It is such a privilege being an aunt to 11 nieces and nephews. Watching each of them grow up expressing their hopes and dreams is so inspiring. I can't help but think about a time when I was once young and optimistic about the future — unscarred, no disease, and never knowing the word ostomy. As a child, I learned about Crohn’s disease since my dad had it but never imagined that I'd have to go through 14 surgeries in a 12-year span because of it.
So, what would I tell this little girl in the picture about life as an ostomate?
1. The first time she hears the word “ostomy” it will be totally overwhelming.
I was misdiagnosed by many doctors but in the end, it was Crohn's that resulted in a 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. The words "bag lady" will take on a whole new meaning.
I actually own the most expensive designer bag, my Poui-Vuitton. And by the way younger me, that life you’re dreaming about is not going to include your butthole! HAHA, it helps to find humor in difficult situations.
3. I'd explain to her that feeling depressed is normal.
Scary as it sounds, there were moments in my life where thoughts of suicide actually brought me a feeling of comfort. I remember saying, "I can't live like this anymore... I don't want an ostomy 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 terrifying feelings. You will find the courage to face your darkest days.
4. I would let her know there's nothing to fear.
When I’m afraid or negative, I tend to pull back from life. Fear of the unknown was constant when I was a new ostomate. I really want to tell her not to fear the future… 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. The worst nightmare you feared (an ostomy) will end up being the biggest miracle you’ve been praying for. God has a very special plan for you.
5. Embrace being different!
Continue to smile, pray constantly, be thankful, be present, and most of all don't worry about being perfect or fitting in. Your biggest achievement in life won’t be potty training or riding a bike or being popular. Embrace being different. Being different means that you can make a difference, and that's ultimately what you were born to do.