The Original Beanie Baby

He’s known as the original Beanie Baby.

Actually, he has many titles: Beanie, Leonard, Gene, husband, father, brother, uncle, and cousin, but I believe his favorite title and what I have the privilege to call him: Grandpa

My grandpa has a huge milestone coming up. On April 16^th he will turn 80 and to celebrate his life, our family will be spending this weekend at a cabin in Pigeon Forge.   He’s one of the many people in my life who’s taught me how to be More Than My Mountains.  So, in honor of my grandpa, I would like to share a few golden nuggets he has passed on to me.

     1. Don’t Complain About Your Circumstances: Over the years Grandpa has had his fair share of, "losses.” My union-man grandfather worked at a steel mill almost 20 years before he lost his job because the steel industry moved overseas. If you’ve ever wondered why Grandpa is an American-made Ford man, well there is your answer.  He then began working as a welder, which came with terrible sporadic shifts. This career change caused him and Grandma to have to wait on many things they wanted to do until they could save and afford it.  Though he had every right to complain, he didn’t.  My grandpa’s philosophy has always been, “you never know what the other man is going through,” so you have no right to complain— you work hard and you do what you can to help your fellow neighbor along the way.  I’ve taken this attitude I’ve learned from Grandpa and applied it to my situation. Despite my Primary Immunodeficiency, I’m determined not to complain because I have no clue what others are going through.  My goal is to do More. Along the way I hope to help my fellow neighbor to “stand” just as my grandpa has done.

2.     Don’t Throw Anything Out Before You’ve Tried Fixing It First: There’s no doubt about it, my grandpa is the handy-man of the family.  Over the years, he’s come up with the cleverest ways of fixing objects.  He’s unknotted my necklaces, repaired my broken shoes, and most recently he performed surgery on his favorite rake I broke when I was raking leaves for him last fall. Although the only thing I’m crafty with is a paper and pen, his motto of trying to fix anything that’s broken has inspired me to find a solution before I give up on trying. By watching my grandpa’s example, my determination to never allow my disease control me became a part of my character. There may be areas in my life that I want to “throw away,” but because of my grandpa I’ve learned how to “fix,” them because they become rare and priceless treasures.

    3.  There’s a Correct and Proper Way to Cut Tomatoes and Spaghetti: Seem kind of random?  It is.  But if there was ever a correct and proper way to cut tomatoes and spaghetti, my grandpa knew it and he taught it to me.  Two separate occasions while I was cutting these foods it began the same way, “Look here, look here,” Grandpa said with his famous grunt, then he proceeded to show me how to cut it with Grandma in the background saying, “Gene!  Let her cut her spaghetti/tomato how she wants too!” At 12 years old, I wasn’t very amused about receiving this “help.” Now our family looks back on this memory of “Cutting Tomatoes and Spaghetti 101,” with laughter.  Besides being taught a “better way” to cut these types of food what I eventually learned through these instances is no matter how frustrating it is, there’s always wisdom to be gained from your elders.  Never discount what advice they have to give you no matter how trivial it seems.  I have learned so much from my grandpa over the years and I know I’ll pass it on to my children...even how to cut tomatoes and spaghetti, J

4.  You’re Never Too Old to Have Fun: Grandpa has taught me this in spades. He’s the first one to cut up a have a good time.  Many people remember when he was at the beach and dressed up as a woman and acted like he was walking an invisible dog. Over the years he’s dressed up as the Easter Bunny, Santa Claus, and put his gold teeth in and given us an original rap.  It’s given my family and I many memories and much laughter and it’s shown me the only way to remain young while growing old is to let loose and have some fun. 

5.    Managing and Working in a Garden: This one is probably the dearest

and most precious thing he’s taught me.  He’s instilled in me a love of putting out a garden and seeing the fruit of the labor we put into it.  There’s been many mornings I’ve gotten up as the sun was rising to help my grandpa pick green beans or corn.  It’s one of my favorite things to do and it's become our thing.  Each year he adds another process to putting out a garden to teach me and this year he’ll be teaching me the planting, tilling, and plowing.  I truly feel honored because I feel like by learning this skill, I’ll be able to carry the legacy of something my grandpa is passionate about and is known for.

        

There’s so many things I could share about this one of a kind man, but this blog post would then be 100 pages long.  I just hope I’ve conveyed the impact he has had on this earth for the last 80 years.  He’s had many wonderful and exciting adventures during his journey, but I have a feeling the best is yet to come for this husband, father, brother, uncle, my Grandpa— The Original Beanie Baby. 

Don’t Mess with the Mama Bear

         A few weeks ago, I participated in the Immune Deficiency Foundation’s Advocacy Day.  The funny thing is when you have a chronic illness, your entire life is about advocacy— Advocating for yourself in your social circle for people to see you as an equal, advocating for yourself in your family so they will see you as an independent person and not fragile, and advocating for yourself with your specialists to receive the best possible care.

         The thing is no one with an illness automatically knows how to advocate for themselves, they have to learn it.  How do they learn it?  Three words— Mom and Dad.  One of my favorite stories of my mother advocating for me was when I was at the ripe old age of three.

         Even at three years old I battled chronic and severe ear and sinus infections.  My otolaryngologist was a brilliant, world renowned doctor who even created a new way to preform sinus surgeries.  The only problem was he didn’t have the best bedside manner, which is putting it very nicely.

         On this particular day my ear was in terrible shape.  My doctor decided the infection inside needed to come out. My mom, sister, family friend, and I were taken to a procedure room. Without any warning, my specialist and a nurse came into the room with no word to my mother or me.  He came towards me with a long instrument that had sharp point at the end.

         My mother wasn’t happy with the situation, but she stayed calm to keep me from falling apart.  The doctor and nurse laid me down on the table and the nurse straddled me so I wouldn’t move and damage my ear drum while the sharp instrument was in my ear.

         From the time my specialist and nurse came into the room, until the time the instrument was in my ear, I didn’t scream, cry, nor throw a fit.  I just whimpered and trembled with fear over what I was being put through.  After the procedure was over, my doctor pointed his finger in my face, “You have whined and cried since the moment you got here,” he looked at the nurse, “Get her out of here.”

         This was the breaking point for my mother.  She immediately turned from a calm golden retriever trying to keep the peace, to a roaring mama bear ready to take out the predator who would dare hurt her cub.

         My mom turned to our family friend, “No, you will take the girls out, I need to speak with the doctor.”  There was no denying my mother’s message or meaning.

“You’re not happy with me, are you?”

“No, I’m most certainly not happy with you.  You bring us into this procedure room, you come at Whitney with a long sharp instrument, not telling her what you’re going to do, this nurse straddles Whitney, and you don’t even consult me about this procedure you preformed.  Whitney didn’t throw a fit, she didn’t scream or cry.  She just whimpered and trembled because she was so scared. Then you have the nerve to talk to her the way you just did?!  That is not acceptable.”

“Well, I’m sorry,” my doctor said thinking everything was settled.

“I’m not the person you need to tell, you’ll be telling Whitney that.”

And as you know, no one argues with a mother who is advocating for her child.  Even though I was young, it taught me how I need to advocate for myself in every area of my life as an adult who has a Primary Immune Deficiency.  I don’t deserve to be disrespected or belittled by anyone.  My parents showed me every time they went to bat for me that I have purpose, I have worth, and I have something to offer this world.

So, parents who have a child with a chronic illness, I can’t stress this enough: advocate for your child.  Advocating can be difficult, it can be awkward, and it can be confrontational, but I can promise you this— if you advocate for them, they’ll learn how to advocate for themselves as an adult and they’ll know they have purpose, worth, and something to offer this world.