Saturday, October 27, 2018

Summing Up My Grandpa.

     There are moments in your life where certain figures that you’ve always known begin to unravel from the fabric of who you’ve always assumed them to be. You are born with synaptic pathways not yet connecting details and memories into roads that will entail your experiences. As Those pathways begin to form you learn a shift of reality. A plot is set up and you believe all things are concrete and unchangeable. It is only when something chips and tears at the surface of our safe perceptions that we realize how marred our existence truly is.

         In these perceptions we build personal icons. People who hold a higher standing in our minds. People of a legendary essence of our own creation. My Grandpa Chandler was one of those for me.  He seemed unshakable, someone who would last forever and always be around the next time I wanted to visit his house on Barbara street. 

          Our relationship started off when he met me in the hospital right after I was born. He and my Grandma lifted my brother up for his first glance at me. From there things took an unexpected turn as when I was around the age of two I decided I knew a better name for him than Grandpa. Seeing as my parents were learning Spanish to be missionaries to Mexico I decided the new word I had learned for cow would also be a splendid moniker for my Grandpa.  After that day I would enthusiastically greet my Grandpa by shouting out “Vaca!” I loved my Vaca very much and had no sense as to why he determined to turn himself back into Grandpa. He made desperate attempts to get Grandpa to spill out of my mouth.  He was relieved when I gave up the title and reverted to the preset, Grandpa, as I would know him the rest of my life.


         Most of the lessons my Grandpa taught me were not grasped until I was older and could ponder the veracity of the words he stated over the years. He took me camping and on a trip to South Dakota. I remember the Black Hills, Mount Rushmore and the passion play.  A moment that sticks out most of all was when I became petulant and defiant. Even now I have no recollection as to what my disgruntled spirit arose from as I was often indignant over minute occurrences.   He asked me to take a walk with him. I don’t remember any of what he said except for one phrase.  He said “You’ll catch more flies with honey than vinegar.” While he was not the originator of that quote my Grandpa was the first to teach me that the powers of persuasion were best fed with sweetness rather than hostility.

           Growing up I never fully grasped how much he cared for everyone he came across in life. He would talk to strangers in the grocery store because interaction with people mattered.  One particular day I did not fully assimilate until adulthood was the time the ceramic replica of his face was knocked off the wall shattering into minuscule pieces on the basement floor.  I knew his band students had made it for him. I knew he proudly displayed it in the guest room of his basement my entire life.  This was the one and only time I ever saw my Grandpa cry.  I felt sad for him and when it occurred I wondered why he revealed a mournful demeanor. Now I understand the sadness was not derived from tiny splintered pieces of ceramic but from the regard in which he held every one of his students.  They had crafted a piece of themselves and its value was enough that the loss brought him to tears, a rarity in my perception. 

          
       The passage of time is a funny thing and the reality of it is easily altered. Five minutes can seem as years and years as five minutes. The years seemed so long growing up. Christmases seemed to arrive and pass at a halting pace.  My Grandparents would live forever and I would endlessly have the smells of Grandpa cracking almonds and Grandma cooking her Christmas morning casserole. There would be countless snowball fights with cousins and the enduring of anxious anticipation of music signaling the start of our festivities. This is what I had known and it was what would be but the inevitable continuance of existence carried on and I grew up. Christmas mornings with Grandparents slowly faded. A phone call to wish them Merry  Christmas was all that lingered.

            I clung to that fact they would visit each Fall with my Aunt Becky. It was a tradition I valued and my children eagerly anticipated. By the start of 2014 Grandpa and Grandma had grown much older and Grandma couldn’t travel anymore. The last year of her life she was pretty sick and the family rushed to her side in March of that year.  We thought she would be gone before April greeted us with Spring. She went on to live another few months.

At her funereal I saw my Grandpa. He was sitting on the pew in the front of the mortuary.  His head was bowed a little and he glanced up as I approached. His eyes looked like his soul had had a giant piece of it severed allowing you to see into the vulnerability of his grief.  This was the sort of glimpse that could only be distinguished when someone had loved well.  Well enough that life without another person was a half life. The next time I would see my Grandpa it would be the last.  The picture I took wrapped up all the finality of my relationship with my Grandpa on this earth. He was telling one of my sons goodbye and then in a fleeting juncture it faded into the memory cortex of my cognizance. 

pastedGraphic.pngThe half life my Grandpa lived at the passing of my Grandma was one he wasn’t particularly interested in living. Therefor two weeks after my Grandma made her way to glory my Grandpa found himself in the throne room of his Savior complete with my Grandma once more.  I remember one of the last conversations I had with my Grandpa. He told me he was jealous of all the things I would see as I would outlive him statistically. He thought the world was on this unforeseen precipice of technology and wonders beyond anything his life had brought him to experience. However, I think after my Grandma died he felt an immense ache that superseded any curiosity he had previously forged.

The notion of summing up my Grandpa is found in the things he taught me  and the memories he invested in me. I learned strength of will. When you believe something is truth don’t be easily persuaded otherwise. He demonstrated this in his ability to take an argument far past its shelf life with inexorable determination.  He taught me that even if situations are tough you advance life in an endless march toward your goals. Circumstances are never an excuse to quit what has to be accomplished. He demonstrated this by surviving a childhood within the Great Depression, running toward gunfire on the beaches of Normandy and raising his family with unyielding faith.  Most  importantly my Grandpa taught me what parts of love are important. 

        The fluff and frills of giddy emotion were not what love was meant to entail. Love involved waking up early everyday so you could get to work and provide for your family. Love involved running into a lake out of sheer relief of finding your missing daughter on a boat, safe. Love involved birthday parties, family reunions and endless chats with a downtrodden stranger in the grocery aisle. Love involved loving the same woman for the majority of your life and having her be so much a part of you you had to follow her to the next one.



          Their story was ordinary but it was the love story to be envied for the ages. It is the story I will take with me and pass on to my children. About a year after my Grandpa passed away I gave birth to a little boy name Mordecai. Mordecai seems to favor my Grandpa right down to the curly hair my Grandpa sported in his younger years. Mordecai has the same fiery spirit that will take his determined soul far in life. When looking at my son I can’t help but feel God gave me a little of my Grandpa back in Mordecai. One of my greatest hopes for Mordecai and my other children is they will be able to learn from the things I bestow into them from my Grandpa’s influence.  May most of all they learn to live the fullness of life my Grandpa emulated each day he dwelled on this earth. 

Wednesday, October 17, 2018

The Realm of the Unknown: Parenting an undiagnosed child.

The alarm beeps and you want to turn over and go back to sleep. 5:00 am arrived too quick and you have to get up because if you walk in late they might bump you or worse put you back on the wait list. You trudge out of  bed because with a slimmer of hope you tell yourself this might be the one who knows the answers. This might be the one who sees the puzzles fit together perfectly. You would travel anywhere and pay any expense to find that person so a 5:00 am wake up call is nothing.

Your child will no longer be medically interesting, a curiosity that baffles the best in their fields. In the medical world interesting is not a positive adjective. You endlessly get up and go to appointments, tests, therapies and procedures. All with the expectation that you will be one step closer to the truth. You tip toe around your pediatrician because you know she is awesome and you don’t want to burn her out. As you are unsure if one more referral letter or special paperwork might make her want to drop you .  You only ask for extra when you know it’s neccessary. But you know she is awesome because the second you ask her if you should accept not knowing she helps guide you back,  letting you know your advocacy is the only voice your kid has for their future.

Then there are the nights where another symptom has appeared or another diagnosis made and you sit there terrified because it reminds you undiagnosed means you have no clue what the next turn will bring you. You have no idea if your child will outgrow everything, if they will struggle their entire life or that if  one day something won’t be fixable this side of heaven. Those are the nights the tears fall in the dark while everyone else sleeps.

On top of the stress you deal with the skeptics and the critics. Your child is fine. You need to use this natural treatment and they will be cured. Your cousin’s kid is small and they are perfectly fine. You are paranoid and everything you’re putting your child through is unnecessary. They are hundreds of miles away but they know best. They know better than all the experts and medical professionals. The more skepticism and criticism you hear the less you share. You retreat even more and you hold it inside. This is your silent battle but you will fight this battle because it’s what parents do. They conquer the monsters and break through the darkness. Even in small ways of tickle wars in a hospital bed or holding your child tightly while they cry for fear or sadness or pain.

You email endless specialists to see what their admitting protocol is because if you can find the right expert the mystery will be solved. You make phone calls to awareness associations to see if your kid might fit their themed diagnosis and you  join Facebook groups based on every single symptom and diagnosis your child has hoping someone will be in the same boat as you and help you complete the puzzle. You spend nights analyzing test results and you scour the Internet for a glimmer of light for the most recent puzzle piece. While the rest of your house is sleeping you are working. Finding any loop hole to get insurance to pay for whole exome and/or genome testing. This is hours on the phone with insurance to see what they will Cover instead or what hoops need jumped to get to the end of that road.

The road of the undiagnosed child is scary, disappointing, heart breaking and exhausting. You daily have find strength to keep fighting. With each discouraging test that brings no answers you have to punch through wanting to give up. Ultimately you keep your hope because without hope your advocacy will falter and your child will be voiceless. You as a parent will fight the  battle no one else sees or understands. You will be made to feel guilty or paranoid by people who mean well. You will be made to feel the same by people who do not mean well. But when you look at your child you know immediately that what people think doesn’t matter, the miles and lengths it takes doesn’t matter, you know the weight of the load and the height of the obstacle doesn’t matter. Because in the end giving your kid the best parts of you to ensure their future is the best it can be is what this entire fight is about.

“Now, every time I witness a strong person, I want to know: what dark did you conquer in your story?  Mountains do not rise without earthquakes.” -Katherine MacKenett