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.
204 comments
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I’m thrilled to share my incredible experience with psychic medium Ibrahim, a powerful psychic medium Ibrahim who helped me reunite with my wife. We were facing numerous issues, and our relationship deteriorated, leading to a heartbreaking breakup. However, with the guidance of psychic medium Ibrahim, whom my friend introduced me to, I followed his advice and, amazingly, my wife returned to me within 24 hours! I’m forever grateful. For those seeking help, you can reach psychic medium Ibrahim at profibrahim98@gmail.com or WhatsApp him on +27785149508 /
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Simon
It’s an honor to share my testimony with the world. You merit all the accolades that mention you. psychic medium Abdul Basser has been a gift to me since our meeting online. He is the only one that knows everything about prayers,rituals casting spells. I adore him immensely for his kindness, compassion, integrity, and the support he offers to everyone who interacts with him. Without psychic medium Abdul Basser, I wouldn’t have survived this difficult situation. His magic turned me into a Lottery winner of £197 Million Pounds, transforming my entire life into something beautiful and extraordinary. The numbers he provided for the lottery were transformative, elevating me from grass to grace, and I want to express my eternal gratitude to him. Thank you, sir psychic medium Abdul, for being a source of help to those in need. Anyone who reads this article and requires assistance can reach him through his Email basserabdul59@gmail.com,+27717403094,visit, https://africanancientspells.mystrikingly.com/
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I met my wife when I was working and living in Texas Dallas. Ever since we got married, it has been all good till she decided to go for a summit in Baltimore where she met someone who became closer to her and eventually he eloped with her. All my efforts to get back home to me was all in vain and her family did their best to reunite us but nothing worked. Just like everyone else, I came in contact with Prof Ibrahim and he eventually did wonders and now my wife is back to me. It was revealed that she was hypnotized by the guy who eloped with her. I am glad I never let my emotions get the best of me to have ended my marriage with her. Prof Ibrahim is a strong psychic medium and trust him when he says the results will manifest just after 58 hours. Contact him now if you need any help text him on WhatsApp +27785149508/visit his websites for more services
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I was so lucky to win the $10 millions prize in the lottery. I have been playing the powerball lottery for about 23 years, and i didn’t win any big amount until psychic medium Abdul Basser helped me with his spiritual winning numbers, I thought it was all fake until he gave me the numbers and directed me on how to play. He gave me assurance that I was going to win and asked me to give him 58 hours to finish his work, which I did. The third day, he gave me the numbers and gave me instructions on how to play, and luckily, I won. I want to let everyone who is reading this to know that this spell really works and you can also be a winner if you give it a try to see for yourself. The moment you contact psychic medium Abdul Basser for help is the end of suffering in your life, he has been helping people around the world and I’m happy that I’m among those who has benefited from his great work he’s doing, you can reach him if you really want to win the lottery Email:basserabdul59@gmail.com
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Hello am Whittley Voltaire from the united state,Mississippi, i read some testimony about Prof Ibrahim on how he has helped people in bringing back there ex within 27hours i was just thinking if that was real, And decided to call a lady who made a testimony and also dropped her number, So i called her and ask her about Prof Ibrahim she said Ibrahim is a trustworthy working man and he his ready to bring back my lover for me, i was just so happy and a little bit relief that my lover will be back to me soon, Then i decided to contact Ibrahim, And before i could share with him my problem he has already told me what i came for, And he said everything will be okay within 49hours that my lover will be back in to my arms, So he said he would be casting the spell,prayers,rituals and that within 49hours my lover would call me, So i hoped so truly before the 49hours i got a call from a man who has left me for the past 3years saying he is sorry and he wants me back, i was happy and i said i also want him back, Then i traveled to Canada to meet him up, And he apologized for what he has done to me now he proposed to marry me and we are both preparing for our wedding soon, All thanks to the great and World best psychic medium astrology.
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Abdul
Voodoo Revenge Spells
Revenge voodoo spells to restore the balance when someone has wronged you, hurt you or taken something away of value from you. Voodoo revenge spells to get the ultimate revenge against your enemies. Get justice using revenge spells for thieves & revenge spells for people who have harmed you. Hex a person & have the ultimate revenge with voodoo revenge spells. Cause harm, bad luck, disaster & sickness on your enemies using voodoo revenge spells to retaliate back with love revenge spells, business revenge spells, job revenge spells, thief revenge spells, and money revenge spells
Did a ex-lover use you & then dump you? Did someone take advantage of you in any way? Order revenge spells
Did someone steal your job? Did someone make your cross? Order revenge spells
Do you want to payback for humiliation someone caused you? Do you want to get even with someone? Order revenge spells
Did someone assault you; rape you or a close friend? Is a business rival taking away all your business? Order revenge spells
Did someone steal all your money or priced possession? Do you want to punish someone? Order revenge spells
Bad luck revenge spells
Rain bad luck in the life of your rival or enemy with bad luck revenge spells to cause a person to experience more bad luck with love, money & games of chance. Bad luck revenge spells to cause someone to experience back luck in their love life. Cause a breakup or divorce using bad luck love revenge spells. Affect someone’s career using bad luck revenge spells to cause someone to lose their job, not get a job promotion or salary increase. Powerful revenge spells to help you get the ultimate revenge on your enemies. Health revenge spells will cause your enemy severe health problems.
Death revenge spells
If someone has truly wronged you and you want to get back on them with the ultimate revenge spell, then try this witchcraft death revenge spells. The most precious asset we have is life so the death revenge spell is by far the most powerful revenge spell in the world as it will lead to the death. I only cast the death revenge spell when you have given me all the proof that the person you want to cast upon deserves death as punishment. Spells for revenge to cause your enemy to have sleepless nights & frightening dreams. Banish bad dreams & nightmares if someone has cast bad dreams revenge spells.
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Ann
Hello everyone, I’d like to take this opportunity to express my heartfelt gratitude to Prof Ibrahim, a powerful psychic medium Astrology who helped me reunite with my ex-lover after a painful breakup. For 10 long months, I thought our relationship was over, but Prof Ibrahim psychic medium brought us back together. Within 28 hours of the spell being cast, my ex reached out, apologizing for the hurt and promising to make amends. I was overjoyed and welcomed her back into my life. If you’re facing similar relationship challenges or other difficulties, I highly recommend contacting Prof Ibrahim. His spell casting abilities are truly remarkable and powerful. You can reach Prof Ibrahim via WhatsApp:Tel: +27785149508 /
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I would like to share an important experience as a reminder to others in the crypto space.
I fell victim to an investment scam and lost 560,870. Following the incident, I pursued formal reporting procedures and sought legitimate professional assistance to address the situation.
Crypt0currency investments require careful verification and risk awareness. Always work with trusted platforms and avoid unsolicited offers.
Prevention and awareness remain the strongest safeguards against fraud. if you have been scum by Crypto Richard to professional hackers like Brunoe Quick Hack. Contact: BrunoeQuickHack(AT)GMAIL.COM WhatsApp +17057842635……..
John H Collins
I would like to share an important experience as a reminder to others in the crypto space.
I fell victim to an investment scam and lost 560,870. Following the incident, I pursued formal reporting procedures and sought legitimate professional assistance to address the situation.
Crypt0currency investments require careful verification and risk awareness. Always work with trusted platforms and avoid unsolicited offers.
Prevention and awareness remain the strongest safeguards against fraud. if you have been scum by Crypto Richard to professional hackers like Brunoe Quick Hack. Contact: BrunoeQuickHack(AT)GMAIL.COM WhatsApp +17057842635……..
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A NEW MEMBER WILL BE GIVEN THE SUM OF
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fill in the following as well-:
NAME………………..
NEXT OF KIN……………….
ADDRESS……………..
MARITAL STATUS………….
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STATE………………
OCCUPATION…………….
MOBILE LINE…………
A NEW MEMBER WILL BE GIVEN THE SUM OF
120MILLION DOLLARS, A CAR, AND A HOUSE IN ANY
PART OF THE WORLD. NOTE: WE ARE NOT FORCING
ANYBODY FOR THIS? IF YOU ARE NOT INTERESTED
PLEASE DON’T APPLY