An Unfinished Story of Hope

Originally Posted June 2019

Today’s Wednesday story is like always, so amazing! I connected with Shelley at a Lift event put on by our friend Kay { aworldwidesisterhood } last year. After connecting with Shelley on IG, I began to really think that I knew her before. After a couple months, I finally remembered! She had lived in my area for a short time and our daughter’s had played in kindergarten together!! I am truly so grateful that Shelley could share her story today. With her hope and knowledge she’s helping so many people to live a happier life.

It’s hard to tell a story that doesn’t feel as if it’s finished yet-

But I remember the day it all changed for me:

I sat on the floor like a puddle, I couldn’t even muster the strength to get up when my doorbell rang and two women from my neighborhood stopped by to visit. Gratefully, these two sweet women – further down the path of motherhood than I was, let themselves in and began to minister to me.

Up until that moment, I had worked diligently to always choose hope.

Over the course of the past 10 years I had chosen optimism and tried to embrace the opportunity I had to be a mother to 4 beautiful children.

I told myself and everyone else that everything would work out. I could see the Lord’s hand regularly as we worked through the challenges our young family was facing.

But on that day, even I couldn’t see my way through anymore.

I hadn’t brought children into this world to suffer like this and I couldn’t make sense of all that we were faced with.

About 8 years before this, our oldest child had been diagnosed with life threatening food allergies when he was only 18 months old – until that time, it had been a round the clock struggle to keep food down him and keep his tiny body developing.

It was almost a relief when we learned he couldn’t have eggs, wheat, milk, soy, peanuts, corn and other foods I can’t even remember now. Except all my energy was then being thrown into finding new ways to feed this child. This was before the internet became such a rich resource, so I spent a lot of time at the local library and scouring the shelves of obscure health food stores.

Our daughter was born not long after this diagnosis and she too tested positive for a multitude of allergies – hers included a few more, so we learned to live on what would now be considered a pretty paleo diet: lots of fruits, veggies & meats. Eventually their systems began to heal and although it was tough to participate in many social activities that revolved around food – we figured out how to manage and eventually had a small community of other families dealing with food allergies that we became a resource for.

When our third child was born I was mentally prepared that he might have some totally random allergy -but was surprised by a sweet little spirit who didn’t make a sound upon entrance to this world. He was born with bright blue eyes and a cleft lip. When he went in for the surgical repair, he didn’t recover as expected and soon we realized he wasn’t developing at the same pace of his older siblings.

Realizing we needed more support, we made a cross country move to be closer to family, and we began spending a lot of time at specialists: the cranial-sacral clinic, speech pathologists, occupational therapists, feeding specialists, early intervention education, physical therapy and eventually a neurologist at the local children’s hosptital- who decided to run a blood test, just to rule out a genetic disease, that he was 95% sure our son didn’t have. That appointment was at noon on a Friday.

Just 6 hours later, the Dr called back – the test had come back positive and he asked if we could come up to the hospital lab the next morning so he could run it again to make sure. When we arrived, we told the lab tech who we were and that the Dr had asked us to come up so he could double check some test results. She looked at the previous days lab work and gently said “with numbers like this, the Doctorr isn’t checking to make sure, he’s checking to see how bad it is.” .

With breaking hearts and limited access to information over the weekend, we were able to figure out that the Doctor was concerned about some form of Muscular Dystrophy. Monday morning, we were sitting in his office and the Doctor confirmed, our son had Duchenne Muscular Dystrophy – a catastrophic muscle wasting disease that affects primarily young boys. We were referred to one of the leading Muscular Dystrophy researchers in the country who just happened to be running a study at the local University Hospital. We met with that researcher just a short while later – he went through a number of tests, explained study options and talked about the grim prognosis. We were surrounded by an endless array of residents, nurses, therapists and researchers for most of the several hour visit.

It felt like we were in some sort of well orchestrated night-mare as they told us he would eventually lose his ability to walk, talk and breathe on his own. At the end of the visit, this kind Dr ushered everyone out, closed the door and gently said, “I’m a father too.” He encouraged us to enjoy every minute with this child and our young family. “Go to Disneyland,” he said. “While I am working very hard to find a cure, these things take time and I honestly don’t think we’ll see one in your son’s lifetime – so please don’t waste one minute you have with your son and your young family.”

By this time, we had added a 4th child to our family. An unexpected pregnancy I had cried through in fear that he would also be sick. Gratefully, this sweet, bouncy boy did not carry the same genetic mutation. But he did, like our older children, have a host of food allergies and a mild congenital heart defect.

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We took the advice of that researcher to heart – we went to Disneyland and Lego Land, we spent time with family, we built a sandbox and a play set. We stopped focusing on the race to get ahead and focused on the moments we had.

Unfortunately, Muscular Dystrophy was not the only challenge this son of ours faced, it became very clear that he still wasn’t developing normally and soon we had another diagnosis: an autism spectrum disorder known at that time as Pervasive Developmental Disorder. Our days were consumed with therapists both in and outside of the home to teach him to talk, tolerate wearing clothes and responding to different sounds, eat and just exist in our modern world.

Everything in our home was labeled with pictures and we constantly had a blow up pool in the front room we would fill with different textures to help him integrate his sensory system. Gratefully, our children were all very close in age and he was constantly surrounded by loving siblings who jumped in and pushed his development along in ways only other children could.

In order to spend more time together as a family, we sold the new home we had built in the suburbs and moved closer to the hospitals and to my husbands work. It greatly reduced the amount of time we both had to be away from home and allowed all of our children to go to school together. It was such sweet relief.

I was sure everything was going to be alright.

Then more things began to change. Our oldest son had always been described as very bright and active. But as he progressed through elementary school teachers began to report an inability to concentrate, plentiful lost assignments, and a struggle with certain types of school work. Our previously happy child dreaded going to school.

Our daughter’s teachers were also beginning to complain of attention & reading issues and after some encouragement from the school and our pediatrician, we started seeing a child psychologist.

Quickly the two oldest were diagnosed with ADHD and started on medication. Their symptoms would seem to get a little better for a week or two, then their moods would crash and we began the dance from one medication to another. We went through this cycle for months, and new symptoms appeared. The Psychologist began talking about mood disorders, anti-psychotic medication and more – they wanted to add one medication afteranother to compensate for the side effects of the first. And in the midst of it, my happy go lucky children had stopped singing, creating, eating and sleeping… they were shells of their former selves and they were all under the age of 10.

Add to that, when doctor’s started our 3rd child on steroids for the muscle disease, his blood pressure shot through the roof and tests revealed that our son with muscular dystrophy was also in early stage heart failure. He was 5. The Doctor’s had never seen it so early and due to his age and other diagnosis they felt there was nothing they could do.

The weight of all those challenges were converging that morning when the doorbell rang in answer to my pleadings to heaven above.

Those dear women sat and listened as I poured my heart out.

They cried with me, they prayed with me and then each of them counseled me to consider looking to my scriptures. One spoke of a time when her children were struggling deeply and she went to the Lord after reading a verse to “Cry unto Him over the crops of your fields, that ye may prosper in them.” She told me how she plead with the Lord – she didn’t have crops and or fields, her children were her life’s work and she needed heaven’s help so they could be fruitful. They both testified of the answers that came when they put their children in heaven’s hands and encouraged me to do the same.

I have to admit, my first reaction was more than just a little skeptical. My children were falling apart in spite of my faith and the best thing they could suggest …..was to turn to my scriptures? But when you don’t have any other options, you take any advice you can, so I began to read.

My studies lead me to the revelation known as the Word of Wisdom, contained in the Doctrine and Covenants, section 89. As I got to the end of the revelation I read the words “And all saints who remember to keep and do these sayings, walking in obedience to the commandments, shall receive health in their navel and marrow to their bones; And shall find wisdom and great treasures of knowledge, even hidden treasures; And shall run and not be weary, and shall walk and not faint. And I, the Lord, give unto them a promise, that the destroying angel shall pass by them, as the children of Israel, and not slay them.” Those words went to the center of my soul.

We were being consumed by a destroying angel and if anyone needed protection from this force, we did. I began to plead with heaven to better understand. Just days later I found myself in a meeting with another group of women in my community. The leader of the organization pulled out a massive book she had just heard about and wanted to show me. It was called Nourishing Traditions – a compilation of the research of a Dr who had traveled the world studying ancient cultures, their foods and all the health conditions these traditional cultures didn’t have because of their diets. She was leaving town for a few days and wouldn’t have time to read it, so she offered to let me read it first.

To say I inhaled it, is an understatement.

Over the course of the next few weeks more women came into my life with more resources. One introduced me to a doctor who specialized in autism. We met with him and he did an array of blood work that showed that their allergies had never fully gone away and started them on supplements and herbs to help heal and calm their systems. We returned to a diet similar to what they were on when they were little and we started to see dramatic improvements. They no longer needed the ADHD meds to get through the day. By the end of our oldest son’s 4th grade year, his teacher pulled me aside – he had made such tremendous improvement in the past few months, she HAD TO KNOW what medication he was on so she could share it with other parents.

I still remember the look on her face when I told her there was no medicaiton, it was just diet changes, supplements & herbs.

I was driven to better understand what was going on so I began to read everything I could get my hands on about food, herbs, brain development, autism and more. It was new and emerging science as so many children were starting to see similar symptoms and conventional medicine didn’t have answers.

I learned about healthy fats, vitamins & minerals, the difference between pasture raised and factory raised animals, the slow food movement, the problems caused by sugar and yeast. I stopped couponing and bringing processed foods into the house. We raised our own hens, started a garden and joined local organic food co-ops.

Every change we made brought back more of our sweet children. So much so, that when my husband got an offer to move back to the East Coast for work, our kids were well enough to make the transition and he took the job.

As our two oldest children were entering their teen years, their health, especially their mental health began again to decline. Continually searching for support and resources and as new guidelines for autism had been adopted across the medical community, we were required to take our 3rd child in for a re-evaluation in order for him to continue to qualify for services in the school system. I expressed concern about my oldest son at these appointments and the Doctor asked to see him. Our oldest was diagnosed with an autism spectrum disorder (which answered so many questions from his earlier years) and we began to understand why the ADHD meds had been so destructive for him, why some things came so easily and others were mind bendingly difficult.

We also were learning first hand how debilitating anxiety and depression could be. There had to be more answers. I enrolled in a 3 year traditional herbal medicine program which taught me to look at the body differently and how to utilize botanicals more effectively. I did intensive work with pediatric & midwifery botanical medicine practitioners and I studied in an amazing Traditional Chinese Medicine Hospital in China where ancient medicine and modern medicine work side by side. I’ve had the privilege to help start and run both public and private clinics working with all sorts of conditions that have continued to teach me how powerfully food, herbs and the environment affect the body.

At the time of this writing, I am preparing to take a final for an intensive certificate of study on Women’s Functional and Integrative Botanical Medicine which has solidified my love of food, medicine and modern research to change lives and improve health. And I share my knowledge and passion online and in my practice because I know without any hesitation that what I have learned can improve others lives too.

Our children are now teens and young adults and we recently moved back to the city where our third son was originally diagnosed with DMD and autism. I took him to re-establish care with the team of doctors who had cared for him in those early years. After not seeing him for nearly 10 years, the team of doctors and therapists gasped in unbelief and erupted into cheers and tears as he pulled himself up to standing without assistance from his wheelchair and carefully walked across the clinic.

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He had surpassed what even his most optimistic doctor had predicted over a decade ago. None of them had ever seen a boy with his diagnosis still walking at his age. We have also cheered as our two oldest children graduated from high school and are continuing on in their work and educational pursuits.

Please understand, I don’t share our story to make some outlandish claim that Muscular Dystrophy, Autism, Depression or any terminal, degenerative disease or mental health condition can be cured with herbs and diet – we are not proof of that.

We still fight these battles every single day.

But oh how beautiful life is compared to how it could have been.

We are proof that with the right tools, helpers and support, the odds can be beaten. We are proof that quality of life can be greatly enhanced even in the darkest of prognosis. And that this world holds hidden treasures of knowledge for those who seek it and protection from destroying angels can come in the most unlikely forms.

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