It’s so weird being an Aunt to 11 nieces and nephews, watching them grow up and begin to express their hopes and dreams. I can't help but think about being that innocent child once—unscarred, no disease, and never hearing the word ostomy.
I knew the word Crohn’s as a child because my dad has it, but what would I tell this little girl in the picture about life with an ostomy? I often find myself wishing I could tell my younger self some things.
1. I would tell her the first time she hears the word “ostomy” it will be totally overwhelming.
Many doctors misdiagnosed me, but in the end it was Crohn's that resulted in 14 surgeries over a 12 year span. My body changed and now I have permanent ileostomy, but it doesn’t define who I am. I would tell this beautiful girl to wear those scars as badges of honor, because she will gain so much life from the organ she lost.
2. I would tell her that the term, "extra baggage" would take on a whole new meaning.
“Bag lady” will be another relatable phrase. I actually own the most expensive designer bag, my “Poui-Vuitton.” And by the way young me, that life you’re dreaming about is not going to include your butthole (hahaha). It helps to find some humor in difficult situations.
3. I would explain to her that feeling depressed is normal.
Scary as it sounds, there were moments in my life where thoughts of suicide actually brought a comforting feeling. I remember saying, "I can't do this anymore... I don't want to fight anymore!" I almost died (twice), but somehow stayed alive. This young girl will depend on her parents, her younger sister, and very close friends to navigate through these absolutely terrifying feelings. You will find the courage to face the darkest of days.
4. I would tell her to not to fear or take one moment for granted.
When I’m afraid, or negative, I pull back from life. Fear of the unknown was a constant occurrence when I was a new ostomate. I really want to tell my younger self not to fear… you will graduate college, you will marry the man of your dreams, you will meet the most amazing people who will impact your life in major ways. Stay positive and be open to all that life has to offer.
5. I would tell her that being imperfect is way better!
Whenever I felt jealous, giving myself pep talks in the mirror and having dance parties were some of the best ‘pick me up's’ ever! Continue to smile, pray constantly, be thankful, be present, and most of all don't worry about being perfect. Your biggest achievement in life won’t be potty training, or being popular, or a business woman. It’s most important to be a positive role model.
And finally, the worst nightmare you feared (an ostomy) will end up being the biggest miracle you’ve been praying for because God has a very special plan for you.