• Our Mission

    Our Mission

    Our mission at PCD Smiles is to bring smiles to hospitalized primary ciliary dyskinesia, no mater their age; through the gift of a cheer package. Currently serving only The United States and Canada.
  • Request Cheer Package

    Request Cheer Package

    Know of a hospitalized primary ciliary dyskinesia patient? Please visit our “Request a Cheer Package” link and fill out our secured form to submit them for a cheer package today!
  • Donations

    Donations

    Our cheer package program runs on donations. To see how you can help PCD Smiles, visit our donations section today!
  • The PCD Artist Project is a collaborative effort by artist to raise awareness for PCD & support the PCD Smiles cheer package program. Visit our exhibits today!

These are the words that stuck with me this year. As a person with PCD, the word “but” is a word that comes up pretty consistently in my life. I never realized, until this past year, how much this word actually impacts my life. PCD is a progressive disease, it only gets worse with time, and the more that time passes, the more “buts” you get to hear.

“ I know you love it, but...

... you should probably to stop investing all this time in athletics. ... you can’t take your treatments with you.

... Is that career actually realistic considering your health?

... Maybe you should stick to artistic, low impact activities.”

Since a young child I have been told to change my interests, give up on my passions, and limit my dreams. Now, as an adult, I have started telling these things to myself. Stuck in a cycle of finding a passion, and then realizing it is too hard to manage with PCD. So, I give it up. I stop trying to adapt to the things I love in the world, and start accepting that this world is not set up for people like me.

The word “but” has not only impacted my life though. It also affects the people in my life.

“I know you love her, but...

... do you really want to commit your life to someone who is so sick? ... it is just too hard to plan a trip around her illness.”

... I don’t want you playing with her. What if you get sick?

... I don’t want you to get hurt when she dies.

Parents worry about their kids making a strong connection to someone who may not be around long. They worry about catching the sickness, or their kids being limited to activities only I can do. My mother-in-law wasn't sure about me being with her son, as I will make his life more difficult. The word “but” follows me everywhere, in all aspects of my life. Although, there is one “but” that rang in my ears all year.

“I love you, but I am not getting vaccinated.”

When my mother said these words to me, I did not hear what she said, instead I heard, “I love you, but not enough to help you, or to be around you.” These words from the woman who said she loves me unconditionally, cut deep. Suddenly it felt as if her love was conditional. That although she loves me, she just doesn’t have room to love the part of me that I can never change.

I know it sounds strange to be hurt, that it feels like she does not love my PCD. PCD is a part of me though. It has been a focal point in my life. I was raised to take PCD into consideration for  almost everything I do. To hate PCD is to hate a part of myself. I long ago decided I needed to learn to love it, or at least accept it. So, to hear my mother say that. It felt like she was looking at all the parts of me, and deciding which ones to put in the “love” or “hate” column. Now, looking back, I realized that this feeling of people hating a part of me, has loomed over my life.

Living with a chronic illness is not only about the symptoms, but the way it ripples into our lives. It impacts our relationship with ourselves, with others, and with the world around us. This year, living with PCD has taught me that I truly am my own advocate. I am in charge of my life and my health. I am the one who gets to decide what and who to love. PCD is a part of me, I am not PCD. “But”s no longer have to be my life. I never have to tell myself “but”. Instead I can push forward, and choose myself, my happiness, and my quality of life.

So to my mother,

“I love you, but I love myself more, for everything I am, unconditionally, forever.”

Be sure to visit us next week for another Topic Thursday!

Join our Facebook group Turtle Talk Café today, click here.

We have several ways that you can donate to PCD Smiles;

- Visit Smile E. Turtle's Amazon Wishlist

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies.

- Or sponsor a PCD Smiles cheer package today!

- To shop for your “Official” turtle care ribbon gear today, visit PCD Style or Smile E. Cove

Thank you for your consideration!

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