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When Mainstream Falls Short

 In Circle the Child, Weekly Forum Discussion

Written by: Melanie Groves; Circle the Child

Always start with your why. This is my why for Circle the Child. This is why I leapt in both feet without hesitation to be a part of this. It of course starts with a story. My family’s story and many other’s stories too as I am finding out. I want to preface this with it’s not a bash against the medical system. Far from it. We have been on the receiving end of some brilliant care. The purpose of the piece is to highlight the shortcomings of putting all your eggs in a single basket when it comes to health and healing.

We were blessed with a family of 2 beautiful active joyful boys. We followed the mainstream ways of inoculations schedules, eating as instructed by the food guide, hitting developmental milestones and everything was going well, until it wasn’t. My eldest son had digestive issues as an infant and the doctor wanted to give prescriptions. “I think it’s dairy, when I have dairy and nurse he gets crankier and his skin gets worse”, I said. The response I got was “nonsense”…. I listened to my gut and stopped dairy while I was nursing and the problem subsided. He reacted to the meningitis vaccine at 1. He was exposed at a daycare to peanuts (with severe reaction) at 14 months and had H1N1 at 18 months. He had a cough for 4 months at 2.5 years right after his brother was born and the same doctor said, it’s just a cold. I pushed, “I think it’s asthma” again, “nonsense” was my answer. I switched doctors to an amazing pediatrician after this and he immediately said “have you considered it might be asthma”? The relief of being listened to!

Then at 4 years old he started having seizures. Our worlds were rocked. The first one happened in the middle of the street while I was alone with a 4 year old and a toddler attempting to get to the park. My local hospital ER visit was disastrous. As I explain what happened, I am told that it can’t be seizures since he didn’t lose consciousness or become incontinent. Then I am asked to show proof. “did you video it?” Are you kidding me after I tell you I am alone in the middle of the street with 2 young children and you want me to stop and take a video?!?! Livid we went to our pediatrician, who again was brilliant in getting us testing and referring us to a children’s hospital. It was epilepsy, so yes seizures. After many tests and failed medications the care team determined there was a teeny abnormality in his brain, all the seizures came from there and brain surgery would solve the problem. We agonized and then went through the surgery seeing as the medications were not working to stop the seizures and all this advice was based on sound evidence. The surgery biopsy however revealed something more sinister. The doctor literally said to us, “It’s not good”. It turned out that epilepsy was a by product of a bigger problem which was a rare inflammatory brain disorder that should have caused him to lose speech, memory and cause partial paralysis. “We don’t understand, he’s otherwise so healthy”. Us, “We’ve been seeing a chiropractor since he was born to keep his nervous system free of interferences, that might be helping”, eyebrows raised, “No it’s not that. We’ve got nothing left to try but wait and see. If it gets worse the only thing we can do is cut his brain in half.” And that’s where it’s been left. He goes yearly for scans to monitor but that’s it. It’s been like that for 6 years.

So here’s where the mainstream system fails. We are a family of 4 each dealing with this in our own ways. The system isn’t designed for the whole person. The specialists are so targeted that they fail to see our son past a brain inflammation. Yet think of that 5 year old having his brain cut open, walking around with a huge scar, scared everyday that a seizure is going to hit. Think of a little brother who doesn’t understand, who is getting less attention and is now lashing out because 3 year olds don’t have vocabulary to express themselves. Think of 2 parents, without sleep, trying to hold down full time jobs and keep it together for their families, all on mainstream help.

We were cracking, there was no help offered and when I asked I was met with “well you can see a psychiatrist, the waitlist is 8 months”.  Out of momma bear sheer determination and a dash of desperation I  started on the journey of finding help. I didn’t know where to look or even what to start to Google. My whole schooling and university was hard science. Nothing prepared me for looking outside of that stream. I found music therapy for the little one. Art therapy for the older one. And accidentally stumbled across energy healing. I followed the bread crumbs and I sought the help it led me to. I doubled up our appointments with our chiropractors to keep us all healthy, we sought out naturopath to help us align our nutrition. I discovered EFT. I learned NLP. Someone recommended yoga and from there we learned about visualization and breathing techniques. All of these tools have become part of our arsenal to support him, and ourselves. And quite honestly all of these tools were met with dismay not only by some (not all our) physicians, but also well meaning family members who called us ludicrous for wasting money on “these things”.  While the seizures are not gone entirely we’ve gotten to the point that he is happy, confident, not living in anxious fear anymore and thriving, despite the diagnosis. We’ve gotten to the place where with enough warning and focus before a seizure hits, he can breathe and calm his nervous system to actually stop it from hitting or, at minimum, reduce its severity. That is AMAZING progress.

The point here, with this really long story, is that I had to dig and research and literally work myself into burnout to find, learn and put these multiple brilliant things together.

My purpose became clear to me as I was uncovering and learning all these new ways of returning to health. I would take what I had learned to create a place where parents and families could come and heal together. Because one person in the family with a diagnosis affects your whole tribe. The whole family needs to heal holistically. My vision is a healing center where all of these various options are available and the plan of healing is designed for the individual, with the individual. I was head to toe goosebumps when this community was first discussed with me. It’s an online version of my dream! A place where a parent or caregiver can come, safely, without judgement, to ask questions and find a multitude of options to be able to build the health plan (body, mind and spirit) that their child needs.

One last story, in my study of Huna energy medicine, I learned that the Hawaiian community would train its warriors to fight. When the warriors returned from war, the kahunas (Hawaiian word for specialist) of the various disciplines would work to heal those warriors so they could reintegrate into the community. The 3 kahunas for this were experts each in a single discipline. One focused on the physical body, one on the mind and one the spirit. It was a team and whole approach to healing the warrior. To me, this community has brought together many kahunas (specialists) for parents to consult and help their little warriors heal and reintegrate.

That’s my Why. Thank you for being a part of it.

 

 

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