when it’s spaghetti bolognaise for dinner. And then there’s the magical event that takes place every weekday during term time at 3:15 p.m. when Mummy picks her up from school. Eve’s overwhelming joy when she comes out of her classroom and sees me across the hall melts my heart. She doesn’t know who Father Christmas is, but she does at least believe in me. Steve was right; Eve may not understand Christmas or presents or the story of the baby who was born in a stable, but she understands love. Eve is loved, well cared for, safe from external threats, and lives in a wealthy country with emergency medical care available free at the point of need 24 hours a day, 365 days a year — however often it is required. Or as the last few lines of the paramedic Incident Report puts it, “Patient to remain at home. Parents very knowledgeable about patient’s condition and treatment. Will call us back should symptoms re occur. No safeguarding concerns.” Our Christmas started in a less than “perfect” way, but it was nonetheless full of gifts that can’t be bought or wrapped or stuffed in a stocking. And that’s the best present anyone can wish for. Although Santa baby, if you could slip a cure for epilepsy under the tree next Christmas, then I’d be eternally grateful.

Jenni Williams

When Things Don't Go as Expected Due to My Child's Medical Condition

Our alternative Christmas story begins at 5:35 a.m. on December 25. Our 6-year-old daughter woke us up, not because she was excited to open her presents, but because she has epilepsy and had a seizure. This event had been foretold, not by biblical prophecies, but by the fact that Eve’s seizures currently happen like clockwork once a month. The last three were on the November 26, October 25 and September 24, so my husband and I had been fully expecting one. We swung into a sadly well-practiced routine. As per Eve’s seizure protocol, I administered her emergency rescue medication and dialed 999 (the British 911). Eve has a history of serious respiratory distress during a seizure, and her protocol stipulates that we must always call an ambulance, even if we don’t end up going to A&E. The angel in the ambulance control centre listened to my swift explanation and the urgent tone in my voice, asked a few quick questions and assured me an ambulance was on the way. Less than seven minutes later our very own two Wise Men arrived. They were paramedics from the east, or rather, South East Coast Ambulance — the ambulance trust that serves Surrey, Sussex and Kent. And they brought with them some amazing gifts: life-saving expertise, medical equipment to monitor Eve’s vital signs and oxygen. They also brought compassion and concern for a child they’d never met before. They immediately swung into action, administering oxygen, checking Eve’s heart rate and monitoring her breathing. Once Eve comes out of a seizure and is responsive, then she’s past the danger zone. After a few minutes, she took the oxygen mask off by herself, started kicking her foot in annoyance at the heart-rate sensor taped to her big toe and swatted away the digital thermometer when one of the paramedics tried to take her temperature. Then she opened her eyes, reached out to me for a cuddle and I had my daughter back. After monitoring her for a while longer, the two Wise Men were satisfied with Eve’s vital signs and all-round responsiveness. We all agreed that we didn’t need to go to A&E on this occasion. They completed the obligatory Incident Report, leaving us a copy for future paramedic teams to crib (pun intended) from and went on their way. It was almost the end of their shift and we wished them a well deserved merry Christmas with their families. After the paramedics left, we laid Eve’s sweet head down for her post-seizure sleep on the sofa, a manger of sorts, where we could easily keep watch over her. Then the almost never meek or mild mother of this amazing child got rather upset. Christmas should be the most exciting morning of the year for any child, yet my little girl started her day off with epilepsy making yet another unwelcome appearance. Enter the third Wise Man in this story: my husband, Steve. He reminded me that Eve experiences “Christmas” levels of happiness on a regular basis: when she goes swimming, when she watches one of her favorite Disney films, when Daddy makes her laugh and when it’s spaghetti bolognaise for dinner. And then there’s the magical event that takes place every weekday during term time at 3:15 p.m. when Mummy picks her up from school. Eve’s overwhelming joy when she comes out of her classroom and sees me across the hall melts my heart. She doesn’t know who Father Christmas is, but she does at least believe in me. Steve was right; Eve may not understand Christmas or presents or the story of the baby who was born in a stable, but she understands love. Eve is loved, well cared for, safe from external threats, and lives in a wealthy country with emergency medical care available free at the point of need 24 hours a day, 365 days a year — however often it is required. Or as the last few lines of the paramedic Incident Report puts it, “Patient to remain at home. Parents very knowledgeable about patient’s condition and treatment. Will call us back should symptoms re occur. No safeguarding concerns.” Our Christmas started in a less than “perfect” way, but it was nonetheless full of gifts that can’t be bought or wrapped or stuffed in a stocking. And that’s the best present anyone can wish for. Although Santa baby, if you could slip a cure for epilepsy under the tree next Christmas, then I’d be eternally grateful.

Jenni Williams

When Things Don't Go as Expected Due to My Child's Medical Condition

Our alternative Christmas story begins at 5:35 a.m. on December 25. Our 6-year-old daughter woke us up, not because she was excited to open her presents, but because she has epilepsy and had a seizure. This event had been foretold, not by biblical prophecies, but by the fact that Eve’s seizures currently happen like clockwork once a month. The last three were on the November 26, October 25 and September 24, so my husband and I had been fully expecting one. We swung into a sadly well-practiced routine. As per Eve’s seizure protocol, I administered her emergency rescue medication and dialed 999 (the British 911). Eve has a history of serious respiratory distress during a seizure, and her protocol stipulates that we must always call an ambulance, even if we don’t end up going to A&E. The angel in the ambulance control centre listened to my swift explanation and the urgent tone in my voice, asked a few quick questions and assured me an ambulance was on the way. Less than seven minutes later our very own two Wise Men arrived. They were paramedics from the east, or rather, South East Coast Ambulance — the ambulance trust that serves Surrey, Sussex and Kent. And they brought with them some amazing gifts: life-saving expertise, medical equipment to monitor Eve’s vital signs and oxygen. They also brought compassion and concern for a child they’d never met before. They immediately swung into action, administering oxygen, checking Eve’s heart rate and monitoring her breathing. Once Eve comes out of a seizure and is responsive, then she’s past the danger zone. After a few minutes, she took the oxygen mask off by herself, started kicking her foot in annoyance at the heart-rate sensor taped to her big toe and swatted away the digital thermometer when one of the paramedics tried to take her temperature. Then she opened her eyes, reached out to me for a cuddle and I had my daughter back. After monitoring her for a while longer, the two Wise Men were satisfied with Eve’s vital signs and all-round responsiveness. We all agreed that we didn’t need to go to A&E on this occasion. They completed the obligatory Incident Report, leaving us a copy for future paramedic teams to crib (pun intended) from and went on their way. It was almost the end of their shift and we wished them a well deserved merry Christmas with their families. After the paramedics left, we laid Eve’s sweet head down for her post-seizure sleep on the sofa, a manger of sorts, where we could easily keep watch over her. Then the almost never meek or mild mother of this amazing child got rather upset. Christmas should be the most exciting morning of the year for any child, yet my little girl started her day off with epilepsy making yet another unwelcome appearance. Enter the third Wise Man in this story: my husband, Steve. He reminded me that Eve experiences “Christmas” levels of happiness on a regular basis: when she goes swimming, when she watches one of her favorite Disney films, when Daddy makes her laugh and when it’s spaghetti bolognaise for dinner. And then there’s the magical event that takes place every weekday during term time at 3:15 p.m. when Mummy picks her up from school. Eve’s overwhelming joy when she comes out of her classroom and sees me across the hall melts my heart. She doesn’t know who Father Christmas is, but she does at least believe in me. Steve was right; Eve may not understand Christmas or presents or the story of the baby who was born in a stable, but she understands love. Eve is loved, well cared for, safe from external threats, and lives in a wealthy country with emergency medical care available free at the point of need 24 hours a day, 365 days a year — however often it is required. Or as the last few lines of the paramedic Incident Report puts it, “Patient to remain at home. Parents very knowledgeable about patient’s condition and treatment. Will call us back should symptoms re occur. No safeguarding concerns.” Our Christmas started in a less than “perfect” way, but it was nonetheless full of gifts that can’t be bought or wrapped or stuffed in a stocking. And that’s the best present anyone can wish for. Although Santa baby, if you could slip a cure for epilepsy under the tree next Christmas, then I’d be eternally grateful.

Jenni Williams

When Things Don't Go as Expected Due to My Child's Medical Condition

Our alternative Christmas story begins at 5:35 a.m. on December 25. Our 6-year-old daughter woke us up, not because she was excited to open her presents, but because she has epilepsy and had a seizure. This event had been foretold, not by biblical prophecies, but by the fact that Eve’s seizures currently happen like clockwork once a month. The last three were on the November 26, October 25 and September 24, so my husband and I had been fully expecting one. We swung into a sadly well-practiced routine. As per Eve’s seizure protocol, I administered her emergency rescue medication and dialed 999 (the British 911). Eve has a history of serious respiratory distress during a seizure, and her protocol stipulates that we must always call an ambulance, even if we don’t end up going to A&E. The angel in the ambulance control centre listened to my swift explanation and the urgent tone in my voice, asked a few quick questions and assured me an ambulance was on the way. Less than seven minutes later our very own two Wise Men arrived. They were paramedics from the east, or rather, South East Coast Ambulance — the ambulance trust that serves Surrey, Sussex and Kent. And they brought with them some amazing gifts: life-saving expertise, medical equipment to monitor Eve’s vital signs and oxygen. They also brought compassion and concern for a child they’d never met before. They immediately swung into action, administering oxygen, checking Eve’s heart rate and monitoring her breathing. Once Eve comes out of a seizure and is responsive, then she’s past the danger zone. After a few minutes, she took the oxygen mask off by herself, started kicking her foot in annoyance at the heart-rate sensor taped to her big toe and swatted away the digital thermometer when one of the paramedics tried to take her temperature. Then she opened her eyes, reached out to me for a cuddle and I had my daughter back. After monitoring her for a while longer, the two Wise Men were satisfied with Eve’s vital signs and all-round responsiveness. We all agreed that we didn’t need to go to A&E on this occasion. They completed the obligatory Incident Report, leaving us a copy for future paramedic teams to crib (pun intended) from and went on their way. It was almost the end of their shift and we wished them a well deserved merry Christmas with their families. After the paramedics left, we laid Eve’s sweet head down for her post-seizure sleep on the sofa, a manger of sorts, where we could easily keep watch over her. Then the almost never meek or mild mother of this amazing child got rather upset. Christmas should be the most exciting morning of the year for any child, yet my little girl started her day off with epilepsy making yet another unwelcome appearance. Enter the third Wise Man in this story: my husband, Steve. He reminded me that Eve experiences “Christmas” levels of happiness on a regular basis: when she goes swimming, when she watches one of her favorite Disney films, when Daddy makes her laugh and when it’s spaghetti bolognaise for dinner. And then there’s the magical event that takes place every weekday during term time at 3:15 p.m. when Mummy picks her up from school. Eve’s overwhelming joy when she comes out of her classroom and sees me across the hall melts my heart. She doesn’t know who Father Christmas is, but she does at least believe in me. Steve was right; Eve may not understand Christmas or presents or the story of the baby who was born in a stable, but she understands love. Eve is loved, well cared for, safe from external threats, and lives in a wealthy country with emergency medical care available free at the point of need 24 hours a day, 365 days a year — however often it is required. Or as the last few lines of the paramedic Incident Report puts it, “Patient to remain at home. Parents very knowledgeable about patient’s condition and treatment. Will call us back should symptoms re occur. No safeguarding concerns.” Our Christmas started in a less than “perfect” way, but it was nonetheless full of gifts that can’t be bought or wrapped or stuffed in a stocking. And that’s the best present anyone can wish for. Although Santa baby, if you could slip a cure for epilepsy under the tree next Christmas, then I’d be eternally grateful.

Community Voices

A poem for my daughter - #MightyPoets

Revelation - by Jenni Williams

Severely disabled
Epilepsy
Global development delay
Special educational needs

My daughter has many names

Monkey, Pickle, the Tiny Tornado
I like the ones that speak of her spirit, her energy, her love of life
Names that shatter stereotypes

Not for her the sad piano music, conjuring pain
Like needles in the heart
Her soundtrack is a loud and joyful orchestra
With mischievous melodies and the hammer of drums
A wild and wonderful wall of sound

I was blind before
But now I see
She gifted me with fear
I chose light
Rebirth

Of all her names
One shines above the rest
The name I gave her

Eve

The original
The rebel
The reason

Eve is paradise

#Epilepsy
#GlobalDevelopmentDelay
#Disability
#RareDisease 
#MightyPoets
#Parenting 
#ChronicIllness

Acknowledgements
With thanks to Dan White, ‘Amazing Grace’ and ‘I Am Eve (I Am The Reason)’ by Harpeth Rising.

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Jenni Williams

How My Dog Helps Me Care for My Daughter With Disabilities

I’ve noticed that families who have a child with a disability are more likely to have a dog than families who do not have a child with a disability. In the UK as a whole, 26 percent of households have a dog, and in the USA it’s 42 percent. In my close knit group of 10 mums of kids with disabilities, six of the families (including us) have a dog and a seventh will likely get one in the next few years. That’s a 60 percent prevalence rate rising to 70 percent when Dan and Helen finally cave to the inevitable. But why is this? Dogs and humans have evolved together over tens of thousands of years; it’s the most enduring “best friendship” in history. I believe we instinctively know that dogs are good for us and our instinct is correct. Just Google “dogs and mental health” and you will be inundated with science explaining what dog people have known since forever: dogs have a hugely beneficial impact on your physical, mental and emotional health. In families dealing with the pressures of caring for a child with a disability or serious illness, the presence of a dog can give your resilience a huge boost. Out of the 7 billion people on the planet, the person who I spend the most time with is my daughter, Eve. She spends half the night sleeping next to my bed and the rest of the night sleeping in it and as close to me as she can. However, running a close second in the constant companion stakes is, Scout, our dog. This may explain why I’ve started sniffing my friends’ bottoms when I see them. Anyway, I digress. The reality of life with a child like Eve can involve experiences that nothing prepares you for and decisions that my husband and I never dreamed we’d have to make. I’m not complaining — Eve is worth it a million times over and in any case, the wonderful happy times far outweigh the scary ones. I love my life and wouldn’t swap with anyone. But sometimes I do feel battered with worry and bruised by some of our experiences. The past year has been particularly difficult as Eve’s epilepsy has significantly worsened and another aspect of her condition that we hoped we’d escape has reared its ugly head. When you’re in a tight spot, you need a friend, and a dog is the most loyal friend you can get. Scout is always on my side, is a great listener and knows how to keep a secret. She’s a very comforting presence to have around and seems to know when I need her to get up on the sofa for a cuddle or lie reassuringly at my feet. Scout’s inherent dogginess is also a great antidote to worry and stress. Dogs are in love with life and it’s infectious. (I could say exactly the same about Eve, but she gets quite enough attention and this piece is about her furry sister!) Scout teaches me the importance of living in the moment, of running for the sheer fun of it, and of taking time out to sniff the air and enjoy the view. And if you’re lucky enough to make a new friend, go right ahead and sniff their bottom because life is short and none of us are promised a tomorrow. Scout also makes me laugh every single day. Whether it’s giving herself a mud bath, chasing a squirrel or having a mad moment where she throws herself down on the grass and writhes around on her back, her enduring silliness and boundless joy reminds me that life is good and life is for living. Walking is great for your overall wellbeing, and thanks to Scout I have to walk twice a day. Our longer walks in the morning when Eve is at school recharge my batteries and give me some vital headspace — just me, my dog and beautiful countryside. Then we doa shorter walk in the afternoon with Eve in the pushchair; I absolutely adore walking with my two girls. Of course dogs love to play as well as to walk, and immersing yourself in playing with your dog can be pure mindfulness. Even if I’m just throwing a tennis ball for her in the garden, it’s impossible to think about anything other than Scout’s expectant, tongue-lolling grin or subsequent boisterous pursuit of said tennis ball. Scout is fantastic with Eve and will lie down next to her when Eve is playing or watching TV, or when she’s having her dinner… although I suspect there’s an ulterior motive going on there! For the most part, Eve is pretty relaxed about Scout and usually ignores her in the house. However, she absolutely loves taking Scout for a walk, especially when Scout has run off somewhere and I’m calling her back. When Scout appears out of the woods and bounds back to us, Eve kicks her legs excitedly and makes lots of happy sounds. She also loves it when Scout gets in the stream near our house. Eve loves swimming and I suspect she realizes that Scout is doing the same thing. But there’s a serious side to Scout, too. She definitely knows when Eve is having a seizure; maybe she can hear something in my tone of voice when I’m calling an ambulance or smell the fear that no doubt emanates from me. Whatever it is, she knows to stay quiet and lying down when the people in green uniforms arrive. Eve’s seizures almost always occur first thing in the morning, before one of us has been down to feed Scout. Nonetheless, she waits patiently, knowing her breakfast is of secondary importance to the needs of her littlest human. Scout also knows when I’m upset. She can obviously smell my tears because even if she’s in a different room she’ll come running in with a worried look in her deep brown eyes, shove her face in mine, and try to sit on me to make me feel better. It works. As Rudyard Kipling wrote, “…the strength of the pack is the wolf, and the strength of the wolf is the pack.” However she does it, Scout makes me feel strong, steadfast and better able to cope with what lies around the corner. And therefore, she makes me a better mummy to Eve. As far as I’m concerned, having a dog is non-negotiable; I will never be without one. Should probably curb the bottom sniffing though.

Jenni Williams

My Child's List of Medical Conditions Should Not Be What Defines Her

Please allow me to introduce myself: My name is Jenni Williams and I’m 43 years old. I’m short sighted, -4.75 in the left eye and -5.00 in the right. I had my appendix out in December 1994. I’m on the contraceptive pill. I get thrush once or twice a year. My last pap-smear test was in January 2018, results normal. Too much information. I know this is a slightly embarrassing way to make your acquaintance, but my daughter is introduced by her personal medical history in hospital clinic letters and other pieces of official paperwork, so it seems only fair that I should experience what it feels like. And it feels very uncomfortable. I didn’t like writing that introductory paragraph and I really don’t like the fact that you now know those things about me. Firstly, it’s personal; secondly, it’s irrelevant to who I am as a person. Oddly enough, I don’t feel defined by my lack of an appendix. Of course I know my daughter’s clinic letters have to list her medical conditions and this is not in any way a criticism of her consultants. They are skilled and dedicated doctors and warm and caring people who are always interested in how Eve is doing overall. I am grateful every single day that we live in a country where this treatment is free at the point of need. Nonetheless, it bothers me because I am reminded this is how society often views Eve and children like her — as a list of medical conditions. Someone to feel pity for or even someone who, in some quarters, is considered a burden or not as worthy of life as “normal” people. Too much focus on someone’s medical conditions can obscure what really matters: that we are all unique individuals, regardless of our medical history. Don’t get me wrong — my husband and I don’t ignore Eve’s complex medical needs. We’re fastidious about her medication and keeping her safe. One of her conditions is never far from our minds and she is never truly alone — she sleeps in our room and for the few hours that she’s in bed before we are, we have an ear and an eye on the video monitor. Yet, all this aside, I want Eve to be known first and foremost for her personality — her approach to life, her likes and dislikes, strengths and weaknesses, character traits and quirks. I don’t want her to be seen as a list of medical conditions. Thankfully, we’re not the only ones who see her this way. For example, at Eve’s amazing school, the children are celebrated as individuals. Their diagnoses are used solely to keep them safe and tailor their education. In addition, Eve has recently come under the care of a new consultant geneticist — a specialist in cancer genetics — who will oversee one of Eve’s conditions that now needs to be regularly monitored. In a clinic letter primarily discussing the impact of the loss of a single gene, this consultant also referred to Eve’s role as an ambassador for an annual disability sports event: the Superhero Tri. How wonderful that a doctor who focuses on the human body at a sub-cellular level can also see the big picture. Ultimately, whenever I read her list of conditions, I want to shout to the world that’s not Eve. So in the interests of redressing the balance, here’s her alternative diagnoses according to the specialist who knows her best: me. • Acute cuteness syndrome.• Systemic happiness.• Chronic determination.• Congenitally stubborn.• Developmentally advanced “bullshit radar.”• Communicable sense of humor.• Infectious cheeky grin.• Clinical obsession with “Fraggle Rock” and Disney movies.• Degenerative addiction to swimming — most severe episode lasted over three hours and resulted in a prolonged loss of consciousness (fell asleep in the pool).• Endemic Ambassador for the Superhero Tri Series.• Malignant (for her parents) love of any plastic toy that lights up and plays annoying music.• Pathological dependency on getting in bed with Mummy in the middle of the night.• Incurable love of Mummy’s spaghetti Bolognese.• Febrile excitement at going to school.• Relapse of febrile excitement when seeing Mummy again at the end of school.• Epidemic levels of affection, often co-morbid with wanting to watch cartoons on YouTube with Daddy.• Unresponsive when told not to open the kitchen cupboards. In summary, a beautiful little soul inside and out, and the best company in the world.

Jenni Williams

My Child's List of Medical Conditions Should Not Be What Defines Her

Please allow me to introduce myself: My name is Jenni Williams and I’m 43 years old. I’m short sighted, -4.75 in the left eye and -5.00 in the right. I had my appendix out in December 1994. I’m on the contraceptive pill. I get thrush once or twice a year. My last pap-smear test was in January 2018, results normal. Too much information. I know this is a slightly embarrassing way to make your acquaintance, but my daughter is introduced by her personal medical history in hospital clinic letters and other pieces of official paperwork, so it seems only fair that I should experience what it feels like. And it feels very uncomfortable. I didn’t like writing that introductory paragraph and I really don’t like the fact that you now know those things about me. Firstly, it’s personal; secondly, it’s irrelevant to who I am as a person. Oddly enough, I don’t feel defined by my lack of an appendix. Of course I know my daughter’s clinic letters have to list her medical conditions and this is not in any way a criticism of her consultants. They are skilled and dedicated doctors and warm and caring people who are always interested in how Eve is doing overall. I am grateful every single day that we live in a country where this treatment is free at the point of need. Nonetheless, it bothers me because I am reminded this is how society often views Eve and children like her — as a list of medical conditions. Someone to feel pity for or even someone who, in some quarters, is considered a burden or not as worthy of life as “normal” people. Too much focus on someone’s medical conditions can obscure what really matters: that we are all unique individuals, regardless of our medical history. Don’t get me wrong — my husband and I don’t ignore Eve’s complex medical needs. We’re fastidious about her medication and keeping her safe. One of her conditions is never far from our minds and she is never truly alone — she sleeps in our room and for the few hours that she’s in bed before we are, we have an ear and an eye on the video monitor. Yet, all this aside, I want Eve to be known first and foremost for her personality — her approach to life, her likes and dislikes, strengths and weaknesses, character traits and quirks. I don’t want her to be seen as a list of medical conditions. Thankfully, we’re not the only ones who see her this way. For example, at Eve’s amazing school, the children are celebrated as individuals. Their diagnoses are used solely to keep them safe and tailor their education. In addition, Eve has recently come under the care of a new consultant geneticist — a specialist in cancer genetics — who will oversee one of Eve’s conditions that now needs to be regularly monitored. In a clinic letter primarily discussing the impact of the loss of a single gene, this consultant also referred to Eve’s role as an ambassador for an annual disability sports event: the Superhero Tri. How wonderful that a doctor who focuses on the human body at a sub-cellular level can also see the big picture. Ultimately, whenever I read her list of conditions, I want to shout to the world that’s not Eve. So in the interests of redressing the balance, here’s her alternative diagnoses according to the specialist who knows her best: me. • Acute cuteness syndrome.• Systemic happiness.• Chronic determination.• Congenitally stubborn.• Developmentally advanced “bullshit radar.”• Communicable sense of humor.• Infectious cheeky grin.• Clinical obsession with “Fraggle Rock” and Disney movies.• Degenerative addiction to swimming — most severe episode lasted over three hours and resulted in a prolonged loss of consciousness (fell asleep in the pool).• Endemic Ambassador for the Superhero Tri Series.• Malignant (for her parents) love of any plastic toy that lights up and plays annoying music.• Pathological dependency on getting in bed with Mummy in the middle of the night.• Incurable love of Mummy’s spaghetti Bolognese.• Febrile excitement at going to school.• Relapse of febrile excitement when seeing Mummy again at the end of school.• Epidemic levels of affection, often co-morbid with wanting to watch cartoons on YouTube with Daddy.• Unresponsive when told not to open the kitchen cupboards. In summary, a beautiful little soul inside and out, and the best company in the world.

Jenni Williams

My Child's List of Medical Conditions Should Not Be What Defines Her

Please allow me to introduce myself: My name is Jenni Williams and I’m 43 years old. I’m short sighted, -4.75 in the left eye and -5.00 in the right. I had my appendix out in December 1994. I’m on the contraceptive pill. I get thrush once or twice a year. My last pap-smear test was in January 2018, results normal. Too much information. I know this is a slightly embarrassing way to make your acquaintance, but my daughter is introduced by her personal medical history in hospital clinic letters and other pieces of official paperwork, so it seems only fair that I should experience what it feels like. And it feels very uncomfortable. I didn’t like writing that introductory paragraph and I really don’t like the fact that you now know those things about me. Firstly, it’s personal; secondly, it’s irrelevant to who I am as a person. Oddly enough, I don’t feel defined by my lack of an appendix. Of course I know my daughter’s clinic letters have to list her medical conditions and this is not in any way a criticism of her consultants. They are skilled and dedicated doctors and warm and caring people who are always interested in how Eve is doing overall. I am grateful every single day that we live in a country where this treatment is free at the point of need. Nonetheless, it bothers me because I am reminded this is how society often views Eve and children like her — as a list of medical conditions. Someone to feel pity for or even someone who, in some quarters, is considered a burden or not as worthy of life as “normal” people. Too much focus on someone’s medical conditions can obscure what really matters: that we are all unique individuals, regardless of our medical history. Don’t get me wrong — my husband and I don’t ignore Eve’s complex medical needs. We’re fastidious about her medication and keeping her safe. One of her conditions is never far from our minds and she is never truly alone — she sleeps in our room and for the few hours that she’s in bed before we are, we have an ear and an eye on the video monitor. Yet, all this aside, I want Eve to be known first and foremost for her personality — her approach to life, her likes and dislikes, strengths and weaknesses, character traits and quirks. I don’t want her to be seen as a list of medical conditions. Thankfully, we’re not the only ones who see her this way. For example, at Eve’s amazing school, the children are celebrated as individuals. Their diagnoses are used solely to keep them safe and tailor their education. In addition, Eve has recently come under the care of a new consultant geneticist — a specialist in cancer genetics — who will oversee one of Eve’s conditions that now needs to be regularly monitored. In a clinic letter primarily discussing the impact of the loss of a single gene, this consultant also referred to Eve’s role as an ambassador for an annual disability sports event: the Superhero Tri. How wonderful that a doctor who focuses on the human body at a sub-cellular level can also see the big picture. Ultimately, whenever I read her list of conditions, I want to shout to the world that’s not Eve. So in the interests of redressing the balance, here’s her alternative diagnoses according to the specialist who knows her best: me. • Acute cuteness syndrome.• Systemic happiness.• Chronic determination.• Congenitally stubborn.• Developmentally advanced “bullshit radar.”• Communicable sense of humor.• Infectious cheeky grin.• Clinical obsession with “Fraggle Rock” and Disney movies.• Degenerative addiction to swimming — most severe episode lasted over three hours and resulted in a prolonged loss of consciousness (fell asleep in the pool).• Endemic Ambassador for the Superhero Tri Series.• Malignant (for her parents) love of any plastic toy that lights up and plays annoying music.• Pathological dependency on getting in bed with Mummy in the middle of the night.• Incurable love of Mummy’s spaghetti Bolognese.• Febrile excitement at going to school.• Relapse of febrile excitement when seeing Mummy again at the end of school.• Epidemic levels of affection, often co-morbid with wanting to watch cartoons on YouTube with Daddy.• Unresponsive when told not to open the kitchen cupboards. In summary, a beautiful little soul inside and out, and the best company in the world.