“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. ❤

My Plan B Perspective

Recently I had an experience that I don’t necessarily want to share but feel like it may offer some perspective during this difficult time for women in our nation. As most of you know, Jack Jack has a genetic disorder called Pyridoxine Dependent Epilepsy (PDE). It is autosomal recessive, meaning that there are two copies of the mutated ALDH7A1 gene (one from me and one from his father) that were passed on to Jack unknowingly and we have a 25% of having a child with PDE with each pregnancy. While those numbers are not detrimental by any means, they are heavy for me. Jack is such an incredible gift in my life, but the reality of his inherited metabolic disorder is brutal and as anyone in the medically complex community will tell you, NOTHING is a given. Why am I telling you all of this? Because I want to share an experience, but I do not want to turn my platform for advocacy into a nasty debate or something negative. Please keep an open mind and heart as you read.

 

I don’t want to crawl into anymore hospital cribs not knowing how many opportunities I will have to be near my sick and seizing newborn. I don’t ever want to feel weird rhythmic movement in my womb again, too ignorant to know what that feeling was before Jack. Once Jack’s disorder was discovered and discussed, so many weird things made more sense all the sudden, like those movements for example (see below).

From NORD: “Patients with the classic neonatal PDE experience seizures soon after           birth. In retrospect, many mothers describe rhythmic movements in the uterus                   (womb) that may start in the late second trimester and which likely represent fetal             seizures.”

Needless to say, Jack’s birth was traumatic for me and my entire family. We love him more than anything in the world and wouldn’t change a thing about Jack Jack, but his care is catastrophically expensive (I won’t get into insurance nonsense b/c that’s a whole other post itself). Additionally, no two patients are the same and while Jack now has a good quality of life, health is not guaranteed if we decided to have another child. PDE is very serious and must be treated as soon as possible; many children do survive a full pregnancy. Okay, so now you’re likely starting to figure out where this is going, but I promise that I won’t get too political.

 

Recently I was put on two different medications for my face (an antibiotic and testosterone blocker) that mess with birth control and make it ineffective. No big deal, my husband and I were very careful…until one night when we weren’t so confident that we had been as careful as we should. I immediately stated crying, balling actuallly, because I can’t even have easy sex with my husband without these huge heavy clouds looming overhead. Sexy, right? Well I called my OBGYN to see what the best option would be and she recommended just taking Pan B since I was 99.9% sure that I was ovulating and didn’t want to take any unnecessary chances. You can get it at any pharmacy she said. Already ashamed about the errand, I went to CVS in hopes of a quick grab and go and the lady behind the counter made me feel like the dirtiest thing she had ever seen when I asked her for it. I won’t even go into details b/c I was so annoyed that I left and went across the street to my usual pharmacy. I had initially thought not to use my usual conservative small-town pharmacy because I just didn’t want to deal with any feedback about my purchase. Sometimes people surprise you! I cannot sing the praises of my pharmacy, and the tech who is ALWAYS kind to me, enough. I was so happy to see Hope (perfect name such a wonderful lady) and she could tell I was a little uncomfortable asking for Plan B, but she also knows allllll about Jack because she used to have special order large quantities of liquid phenobarbital for me. She quickly and quietly grabbed what I needed, put it in a bag, and rang me up before the 3 other customers even knew what happened. What a beautiful soul! CHOOSE TO BE KIND because you have no idea what someone is going through.

 

While I feel confident that I could take care of another child with PDE, I am not confident this is realistic for our family. There are many hurdles we face each day to make sure that PDE doesn’t control our lives. I imagine that many families who have children with genetic disorders have extensive discussions with their specialists, although sometimes the answers are delivered in the most inhumane of ways. I asked our genetic counselor what we should do if we wanted to have another child and she recommended IVF with PGD, which is not 100% guarantee either and is incredibly cost prohibitive. So I asked my OBGYN what she would recommend if we wanted to have another child and she said we should just get pregnant, do genetic testing as early as possible, and terminate if the baby has PDE. My options are limited and bleak. Additionally, lawmakers in my state are pushing to make the latter option illegal…making this option seem criminal and wrong, which I don’t agree with at all. If I got pregnant and the baby had PDE, I don’t know what I would choose, but I would like the respect and security to know that it is MY DECISION.

 

My heart and mind are so open and I even dream of adopting a child with different needs now that I am more confident caring for kiddos with complex needs. But, we are still in the midst of barely covering all of Jack’s expenses. Jack has been doing 6 therapies per week for two years now and while insurance covers some of this, we pick up the majority. Early intervention is paramount for kiddos with PDE so this is an essential part of Jack’s life that we don’t mind sacrificing for, but again it is a huge financial (among other things) commitment. I also dream of helping kids like Jack and making sure families don’t suffer with misdiagnoses, feeling powerless, etc. like we did. I have many goals to accomplish with Newborn Screening and Rare Disease Advocacy, so I know that this was not the right time to even think about another child. I am so grateful that Plan B was an option for me and I want you to know that it’s not shameful to use it. This is also just ONE reason a woman may need to explore her options, but there are so many other stories and so many other perspectives so I urge everyone to keep an open mind! I stand with you and support you no matter what decisions you make about your body!

Please feel free to message me if you have any questions about my experience with it. I will post some photos of it below as well in case any one has ever wondered what it does and doesn’t do.

This is sweet baby Jack at 5 days old recovering from SE (status epilepticus) and we had no idea what we were in for!

This is what Jack’s seizures looked to begin with…just blank staring off. This was such a scary time when it should have been joyful!

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!

 

 

 

KILL BILL VOL. 4

unnamedIf you’re reading this, hopefully you have also seen Quentin Tarantino’s Kill Bill so you don’t think I’m a psychopath (and maybe you will anyway–I’m not, just a mom on a mission). If you haven’t seen it, let’s just say that Uma Thurman is a badass rise-from-the ashes and take no nonsense kind of gal. In the movies (Kill Bill Vol. 1-3), Bill tries and thinks he succeeds in killing Uma’a character, but she comes back smarter, more determined, and stronger than ever! Kill Bill Vol. 4 doesn’t stray from any of these ideals so I hope you enjoy my way of turning a terrible situation into something I can both laugh at and learn from. It is hard to separate myself from the anger and pain that I felt during this event because those feelings haven’t gone away. But I am choosing to take control of the story by talking about it and also laughing at it so the villain (clearly Bill) no longer holds any power of me.

Throughout Jack’s first six months of hospitalizations, he had over 10 EEGs because his epilepsy etiology was such a mystery. I became pretty comfortable taking care of a baby with dozens of wires + a heavy box that connected them coming out of his head. After the first 3, I had a system after the take off. The sticky glue stuff the techs use to make the leads stay is so hard to get out of hair and off the face! The EEGs techs were always so wonderful and would take their time trying to get the leads and glue off Jack’s head and out of his hair. It took a little while as you can imagine, especially since Jack did have some hair and his EEGs always stayed on 48-72 hours. The process was clear: when neuro said that the EEG could come off and put the order in, the nurse would call down to the EEG techs. The EEGs techs ALWAYS take off the EEG (ya know, because it’s literally their job). Unfortunately, this is where you meet Bill.

During Jack’s worst hospitalization ever, he was in the PICU and had a nurse named Bill. We were likely going to leave PICU and move to the neuro floor on this particular day and we were over the moon. Unless Jack needed help breathing, I hated being in PICU because the nurses were not as familiar with seizures as the neuro nurses were. Even though Jack was still having seizures, it was going to be a good day because we were leaving PICU!! –>Enter Bill. WORST DAY AND WORST MOM FAIL EVER! Jack’s team said the EEG could come off and then we could move to the floor. Woo Hoo! Except, the next thing I know Bill comes in the room in a huff and says that he is going to take Jack’s EEG off because he didn’t want to wait on the EEG team. I was still pretty new in the game, but I had a bad feeling and didn’t agree with Bill. I really thought he should wait for the tech, but I’m not a medical professional, just a scared mama, so I second guessed myself. I let it happen and I don’t know if I will ever forgive myself. In 30 seconds flat Bill ripped off an EEG that had been on my SEIZING infant son for a full 3 days! If your child has ever had an EEG then you probably want to throw up because I know did. My heart broke and fell to pieces on the floor; that has to be the reason that I didn’t speak up. I mean it happened so fast, but I should have tackled Bill…done anything to stop it!

Let me set the scene a little better. Since Jack was leaving PICU, his big sister had come to the hospital with their grandparents for a special visit. The last time Jack’s big sister had seen us, it was an emergency and Jack was being rushed to the hospital in status. Rowan was just 3.5 at the time so we really want to make this visit less frightening for her. Thus, while Bill was ripping the EEG off my son’s head, my husband was downstairs in the cafeteria taking his turn visiting with Rowan. The only saving grace is that I did not leave Jack’s side, but had decided my husband and I should take shifts visiting Rowan so Jack always had a watchful eye on him. I was utterly alone when this happened and have never felt so powerless. I silently watched someone who was supposed to be caring for my medically fragile infant inflict unnecessary pain on him, pain that would last for days. I stood there seething and wanting nothing more than to kill Bill. You can see the sores that Bill actions created below. IMG-7556 (1)SO I called my husband because I could barely think, speak, or function. Many a murder has been prevented on his watch (JUST KIDDING, but I am definitely the more outspoken & slightly unhinged one when it comes to our children). I was already planning where I should hide Bill’s body when my husband got back to the room and managed to calmly get us to the neuro floor while also telling Bill to stay the hell away from our son. Were we overreacting? I was still shaking and visibly upset. The second we got to Jack’s room on the neuro floor, there was a flood of nurses wondering what happened to his head. I didn’t want to talk about it. I was scared to implicate on of their own…what if caused other nurses to hate us or not want to take care of Jack? Snitches get stitches, right? Maybe this was the turning point, the defining day that made me forever want to speak out and speak out. One of the most amazing nurses urged me to tell her and I will be forever grateful that I didn’t stay silent about what happened. Before the day was over a legal representative was in our room and I realized that I wasn’t being an overprotective crazy mom, and that what happened to Jack was wrong!

Unpleasant testing is part of life with a serious medical condition. I can accept that and I can make my son endure them for the good of his health. BUT that does not mean that I have to stay silent and I hope no mama ever feels as helpless as I did above. I feel sad, ashamed, and sick about what happened to Jack. My only hope is that sharing this story will help other moms and their babies. It’s so important to remember that even when things are terrible, we still get to control our story. By sharing this I took Bill’s power away and I’ve made him into a sort of joke/lesson because it doesn’t hurt so bad when I approach it that way. Since our kiddos can’t advocate for themselves, we have to channel our own Uma Thurman ass-kicking selves so we can speak up and (metaphorically) KILL BILL.

Here’s a little EEG photo roundup for Epilepsy Awareness Month!! Sending love to all the warriors out there!

 

Epilepsy Awareness: Siblings Edition!

EVERYHTING.jpgIt’s a good thing that Jack’s big sister, Rowan, was already in love with butterflies and the color purple before he was born. These important symbols of epilepsy have sort of become staples for everything in our life. What color should we get is never a question; we always purple for epilepsy awareness. If it has a butterfly on it then we are definitely getting it (doesn’t really matter what it is)! Epilepsy Awareness is so important to our family, especially Jack’s big sister! This post is dedicated to ALL the special needs siblings out there. You are seen, loved, and so important to this world!rowan and jackI am a different mom than I was before Jack was born. I am not sure if this is better or worse for Rowan. I do know that it has been one of the most difficult parts of this journey for me and certainly one of the most difficult to talk about. Since the day Jack found himself in Egleston’s PICU, I have struggled to be the mom that both of my kids need. I had to jump all in to protect and fight for Jack. From the very beginning doctors were confused by Jack. He had a brain injury and was having seizures, but they didn’t know why they so they were throwing the kitchen sink at us. I had to be fully present every second to make sure one decision didn’t cost my newborn son his life. The mystery that was Jack only got deeper as time went on until one day we were faced with how to explain to our 4-year-old that her newborn brother was going to die. Through it all, I had a really hard time accepting how perfect Rowan was versus how sick Jack was…why was there no balance?? Of course this wasn’t Rowan’s fault, but I hurt for my sick boy and I didn’t understand how such cruel things can happen to children, to newborn babies. I wish I would have handled so much differently in the beginning, but mostly I wish I would have encouraged a relationship instead of trying to protect Rowan from Jack & protect Jack from Rowan.

Rowan Eliza is my oldest and the one who made me a mommy, and she is turning 6 in a month. She was 3.5 years old when Jack was born and she wanted a sister. When we told Ro that she was going to have a little brother, she called him baby Lucy and said he would be a girl, not accepting a thing we said as the truth. I would literally have people say, “I thought you were having a boy. Rowan told me you were having a little girl named Lucy”. My outgoing, gregarious, and incredibly empathetic little girl had her whole world turned upside down the day her brother was born. Instead of life with a new little brother, she got life with her grandparents while her mom and dad were hours away in the hospital with her new brother. There’s no way to protect your other child(ren) when a tragedy occurs. Jack was in status epilepticus and being life-fllighted, but Rowan was also along for the ride. She sat in the PICU waiting room for over 10 hours that first day and came back almost every day with her grandparents. Rowan was the first one to adapt to our new life when Jack came home from the hospital. Jack wasn’t the only baby having seizures and therapy appointments, Rowan’s baby dolls were also going through similar experiences. Her baby doll named Sunny even had an NG tube with the same tape as her Jacks. She would get competitive some days when I was taking care of Jack. She would walk by in her plastic princess heels ask how therapies my baby had today; of course, her baby doll always had a few more appointments than my baby (aka Jack) did. After the first several hospitalizations, it became obvious when were about to take Jack to CHOA. Rowan developed a stiff upper lip and would help me pack a bag because she knew we would be there a few days, never making me feel bad for leaving her.

ro jack 4

After we met with palliative care for the first time, it was suggested that we speak to a child life specialist about to approach this subject with Rowan. We did this in hospital one day with Rowan. The child life specialist gave Rowan this special bear that had a pouch where she could put messages she wanted to write to her brother or pictures she wanted to draw for him. I was so happy for this sweet little message bear and Rowan 100% rejected it. She would touch it, hold it, talk about it and every time I have tried to talk to her about that bear since, she still does not want to go there. It is so interesting! I feel like it is her own private revolt against the mito diagnosis and the “he’s going to die” inevitability that hung over our heads for so many months. It used to make me so sad because it felt like she was rejecting her brother, but now I am proud because it was her own way of protecting her brother (and herself maybe) by protesting against the stupid hospital bear. Rowan has always been Jack’s biggest cheerleader, but it is not easy for siblings to sit in doctor’s offices and therapy waiting rooms. You forget what they hear and what they are learning during phone calls with insurance, doctors, schedulers, etc. This is your life and they can’t escape it, just as we can’t. I got off a particularly upsetting phone call with neurology one time and Rowan asked me, “Mommy what is brain damage?” When she plays pretend, you will often overhear her saying that so and so had a genetic disorder, but does everything other kids do. I mean she is just the best despite all the pain and sadness has surrounded her for much of the past few years. Rowan’s daddy and I missed her 4th birthday because Jack was in the hospital and doing really poorly. She and my mom sat tried to eat the Barbie cake (see photo) and celebrate through the sadness. We’ve moved past all of this on the surface of course, but it still weighs so heavy on my heart and mind.

Rowan and Jack have recently developed a relationship that means so much to me thanks to the walker and Jack’s increased mobility and awareness! But, prior to this it was obvious that they didn’t know how to interact with one another once Jack’s seizures were under control and he was more aware. He is a hard kiddo to love on sometimes. Rowan wants to freely hug and kiss her little brother, but this is so overstimulating for him (even today) and he often screams, hits, and kicks her. He doesn’t like to be approached or touched without lots of warning, and even then he is likely to fight your advances. This used to hurt Rowan’s feelings so bad…”he’s pushing me away again,” she would cry. We have talked through things like this so much and I know that Rowan is wise well beyond her years. Her constant kindness and understanding always humbles me. To wrap up, I want to tell you about a little surprise that I am planning for Rowan’s 6th birthday next month AND I will be forever grateful if anyone can help me make this surprise EXTRA SPECIAL!!!

My heart is so heavy every single day with the weight of what I’m not doing for Rowan or how she always ends up having to wait because Jack needs something or has an appointment or is hospitalized. She’s NEVER once complained about her brother or uttered a selfish word. She tells me sometimes, “I remember what it was like before brother, but it would never be the same without him”. She’s been the strongest and most graceful of us all and her life has probably changed the most. If I could give this girl an experience she’ll never forget then maybe I could forgive myself for two years of missing things, failing her, and a lifetime of “hang on I need to give brother this first” or something similar. I got tickets to the Jingle Ball for her birthday, but now I need to figure out how she can meet her idol, Sabrina Carpenter!! ✨ HELP ROWAN MEET SABRINA!!! Does anyone know how I can get this amazing girl passes to meet Sabrina Carpenter​ at the POWER 96.1​ Jingle Ball in Atlanta next month?! Hit me with your contacts AND SHARE PLEASE because this amazing big sister deserves the most special gift for her 6th birthday! We have tickets for the Jingle Ball, but I can’t find any info about meeting artists! THANK YOU!!!!

Pictured below is my sweet girl celebrating her 4th birthday with just her YaYa (my mom). We had tried to prepare for a party, even ordered this princess cake! But Jack was in status AGAIN and we things were pretty bad at the hospital. It was TERRIBLE for everyone. Below this photo is one of Jack jack in the hospital with Rowan’s Minnie mouse of she insisted keep him company in the hospital. ❤rowan bday cakejack and minnie

This is the very first photo of both of babies! We had no idea about the secret battle Jack was fighting at this time! img_2807

Where does that leave Jack?

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Hi friends! It has been a while so allow me to reintroduce for new followers! I’m Leah, Jack’s mom. We lovingly call him Jack-jack like from The Incredibles. Jack has a very rare genetic and metabolic disorder called Pyridoxine Dependent Epilepsy. This condition has left Jack with a brain injury, as well as many struggles and delays. To put it simply, Jack’s body lacks an essential enzyme known as Antiquitin, which breaks down the protein building block called lysine in the brain. The breakdown of lysine in the brain is necessary for the brain to function properly. This essential amino acid breakdown doesn’t happen in PDE patients and the build-up of lysine is toxic to the neurotransmitters in the brain, resulting in seizures and abnormal brain function. What does this mean for Jack?

For the first 5.5 months of Jack’s life, he suffered from intractable epilepsy (uncontrolled seizures). He was life-flighted from our hometown to the best Children’s hospital in our state at 5 days old in status epilepticus; he was in a constant seizure state that could not be controlled. For the next several months, Jack was a medical mystery. He spent so much time in the hospital having seizures, being sedated, getting tests done. When Jack was 11-weeks-old, he had his second stay in the PICU at CHOA. His seizures were getting worse and worse. He was on 3 different types of anti-epilepsy medication and still he was having terrible seizures. The doctors did a bunch of tests and an MRI and told us that Jack had Mitochondrial Disease and that he was going to die. We were devastated but kept fighting for Jack. That turned out to be a misdiagnosis, but does illustrate how sick Jack was at the time. After much genetic testing, Jack was properly diagnosed with PDE and we have been fighting for his development ever since! At 6 months old, Jack had the skills of 1 or 2-month-old baby. He still suffers many delays from everything he has been through and his health is a daily battle. He is on a diet and therapy specific to his condition. He sees Neurology, Genetics, GI (because he has a feeding tube known as a G-tube), Neuro-developmental doctors, Developmental Pediatricians, as well as a Physical Therapist, Occupational Therapist, and Speech Language Pathologist. In addition to PDE, Jack has been diagnosed with Global Developmental Delays, Sensory Processing Disorder, ASD, Apraxia, and Cerebral Palsy. Jack is the happiest, sweetest, most wonderful little boy despite everything he has been through! He loves life and exploring his surroundings more than anything. He has been completely stuck and unable to do this until his doctors prescribed him a walker! We have been waiting on Jack to get his own walker for over a month now and still no word…Currently, Jack is borrowing a walker from his Physical Therapist while we wait for the insurance company to approve one of his own. I live in fear another kiddo will need it and we will have to give it back.

And this is where we circle back to the title. Where does this leave Jack? Out.  Because Jack was not a little sicker or because it wasn’t caught in time, it is a constant battle to get him the services and equipment he needs.  Jack was likely having seizures in utero that were not caught. I used to say I could feel him hiccuping all the time…makes me sick to think those were seizures. Anyway, the seizure activity was not caught (by me) until he was 4-days-old. I hate thinking we could have been better prepared…where was our help and our support? We have always been handed these huge and life-altering diagnoses with little no support. The doctors can only do so much and this shit is EXPENSIVE! This is not supposed to be a bitch session so I apologize if that’s what it’s turned into. However, the struggles and battles we face as special needs parents are so soul-crushing that I feel like writing about them may help me shed some of my anger and frustration.

Our biggest struggle is getting Jack what he needs. Jack’s doctors say he needs a certain amount of therapies to be able catch up and have a decent quality of life. This is 6 therapies per week and we currently do 5 a week to try and save a little money. We have private insurance through my husband’s work. He has a great job and we are very lucky. However, I was unable to go back to work after Jack was born and his daily needs keep me from being able to work a full-time job now. This means we are stuck. We live in a basement apartment at my parent’s house because our finances are so strained. Can you imagine?? We have two windows for the whole place. Again, not complaining because we are very lucky.  Private insurance doesn’t cover much of Jack’s therapies and they only pay for so many visits. In addition, we also do not qualify for any assistance so we are stuck. See a theme?  Jack is two-years-old and does not walk or talk. He does not have the fine motor skills to ever be able to button or zip, hold a pencil, etc. THIS IS WHY KIDS NEED THERAPIES! Shit, sorry did I shout that?! Thanks to therapies, Jack has learned how to do everything he knows how to now. Jack LOVES his walker and the independence/confidence it gives him. He is a totally different kiddo since he got the walker and his development is taking off! At two-years-old, Jack was able to stand up and hug his sister for the first time. I am livid thinking about the waiting Jack would be doing if his PT had not given him this walker to borrow. I can only imagine the price tag that will be attached once the walker is approved. Instead of battling insurance today, I decided to write. I hope there is a way to shed to this hard shell that these battles have given me, but so far I just feel like fire-breathing dragon that scorches anyone who gets too close.

P.S. As always, I welcome questions and I am always open to helping in any way I can. If you want more info on PDE, check out http://www.pdeonline.orgIMG_2909IMG_2558