That girl has HUGE hands!!!

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If we do not share our stories, our struggles, our desire for better treatment management and tools for this chronic disease… who will? If we do not share our plight, share about this disease that overcomes and takes over your entire being…who will? 24/7 management. Constant observance of skin integrity & progression or reduction of fluid. Constant mindfulness of diet, lifestyle choices, clothing choices, weather….all the way down to something as simple as a scratch. If we don’t share our stories. Share the biggest picture- that this doesn’t have a simple cure and the devastating truth is that it does get worse and can take your independence away because we ALL age. We all grow old. We all grow tired and so does the lymphatic system… it’s one of the first to slip…my heart breaks for a new friend who unknowingly found her “good leg” was also affected and I knew the worry already in her eyes because it’s in all of our eyes. As a parent I worry about anything happening to me because I AM the most knowledgeable person in this world on Coras condition. I still spend hours late at night researching options and published research papers…as of now. It’s a dead end because she is NOT typical. To be a parent and worry will Cora find someone to help her when I’m grey and gone? How will she manage 4 swollen limbs alone? How will she work? How will she afford thousands of dollars worth if garments every 3-6 months?! Lymphedema is such a complicated disease. Full with complicated side effects. It’s a hidden disease that lurks and at times doesn’t outwardly show it’s pain, discomfort & severity. Top it off with the biggest truth- it’s just truly starting to be discovered and researched and we are just starting to understand it’s true connection is integrated within our entire body’s system. It’s the start of it all. Your text books in high school- you won’t see it. That anatomy class you took a couple years ago in nursing school- nope. Doctors barely touch base in their education. The lymphatic system isn’t anything new though…

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“That girl has HUGE hands!”- that statement…. it sparks anger in the very depths of my soul- my husband included.

I’m not sure if anger is the best word. Sadness? Despair? I mean it’s just a statement right?! No… it’s the constant reminder wherever we go– we might act normal, happy and full of life but the truth is Cora has a chronic progressive disease that as of today: manifests new symptoms about every 6-12 months depending on her growth spurts. Symptoms we were told wouldn’t be expected until puberty
It’s a very heavy, constant, consistent weight of worry.

Speaking for my husband and I- the mourning period for this realization never ends.

Every day gives us a reminder of the things we won’t ever be able to GIVE Cora Jean. It’s a constant slap against the face. The worry wondering about if she can handle school, bullies and the increasing pressures and expectations even the most normal people cave under- let alone manage the 24/7 constant unrelenting and often times suffocating care needed. How will she manage puberty, self acceptance & self esteem?

Will she be able to wrap all 4 limbs? Will she need her own PCA? Will insurance cover that? What about when she turns 26 and is kicked off our insurance? All the way down to things I worry about as a woman & a mother- will she be able to have children? A sex life? Her growing Genital Lymphedema and accompanying Lymphatic Malformations are so RARE that the only option at this moment (When they are finally too much for her to handle)- total excision of that area. Things most mother’s don’t even have to think about- if they chose not to.

Life is full of those constant reminders. Ill fitting clothes, alterations…Let alone just navigating the regular stressors of life & toddlerhood (well I guess preschooler hood now)….and preschool!!! Don’t get me started!!!

Coras coat was altered by a seamstress. We rip the seam from the armpit to the sleeve and replace it with a zipper so her hands will fit. Recently her forearm is posing an issue too even with a zipper. Coras gloves? Socks. Heat holder socks- not even adult gloves fit her. It usually take around 15 minutes to an hour to dress for winter- it results in an emotional melt down every time.

Every time —Cora Jean goes into public she is asked about her hands, some go as far as to try and grab or touch them.

Adults will stop what they are doing and stare.

Some adults will walk up to us using their professional title to explain why they were curious.

Some will tell me what’s wrong.

Some will give good accurate tips.

Some will stop me asking me to take the rubber bands off of her hands.

Some will ask us what other handicaps she may have or tell us innocently they are happy their child gets to experience someone “different

Some will glare like I’ve done harm to Cora.

Many times kids won’t play with Cora or avoid her.

Some will pull their children away glaring like Cora has a communicable disease.

Some adults will let their children laugh and mock Cora.

Some will shush their child or shame them for asking questions.

One very sweet little boy asked if Cora Jean had “owies” and gave her a hug.

Multiple strangers have adorned Cora with gifts , words of encouragement…endearments saying she’s adorable.

I see all of this. We see all of this. We can’t escape it. Cora Jean knows these questions as her normal. She knows now- people don’t always understand things and because of that they say the wrong things.

Cora is taught to love & be kind.

These reactions, statements, the kids who run up to touch her or yell loudly about her condition. Every time we go out- she is the one suffering the most. She suffers if we lash back in anger, resentment, or hate. She suffers if we hide her. She suffers if we ignore it for our own “self preservation“ or longing to “just be normal”.

Normal is boring anyways.

Negativity would be the mentality EASIEST to dissolve into

The truth is- many of our mundane life activities have some sort of negative to them if you really choose to look. Being negative is natural, easy…

It’s easier to fall victim then to take that negative and challenge it.

We choose to challenge it.

After diagnosis I fought even proving to my amazing loving family members –

Cora’s disease wouldn’t be something we would find a miracle cure for or a fix. She wouldn’t grow out of this. I’d simply explain to them that it’s very hard to fix something your born without- and Cora’s little body fights every day to make up for what it lacks.

I had to explain that we couldn’t go to Jamaica with the family because:

  • There is NO hospital available (let alone educated doctors)
  • In past instances Cora’s developed cellulitis in less than 2 hours after very minimal signs or reddening of her skin.
  • Not to mention any extra money we do have (besides our only ever splurge a Polaris Ranger for family off road trips *- everything goes to Cora’s medical savings.

I knew the challenges. Even now with Cora’s severity growing. Even the tiniest bump or bit-lip causes her little Microcystic Lymphangiomas (Lymphatic vesicles) to appear and grow.

It is SO EASY to be negative

In my quiet moments (and doing daycare at around 70 hours per week doesn’t give me many) BUT I do submit to it at times. I quiet my negative thoughts with advocation, research and planning for Cora. Doing more. Always trying to see a bigger picture.

It takes a conscious choice…

The first few instances of negativity in public with Cora Jean- both my husband and I were quiet. We went home, I got Cora down for bed and not being able to sleep I researched her condition and read scientific publications and articles. I decided at that moment being NEGATIVE wouldn’t do Cora justice.

Being negative would promote more negativity. Less education. The only awareness given would to give a negative impression to the ignorant person we encountered- on anyone they encountered different from them.

As for the parents who stared and watched their child make fun of Cora- I could teach the child right. In turn, making an example their parent wouldn’t forget.

As for the rest openly questioning in a rude or friendly-ish manner- I’d welcome them with open arms.

The absolutely negative assholes? I’d kill them with kindness, because I KNOW the next time they go to make a comment to the next person (expecting negativity) they would remember the time they were embraced by love, warmth & kindness after their behavior.

So we tried it

The Lymphedema Treatment Act has an amazing tool page where you can order business sizes cards, pamphlets… fact sheets all on Lymphedema. You can find them here.

I made up a little package of a card or pamphlet and added an awareness bracelet with a hashtag #thelittlelymphie -to Cora’s story on it. I put them in our diaper bag, my purse, glovebox and pretty much anywhere I could remember so I always had them.

I got really bold

If I saw someone staring blatantly- I’d start the conversation:

I hello I saw you staring at my daughters hands, she has a rare chronic disease called Primary Lymphedema LET ME TELL YOU ABOUT IT. (Pulls out little awareness package )

If a child questioned us:

Hello! I’m glad you asked this is Cora Jean and she loves to make friends. Cora has Lymphedema. Everyone has little pipes under their skin that helps you fight diseases, heal from booboos and transport all the yuckies. Coras missing part of hers and it leaves her hands full of stuff kinda like water. You can’t get it but you know what you can have- one of these cool bracelets! (Pulls out little awareness package)

If a child questioned their parent (usually parent freaks out):

Hey it’s ok! We love questions and kids are really curious by nature! No need to get mad! This is how we all learn and we love to make friends! Cora does look a little different because she has Lymphedema…… (and pulls out little package)

And yes… some people want to be rude and try to run:

If you try this I promise I will find you and annoyingly educate you!

We mess up but we TRY

***Once, two kids openly mocked, followed, & made fun of Cora…my husband found the father & told them all:

Cora Jean has a disease called Primary Lymphedema and if he (the father) had a shred of common sense he’d educate them using his phone and google and not let his kids be assholes to a little girl they know nothing about -who’s trying to have a good day.

—— see we aren’t perfect… at all. ***

I even lost my temper with the production team who filmed a documentary on Cora’s Journey . After knowing what we go through- just for sensationalism & to boost views (I knew they would pull something) they chose to title the documentary…. My Child’s Huge Hands. Also- allowed her photos for multiple internet tabloids with various misleading titles such as “toddler forced to have surgery” with an image of Cora covering her face looking victimized.

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PART 1: I am irate. Since Coras birth I’ve always vowed to myself that I would do everything I can to be her biggest advocate. I found out quick so much was not known about her condition. I’ve learned to fight doctors, relentlessly push, and advocate for her. Shortly after opening up about Cora's story almost a year ago. I was approached by a production team who produces shows for Discovery Channel and TLC. Based out of Great Britain. They were interested in Cora’s story and her rare condition for a series they called “Body Bizarre” they were quick to tell me they didn’t pick the name for the show but it highlights medical rarities and helps spread awareness in a VERY respectful and tasteful manner. They told me many of their participants have been able to find more doctors and more help by agreeing to share their story. Opening up treatment avenues they never had before. I had a lot of reserves about this. Many sleepless nights.Was it my story to tell? Was this even my choice? I thought long on hard and ensured during the entire production Coras diagnosis, medical treatment, and life during filming she was respected and protected.My husband and I decided to share her story to help advocate for others with rare disease, others with Lymphedema or Primary Lymphedema, to show others how beautiful being different is. To show the struggles we face in the medical field.

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This is a whole different story but in the end- I choose to see it raised awareness and I still receive multiple messages conveying that, positivity & and a general caring demeanor for Coras health from people overseas who’ve viewed the show. — it’s not released in the US yet.

It’s NOT fail-proof or always easy! It’s a choice!

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Best friends ❤️

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The results?

  • Most of the time we handle it in an educational & friendly manner:
    • We show Cora how to advocate for herself.
    • Cora likes to talk to others about her “Limfuhdeema”
      • At the Minnesota Zoo Cora met two little boys who were shy. They avoided her because they didn’t know how to approach her with her hands. She pretty much cornered them in this play tunnel and said “hey want to be friends!!!- going on to explain she has Lymphedema and successfully made two friends!
  • Many times people are amazed.
    • This teaches Cora the value of kindness and not to be shy! Sharing her story helps other kids just like her!
  • We don’t avoid or hide her disease from her or others. Her routine is just part of life.
    • This teaches Cora normality. This is teaching Cora we openly accept, love and will fight for HER.
  • We spread more positivity in what can seem a very negative world.
    • This also spreads awareness for all differences in the world & awareness for a rare and highly under educated disease.

So YES- Cora Jean does have huge hands

But she has an even bigger heart and a loving family standing next to her. We will use these “big hands” to fight ignorance, spread love & awareness.

Because at the end of the day- we choose the good, the positive and the harder path for the betterment of everyone.

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Well #Lymphedema family I accidentally told Cora the #lymphie secret… I finally had to tell her why #lymphedema is so special. You see- little Cora was afraid the other day of people staring at her and “friends” not wanting to play with her. I figured this was a good time to let the cat out the bag 🐱. I cuddled Cora and told her the secret #superpower all lymphies hide that makes her SO special. You see all #littlelymphies and #biglymphies are born with it- some without #lymphedema are too but lymphies truly know how much this superpower means. I finally told Cora about the huge great big superpower from her Lymphedema. The superpower of #kindness. How no matter how #scary, #mean, #big or #different a situation can be. Using her #kindnesssuperpower would make it all better. How even if a person or a friend was mean to her if she used her #secretlymphedemasuperpower she would be able to make the situation better. I even spilt the beans by letter her know that the most #powerful thing about her kindness superpower was that she can use it and give it to others who didn’t have it and help them be #happy. Then they could take the superpower and give it to others to make them happy. How even if someone was mean she could give them some of her superpower and maybe not at that moment but very soon they too would grow their #kindnesssuperpower too because hiding her #primarylymphedema & ultimately herself would just take away from the happy she and everyone else could have together. I explained that if she was really good at using her superpower she could make lots of friends and help others see the importance of everyone being #different in ways that some can see and some cannot. Because #differentisbeautiful and no one needs to be anything other than themselves to be loved. #thelittlelymphie #lymphedema #lymphedemawarrior #lymphedemaawareness #primarylymphedema #raredisease #rarediseaseawareness #shareyourrare

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2 Comments Add yours

  1. Wonderful post, Kasey! You’re right: people can’t help but be curious. What motivates that curiosity (compassion, fear, ignorance) is another story… but your solution of the informational packets is such a great, effective way to address that curiosity and spread some much-needed awareness. I so admire you and your husband for all you do — Cora, too! xxox


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