I spent years desperately trying to solve the mystery of my son’s illness. A chance encounter with another mother changed my life—and is now poised to change his.
Don't think for a minute that it's just moms, or that two X chromosomes make one uniquely qualified as a parent. I happen to know a father who has shepherded two sons - his only offspring - one autistic, one profoundly deaf - through two failed marriages, two cochlear implant surgeries, bouts with alcohol abuse, and a myriad of other challenges, and for nearly two decades has done it essentially alone. Still married at the time, he tells me of the morning before his two-year old's cochlear surgery, awake at 4:00 a.m., sitting by the bedside watching the rain fall outside his hotel window, his wife sound asleep, as he contemplated the upcoming surgery, and how utterly ALONE he felt. That was decades ago now, with a lot of water over the dam since then, but that son graduates college on this very day. Has it all been worth it? Has it been worth doing alone? He says yes.
I was once a “translational scientist” - I called myself a technologist - in a very different field. I now think of that role as a sort of tailor, taking swatches of knowledge to sew solutions to real problems. The scientists and other knowledge generators provide the cloth and the threads I use. My job is to fit them to the problems. Without the tailor, the knowledge slowly goes out of fashion and is forgotten, and those with the problems remain naked, or at least ill-clothed.
I’m struck by this line: “There was something about motherhood that enabled me to see the fullness of our society’s rot more clearly.” Wow do I feel that. Three children in, the scales have fallen from my eyes. It’s hard for me to take heart in a system that so clearly and often values profit over people, especially when those little people are mine.
I also see the goodness, and the sameness, and the love for children that binds parents across demographic divides. We did check out of modernity to some degree--bought a farm in West Virginia, abandoning the DC bustle for beautiful country roads and scenes of rural poverty. What I’ve found here is a community that loves its kids. Even if we have different origins, we meet in that shared space.
I write about parenting, about walking each other home on the path of parenting, in my Substack. Would love to share it:
I love the thought of "translational scientists" gliding between nodes of accumulated knowledge like merchants on the Silk Road.
And, yes. The hardest part about being a mother is that there are many times when your children will feel pain, and _you_ won't be able to do anything about it.
Orphan drugs (gotta love that nomenclature!) make up about 5% of the pharmaceutical industry if memory serves me right. I think the real tragedy for Ms. Newhouse here is that it took her son's medical team seven years to identify her son's genetic condition.
And yep, the pharmaceutical industry is profit-driven. That _does_ turn its customers into clay pigeons to a greater or lesser degree. I am remembering specifically the time when Joe Manchin's daughter, then working at Pfizer, raised the price of the ubiquitous EpiPen (which those of us with bee sting allergies would be wise to carry at all times) from roughly $100 to well over $600—just because she COULD. There was no corresponding rise in manufacturing costs!
Pfizer went on to make a sizeable contribution to Manchin's campaign—but, gee! That must have been a coincidence, right? 😀
What a beautiful story of love, sacrifice and iron determination.
I was struck, however, by Alana's observation about:
"the endless conga line of impressively credentialed, often fantastically insensitive doctors; the black abyss of insurance companies into which we throw enormous sums of money only to receive more bills in return, along with confusion (on their part, and often, soon, also on yours) about whether the procedure is really necessary in the first place; our schools, which torture the best teachers and elevate the worst ones, like some sort of distillery from hell."
I wonder if we are headed to a shared realization that our politics are equally broken. That we're fighting over nonsense and made up outrage when we should be coalescing around a party that helps and rewards all hard working and responsible Americans by making their lives easier. Where facts and solutions really matter. And common sense prevails.
Just a thought. Happy Mothers Day to all the incredible, smart and insightful women and moms posting here.
Thank you for speaking for those of us without a diagnosis. It is a lonely place.
My daughter doesn't have this disease
She has some disease or malfunction. But, she's not "bad enough" for anyone to care. The author's description of what it is like to parent a child without a diagnosis is accurate. How do you begin to treat them when you don't know what is wrong?
After 6 years of chasing an answer, I was taking a break. We both needed a step back. Then she had another flare and another X-ray that didn't look right, so here we sit, facing at MRIs and doctors appointments again, probably PT (and fights over doing the exercises), decisions about courses of action, and waiting to speak to doctors who act like we are wasting their time.
My trust in the medical system is gone and won't return.
Bless every Mother and family that deals with such heartbreaking and absolutely gut wrenching issues with their children. As a father I know that even us do not have the connection to a child that a Mother has. Mothers who care, nurture, and pray every second for their child cannot be replicated by a stupid village.
My Mother sat by my bed talking to me for several months in a comatose state and was told she was wasting her time. But Mom always said “I knew you could hear me and would come back “. I miss her everyday.
Mothers are just the best thing ever! Happy Mothers Day to all of you and damn you are truly the greatest and yes the core of life for everyone.
It is a wonderful tale well told. Will give you the view from a son, who went through something different, but just as trying.
Was born in '48, for six months was a normal healthy child. Then my mother's immunities wore off and was allergic to just about everything, asthmatic, off the charts, waking up one to six times a night, needing a shot of adrenaline to keep breathing. Doctors did house calls at that time, finally at about two and a half, he decided he needed more sleep. So my mother learned how to sterilize a syringe, they were glass in those days, and give a shot. For a year, she slept on a cot by my bed, waking up with me, taking care of me,. Finally I could wake up, without any terror, with a profound knowledge, that she was there, things would get better, and she went back to my bed with my father.
A few years later, was hospitalized for a year, to see what specialists at Stanford Convalescent Hospital could do. Nothing was the result. Back a bit, from about six to nine months, was started on first cortisone, then prednisone, when it came out, daily, that continued till was seventeen. Between four and twelve, spent three and a half years in hospitals, with no change or improvements. There was so much that I could not do, and so little I could. Finally at eighteen, a new doctor, with a new idea, found the answer.
A part of my blood, that is responsible for anti-bodies was for all intents and purposes missing. After two years of shots, a new world, a new life opened to me. The memory of her sacrifices, the patience of my dad, my older brother and sister, are beyond belief, if they were not realized and lived by me.
The years since twenty have held much, but the wonder and memory of her, underlay everything.
I’m glad that Alana finally has both an answer and some hope for her son. It was difficult and depressing to read her story of persistence and her view of how broken and useless she found our society. I was fortunate in that I had to struggle only with far less serious issues with my own children, but I have seen such frustration and despair in others. In contrast, it would be interesting and inspirational to hear from her friend Allyson who, despite the difficulties facing her and her daughter, had the skills and determination to find a way through the ignorance and bureaucracy.
People like Allyson—courageous, upbeat, and dedicated to make a difference—have a lot to teach us all about how to make our lives, and those of others around us, better. We could use more Allysons in this world.
As a mother and a pediatrician, I had so many thoughts reading this article. The first is that I am always amazed and humbled by the fierce advocacy of mothers. I work with a number of children with complex medical conditions and the moms are rocks stars (the dads are too but I see the moms more often)! My heart hurts that this mother felt brushed off by the medical community. Medicine is a very imperfect science and there is A LOT that we do not know. It is possible that the specific genetic test that finally gave her the answer was not available during the first few rounds of enquiry. That being said, there is a world of difference between "I do not know what is going on with your child" and " I do not know what is going on with your child but I am here to support you as you walk this road." Lastly, pharma is a big business and they are only watching out for themselves.
Sadly, this situation is not uncommon. I've watched a friend and a co-worker in their respective battles to get help for their children. The gaslighting from the medical and education professionals was unbelievable.. It was such a relief for them to both finally receive diagnoses after years of being told nothing was wrong. I see stories about Munchausen by proxy and I wonder how the hell these mothers pulled it off when sane mothers have to jump through hoops to get what their children need.
As to the "just a vet" comment. Vets have to have knowledge of multiple animal systems, not just one. They perform surgeries. They also specialize. I had a 4 month wait to take my cat to a dermatologist, lol. My own vet, practicing for over 50 years, can tell me what's wrong by look and feel. (Confirmed through medical testing).
Happy Mother's Day to those women who turn their lives upside down for love -- total commitment for a lifetime, as close to Christlike sacrifice as you get in humanity. Thank you, Mom. I wish I had found a way to repay all your love.
I have tears in my eyes when I read this piece. The mountains a parent will go through to help their child are simply limitless. We too had a relatable though not a similar experience with our own son (we are not scientists however). Our son was diagnosed with epilepsy at 18. We nearly lost him in the interventions before that as he was diagnosed with ADHD, anxiety, depression two years prior etc. He’s nearly 20 now and when we look back, we realize all of those diagnoses (and interventions) were, in a word, wrong. He had a seizure during a math final exam during remote learning. That was how we discovered he had epilepsy (all of his seizures occurred at night while he was sleeping). Finding the right medication mix is heartbreaking. Some of these drugs have side effects that can make a person suicidal, psychotic, angry etc. All we wanted him to do was graduate high school. He did in 2022 and for nearly a year, we have been ramping up and down various medications, doctors etc. We are now working with a doctor 3000 miles away who had a different operating theory on medications. Our son ramped up and down two more cycles and suddenly in March our conversations with our son started to sound like conversations we had with him when he was 13 and likely before he was having seizures. Now he is getting his life together….he still suffers side effects but they are more physical in nature - nausea, loss of appetite and we are working through those. But the best mother’s day I will ever have is this one, because we have our son back….
When love, intellect, persistence, courage, and a refusal to be cowed by conventional wisdom meet! This is the rugged individualism that leads to real progress in all realms, the same individualism that woke collectivism is dedicated to crushing. An amazing woman and an amazing family!
Don't think for a minute that it's just moms, or that two X chromosomes make one uniquely qualified as a parent. I happen to know a father who has shepherded two sons - his only offspring - one autistic, one profoundly deaf - through two failed marriages, two cochlear implant surgeries, bouts with alcohol abuse, and a myriad of other challenges, and for nearly two decades has done it essentially alone. Still married at the time, he tells me of the morning before his two-year old's cochlear surgery, awake at 4:00 a.m., sitting by the bedside watching the rain fall outside his hotel window, his wife sound asleep, as he contemplated the upcoming surgery, and how utterly ALONE he felt. That was decades ago now, with a lot of water over the dam since then, but that son graduates college on this very day. Has it all been worth it? Has it been worth doing alone? He says yes.
What a tremendous story! And what great parents!
I was once a “translational scientist” - I called myself a technologist - in a very different field. I now think of that role as a sort of tailor, taking swatches of knowledge to sew solutions to real problems. The scientists and other knowledge generators provide the cloth and the threads I use. My job is to fit them to the problems. Without the tailor, the knowledge slowly goes out of fashion and is forgotten, and those with the problems remain naked, or at least ill-clothed.
I’m struck by this line: “There was something about motherhood that enabled me to see the fullness of our society’s rot more clearly.” Wow do I feel that. Three children in, the scales have fallen from my eyes. It’s hard for me to take heart in a system that so clearly and often values profit over people, especially when those little people are mine.
I also see the goodness, and the sameness, and the love for children that binds parents across demographic divides. We did check out of modernity to some degree--bought a farm in West Virginia, abandoning the DC bustle for beautiful country roads and scenes of rural poverty. What I’ve found here is a community that loves its kids. Even if we have different origins, we meet in that shared space.
I write about parenting, about walking each other home on the path of parenting, in my Substack. Would love to share it:
Juliaromano.substack.com
I love the thought of "translational scientists" gliding between nodes of accumulated knowledge like merchants on the Silk Road.
And, yes. The hardest part about being a mother is that there are many times when your children will feel pain, and _you_ won't be able to do anything about it.
Orphan drugs (gotta love that nomenclature!) make up about 5% of the pharmaceutical industry if memory serves me right. I think the real tragedy for Ms. Newhouse here is that it took her son's medical team seven years to identify her son's genetic condition.
And yep, the pharmaceutical industry is profit-driven. That _does_ turn its customers into clay pigeons to a greater or lesser degree. I am remembering specifically the time when Joe Manchin's daughter, then working at Pfizer, raised the price of the ubiquitous EpiPen (which those of us with bee sting allergies would be wise to carry at all times) from roughly $100 to well over $600—just because she COULD. There was no corresponding rise in manufacturing costs!
Pfizer went on to make a sizeable contribution to Manchin's campaign—but, gee! That must have been a coincidence, right? 😀
What a beautiful story of love, sacrifice and iron determination.
I was struck, however, by Alana's observation about:
"the endless conga line of impressively credentialed, often fantastically insensitive doctors; the black abyss of insurance companies into which we throw enormous sums of money only to receive more bills in return, along with confusion (on their part, and often, soon, also on yours) about whether the procedure is really necessary in the first place; our schools, which torture the best teachers and elevate the worst ones, like some sort of distillery from hell."
I wonder if we are headed to a shared realization that our politics are equally broken. That we're fighting over nonsense and made up outrage when we should be coalescing around a party that helps and rewards all hard working and responsible Americans by making their lives easier. Where facts and solutions really matter. And common sense prevails.
Just a thought. Happy Mothers Day to all the incredible, smart and insightful women and moms posting here.
Thank you for speaking for those of us without a diagnosis. It is a lonely place.
My daughter doesn't have this disease
She has some disease or malfunction. But, she's not "bad enough" for anyone to care. The author's description of what it is like to parent a child without a diagnosis is accurate. How do you begin to treat them when you don't know what is wrong?
After 6 years of chasing an answer, I was taking a break. We both needed a step back. Then she had another flare and another X-ray that didn't look right, so here we sit, facing at MRIs and doctors appointments again, probably PT (and fights over doing the exercises), decisions about courses of action, and waiting to speak to doctors who act like we are wasting their time.
My trust in the medical system is gone and won't return.
Bless every Mother and family that deals with such heartbreaking and absolutely gut wrenching issues with their children. As a father I know that even us do not have the connection to a child that a Mother has. Mothers who care, nurture, and pray every second for their child cannot be replicated by a stupid village.
My Mother sat by my bed talking to me for several months in a comatose state and was told she was wasting her time. But Mom always said “I knew you could hear me and would come back “. I miss her everyday.
Mothers are just the best thing ever! Happy Mothers Day to all of you and damn you are truly the greatest and yes the core of life for everyone.
It is a wonderful tale well told. Will give you the view from a son, who went through something different, but just as trying.
Was born in '48, for six months was a normal healthy child. Then my mother's immunities wore off and was allergic to just about everything, asthmatic, off the charts, waking up one to six times a night, needing a shot of adrenaline to keep breathing. Doctors did house calls at that time, finally at about two and a half, he decided he needed more sleep. So my mother learned how to sterilize a syringe, they were glass in those days, and give a shot. For a year, she slept on a cot by my bed, waking up with me, taking care of me,. Finally I could wake up, without any terror, with a profound knowledge, that she was there, things would get better, and she went back to my bed with my father.
A few years later, was hospitalized for a year, to see what specialists at Stanford Convalescent Hospital could do. Nothing was the result. Back a bit, from about six to nine months, was started on first cortisone, then prednisone, when it came out, daily, that continued till was seventeen. Between four and twelve, spent three and a half years in hospitals, with no change or improvements. There was so much that I could not do, and so little I could. Finally at eighteen, a new doctor, with a new idea, found the answer.
A part of my blood, that is responsible for anti-bodies was for all intents and purposes missing. After two years of shots, a new world, a new life opened to me. The memory of her sacrifices, the patience of my dad, my older brother and sister, are beyond belief, if they were not realized and lived by me.
The years since twenty have held much, but the wonder and memory of her, underlay everything.
I’m glad that Alana finally has both an answer and some hope for her son. It was difficult and depressing to read her story of persistence and her view of how broken and useless she found our society. I was fortunate in that I had to struggle only with far less serious issues with my own children, but I have seen such frustration and despair in others. In contrast, it would be interesting and inspirational to hear from her friend Allyson who, despite the difficulties facing her and her daughter, had the skills and determination to find a way through the ignorance and bureaucracy.
People like Allyson—courageous, upbeat, and dedicated to make a difference—have a lot to teach us all about how to make our lives, and those of others around us, better. We could use more Allysons in this world.
As a mother and a pediatrician, I had so many thoughts reading this article. The first is that I am always amazed and humbled by the fierce advocacy of mothers. I work with a number of children with complex medical conditions and the moms are rocks stars (the dads are too but I see the moms more often)! My heart hurts that this mother felt brushed off by the medical community. Medicine is a very imperfect science and there is A LOT that we do not know. It is possible that the specific genetic test that finally gave her the answer was not available during the first few rounds of enquiry. That being said, there is a world of difference between "I do not know what is going on with your child" and " I do not know what is going on with your child but I am here to support you as you walk this road." Lastly, pharma is a big business and they are only watching out for themselves.
Sadly, this situation is not uncommon. I've watched a friend and a co-worker in their respective battles to get help for their children. The gaslighting from the medical and education professionals was unbelievable.. It was such a relief for them to both finally receive diagnoses after years of being told nothing was wrong. I see stories about Munchausen by proxy and I wonder how the hell these mothers pulled it off when sane mothers have to jump through hoops to get what their children need.
As to the "just a vet" comment. Vets have to have knowledge of multiple animal systems, not just one. They perform surgeries. They also specialize. I had a 4 month wait to take my cat to a dermatologist, lol. My own vet, practicing for over 50 years, can tell me what's wrong by look and feel. (Confirmed through medical testing).
Happy Mother's Day!
Happy Mother's Day to those women who turn their lives upside down for love -- total commitment for a lifetime, as close to Christlike sacrifice as you get in humanity. Thank you, Mom. I wish I had found a way to repay all your love.
I have tears in my eyes when I read this piece. The mountains a parent will go through to help their child are simply limitless. We too had a relatable though not a similar experience with our own son (we are not scientists however). Our son was diagnosed with epilepsy at 18. We nearly lost him in the interventions before that as he was diagnosed with ADHD, anxiety, depression two years prior etc. He’s nearly 20 now and when we look back, we realize all of those diagnoses (and interventions) were, in a word, wrong. He had a seizure during a math final exam during remote learning. That was how we discovered he had epilepsy (all of his seizures occurred at night while he was sleeping). Finding the right medication mix is heartbreaking. Some of these drugs have side effects that can make a person suicidal, psychotic, angry etc. All we wanted him to do was graduate high school. He did in 2022 and for nearly a year, we have been ramping up and down various medications, doctors etc. We are now working with a doctor 3000 miles away who had a different operating theory on medications. Our son ramped up and down two more cycles and suddenly in March our conversations with our son started to sound like conversations we had with him when he was 13 and likely before he was having seizures. Now he is getting his life together….he still suffers side effects but they are more physical in nature - nausea, loss of appetite and we are working through those. But the best mother’s day I will ever have is this one, because we have our son back….
When love, intellect, persistence, courage, and a refusal to be cowed by conventional wisdom meet! This is the rugged individualism that leads to real progress in all realms, the same individualism that woke collectivism is dedicated to crushing. An amazing woman and an amazing family!
A mother just knows...it’s perhaps God’s way of protecting the innocent. Happy Mother’s Day to the “stronger” sex.
i loved this article! Yhank you so much for sharing it with us and happy mothers day to you. What a gift motherhood is.