“You’re in a Cult. Call Your Dad!”

“You’re in a Cult. Call Your Dad!”

Look. Listen. Look and listen…if you’re a murderino surviving solely on podcasts like “My Favorite Murder” then you already know where this comes from. If not, I apologize if my true crime comedy references or morbid sense of humor offends you. Actually, I don’t. As Karen says at every live show, “if you’re offended by this then we welcome you to go ahead and get the fuck out.” I’m going to take this moment to second that because I’m done trying to please everyone. From failed plans to extreme disappointment to bad bloodwork to seizures to illness to the Disney trip from hell…every time I thought I had things under control, something else struck! I have been so checked out from everything because I have been barely able to keep my head above water, but now I’m dipping my toes in again after a while on the shore.  I want to genuinely thank EVERY SINGLE PERSON who has reached out to me – there’s no way to show how much this meant to me, even though you likely did not hear back from me. Sincerely, thank you for reaching out and you all know who you are! ❤

 

I’ve been confused, grieving, and learning to live in an upside-down world for the past 3.5 years. But mostly, I have wanted to help other families after the horror we lived through trying to get an accurate diagnosis for Jack. So I tried blocking out all the trauma by keeping busy. I know how lucky I am in the world of the medically complex because Jack has a treatment that works well and allows him a good quality of life. I try to show the positive sides of Jack’s life while also being transparent about our struggles. However, I don’t think I’ve done a good enough job illustrating the struggles, especially the emotional and physical toll that Jack’s care takes on me (and his dad) daily. I know everyone means so well, but I can’t tell you the amount of times that I have received a message from a mom on social who tells me, “we were hoping for a PDE diagnosis after we found your page instead of ___”. I get that sentiment, believe me. However, my life has been indelibly changed since epilepsy and rare disorders entered and it is far from simple and quite often even far from enjoyable. I’m grateful for every minute, though.

 

My drive to help other families seemed to be leading me to advocacy work, and even a move to DC. Since Jack’s birth, everything seems so dire and I’m often jumping into things with both feet and not much forethought if I think it will help other kiddos and their families. Unfortunately, I was doing this at the detriment of own complex kiddo…and he really struggled during my travel in the fall. I am so ashamed that I didn’t see it sooner, but my poor buddy really needed more from me than I was giving. This led to tough decisions, but I’m so thrilled that since I haven’t been traveling and have been home for Jack, he is doing so much better! He really struggles when he doesn’t have a routine and does not like change of any kind (or Disney World, but that’s a whole different post).

 

Anyway, in my need for a distraction from metabolic disorders & rare disease bullshit, I found Karen Kilgariff & Georgia Hardstark…and their podcast, My Favorite Murder (and of course their book, Stay Sexy & Don’t Get Murdered). I’m obsessed with this true crime duo and everything they do. I’m not in the least surprised that when I listened to episode 176 about the book that I burst into tears as Karen read this passage about living with her mother’s devastating diagnosis of Alzheimer’s. I immediately felt that Karen had released this indescribable feeling inside me that I had been holding in and unable to pin down – a feeling of living in a slowly moving desperate situation and never knowing how hard you should fight this time. Maybe I’m being lazy by not using my own words but haven’t had any of my own lately and this is so powerful that I want to share it with you all!

It’s hard to follow that passage so I’m just going to say thanks again for all the support and I’m sorry I haven’t been able to find the words I needed to communicate in the past few months. I got in too deep by wanting to drive change for children (and their families) living with devastating and complex diagnoses and it was almost detrimental to my own family. I was so naive in thinking that everyone had the same drive to help people as I did. Unfortunately, I only found My Favorite Murder about 6 months ago so I didn’t yet know the signs that indicate you might be in a cult (joking – this is all light hearted). But, now I think that maybe too much of anything, even a good thing, is basically cult-like activity. I’m so happy to be “out” and trying to find peace focusing on my family and moving forward. Thanks for being the best always, friends!! If you don’t know Jack’s story or if you want to hear details straight from the horse’s mouth (ME) then check out the latest episode of the Mimosas with Moms Podcast (released today, Jan 20th, 2020)! It’s Birth Defects Prevention Month and I’m so honored that Abbey asked me to be on her awesome pod!

I can’t end without an SSDGM! 

3 Years Later and I’m Finally Ready

I cannot believe that Jack Jack will be three years old in just one week. Jack Clifford Trotter, the medical mystery of a baby who wasn’t supposed to live past infancy, is living AND thriving in a world that was not made for him. This kid’s past three years of life has lit a fire inside me that will burn until the world is accessible and accepting by nature and not as an afterthought. HOWEVER, for a very long time in the beginning of this wild rare disease ride, I was not ready to advocate outside of Jack’s hospital room or connect with other families experiencing similar situations. I was devastated, heartbroken, and just plain pissed off. Why my family and why does my baby have to suffer and die? It’s okay to be angry, upset, and sad.  I am here today to speak to all, but especially those who have felt this way or are feeling it now. IT IS OKAY TO NOT BE READY!!!!!!!!! One thing that I have learned is that I can come on strong. Thus, if you are new to our journey then it may seem like I am this hardcore advocate full of confidence and vigor. You could not describe me this way 3 year ago. I was just —thrown into a situation that I had no idea how to navigate or understand.

I have been waiting for 3 long years to view the photos that my mom took of Jack’s delivery and first few weeks of life. My mom is a lifelong photographer by hobby & talent and I really wanted some special photos in the delivery room when Jack was born because he is my second and I desperately wanted a much different experience than I had when my daughter was born. Rowan, Jack’s older sister, was whisked away to NICU immediately after birth because she aspirated meconium and was experiencing respiratory distress. You know how they say be careful what you wish for? All I wished for (aloud and in silence) was a “normal” birth experience with my new baby in my hospital room, nursing him and laying him in that clear bassinet all hospitals use. I got that experience, but three days later Jack was in a helicopter being life-flighted and having uncontrollable seizures.

As many already know, Jack was born seemingly healthy. I cannot place enough emphasis on the word SEEMINGLY because as I look at the photos I am sharing here, I can see the facial pulling to one side that soon became the signature of Jack’s seizures. To this day, if Jack is staring hard to one side or off into space then he is experiencing a seizure. The naivete I have cursed since the day Jack was born, I can finally be grateful for as I look as these photos. We were so happy. I can see a newborn not as focused as he should be and I can see seizure activity, BUT I can also see a family (two parents, a big sister, grandparents, aunts and uncles, and great-grandparents) completely smitten and in love with the new life in their presence. For a brief moment, time stood still and life was as it should be. Everyone was in awe and full of love, the true essence of life. These photos are proof of that and proof of how loved Jack has been since the day he entered the world.

As I mentioned, Jack was very sick very soon after his birth. We had three beautifully blissful days with our new son before the rug was pulled out from under us. This meant a lot of things, but one of them is that I was never able to view the photos of Jack’s birth before we received his devastating MISdiagnosis. I remember so clearly (as I was still so angry and confused) when my mom gave me a disc full of Jack’s birth photos and I told her that she might as well throw it away because I would never be able to look at those joyous after my son died. And I have never viewed them because the thought of them has always caused me pain. That is, until today when I took the disc from where I had it hidden and popped it into my computer because I was finally ready.

I see so much when I look at these photos. I see love, joy, excitement, exhaustion, apprehension, and above all else I see a family. I also see a strong mom; she is exhausted, but relieved because she thinks the hard part is over. She is me and she is not me. I have hated myself for so long for doing this to Jack, for giving him a rare genetic disorder that makes him have seizures, developmental delays, painful tests/medications, and strict restrictions. Today is the first time I have ever wanted to revisit the day that our lives changed forever. This has taken me three full years of learning, growing, and grieving. I want all caregivers, patients, and advocates to know that it is 100% OKAY if you are not ready to put yourselves out there. I had no idea what to do, where to turn, and how to survive in this world of  rare disease and disability in the beginning. I still don’t , really. I still take it day by day, but I also really feel like I have found my calling now with rare disease advocacy.

I hope that each person reading this just knows that YOU are not alone. I did feel alone for a long time, but I also wasn’t ready to embrace the reality of my son’s rare disease and what that would mean our for our family. It’s all okay, no matter what you feel. I get so many messages from people asking, “how do you do it,” and the absolute truth is that I didn’t do anything until I was ready. I started so slow with sharing our journey and trying to learn more; the advocacy work you see me doing now is new. I only started feeling ready to get out there, advocate, and learn more earlier this year. I had no clue my passion would lead me down the road it has, but I’m so glad that it has. However, as I listen to our community and hear what you all are expressing, I also feel that is important to circle back to the beginning and remind everyone that it is OKAY TO NOT BE READY!!

I want to share these raw and incredibly special photos with you all because I am finally ready. This is the first time I am viewing them and experiencing the miracle of my son all over again. Happy 3 years to my amazing boy, Jack Jack!!! You will move mountains, my man. FAIR WARNING: some of these are quite literally birth photos, but no body parts exposed. ❤

Believe Mothers!

I will never forget the many times I was comforted by someone when I just needed them to believe me regarding my concerns about Jack. It’s time to start seeing mothers as strong women, not just sensitive women. As soon as a woman becomes a mother, it seems she will no longer be taken seriously regarding her child. She will be considered emotional and therefore not to be trusted. In my experience, especially with Jack, people seem to try and “fix” mothers who are showing concern for their children instead of actually listening and believing them. The stigma of the overly emotional and therefore untrustworthy mother has been such a difficult one to break apart on my journey with Jack. The only thing that broke this stigma was me being right about Jack so many times that doctors had to start trusting me. The heightened emotions and overt awareness of mothers make us even more observant and reliable. 

Yet, mothers carry around a stigma of implied emotional imbalance. This way of thinking is incredibly damaging and truthfully dangerous because it leads everyone, especially doctors, to dismiss a mother’s legitimate concerns.  I can speak from my own raw experience on this topic because I watched my newborn son have seizures for almost 24-hours and I couldn’t get anyone to take me seriously. Thus, I doubted myself and didn’t seek the help he needed until it was too late and a brain injury occurred, leaving us with a lifetime of “what if”. What if ANYONE had chosen to listen to me, to believe me.

My son, Jack, was born full term via my second vaginal delivery. We were discharged on time and excited to join Jack’s big sister at home. However, after just one day at home, I noticed that Jack was having some strange facial expressions, eye movements, and twitching in his extremities. It became more concerning when he started crying, and I mean screaming and crying like he was hurting, and then stopped eating. The crying episode lasted roughly 15 hours (no joke!), but when I raised concerns with Jack’s pediatrician about feeling like something just wasn’t right, I was dismissed and told that he was just colicky or experiencing reflux.

We went in to ped’s office and I will never forget how the nurse, my family’s nurse, took Jack out of my arms and said, “what’s wrong with you? Don’t you remember how to hold and soothe a baby?” I know she was joking and she was pretty to quick to hand the screaming/twitching Jack back to me, but that preyed on my worst insecurities: that I was making a big deal out of nothing and that I was the problem. It was not just Jack’s pediatrician who dismissed my concerns and tried to give me a hug instead. My own mother tried to soothe my fears instead of encouraging action when it seemed something wasn’t right with Jack. I took Jack to my mom and she insisted that he just needed a bath. She kept trying to soothe me and I kept feeling like I was insane because I saw that something serious was going on with son. I was so scared, but at that point, my son’s pediatrician, my mom, and my husband had all dismissed my concerns. If only someone would have chosen to believe me.  

Just as I feared, my son has been experiencing life-threatening seizure activity due to a rare genetic disorder that was discovered much later. I waited to long to seek help at a more acute level and he ended up in status epilepticus, requiring critical and life-saving care from a pediatric life-flight team and PICU team.  (Status epilepticus is a medical emergency associated with significant morbidity and mortality. SE is defined as a continuous seizure lasting more than 30 min, or two or more seizures without full recovery of consciousness between any of them.) My son’s disorder wasn’t caught in time to prevent brain damage, but I will always wonder “what if” I had just believed in myself more.

While so much of our early experiences with Jack’s rare disease are absolutely horrific, I am so grateful that his condition was caught through genetic testing and he has a really great quality of life now. However, we almost lost him. There were many in opportunities during Jack’s newborn stage for his rare disease to be caught, yet it was missed time and time again. Jack’s brain was beginning to atrophy, seizures were growing worse, and yet I would still be begging my loved ones and my son’s doctor to believe me I said something wasn’t right with my son. The people around me weren’t even looking at the baby in my arms, but instead trying to comfort and soothe me because they assumed I was just being oversensitive. While I was often appalled by the responses I was receiving, they still allowed doubt to creep in and take root enough to prevent me from taking immediate action to help my son in many instances. These are people that I love and trust, people who love and respect me, but the oversensitive mother is such a well-established stigma that even my loved ones couldn’t see past it at times. I know there are so many moms who can relate and who have been silenced, dismissed, and even shamed when they attempted to advocate for their child. This is why we must believe mothers!!

My own mom will say to this day that she wishes she would have never wasted the time trying to soothe me and convince me that Jack was okay because he truly was not and even she could tell something was wrong at the time. She will admit to not wanting to upset me and that’s why she tried to quell all my worst fears. I think many people would have done the same. Not wanting to jump on the oversensitive bandwagon, my mom tried to fix the situation the way she had been taught. I say we replace soothing new mothers to advocating for them and beside them. How do you do this? You just have to listen to them and believe them. This is post is the beginning of my Newborn Screening Saves Lives series. What if more doctors encouraged mothers to be an active part of newborn screening? That would have made all the difference for my family. One heel prick and a few minutes examining a newborn isn’t adequate for newborn screening. Report what you see, take videos, and never EVER let anyone make you feel ashamed for advocating for you child. If you feel like something is wrong with your newborn and you’re not being taken seriously, take your kiddo to the nearest children’s hospital ER and have no shame!

Newborn Screening legislation is something that I am so excited to share about/advocate for–please contact me if you have any questions and stay tuned for more to come! 

Believe Mothers.PNG–>This photo was taken after Jack was (mis)diagnosed with Mitochondrial Disease and we were told he wouldn’t live much longer. He was discharged on palliative care and my dear friend did a little family photo shoot for us. I though it would be the only one we would ever have. NEWBORN SCREENING SHOULD CHANGE AND SAVE LIVES. This should have never happened and I work for the rest of my life to prevent such heartache and confusion from happening to another family!

 

 

 

Metabolic Mama Origin Story

 

inborn-errors-of-metabolism

What if I told you that I felt like I have been in a fog for the past few years? If you have a child with medical needs then you may feel similar, hell even if you don’t. I think I have let the intense severity of what we’ve been through take hold of me without inviting it to. I am proud of the way I have taken care of my son, but I haven’t nurtured my family. I feel like I can barely take care of myself most days, but luckily that comes as a form of habit. I thought sharing our journey was the key to healing, but recently it has become more clear that I need to be an active part of my own healing so that my family will feel whole again. As independent as my daughter and husband are, they still look to me for emotional guidance in our day to day lives. That has been such a difficult and overwhelming load to carry as I try to process my own feelings and navigate life as a special needs parent. But as this fog lifts and life carries on, I realize that it is time to take control instead of letting my son’s metabolic disorder continue to run my life.     {Metabolic Mama Origin Story….dun dun dun!}
You already know that Jack’s metabolic disorder runs our life (haha), even though we are able to control it fairly well. Life has gotten a little less difficult as Jack has gotten older, learned to eat on his own, and required less and less of his metabolic formula. These are all good things, but I am ill prepared for a life making metabolically specific cuisine for toddlers. I am BARELY domesticated. I hate the kitchen and I loathe cooking (I know, this should be fun, right?). As an adult, I still don’t eat regular meals; I do sort of a grab and go, whatever I can eat on the run. So we can definitely say that I am at a disadvantage when it comes to cooking, meal prep, etc. because I already do not want to be in the kitchen. I like Cook for Love’s motto of, “you might not love to cook, but sometimes you need to cook for love.” ←that needs to be me. It’s a new year and I have an awesome new planner so here I am committing to myself and my family in hopes that I can break these bad habits that trauma has created in our lives.
Chaos has reigned supreme too long in my life. Granted, it is a chaos of my creating. I was used to the high-stress life that revolved around recurring hospitalizations for my son. However, Jack is 2.5-years-old now and he has not needed to be inpatient since April…and whoa mama that is huge! There are a few reasons for this, but the main reason is that I have finally learned (and grown confident enough) to effectively take care of Jack at home when he is sick (woo hoo!). My current motto on hospitalizations is that as long as there is enough Zofran, we can make it at home! So many doctors prepared me for absolute despair and I have been living day to day since Jack was born. I think this is ultimately what I mean by feeling like I am in a fog; I can’t see anything up ahead because the fog is too thick so I just take it day by day. My job as a metabolic mama (aka mom to a kiddo with a metabolic disorder) is too important to let chaos reign any longer. The overall function of Jack’s brain depends on his diet and I know all too well what can happen when his metabolism is out of control. This is my circus and these are my monkeys so it’s time to tame the chaos for the benefit and health of my family.
This metabolic mama is trying so hard to establish some new (and improved) habits so forgive the cheesy “new year, new you” feel if you’re getting that. This is what’s up: I am tired and teaching yourself new behaviors/habits is incredibly hard. It just so happens to be a new year so I’m going to dedicate myself fully to these new habits so they will (hopefully) become a long term lifestyle. I decided it would be important not only to incorporate my new journey with meal planning and feeding a kiddo with a metabolic disorder, but also feeding a ridiculously picky eater (aka Rowan). Jack’s hospitalizations, diagnoses, and overall difficult start to life has also taken a huge toll on Rowan. While you might not be able to tell from looking at her big smiling face, her already minimalistic eating habits have turned into almost non existent ones over the past 2 years. In addition, Rowan has been very sick over the holidays, going on two full weeks now, and I know that if she had better eating habits then I could keep her healthier. That is not to say that her eating habits have caused her sickness, more so that this illness has put into perspective how poorly she eats. Thus, my goals with this new metabolic mama journey will not only cater to Jack, but also Rowan. I’m excited to learn, grow, and share what I find along the way because this is going to be an enormous challenge for me.
Did I mention that I hate cooking and all things kitchen that don’t come out of a Keurig and into my coffee mug? My feral tendencies in the kitchen are going to make me work hard for success on this one. I think the full weight of Jack’s disorder and what it will mean long term hasn’t set in until more recently. As most of you are aware, Jack has a gtube and a disgusting special Lysine & Tryptophan free formula that can be classified more as medicine than formula. When 2018 began, Jack could eat very little by mouth due to sensory issues and protein constraints. As the year has progressed, Jack’s RD was able to add more natural protein to his diet and less formula. He can currently have 20g of protein per day so most of the meals I share will be low protein. However, I do need some good high protein options for Rowan…they basically need opposite nutrition so this should be fun! I want to empower other metabolic mamas/medical mamas/special needs mamas (whatever you want to call us, just f*cking be kind when you do), to take control of whatever they need to in order to give their kiddo(s) the best quality of life. For me right now, that means taking control of nutrition and diet in my household. One of my main goals in sharing more of the metabolic side of our journey is transparency. I want to be honest about what works and what doesn’t work each week, versus snapping a bunch of cute pics and posting a recipe. I hope it works, I hope you like it, I hope it’s helpful, so so many hopes! Thanks for reading & Happy New Year, friends!
jackngtube
I was able to be creative with tube feeds so now I have to tackle PO feeds!
jack eating today
And this is how Jack feels about food today! He’s pretty good for his tube feeds, but he doesn’t like being messed with so it’s best to approach when he’s sleepy!
IMG-3972
The upside to Jack’s metabolic disorder is that we got to trade all these meds for one med + the special metabolic formula!