Please welcome Leah Trotter to our blog; an incredible parent and advocate for her son Jack. She's here today to share her raw emotions about her experience with her son and his rare disorder.
My story starts with a trauma. It is hard to think of your life in those lines. I never actively think, “wow, what a trauma we have suffered.” But the feeling is always there, in my gut, and it has dictated my thoughts and actions for over two years now. Before my son was born, I thought of trauma in a disconnected and almost fantastical way. Trauma was what happened on Grey’s Anatomy and it was usually wrapped up nicely in under an hour. Real life trauma feels like you are fighting with your own body to breathe in and out; like your heart is walking around outside of your body and you can’t get it back where it’s supposed to be. From the moment my son was life-flighted at 5 days old in status epilepticus suffering acute respiratory failure, I have been in a constant state of stress. I feel stuck in an endless loop of the fight-or-flight response. Where’s the exit and how do I get off? There really isn’t one so I think we are supposed to make our way out. I am ready to switch lanes and learn to thrive, advocate for Jack, and be happy without the feeling of impending doom lurking over my shoulder.
Jack was born seemingly healthy but fighting an invisible battle inside his little body. At five days old, Jack’s disorder reared its ugly head by putting him into status epilepticus (a dangerous condition in which epileptic seizures follow one another without recovery of consciousness between them). This caused Jack to suffer acute respiratory failure and he was life-flighted to the leading children’s hospital in our state. This was the first of many admissions for my newborn son and I was on pins & needles the entire stay. Admitted to the PICU, Jack continued to seize without an obvious cause. There was a flood of white coats in my son’s hospital room; we saw neurology, genetics, infectious disease, GI, blood disorder doctors, etc. Opinions lit up like wildfire and spread before I even had the chance to process the reality of the situation. PICU doctors started Jack on 4 different antibiotics to treat for Meningitis. It had not been confirmed that Jack had meningitis, but his CSF from his first LP was yellow in color. Forgetting his jaundice diagnosis, the doctor panicked and threw the kitchen sink of antibiotics at Jack, meaning he had to get a PICC line placed. Jack did not have meningitis but instead was diagnosed with an HIE (hypoxic ischemic encephalopathy) a few days later. We were told he had a significant brain injury, etiology unknown and unsearched for, and to prepare for a future with cerebral palsy and anti-epilepsy medications. It was presented in the most somber way as if our lives were over. Cue fight-or-flight in this mama. This chaotic hospitalization set the tone for Jack’s medical journey and my mistake was letting it happen that way. To keep with the driving metaphor, I was asleep behind the wheel. Looking back at myself, I see a doe-eyed and inexperienced mother who was completely unprepared for the harsh realities of life.
I think there have been butterflies in my stomach since the day I realized that my infant son had a real-life brain injury. Again, as sad and stupid as this is, a brain injury sounded like such a far-off fantastical thing…a thing that couldn’t happen to me, not my son because surely that doesn’t happen in real life. It will be a true miracle if I can ever forgive myself the indiscretions of ignorance. Anyway, it took five more months to figure out what was going on with my son. Jack was in and out of the hospital suffering from intractable seizures. He was on Phenobarbital, Topamax, Keppra, Fosphenytoin, and STILL having seizures. During a particularly difficult hospitalization at 12-weeks old, Jack began having gelastic and dacrystic seizures (aka terrifyingly creepy laughing and crying seizures). These are straight out of your worst nightmares and most commonly associated with a certain type of brain tumor so Jack was rushed for an MRS (basically a more in-depth MRI). Following this test, Jack’s neurologist diagnosed him with Mitochondrial Disease and told us that she not only saw an injury to Jack’s brain, but also atrophy that had begun to progress and would continue to, until he died. My husband asked if there was any hope for our son and the neurologist just looked at the ground and shook her head no. We lived with this for another 3 months before Jack was properly diagnosed with Pyridoxine-Dependent Epilepsy (PDE). This is a rare genetic and neurometabolic disorder that caused Jack’s HIE and all other symptoms/diagnoses.
The signs had been missed and my son suffered for 6 months unnecessarily. However, I learned how to fight for my son during this time. My fight-or-flight instinct kicked that doe-eyed mama into gear. The only problem is that I have been fighting ever since and I feel trapped by own response to these events and all I’ve experienced trying to help my son. I’m tired, but don’t know how to stop. I feel like that toy at the bottom of the toybox that didn’t get turned off it’s making noise, annoying everyone. You know the one.
Jack is 2.5 years old now and he is doing so well. His disorder is metabolic, so his strict diet dictates absolutely everything in our lives basically. He has some different needs and struggles, but he is also thriving. The past 6 months have been the most stable of the past few years. There has been so much to celebrate with Jack’s development, but I am hesitant to do so. The other shoe has always dropped with regard to Jack’s disorder and I live in fear. I know hospitalizations will be a part of our lives and I have accepted that and even know how to thrive there, but I find myself struggling to thrive during the “normal” periods. There have been more and more of these lately, and I want to enjoy them freely without the looming fear. I am struggling most with just being Jack’s mom. I have had to be his physical, occupational, feeding, and speech therapist for the past few years and will be for the rest of his life. I took on the job of healing Jack’s brain like his life depended on it (oh wait…). I am such a believer in neuroplasticity and my son is an attribute to its possibilities, thus I have been hitting the early intervention hard since Jack was tiny. As much as I am his cheerleader, I am also his drill sergeant. I’ve heard Jack’s physical therapist say to him, “don’t look at your mom because you know she’s not going to help you” in reference to completing a therapy activity. Poor Jack Jack! I think it’s stuck in my brain that if I am not actively fighting for Jack then I am giving up on him. But for the sake of myself and my entire family, I am seeking balance. I am learning to live instead of just surviving each day, and I say learning because it is a work in progress. It’s good to see what’s in my rearview, but what’s most important lies ahead!
I may always struggle to find balance in Jack’s care. I know there will always be battles with insurance for some of Jack’s services, and I know there will be ups and downs in his health. I can take all that in stride, but It’s daily life that I need to get better at. I think maybe being a good advocate for my child also means knowing when to stop fighting and just be his mom because the truth is that I’ve never really had the opportunity to just be “mom” to Jack. That was taken away from me early on, but it’s up to me to take it back. This journey has taught me how to be the mom that Jack needs. It’s taken a long time, but I finally see my exit. I’m ready to follow Jack’s lead and spend less time looking over my shoulder.
Thank you!
Follow along with Leah and Jack on Instagram and their website.
452 comentarios
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As a legal practitioner, my client insisted I share their experience while handling a crypto recovery case involving a businessman from Hong Kong, China, Mr Zhao Tiancheng, who lost a substantial amount of money through crypto trading to the tune of 5.4 million yen (approx $800K USD).
Mr. Zhao contacted my legal team for assistance in recovering his crypto after hackers gained unauthorized access to his trading portfolio.
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Shari Andrew
Hello everyone, I want to quickly use this medium opportunity to share a testimony on how I was directed to a Legit and real illuminati member who have transformed my life from grass to grace, from being poor to a rich man who can now boast of a healthy and wealthy life without stress or financial difficulties. After so many months of trying to be a member of the illuminati and i was scammed the sum of $7,000 i became so desperate in being a member online who will not add to my pains, then i decided to contact a friend of mine who recently became a member, we discussed about the issue and to our conclusion she told me about a man called Mr Richard Fred who is the grand master in the whole of Africa. So i applied to become a member of illuminati easily without stress and all the preparations were made concerning how to become a member in two(2) days i became a member and the sum of $5,000,000 (five million dollars) was deposited into my bank account and many benefits, so i want to advice anyone who wants to become a member should call or WhatsApp him: +2348138516093 or email (illuminatisociety579@gmail.com) For more information
Shari Andrew
Hello everyone, I want to quickly use this medium opportunity to share a testimony on how I was directed to a Legit and real illuminati member who have transformed my life from grass to grace, from being poor to a rich man who can now boast of a healthy and wealthy life without stress or financial difficulties. After so many months of trying to be a member of the illuminati and i was scammed the sum of $7,000 i became so desperate in being a member online who will not add to my pains, then i decided to contact a friend of mine who recently became a member, we discussed about the issue and to our conclusion she told me about a man called Mr Richard Fred who is the grand master in the whole of Africa. So i applied to become a member of illuminati easily without stress and all the preparations were made concerning how to become a member in two(2) days i became a member and the sum of $5,000,000 (five million dollars) was deposited into my bank account and many benefits, so i want to advice anyone who wants to become a member should call or WhatsApp him: +2348138516093 or email (illuminatisociety579@gmail.com) For more information
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I recommend this Psychic/Astrologist Tanya Debo (info.debo.org@gmail.com), who helped me bring back my Husband after years of separation.
With my desperation and relentless effort to get him back, i was scammed severally by fake online spell casters and psychic spiritualists and imposters who also operate pages and groups on social media just to defraud people. Such was my ordeal until my Aunty recommended Psychic Tanya Debo to me. She is a gifted spell caster, traditional healer and spiritualist. She also helped me out with other issues i was battling with in my personal life. My husband is back to me and the kids and we are a one happy 😊family in peace, love, joy and Harmony. As a matter of fact, my husband gave me password to his phone and i have full access to his phones and computer. He totally cut off the other woman who once took him away from me for years. Tanya Debo, you are the best online spell caster and i will continue to testify about your great works. You can reach her through this email address: info.debo.org@gmail.com Call/Whatsapp +2348101793937.
Tanya Debo also have solutions to the below situations and i strongly believe her, because i am a living testimony. I have also recommended some friends to her and they happy now, because Tanya Debo Helped them solve their problems. You can contact her for any help, she is very powerful and can solve the below problems and with 100% guarantee results.
Do you want your EX lover back?
Pregnancy Spells
Spells to protect you from Gun shot Or Any Form Of Sharp Objects
Spells For Third-party Removal/Unwanted interference Removal
Spell for your husband to appreciate you
Spell to get famous
Spells to grow business excessively
Spells to get a Job
Spells to get a husband
Spells to Win Court Case
Spells to get your loved ones out of prison
promotion spells
Protection Spells
Spells to win Lottery
Tanya Debo, you are the best online love spell caster to help people. And I will continue to testify about your great works.
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I recommend this Psychic/Astrologist Tanya Debo (info.debo.org@gmail.com), who helped me bring back my Husband after years of separation.
With my desperation and relentless effort to get him back, i was scammed severally by fake online spell casters and psychic spiritualists and imposters who also operate pages and groups on social media just to defraud people. Such was my ordeal until my Aunty recommended Psychic Tanya Debo to me. She is a gifted spell caster, traditional healer and spiritualist. She also helped me out with other issues i was battling with in my personal life. My husband is back to me and the kids and we are a one happy 😊family in peace, love, joy and Harmony. As a matter of fact, my husband gave me password to his phone and i have full access to his phones and computer. He totally cut off the other woman who once took him away from me for years. Tanya Debo, you are the best online spell caster and i will continue to testify about your great works. You can reach her through this email address: info.debo.org@gmail.com Call/Whatsapp +2348101793937.
Tanya Debo told me she have solutions to the below situations and i strongly believe her, because i am a living testimony. I have also recommended some friends to her and they happy now, because Tanya Debo Helped them solve their problems. You can contact her for any help, she is very powerful and can solve the below problems and with 100% guarantee results.
Do you want your EX lover back?
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Spells to protect you from Gun shot Or Any Form Of Sharp Objects
Spells For Third-party Removal/Unwanted interference Removal
Spell for your husband to appreciate you
Spell to get famous
Spells to grow business excessively
Spells to get a Job
Spells to get a husband
Spells to Win Court Case
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promotion spells
Protection Spells
Spells to win Lottery
Tanya Debo, you are the best online love spell caster to help people. And I will continue to testify about your great works.
Toni Owens Myers
I recommend this Psychic/Astrologist Tanya Debo (info.debo.org@gmail.com), who helped me bring back my Husband after years of separation.
With my desperation and relentless effort to get him back, i was scammed severally by fake online spell casters and psychic spiritualists and imposters who also operate pages and groups on social media just to defraud people. Such was my ordeal until my Aunty recommended Psychic Tanya Debo to me. She is a gifted spell caster, traditional healer and spiritualist. She also helped me out with other issues i was battling with in my personal life. My husband is back to me and the kids and we are a one happy 😊family in peace, love, joy and Harmony. As a matter of fact, my husband gave me password to his phone and i have full access to his phones and computer. He totally cut off the other woman who once took him away from me for years. Tanya Debo, you are the best online spell caster and i will continue to testify about your great works. You can reach her through this email address: info.debo.org@gmail.com Call/Whatsapp +2348101793937.
Tanya Debo told me she have solutions to the below situations and i strongly believe her, because i am a living testimony. I have also recommended some friends to her and they happy now, because Tanya Debo Helped them solve their problems. You can contact her for any help, she is very powerful and can solve the below problems and with 100% guarantee results.
Do you want your EX lover back?
Pregnancy Spells
Spells to protect you from Gun shot Or Any Form Of Sharp Objects
Spells For Third-party Removal/Unwanted interference Removal
Spell for your husband to appreciate you
Spell to get famous
Spells to grow business excessively
Spells to get a Job
Spells to get a husband
Spells to Win Court Case
Spells to get your loved ones out of prison
promotion spells
Protection Spells
Spells to win Lottery
Tanya Debo, you are the best online love spell caster to help people. And I will continue to testify about your great works.
Toni Owens Myers
I recommend this Psychic/Astrologist Tanya Debo (info.debo.org@gmail.com), who helped me bring back my Husband after years of separation.
With my desperation and relentless effort to get him back, i was scammed severally by fake online spell casters and psychic spiritualists and imposters who also operate pages and groups on social media just to defraud people. Such was my ordeal until my Aunty recommended Psychic Tanya Debo to me. She is a gifted spell caster, traditional healer and spiritualist. She also helped me out with other issues i was battling with in my personal life. My husband is back to me and the kids and we are a one happy 😊family in peace, love, joy and Harmony. As a matter of fact, my husband gave me password to his phone and i have full access to his phones and computer. He totally cut off the other woman who once took him away from me for years. Tanya Debo, you are the best online spell caster and i will continue to testify about your great works. You can reach her through this email address: info.debo.org@gmail.com Call/Whatsapp +2348101793937.
Tanya Debo told me she have solutions to the below situations and i strongly believe her, because i am a living testimony. I have also recommended some friends to her and they happy now, because Tanya Debo Helped them solve their problems. You can contact her for any help, she is very powerful and can solve the below problems and with 100% guarantee results.
Do you want your EX lover back?
Pregnancy Spells
Spells to protect you from Gun shot Or Any Form Of Sharp Objects
Spells For Third-party Removal/Unwanted interference Removal
Spell for your husband to appreciate you
Spell to get famous
Spells to grow business excessively
Spells to get a Job
Spells to get a husband
Spells to Win Court Case
Spells to get your loved ones out of prison
promotion spells
Protection Spells
Spells to win Lottery
Tanya Debo, you are the best online love spell caster to help people. And I will continue to testify about your great works.
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Becca Wood
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Email: lordmeduzatemple@hotmail.com
Website: lordmeduzatemple.com
Becca Wood
Good day viewers, I’m wishing good fortune to everyone who comes across this comment! I went bankrupt last year due to failed business ideas. I used to enjoy playing the lottery for fun but as my situation worsened financially, I sought help to win big this time and found a man called MEDUZA, who has assisted numerous individuals worldwide with their financial issues. This man prepared a powerful spell for me that enabled him to get the secrete lucky numbers for me, I played the game with the numbers and to my astonishment, I discovered that I had won $259 million Jackpot after 2 weeks just has he said `Today, I’m now free of debt and I own different investments globally. Without Meduza, I wouldn’t have made it through the tough times I experienced last year. Truly, MEDUZA is a divine presence among us. If you are currently struggling in aspect of your life, reach out to MEDUZA through the below information’s.
Whats-App: +1 (807) 798-3042
Email: lordmeduzatemple@hotmail.com
Website: lordmeduzatemple.com
Toni Owens Myers
I recommend this Psychic/Astrologist Tanya Debo (info.debo.org@gmail.com), who helped me bring back my Husband after years of separation.
With my desperation and relentless effort to get him back, i was scammed severally by fake online spell casters and psychic spiritualists and imposters who also operate pages and groups on social media just to defraud people. Such was my ordeal until my Aunty recommended Psychic Tanya Debo to me. She is a gifted spell caster, traditional healer and spiritualist. She also helped me out with other issues i was battling with in my personal life. My husband is back to me and the kids and we are a one happy 😊family in peace, love, joy and Harmony. As a matter of fact, my husband gave me password to his phone and i have full access to his phones and computer. He totally cut off the other woman who once took him away from me for years. Tanya Debo, you are the best online spell caster and i will continue to testify about your great works. You can reach her through this email address: info.debo.org@gmail.com Call/Whatsapp +2348101793937.
Tanya Debo told me she have solutions to the below situations and i strongly believe her, because i am a living testimony. I have also recommended some friends to her and they happy now, because Tanya Debo Helped them solve their problems. You can contact her for any help, she is very powerful and can solve the below problems and with 100% guarantee results.
Do you want your EX lover back?
Pregnancy Spells
Spells to protect you from Gun shot Or Any Form Of Sharp Objects
Spells For Third-party Removal/Unwanted interference Removal
Spell for your husband to appreciate you
Spell to get famous
Spells to grow business excessively
Spells to get a Job
Spells to get a husband
Spells to Win Court Case
Spells to get your loved ones out of prison
promotion spells
Protection Spells
Spells to win Lottery
Tanya Debo, you are the best online love spell caster to help people. And I will continue to testify about your great works.
Toni Owens Myers
I recommend this Psychic/Astrologist Tanya Debo (info.debo.org@gmail.com), who helped me bring back my Husband after years of separation.
With my desperation and relentless effort to get him back, i was scammed severally by fake online spell casters and psychic spiritualists and imposters who also operate pages and groups on social media just to defraud people. Such was my ordeal until my Aunty recommended Psychic Tanya Debo to me. She is a gifted spell caster, traditional healer and spiritualist. She also helped me out with other issues i was battling with in my personal life. My husband is back to me and the kids and we are a one happy 😊family in peace, love, joy and Harmony. As a matter of fact, my husband gave me password to his phone and i have full access to his phones and computer. He totally cut off the other woman who once took him away from me for years. Tanya Debo, you are the best online spell caster and i will continue to testify about your great works. You can reach her through this email address: info.debo.org@gmail.com Call/Whatsapp +2348101793937.
Tanya Debo told me she have solutions to the below situations and i strongly believe her, because i am a living testimony. I have also recommended some friends to her and they happy now, because Tanya Debo Helped them solve their problems. You can contact her for any help, she is very powerful and can solve the below problems and with 100% guarantee results.
Do you want your EX lover back?
Pregnancy Spells
Spells to protect you from Gun shot Or Any Form Of Sharp Objects
Spells For Third-party Removal/Unwanted interference Removal
Spell for your husband to appreciate you
Spell to get famous
Spells to grow business excessively
Spells to get a Job
Spells to get a husband
Spells to Win Court Case
Spells to get your loved ones out of prison
promotion spells
Protection Spells
Spells to win Lottery
Tanya Debo, you are the best online love spell caster to help people. And I will continue to testify about your great works.
Sarah Vaughn
A Personal Review On How a powerful Love Spell caster helped me return my partner back to me with her powerful love spell, and Reunited us after separation.
I’m thrilled to share my incredible experience with Tanya Debo, a powerful spell caster who helped me reunite with my Husband. We were facing numerous issues, and our marriage deteriorated, leading to a heartbreaking breakup.
However, with the guidance of Mrs. Tanya Debo, whom my friend introduced to me, I adhered and sticked to her instructions and, amazingly, my husband returned to me within 48 hours! I’m forever grateful. For those seeking help, on ways to reunite with your partners and bring them back with love spell, I’ll definitely recommend you to Powerful and trustworthy Love Spell Caster Tanya Debo. You can reach out to her via her email info.debo.org@gmail.com Call/WhatsApp her on +2348101793937
You can contact her for any help, she is very powerful and can solve the below problems and with 100% guarantee results.
Do you want your EX lover back?
Pregnancy Spells
Spells to protect you from Gun shot Or Any Form Of Sharp Objects
Spells For Third-party Removal/Unwanted interference Removal
Spell for your husband to appreciate you
Spell to get famous
Spells to grow business excessively
Spells to get a Job
Spells to get a husband
Spells to Win Court Case
Spells to get your loved ones out of prison
promotion spells
Protection Spells
Spells to win Lottery
Tanya Debo, you are the best online love spell caster to bring back Ex and reunite relationships. I will continue to testify about your great and ambitious work.
Dexter Berger
Praise be to the incredible gifted Lord Meduza, I’ve never seen or heard of his lottery spell failing, not even once, and that includes my own experience. Every day, I feel renewed blessings after connecting with the Great Lord Meduza, who gifted me my winning six-digit lottery numbers that won me $740,000,000 million dollars by using his magical skills to foresee the outcome. I’m a dad of four, and it’s been a few years since I lost my wife to cancer; I miss her terribly. To wrap things up, I really want to thank Great Meduza for being so good at what he does. His guidance and lessons were applied swiftly and precisely, leading us to the best possible result, which we definitely achieved. May you stay blessed and know you’re in good hands with Lord Meduza.. You can reach him by email: lordmeduzatemple@hotmail.com or Call/Whats__App +1 807 798-3042. For more information check out his website at: lordmeduzatemple.com
Dexter Berger
Praise be to the incredible gifted Lord Meduza, I’ve never seen or heard of his lottery spell failing, not even once, and that includes my own experience. Every day, I feel renewed blessings after connecting with the Great Lord Meduza, who gifted me my winning six-digit lottery numbers that won me $740,000,000 million dollars by using his magical skills to foresee the outcome. I’m a dad of four, and it’s been a few years since I lost my wife to cancer; I miss her terribly. To wrap things up, I really want to thank Great Meduza for being so good at what he does. His guidance and lessons were applied swiftly and precisely, leading us to the best possible result, which we definitely achieved. May you stay blessed and know you’re in good hands with Lord Meduza.. You can reach him by email: lordmeduzatemple@hotmail.com or for more information, check out his website at: lordmeduzatemple.com
Max kai
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barbara
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I’ve been attempting to expand my wine business in my hometown in White Plains. For the past 7 years, I do play the lottery in my spare time, but on this blessed day I came across an article about Lord Meduza spell to win the lottery. I contacted Lord Meduza to see if it would work and after I agreed to his terms and conditions for completing the task for me, he performed his magical powers for me and within 48 hours he provided me with the numbers I needed to play the lottery, and I followed his directions. I found out at the store that I was the winner of a $105 million jackpot. For a moment I felt uncertain but I looked again and I saw it was real. As I speak to you, My level has been elevated from grass to grace and I’ve come to know that life is more spiritual and with the Lord Meduza spell, you can actually win the lottery. Lord Meduza contacts are listed as follows
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Nora Jackson
I’ve been attempting to expand my wine business in my hometown in White Plains. For the past 7 years, I do play the lottery in my spare time, but on this blessed day I came across an article about Lord Meduza spell to win the lottery. I contacted Lord Meduza to see if it would work and after I agreed to his terms and conditions for completing the task for me, he performed his magical powers for me and within 48 hours he provided me with the numbers I needed to play the lottery, and I followed his directions. I found out at the store that I was the winner of a $105 million jackpot. For a moment I felt uncertain but I looked again and I saw it was real. As I speak to you, My level has been elevated from grass to grace and I’ve come to know that life is more spiritual and with the Lord Meduza spell, you can actually win the lottery. Lord Meduza contacts are listed as follows
Whats..App: +1 807 798 3042
Email: lordmeduzatemple@hotmail.com
Website: lordmeduzatemple.com