Tag Archives: cure

Moving on…

How did you choose what to do after high school? Did anyone provide valuable advice which influenced your decision?

This is the next prompt from Carla at AllofMeNow, who is running the Mom Before Mom series that I’ve been writing each weekend. I LOVE these pieces- initially because they allowed me the time to reflect, but now because they give me the right to feel things I didn’t get a chance to as a child.

I had always known that I would go to college. I dreamt of becoming a flight attendant, and then of being a doctor. The doctor thing stuck with me for a while. I was going to cure cancer. My cousin had died at 18 of Hodgkin’s Lymphoma and I was going to stop it from ever happening again.

Then my Dad died. April 21, 1998 I had more than just bad dreams to battle, I had the dreams of a child crushed under the weight of fluid filled lungs and a 6’1″ man residing in a cold bed, now housing a 140 pound body. It sounds graphic. It might have been. Regardless, he was gone and I could never face my dreams again.

So… I did what lots of girls do- I tried to find my Dad. I didn’t go around to boys looking for them to be daddy, I dated boys who had strong dads who would protect me and love me as their own. They helped shape me into the woman I became- some offering advice on how to throw a punch, some telling me tales of how to write a good cover letter. It was all encompassing of my father, who would have shown me and told me how to do everything from reducing the swelling on a bruised knee, to building my own computer and how to french-braid my own hair.

You’re wondering how this has anything to do with my post-high school life? Let’s call him Mer. Mer and I had a relationship- he’d graduated from a college in Rhode Island earlier in the year we’d met, that I later graduated from as well. Prior to my application, acceptance, scholarship, over-achievement and early commencement, I was lost. My whole life I was going to cure cancer, but as I moved into my later teen years, I learned to accept the fact that I had no ability to separate myself from feeling. Six years of schooling, grueling nights working on a cadaver, no sleep, little money, insurance risks- all this meant nothing. What stopped me from accepting the obligation I’d laid upon myself 5 years prior to my high school graduation- to cure cancer- was the fact that I could not tell a child they were going to lose their parent.

So, as I held onto my high school job of working in a kitchen and found I loved planning events (I’d even been so blessed as to need to color code and list most aspects of my life), and Mer told me all about Johnson & Wales University, I knew I had my next step planned. Done and done.

It sounds so silly… how I got there, what it meant. I’ve done very little with my degree since 2008- I graduated in 2006. I learned a lot about the non-profit sector, and that’s been helpful… but I was meant to change things. Big things. I wasn’t just meant to plan weddings… which, by the way, I love! I have a wedding coming up in September, and I am SO glad to be back in the saddle (two weddings in two years can make a planner want more more more), but beyond that… I have a larger goal, a longer stride, a destiny to make a difference.

I’ve awoken in a cold sweat more than once, swearing that I was 13 again standing at the side of my father’s bed rattling off a litany of medications and therapies, transfusions and a test for… but I wake up. Before I can hear myself breathing as though I’ve just run a marathon, there is a high-pitched beep in my ear signifying a flat line. They’re all dead. My cousin, my Dad. Thousands of patients I didn’t save.

It sounds morbid, but perhaps it’s what led me to now. If I had gone to med school, I would have been confined to a lab, spending years of my life fighting to cure something I truly believe the pharmaceutical companies don’t want to cure (this is a whole other topic about conspiracy that I firmly believe in). I wish I could know my cousin now- she would be 34… I wish my Dad had walked me down the aisle at my wedding… but who would I have married? Where would I have graduated from? Forget college… I never would have gone to Upper Moreland. I would have been a Spring Side-er. I would have been a normal kid, whatever that means. I would not have met Dave and we never would have had Addie.

Because it’s Sunday, I’ll say it: I chose what to do after high school because I believe God has a plan. Is it the God hanging, bloody on the wooden cross in my Catholic church? Maybe not. Maybe it’s really the Messiah and we’re still waiting, maybe it’s just the idea that something besides our selfish souls and a boy named Mer controls where we end up.

There is a path, and it led me here. To Dave, to Addie, to writing.

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You Educated Yourself AND Won $25!

Thank you so much to Lynn- our winner- for educating herself and others about dwarfism! Lynn is mom to a LP, too!

This cute face wants to thank everyone who joined in the effort to educate people about dwarfism, and will continue to do so!

You Liked AisForAdelaide and Understanding Dwarfism, and that won you $25! (I’m sure you already knew this, as I emailed you, but I figured I would share it with the world!) I am quite excited for all the LIKEs we received, and I hope that everyone continues down this path of education! Becoming aware is the first step to understanding more about LP.

October is Dwarfism Awareness Month and I am hoping that Lynn, and you, my lovely readers keep spreading the knowledge!

A few things to remember:

* There are over 200 types of dwarfism. Achondroplasia (what Addie has) is the most common.
* Over 80% of people with dwarfism have average height (AH) parents and siblings.
* It is very rare to have any type of mental impairment with dwarfism– I made this bold because many people have come up to me and shared their apologies and compared her to being autistic. When I say many, I mean more than 10. While I do understand people are trying to learn, please know that dwarfism is not related to autism.
* Preferred terminology: “little person” “short stature” “dwarf” “having dwarfism”. The word “midget” is slang, antiquated and will not be tolerated by myself, my husband, my family or anyone we know.
* People with dwarfism are able to do the same things as average height people, perhaps with some adjustments- but just as capable.

Please know that we are not looking for a cure. There is nothing wrong with Addie, or any other child or adult with dwarfism. She is beautiful, happy and perfect. Simply, like other little people, she is just small. She may need surgery in the future, but many people get surgery. A lot of people ask me if there is a cure, there isn’t. How can you cure her from nothing?

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