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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!

One thought on “Metabolic Mama Origin Story Leave a comment

  1. Leah dear. You have a writer’s heart and Are obiviously brilliant to be able to become the mother you are. The demands have ravaged you. But you can and are doing this almost impossible feat. Many mothers would have fallen apart at the beginning. Never to have recovered. You have a warrior spirit. I long for your journey to be more publicized. To help other mothers. Even physicians. You will succeed. With my love and great admiration,Marion.

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