Metabolic Mama Origin Story

 

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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!
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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!
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The upside to Jack’s metabolic disorder is that we got to trade all these meds for one med + the special metabolic formula!

Minivans are the new cool, but kindness is always the coolest!

IMG-8404This post is dedicated to all the mamas who bloom where they are planted, making minivans and mic-key buttons the new cool. There are little reminders all around me telling me that my life is not my own, but instead driven by my medically complex child. Cars are just another reminder that I am on a different journey than I was before, you know, Holland and not Italy. This was prompted by an Instagram post I saw back in the summer from a super popular mommy blogger. It was during a particularly vulnerable moment of mine, but I found her words at that time to be another painful reminder. She wrote things like, “lord knows I refuse to get a minivan,” and #notaminivanmom. I am not a very sensitive person, but this post made me feel ashamed of my van. This may come as a shock, but it has not been my lifelong dream to drive a minivan. So I am as shocked as you to be writing a piece in defense of the minivan life. (haha!) 

About a month ago, I got into a small accident in my beloved minivan. No one was hurt, but my car sustained a lot of damage. After almost 2 weeks, I finally got my van back yesterday and I am ecstatic. I quickly and proudly donned my new Littlest Warrior & Gwendolyn Strong Foundation stickers on the windows. They say amazing things like, “Dragon Mom, Never Give Up, Advocate Like a Mother”, etc. I have never put stickers or magnets on a car I have owned, but I am so proud of my van and the amazing things it allows me to do for my family. I have also always been paranoid about having stickers and magnets on my car in case I make another driver angry and they can identify my car easily by my stickers…er, I’m not known for being an amazing driver. (haha) BUT yesterday, I wanted to fully embrace my life and my love for my minivan by applying these incredibly meaningful stickers so my pride is displayed for the world to see now. Never in my wildest dreams did I think I would be driving and loving a minivan. But never in my wildest nightmares did I think I would have a child with a rare genetic disorder either. So I feel the need to take back the van, if you will; to empower those mamas rockin’ their vans and their different but beautiful lives! 

When Jack was born, I drove a Kia Sorento and loved it. However, it was soon clear that the car would not work with Jack’s needs.  I have been shuffling Jack back and forth to Atlanta (about a 2 hour drive) to see different specialists since his first discharge from CHOA at 2 weeks old. When he was little I couldn’t put him on a changing table for fear of germs (he was in the hospital all the time), and now he is way too big for a changing table. We have always and still do all diapers changes in the van when we are out. I do tube feeds, mix formula, give meds, whatever is necessary. I need the space. I have no idea how long Jack will be in diapers and having the peace of mind that I can just lay him down in the car and change him easily is wonderful. There are so many van things that I too used to think we super lame, but actually make all the difference in the world for me now. I am usually holding Jack when we are out and about and can’t put him down to open a door, but my van doors open for me. (woop woop!!)  I can store Jack’s walker and stroller without putting the third row of seats down. The Tahoe I drove briefly couldn’t even do that (clearly, I’m impressed by big storage spaces). I know I haven’t done a great job of making minivans sound sexy so far, but sometimes practical is more important…we can add the sexy! 

There are so many reason that I love my minivan. I can do so much inside it. Here are just few awesome things I have done easily in my minivan: changed clothes, napped, had sex in the front seats, peed in a cup, had an enjoyable dinner, had sex in the middle seats, changed a tampon, had a beer, built a fort, the list really goes on and on. I seriously have to ensure that we drive my husband’s car if we ever get to go anywhere solo because he automatically thinks that the two of + the van = a good time. It really doesn’t matter where we are going or what we have to do, if we are alone in the van then my husband thinks it’s go time! So I guess I would say that the minivan is the ultimate mom machine. wink wink!

Here’s what else I think about vans. They usually hold some incredibly kind and brave individuals, especially the really big and specially made ones. Some of Jack’s best buds from therapy have a really large van and Jack gets so excited to see it on Wednesdays. The family this van belongs to has several children, most are adopted and have different needs and abilities. I admire the mama of this family and I love seeing the van as well because it means I get to see her amazing kiddos and chat for a second. I never want another mom to feel ashamed of what she drives! I know it’s on me that the blogger’s comments made me feel less than, but I don’t think it’s a secret that minivans have a bad rep. AND of course I will take every opportunity I can to spread a little awareness. I think people (especially those with a platform) tend to forget their privilege. This anti-van mommy blogger, for example, has so many women listening and watching; no one wants to feel that their life is less than because of the car they drive. I can’t be her only (former) follower who drove a van. That’s why I also say that kindness is always the coolest!! Words have so much impact, especially on us medical mamas who already have to sift through the bullsh*t of what is said to us. I have plenty of daily reminders that my life is different, but it’s important to me to make sure everyone knows that different is not less! Different is beautiful, my van is beautiful, my life is beautiful, and I’m so proud of it all. ❤

This is me, my messy mom bun, and my vanny van with the new stickers!!IMG-8405