She was Beautiful

She was beautiful… perfectly imperfect…. my child…. disabled… and she taught me more about life in her 36 short years than most people can ever learn in a lifetime…. This blog is about her…. her life… her struggles… and my imperfections…Hopefully it will help someone with their own life…their own struggles…

Where do I begin? I suppose the best place would be from the very beginning… I started dating Aaron at age 15… married at 19…Ashley born 13 months later by C-section… breech birth… wouldn’t cooperate….7 lb 4 oz…. children raising a child…

She had colic… lots of it… and an umbilical hernia… I remember my granny telling me to feed her a little whiskey and tape a quarter to her belly button… Never once did I feed her the whiskey… but I can promise you, every time I visited my granny there was a quarter taped to her abdomen… you didn’t mess with my granny!

Every time Ashley received her vaccines she became extremely ill… high fevers… lots of whimpers… would just lay in my arms and let me rock her… this would last for 2 to 3 days and then magically disappear… wish I knew then what I know now… but that part of our story is for another day…

She was a thin, pale child. Breastfed until age one… craved fats after she started eating table foods… would actually eat the fat on any meat before she ate the meat itself…Disliked fruits and vegetables… but loved her meat…

Ashley was always small for her age… wore the same size as years old… until puberty… then all that changed..

Didn’t start walking until 14 months… everything seemed slightly delayed… but she always met the milestones…never worried once about her mental capabilities… but motor skills were another story…

I am not sure I what point I started to worry.,. but my mother’s instinct… as immature as it was… told me something was wrong… something was just off… I took her to several doctors… even a specialist or two… and was told basically it was in my head and there was nothing to worry about… I was even scolded by a few… informed I was wasting their time..

And then she started passing out… she would get hurt… start crying… turn blue… pass out… then come back to… and still the doctors told me there was nothing to worry about…. her pediatrician even told me he did it as a child and he turned out ok….

Her story… is my story…her family’s story.. Ashley was the oldest of 4 children… finally diagnosed with Aspergers Syndrome after graduating high school… If I am being totally honest… I was sometimes embarrassed by her… if a stranger ever met her… you would have just considered her odd… maybe tried to pull a way… until she was diagnosed with brain cancer, I let my ego stand in the way of fully appreciating the gift God had given me… I can’t bring those regrets back and correct them… but hopefully our story will help someone else…❤️

The day life stood still…and then began again

On June 4, 2013, life as my family knew it changed in an instant. Ashley, my oldest daughter, was diagnosed with a brain bleed and a primary, inoperable brain tumor on her thalamus. Since Ashley has high functioning autism, decisions regarding her care fell in my lap. At the time, I worked as a Critical Care nurse pracitioner, a hospitalist nurse practitioner and an ER nurse practitioner… you read that right, I was a workaholic. And as anyone in the healthcare field knows, we tend to have control issues and like to “fix” things. And now I was facing something that I had no clue how to fix!

I spent the next two weeks, sleeping in a chair at Ashley’s bedside in ICU. I had an advantage over many families whose loved ones are in ICU… her doctors were my bosses whom I trusted completely and her nurses were colleagues whom I interacted with on a daily basis. I knew what the beeping monitors meant. If I had a question for her doctor, I just sent him a text. And Ashley, being Ashley, continued to be her upbeat, not afraid of anything, God loving self. My time there could be spent determining what to do next.

During my time in that chair, I scoured Dr Google, for anything I could find on her condition. I walked the hospital halls at night and discussed her case with the night shift hospitalist, searching for an answer….is this tumor deep in her brain cancer? and if so, what next?

During that search for possible answers, I kept coming across research regarding the effect of diet on inflammation in the body and that inflammation causes cancer as well as chronic disease. I found conflicting information on which diet was best… one recommended organic fruit and vegetables (which Ashley hated), Another included flaxseed oil and cottage cheese – another option I knew I would not be able to get her to ingest! Eventually I stumbled across the book Radical Remission by Kelly Turner, PhD. During her research for her PhD, Dr Kelly interviewed survivors that were the outliers, those who beat the odds. They all seemed to have a few things in common… they had taken personal control of their health, they made significant dietary and environmental changes and they had the attitude and the faith that they could beat the odds! Maybe I was on the right track. If we couldn’t biopsy this thing… which we named Fred because better to make it a friend than a foe…then we might as well treat it like it was cancer so there would be no surprises!

I kept going back to the subject of food and inflammation. I stumbled across the Paleo diet and how many people had helped their autoimmune conditions with the diet because it was thought to reduce inflammation – there was that word again. Most of the allowed foods on the diet were things Ashley might eat so it seemed like a good choice. So after approximately 2 weeks, we went home with our girl and the uncertain diagnosis of “we are not sure what it is… we think it’s been there since birth… we don’t think it’s cancerous… come see us in six months.” (that was from the neurology team, not my docs… who both suggested I get a second opinion to ease my mind).

Over the next couple of months, I cleaned out my pantry. Spent a fortune on anything I found that might be considered Paleo – talk about redirecting your stress!… and made an appointment with neurosurgery at Mayo Clinic in Rochester, MN…. and all the while I thought life couldn’t get much worse….but boy was I wrong!

Next….Our extended stay at Mayo Clinic, better known as “this sure didn’t go as planned!”