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.
I know many mothers like this one. I'm inspired by and learn from them. I've been through my own diagnosis journey, with my youngest son. I've spoken to people should never be allowed to speak to a parent, again. My son's teacher finally figured out what the medical "experts" could not. Now that he's nearly 24, it's amazing how far he's come. But, it is still a marathon and this solo mom gets tired of being Atlas, some days. Our systems are functioning like an 18 wheeler with 13 flat tires and the wrong size engine.
I understand your anguish, but in the end, no matter how broken you think the system is, it worked, albeit your persistence had a role. Us physicians listen to a lot of parents, and for the majority of the time, we are correct, but at other times we are too dismissive. We have become jaded due to many irrational encounters with many irrational patients and family, But that is no excuse not to listen with sincerity and in earnest.
What a beautiful story, Alana, if also incredibly sobering. I truly do think God gives so many of these special needs children to the right parents. My daughter was diagnosed as a special needs children, with learning challenges in reading and math. It meant that she was supposed to on an individual learning plan to address her cognitive challenges. I never saw such a plan implemented and I soon came to realize that if she was to get any help, that was on me. My daughter is my adopted child and I only say that as I profoundly believe that the deep wounds associated with adoption are part of her story, though not necessarily the story of every adopted child. I was lucky. I could hire private after-school tutors. She went through a litany of psychologists, psychiatrists, and counselors. I pushed and pushed and sought help wherever I could. Anti-depressants helped a lot and I credit these anti-depressants with lifting her out of a funk and her making the decision to go to college. She is now a graduate, married and looking forward to having her own family one day. I shudder to think what would have happened if I had not stepped in so aggressively. I don't regret one minute of it. She is my shining star and I love her to pieces.
I have a daughter with epilepsy. First seizure was 30 minutes after her kindergarten shots, and now she's 31. Thank God 18 months ago she was prescribed ( yet another) new drug, Xcorpi, that actually works for her. Her neurologists have mostly been wonderful, but my community, and ideas, and fortitude, came from the online Moms of Epileptic forums. I thanked God everyday for them. I have a sister who has a Type 1 daughter and she's experiencing the same situation.
The years go by; my Child transforms, and so do I.
My Daughter made me a Mother; my Son made me a Warrior. I am nurtured by the love of my Daughter, and shaped by the needs of my Son. To Parent a Child with Special Needs is to train for Battle...
stronger, harder, purer, I poured through the crucible of Motherhood. My body and soul have grown to the task,my hands itch for the burden -
They both made me who I am, but the Parent of a Special Needs Child faces a call that requires a lifetime dedication beyond description. Alana's Story illustrates the Fire that consumes us, and changes us. Transformed, we fight on...
I would a thousand times again place my shoulder to the boulder, just for the incredible privilege of knowing my Son.
I know my comment is not about amazing mothers, but rather about a bad taste it left on me about doctors and pharmaceutical industry. There are a lot of bad things were said over the years about greed and ignorance of pharmaceutical companies, but I would like to see at least one example that confirms what author said:” cure for a rare and fatal disease somehow made it through all of the stages of discovery, clinical trials, and regulatory approval, and was in the process of successful administration to patients—only to be shelved by the biotech company that had been awarded the exclusive license to it. Why? Not because of any concerns about safety or efficacy, but for “ ‘business reasons,’ meaning that it wanted to invest instead in treatments for more common diseases with more potential for profits.”
Every single company that got an FDA approval will go to market their new drug or treatment immediately and AT THE SAME time ( or even before that) will work on something else.
It’s just a lot of people, regardless of what they are writing about, feel that they need to “ do not pass by, kick pharma! “.
I imagine most of us have visualized--before we had kids-- the nicest and 'prettiest' part of motherhood. But we never could predict the unique needs (whether physical or emotional) of each of our children. Parenting is a rollercoaster-- fun and sometimes scary.
Thank you for a piece highlighting the message of the old adage, “The hand that rocks the cradle rules the world.” The systems and our culture would all be better if we valued the beauty and the monumental significance of motherhood more.
Big pharma worked hard to save millions of lives during the pandemic... Vote Democrat!
Drug companies can produce life-saving vaccines in a matter of months, not years and years of trials... Vote Democrat!
Government works with its partners in the pharmaceutical industry to make health care affordable... Vote Democrat!
Joe Biden, Kamala H, Liz Warren, Bernie and the rest have reduced drug prices and the costs of treatment... Vote Democrat!
Health care is a human right... Vote Democrat!
If only the NRA and Republicans in Congress would stop blocking progress for all, then we could end human suffering and white supremacy in a single shot... Vote Democrat!
"But there is a unique terror in knowing something is wrong with your child, and being unable to figure out what it is—for years."
This is exactly what makes The Exorcist a four star movie, even for people like me who have little interest in the horror genre. To be responsible for a child who suffers from a malady, and to encounter nothing but indifference and dead ends everywhere you seek a remedy, or even a basic understanding of what's the matter, is the worst kind of nightmare conceivable. That someone in this position would eventually become desperate enough grasp at any straw, however flimsy, that offered some hope of revelatory insight and relief is perfectly plausible.
This true horror has nothing to do with religious mumbo-jumbo or hokey special effects; and, sadly, sometimes parents like Alana and their children experience it.
I know many mothers like this one. I'm inspired by and learn from them. I've been through my own diagnosis journey, with my youngest son. I've spoken to people should never be allowed to speak to a parent, again. My son's teacher finally figured out what the medical "experts" could not. Now that he's nearly 24, it's amazing how far he's come. But, it is still a marathon and this solo mom gets tired of being Atlas, some days. Our systems are functioning like an 18 wheeler with 13 flat tires and the wrong size engine.
Wow what a great story to start off my week. Thank you.
What a beautifully written testament to the power of love. ”There is always hope!” Indeed.
I understand your anguish, but in the end, no matter how broken you think the system is, it worked, albeit your persistence had a role. Us physicians listen to a lot of parents, and for the majority of the time, we are correct, but at other times we are too dismissive. We have become jaded due to many irrational encounters with many irrational patients and family, But that is no excuse not to listen with sincerity and in earnest.
What a beautiful story, Alana, if also incredibly sobering. I truly do think God gives so many of these special needs children to the right parents. My daughter was diagnosed as a special needs children, with learning challenges in reading and math. It meant that she was supposed to on an individual learning plan to address her cognitive challenges. I never saw such a plan implemented and I soon came to realize that if she was to get any help, that was on me. My daughter is my adopted child and I only say that as I profoundly believe that the deep wounds associated with adoption are part of her story, though not necessarily the story of every adopted child. I was lucky. I could hire private after-school tutors. She went through a litany of psychologists, psychiatrists, and counselors. I pushed and pushed and sought help wherever I could. Anti-depressants helped a lot and I credit these anti-depressants with lifting her out of a funk and her making the decision to go to college. She is now a graduate, married and looking forward to having her own family one day. I shudder to think what would have happened if I had not stepped in so aggressively. I don't regret one minute of it. She is my shining star and I love her to pieces.
I have a daughter with epilepsy. First seizure was 30 minutes after her kindergarten shots, and now she's 31. Thank God 18 months ago she was prescribed ( yet another) new drug, Xcorpi, that actually works for her. Her neurologists have mostly been wonderful, but my community, and ideas, and fortitude, came from the online Moms of Epileptic forums. I thanked God everyday for them. I have a sister who has a Type 1 daughter and she's experiencing the same situation.
The years go by; my Child transforms, and so do I.
My Daughter made me a Mother; my Son made me a Warrior. I am nurtured by the love of my Daughter, and shaped by the needs of my Son. To Parent a Child with Special Needs is to train for Battle...
stronger, harder, purer, I poured through the crucible of Motherhood. My body and soul have grown to the task,my hands itch for the burden -
They both made me who I am, but the Parent of a Special Needs Child faces a call that requires a lifetime dedication beyond description. Alana's Story illustrates the Fire that consumes us, and changes us. Transformed, we fight on...
I would a thousand times again place my shoulder to the boulder, just for the incredible privilege of knowing my Son.
The mama bears they get it done.
Wishing the best for these children.
Alana -- you are amazing 👍🏼👊🏼❤️
I know my comment is not about amazing mothers, but rather about a bad taste it left on me about doctors and pharmaceutical industry. There are a lot of bad things were said over the years about greed and ignorance of pharmaceutical companies, but I would like to see at least one example that confirms what author said:” cure for a rare and fatal disease somehow made it through all of the stages of discovery, clinical trials, and regulatory approval, and was in the process of successful administration to patients—only to be shelved by the biotech company that had been awarded the exclusive license to it. Why? Not because of any concerns about safety or efficacy, but for “ ‘business reasons,’ meaning that it wanted to invest instead in treatments for more common diseases with more potential for profits.”
Every single company that got an FDA approval will go to market their new drug or treatment immediately and AT THE SAME time ( or even before that) will work on something else.
It’s just a lot of people, regardless of what they are writing about, feel that they need to “ do not pass by, kick pharma! “.
I imagine most of us have visualized--before we had kids-- the nicest and 'prettiest' part of motherhood. But we never could predict the unique needs (whether physical or emotional) of each of our children. Parenting is a rollercoaster-- fun and sometimes scary.
This is a wonderful story. Good luck to everyone involved!
Thank you for a piece highlighting the message of the old adage, “The hand that rocks the cradle rules the world.” The systems and our culture would all be better if we valued the beauty and the monumental significance of motherhood more.
No, no no no no... This article has it all wrong.
Big pharma worked hard to save millions of lives during the pandemic... Vote Democrat!
Drug companies can produce life-saving vaccines in a matter of months, not years and years of trials... Vote Democrat!
Government works with its partners in the pharmaceutical industry to make health care affordable... Vote Democrat!
Joe Biden, Kamala H, Liz Warren, Bernie and the rest have reduced drug prices and the costs of treatment... Vote Democrat!
Health care is a human right... Vote Democrat!
If only the NRA and Republicans in Congress would stop blocking progress for all, then we could end human suffering and white supremacy in a single shot... Vote Democrat!
New York... Vote Democrat!
Democrats... Vote New York!
New York!
Democrat!
"But there is a unique terror in knowing something is wrong with your child, and being unable to figure out what it is—for years."
This is exactly what makes The Exorcist a four star movie, even for people like me who have little interest in the horror genre. To be responsible for a child who suffers from a malady, and to encounter nothing but indifference and dead ends everywhere you seek a remedy, or even a basic understanding of what's the matter, is the worst kind of nightmare conceivable. That someone in this position would eventually become desperate enough grasp at any straw, however flimsy, that offered some hope of revelatory insight and relief is perfectly plausible.
This true horror has nothing to do with religious mumbo-jumbo or hokey special effects; and, sadly, sometimes parents like Alana and their children experience it.
A beautiful and moving essay. A reminder of how motherhood changes you completely in ways you don't anticipate.