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.
255 comentarios
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I’m Jeffery Vargas. My girlfriend ended our relationship for seemingly no reason and I came to understand that my financial struggles may have contributed to this, as a healthy relationship is difficult without money and aside from God, having more money is often seen as vital. For spell expertise, Lord Meduza is the right person to turn to. My girlfriend left me for another man due to my financial situation but after connecting with Lord Meduza he created a spell that not only brought my girlfriend back but also made me a lottery winner of €116 MILLION by providing me with the 6 lucky numbers to play the lottery. Everything feels almost unreal but I assure you this is genuine and it’s occurring. My life is incredibly beautiful and I owe my deepest appreciation to Lord Meduza as his efforts are the epitome of excellence. For enquiry, visit: lordmeduzatemple.com or email: lordmeduzatemple@hotmail.com or Whats _ App +1 (807) 798-3042.
Jeffery Vargas
I’m Jeffery Vargas. My girlfriend ended our relationship for seemingly no reason and I came to understand that my financial struggles may have contributed to this, as a healthy relationship is difficult without money and aside from God, having more money is often seen as vital. For spell expertise, Lord Meduza is the right person to turn to. My girlfriend left me for another man due to my financial situation but after connecting with Lord Meduza he created a spell that not only brought my girlfriend back but also made me a lottery winner of €116 MILLION by providing me with the 6 lucky numbers to play the lottery. Everything feels almost unreal but I assure you this is genuine and it’s occurring. My life is incredibly beautiful and I owe my deepest appreciation to Lord Meduza as his efforts are the epitome of excellence. For enquiry, visit: https://lordmeduzatemple.com or email: lordmeduzatemple@hotmail.com or Whats _ App +1 (807) 798-3042.
Daniel H. Mccall
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David Owen
CONTACT Mr Jude Gabriel call (2349010175450 or WhatsApp him through this number 2349010175450 or Email: illuminatiworldofsociety1@gmail.com Hello everyone my name is David Owen am from USA I am here to give a testimony on how I joined the illuminati brotherhood, I was trying to join this organization for so many years now,I was scammed by fake agent in south Africa and Nigeria,I was down,I could not feed my self and my family anymore and I tried to make money by all miss but all invail, I was afraid to contact any illuminati agent because they have eat my money,One day I across a post of someone giving a testimony, thanking a man called Jude Gabriel of being helping him to join the illuminati brotherhood, then I look at the man email and the phone number that was written there, it was a nigeria number I was afraid to contact him because a nigerian agent eat my $2000 and go away with the money then I was very tired, confused and I decided to contact the person that was given the testimony and i called him and I communicated with him on phone calls before he started telling me his own story about when he wanted to join, he told me everything to do, then I made up my mind and called the agent called Jude Gabriel and he told me everything to do, and I was initiated, surprisely I was given my benefit of being a new member of the great illuminati brotherhood I was so happy,For those of you trying to join this organization this is your opportunity for you to join CONTACT MR Jude Gabriel call (2349010175450 or WhatsApp him 2349010175450 or email: illuminatiworldofsociety1@gmail.com
Patricia Lovick
How To Recover Your Bitcoin Without Falling Victim To Scams: A Testimony Experience With Capital Crypto Recover Services, Contact Telegram: @Capitalcryptorecover
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Philip Evans
A Personal Review Of How a Love Spell caster helped me return my partner back to me with a love spell, and Reunited us after separation.
I’m thrilled to share my incredible experience with Dr Jakuta, a powerful spell caster 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 Dr Jakuta, 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 Dr Jakuta at doctorjakutaspellcaster24@gmail. com or WhatsApp him on +2349161779461
jenny gram
Hello everyone, I was browsing the internet and I saw a lot of wrong quote concerning the Illuminati society, I felt bad about it, I want to let you know few things about the Illuminati society. first, I join the Illuminati society through the help of an agent someone introduced me to online, after years of determination to be a member. being a member of the Illuminatiyour wealth is guarantee, you will be protected, fame, power influence e.t.c all these they will give you. one thing I want to correct is that the illuminati don’t pay member any salary, if you are newly initiated they will give you the seed of wealth and bless you with wisdom, power, influence e.t.c you need to be successful the seed of wealth is the only money the illuminati society give to their member, with this you can start anything with the money and you will be successful. another thing is that the society have special blessing for politicians and superstars. being an illuminati member is a personal decision, the society don’t force or beg people to join them. I joined because I want to, nobody force me and am very happy to be a member today because they have contributed greatly to my life by making me one of the leading business woman in the world. if you are interested in joining the illuminati society contact agent sir Aydin Baris on whatspp +2349137776977 he was the one that helped me, or email us illuminaticultofrich666@gmail.com …………Hello everyone, I was browsing the internet and I saw a lot of wrong quote concerning the Illuminati society, I felt bad about it, I want to let you know few things about the Illuminati society. first, I join the Illuminati society through the help of an agent someone introduced me to online, after years of determination to be a member. being a member of the Illuminatiyour wealth is guarantee, you will be protected, fame, power influence e.t.c all these they will give you. one thing I want to correct is that the illuminati don’t pay member any salary, if you are newly initiated they will give you the seed of wealth and bless you with wisdom, power, influence e.t.c you need to be successful the seed of wealth is the only money the illuminati society give to their member, with this you can start anything with the money and you will be successful. another thing is that the society have special blessing for politicians and superstars. being an illuminati member is a personal decision, the society don’t force or beg people to join them. I joined because I want to, nobody force me and am very happy to be a member today because they have contributed greatly to my life by making me one of the leading business woman in the world. if you are interested in joining the illuminati society contact agent sir Aydin Baris on whatspp +2349137776977 he was the one that helped me, or email us illuminaticultofrich666@gmail.com …………
jenny gram
Hello everyone, I was browsing the internet and I saw a lot of wrong quote concerning the Illuminati society, I felt bad about it, I want to let you know few things about the Illuminati society. first, I join the Illuminati society through the help of an agent someone introduced me to online, after years of determination to be a member. being a member of the Illuminatiyour wealth is guarantee, you will be protected, fame, power influence e.t.c all these they will give you. one thing I want to correct is that the illuminati don’t pay member any salary, if you are newly initiated they will give you the seed of wealth and bless you with wisdom, power, influence e.t.c you need to be successful the seed of wealth is the only money the illuminati society give to their member, with this you can start anything with the money and you will be successful. another thing is that the society have special blessing for politicians and superstars. being an illuminati member is a personal decision, the society don’t force or beg people to join them. I joined because I want to, nobody force me and am very happy to be a member today because they have contributed greatly to my life by making me one of the leading business woman in the world. if you are interested in joining the illuminati society contact agent sir Aydin Baris on whatspp +2349137776977 he was the one that helped me, or email us illuminaticultofrich666@gmail.com …………
Keith Wilson
ETHEREUM RECOVERY ASSISTANCE: CAPITAL CRYPTO RECOVER HELPED ME RECOVER $98,000 WORTH OF LOST ETH
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Philip Evans
A Personal Review Of How a Love Spell caster helped me return my partner back to me with a love spell, and Reunited us after separation.
I’m thrilled to share my incredible experience with Dr Jakuta, a powerful spell caster 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 Dr Jakuta, 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 Dr Jakuta at doctorjakutaspellcaster24@gmail. com or WhatsApp him on +2349161779461
Regina Carter
I am amazed by Dr Ogbo herbal remedy. I Have had herpes for over 6 years with frequent outbreaks. Sometimes average 2-3 times per month. Before one breakout could end, the next would begin. Nothing has helped me. I came online in search for a possible way to see how I can fight this virus so I found Dr Ogbo here online after seeing a lot of testimonies of how he cured herpes and other diseases with natural herbs so I decided to give it a try, I only took his remedy for two weeks and I was completely cured. I recommend Dr Ogbo remedy to anyone suffering from herpes that wants to be completely cured too. email: drogboherbalhome@gmail.com and for quick response Message him on his whatsapp number +2348110968476
Dexter Berger
Praise be to the incredible 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. You can reach him by email: lordmeduzatemple@hotmail.com or check out his website via ( lordmeduzatemple.com ) for more information. Stay blessed and know you’re in good hands with Lord Meduza.
Megan Taylor
Hi, I acquired my first home at the beginning of the year. To some, lottery players appear ridiculous, while we view it as a chance for an improved future. I’m known as Megan Taylor and I have played the lottery for over ten years, yet I haven’t won anything substantial. In my pursuit of understanding how to win better, I was advised to consult Lord Meduza, the priest who provided me with the precise 6 numbers that helped me secure the Mega Millions jackpot of $277 million after using his spell powers and following his guidance.. Lord Meduza services is top notch, and I believe your dreams aren’t finished unless you decide they are. Contact Meduza the priest and he will assist you in realizing your aspirations.
Email: lordmeduzatemple@hotmail.com
Whats App: +1 807 798 3042
Website: lordmeduzatemple.com
Megan Taylor
Hi, I acquired my first home at the beginning of the year. To some, lottery players appear ridiculous, while we view it as a chance for an improved future. I’m known as Megan Taylor and I have played the lottery for over ten years, yet I haven’t won anything substantial. In my pursuit of understanding how to win better, I was advised to consult Lord Meduza, the priest who provided me with the precise 6 numbers that helped me secure the Mega Millions jackpot of $277 million after using his spell powers and following his guidance.. Lord Meduza services is top notch, and I believe your dreams aren’t finished unless you decide they are. Contact Meduza the priest and he will assist you in realizing your aspirations.
Email: lordmeduzatemple@hotmail.com
Whats App: +1 807 798 3042
Website: lordmeduzatemple.com
Megan Taylor
Hi, I acquired my first home at the beginning of the year. To some, lottery players appear ridiculous, while we view it as a chance for an improved future. I’m known as Megan Taylor and I have played the lottery for over ten years, yet I haven’t won anything substantial. In my pursuit of understanding how to win better, I was advised to consult Lord Meduza, the priest who provided me with the precise 6 numbers that helped me secure the Mega Millions jackpot of $277 million after using his spell powers and following his guidance. Lord Meduza services is top notch, and I believe your dreams aren’t finished unless you decide they are. Contact Meduza the priest and he will assist you in realizing your aspirations.
Email: lordmeduzatemple@hotmail.com
Whats App: +1 807 798 3042.
Website: lordmeduzatemple.com
Megan Taylor
Hi, I acquired my first home at the beginning of the year. To some, lottery players appear ridiculous, while we view it as a chance for an improved future. I’m known as Megan Taylor and I have played the lottery for over ten years, yet I haven’t won anything substantial. In my pursuit of understanding how to win better, I was advised to consult Lord Meduza, the priest who provided me with the precise 6 numbers that helped me secure the Mega Millions jackpot of $277 million after using his spell powers and following his guidance. Lord Meduza services is top notch, and I believe your dreams aren’t finished unless you decide they are. Contact Meduza the priest and he will assist you in realizing your aspirations.
Email: lordmeduzatemple@hotmail.com
Whats App: +1 807 798 3042.
Website: lordmeduzatemple.com
Eric
I want to thank a very kind and powerful psychic who brought back my ex wife who left me she told me she wants to be alone and left me and the kids I was devastated everyday i keep thinking how i would live without her one day i was online when I found Priest Ade website then i contacted him, He told me not to worry she will be back in 24hours after he cast his love spell i had some doubt though but i just did all he instructed and had a little faith, To my greatest surprise the next day she was back to me and the family she told me she was sad because she couldn’t get pregnant since we have been trying but Priest Ade also solved that now she is 3 weeks pregnant I’m so excited i highly recommend him he is powerful and can help you too with different problems email him now at ancientspiritspellcast@gmail.com And his website
ancientspellcast.wordpress.com
WhatsApp +2347070518515
Eric
I want to thank a very kind and powerful psychic who brought back my ex wife who left me she told me she wants to be alone and left me and the kids I was devastated everyday i keep thinking how i would live without her one day i was online when I found Priest Ade website then i contacted him, He told me not to worry she will be back in 24hours after he cast his love spell i had some doubt though but i just did all he instructed and had a little faith, To my greatest surprise the next day she was back to me and the family she told me she was sad because she couldn’t get pregnant since we have been trying but Priest Ade also solved that now she is 3 weeks pregnant I’m so excited i highly recommend him he is powerful and can help you too with different problems email him now at ancientspiritspellcast@gmail.com And his website
ancientspellcast.wordpress.com
WhatsApp +2347070518515
Eric
I want to thank a very kind and powerful psychic who brought back my ex wife who left me she told me she wants to be alone and left me and the kids I was devastated everyday i keep thinking how i would live without her one day i was online when I found Priest Ade website then i contacted him, He told me not to worry she will be back in 24hours after he cast his love spell i had some doubt though but i just did all he instructed and had a little faith, To my greatest surprise the next day she was back to me and the family she told me she was sad because she couldn’t get pregnant since we have been trying but Priest Ade also solved that now she is 3 weeks pregnant I’m so excited i highly recommend him he is powerful and can help you too with different problems email him now at ancientspiritspellcast@gmail.com And his website
ancientspellcast.wordpress.com
WhatsApp +2347070518515
Eric
I want to thank a very kind and powerful psychic who brought back my ex wife who left me she told me she wants to be alone and left me and the kids I was devastated everyday i keep thinking how i would live without her one day i was online when I found Priest Ade website then i contacted him, He told me not to worry she will be back in 24hours after he cast his love spell i had some doubt though but i just did all he instructed and had a little faith, To my greatest surprise the next day she was back to me and the family she told me she was sad because she couldn’t get pregnant since we have been trying but Priest Ade also solved that now she is 3 weeks pregnant I’m so excited i highly recommend him he is powerful and can help you too with different problems email him now at ancientspiritspellcast@gmail.com And his website
ancientspellcast.wordpress.com
WhatsApp +2347070518515
Patricia Walker
A testimony that I will tell everyone to hear. i have been married for 6 years and on the seventh year of my marriage, another woman had a spell to take my lover away from me and my husband left me and the kids and we have suffered for 2 years until i saw a post where this man DR OGEDEGBE have helped someone and i decided to give him a try to help me bring my lovely Husband home, and believe me i just send my picture to him and that of my husband and after 1 week as he have told me, i saw a car drove into the house and behold it was my husband and he have come to me and the kids and that is why i am happy to make every one of you in same similar problem to meet with this man and have your lover back to yourself His email: dr.ogedegbe6@gmail.com you can also contact him on whatsapp via +2349121737553 thank so much DR OGEDEGBE
Patricia Walker
A testimony that I will tell everyone to hear. i have been married for 6 years and on the seventh year of my marriage, another woman had a spell to take my lover away from me and my husband left me and the kids and we have suffered for 2 years until i saw a post where this man DR OGEDEGBE have helped someone and i decided to give him a try to help me bring my lovely Husband home, and believe me i just send my picture to him and that of my husband and after 1 week as he have told me, i saw a car drove into the house and behold it was my husband and he have come to me and the kids and that is why i am happy to make every one of you in same similar problem to meet with this man and have your lover back to yourself His email: dr.ogedegbe6@gmail.com you can also contact him on whatsapp via +2349121737553 thank so much DR OGEDEGBE
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