A Mindful History
When I started TED mamas almost 8years ago, it was from a personal need, a place of wanting to know other mamas who were in the trenches too. For wanting more connection, discussion and support from other mamas who were on TEDs. Stressed out our minds juggling life, family and some of the most sensitive children.
We went from being mamas who occasionally passed like ships, chipping in on each-others posts in dairy-free breastfeeding groups, to a close knit group of mamas. A group of mamas who helped each-other survive and thrive in some of the hardest and darkest days of our lives.
As the years have gone by, the dynamic has changed a lot. Most of the original mamas have moved on, though some remain to chip in when they can. For the most part our mamas move on to different stage of their lives, leaving TED mamas and the painful memories this stage can provoke behind.
A special few mamas of kindred spirit remain. Mamas who stay to pass on knowledge they gleaned through their journeys with the mamas wading in the trenches they have traveled.
Over the years many of these kindred TED mamas have helped me moderate and admin the group, helping cultivating resources and with the day to day administration of the group. Presently and most notably Tiffany, a TED mamas member of over five years, who has spent many of those years as my fellow admin and close friend.
I had no idea when I started the group that it would grow so tremendously from those few mamas in the early days, to the thousands upon thousands we’ve supported in the years since. Or that my own role in the group would change so much over the years.
When I started TED Mamas I was a breastfeeding enthusiast, a trained peer supporter. Someone with a less than ideal experience getting established nursing that thought it mattered enough to push and do whatever I could to make it work. In the early days I was repeatedly encouraged to formula feed by well meaning mothers who had struggled and though they could save me suffering, by giving me permission to give up. But, I didn’t want to give up, I wanted support. I wanted help and encouragement to persevere in doing what I knew was best for my little one.
Blessed with a gift of stubborn determination, I pushed on without their support. I expressed and cup fed, used nipple shields and more. I read books, found blogs, went to LLL meetings, saw IBCLCs and did all I could to succeed by any means necessary. Then I used that knowledge, experience and enthusiasm and put it toward training to be a peer supporter to help mamas in my local community get the support I had lacked.
Then my second son arrived, directly following my own acute health emergency. I naively thought that because he was feeding well (tongue tie misery and early division aside) that we were in the clear and on track for an easier go of it second time around. Unbeknownst to us at the time his “good sleeper” skills and persistently irregular stools where indicative of a much deeper issue tied with insufficient microbial diversity and an underlying mitochondrial insufficiency. This lay the foundations for his increased susceptibility to V-Injury, which pushed him over the edge from sleepy irregular pooper to extreme allergies and “burn victim” weeping eczema.
Our cute sleepy baby gave way to our miserable itchy baby. Too itchy to get into a deep sleep, he suddenly needed swaddling every nap and bedtime, and lived in scratch sleeves to protect him from scratching his weeping skin.
With solids came the hives, oh so many hives. Occasional dots and food contact spots to full body breakouts. Plummeting growth and then later breathing issues.
At 18m, he was hospitalised for respiratory distress and came close to dying, at Christmas whilst visiting family. As it turned out, he is deathly allergic to dust-mites. It was within the weeks following his hospitalisation, 20th January 2016, I started TED mamas. We were 6m into our TED at that point and I was so exhausted from trying to do it without others who “got it”.
Some of the most acutely traumatic memories of my life are allergies adjacent.
Including but not limited to:
•eczema – waking up to a baby covered in blood from scratching
•anaphylaxis – holding my toddler in my arms blue lipped, pale and struggling to breath.
Before we found the TED methodology and applied it to both our diets, when he was 13mo, we had already eliminated 13 foods for causing hives from first exposure. Then through our TED we identified over 20IgE allergies and twice as many food sensitivities linked to multiple food chemicals.
Thanks to the TED Method and following the patterns it has highlighted for us, we have been able identify and avoiding his personal triggers. Now he has been eczema free and almost completely reaction free for years. It’s also helped us to focus on his nutrition filling gaps as we discover them, thriving in adversity.
Allergies and intolerances can be extremely traumatic in the ways that they manifest in our lives. They can have innumerable contributing factors and manifestations. They can bring us to breaking point and that is why we have support groups we love and lean on in our times of trials.
Sometimes we feel like we need something to blame. Sometimes we look back and think if I did that differently it would have worked out better. That works on TEDs too, we can only do as much as we know at the time. For our own sake we need to be able to forgive ourselves for when we made decisions that in hindsight may not have been the best ones. Sometimes we have information overload and it can just feel like too much to process and too hard to decipher what’s happening. It’s important to take a breath and collect ourselves when that happens.
Allergies, eczema, colicky babies, reflux and sleep deprivation can all be awful. They can make us feel overwhelmed, traumatised and can sometimes leave us too stressed out to appreciate the joys of the baby stages. That can be really hard on the heart and it’s really important to hold space so we can grieve that loss.
Allergy and eczema parent PTSD is a real thing. So are postpartum mental health struggles; I know that especially for those with a history of eating disorders it can be a perfect storm. It can be so easy to blame the foods, the breastmilk, the allergens, the TED.
When really they’re not the problem.
Its rooted in a bigger situational trauma, parent carer trauma, it can be incredibly hard having medically complex children.
Sometimes we feel like we need something to blame. Sometimes we look back and think if I did that differently it would have worked out better. That works on TEDs too, we can only do as much as we know at the time. For our own sake we need to be able to forgive ourselves for when we have made decisions that in hindsight may have not have been the best. Sometimes we have information overload and it can just feel like too much to process, too hard to decipher what’s happening. It’s important to take a breath (or many), vent, groan and collect ourselves when that happens.
Everyone needs to do that sometimes, we can only endeavour to forgive ourselves for our past mis-steps that we took in ignorance.
But, please, don’t come to our TED Mamas community where we’re here to *support* each-other in the trenches and throw blame the methodology, mamas or group, that has played a role to help us all in our health journeys. It’s a methodology that can be applied in infinite ways; essentially at the end of the day its only as good as what you chose to put into it. Much like the support and advice we can share can be entirely dependent on the questions asked and information offered. For each of us our questions, answers and applications will all vary tremendously and be completely depend on the stage we are at in our own journey and our ever evolving understandings.
If we need something to blame. Personally, I think it’s most appropriate to blame the broken world we live in. Societies where practices detrimental to our health have become so normalised that few blink an eye when they see health warnings at every turn, and are somehow still surprised when health issues arise.
Our coping methods and the tools we use are not the problem.
The entire world has changed around us in recent years, too, and that has really had a tremendous impact on overall mental health. When we are stressed, traumatised and confronted with fear and death on a daily basis it closes down some of our brains ability to function and process things, fight-flight-freeze, we just want to survive. That makes it infinitely harder to make informed decisions and makes it so much easier to expect other people to tell us what to do, so we can forgo the hassle of doing our own due diligence. As appealing as that can be, this is the antithesis to TED life.
TED life is hard.
No one else can know all the intricacies of your life or you and your little one’s health. The advice you are given can only be as thorough and appropriate to your situation as the questions you ask. Only you know your full story.
The job of a TED mama is hard. You need to be is a master detective, researcher and support group sleuth. Often times the only true expert of your childrens health. But, the rewards speak for themselves.
God bless
❤️ Lillie
TED Mamas
Founder and Admin
•Related blog posts•
The breastfeeding and related challenges we’ve faced:
Why I think breastfeeding is important:
And finally, my personal intended hope for the group:
TED Mamas: Support and Healing 