Facebook Users Encourage Dying Little Girl to Live Her Life
You may remember the story I wrote a while back about a little girl named Julianna Snow with a terminal illness who chose "heaven" over the "hospital" when her mom presented the choices to her.
I took exception with this, because I feel like a five-year old shouldn't be making life-or-death decisions based on her parents' religious teachings. (Or really for any reason; after all, she's five.)
And now, there's an outpouring of support for the little girl encouraging her to choose life.
A Facebook page called Dear Julianna has been put together that handles this situation much more delicately than I could. It's full of letters of encouragement from adults who suffer similar neuro-muscular disabilities.
One of the letters comes from a friend of my daughter. She's a working artist who had a lot of great encouragement for the little girl. It's a very powerful letter about all of the things that this little girl could be missing out on.
With that, I'm going to have to let Miss Ali Ramos take over, because I've got something in my eyes.
Here's the message:
Did you have a fun Halloween? I know I did! Holidays are always great when there’s food involved and if you get to dress up as a princess. It doesn’t have to be just Halloween though when you put on a pretty dress, and I think you know that.
I am 28 years old and have had Muscular Dystrophy since I was diagnosed as a baby, just like you! I got married to the love of my life a year ago in a museum. We were even able to take pictures in from of the dinosaurs! It was so neat! My husband and I now live with a pack of dogs in our own house. I get to decorate it however I want it. I bet you got to decorate your room too! I work as a graphic designer now. That means I get to draw all day just for fun AND make some money while I’m at it! It’s the perk of being an adult.
It’s really scary to go to the hospital while you’re having a hard time breathing. I understand. When I was 12 years old, I had to go because I had pneumonia. I also have to be suctioned through my nose which was awful! I just couldn’t seem to get any better and had to end up getting a trach with a ventilator. Once that happened, my life improved a lot. My energy was high and it didn’t hurt to suction anymore! I hooked the ventilator up to the back of my wheelchair and was able to go to school, church, and wherever else my friends would go. I like to call myself a neck breather.
Three years ago I challenged myself and decided that I was going to try and stop using the breathing machine during the day. Before that, I was on it for 24/7 for 12 years. I was able to wean off of it in a week and only use it at night. With this disease, we aren’t textbook model patients. We’re people who can defy all odds and live the life that we were intended.
I see that you’d like to go and meet God. We all do. We also have a lot to accomplish while we’re here on earth. You’re a beautiful little girl with an incredible imagination! This disease may not be curable, but it sure is adaptable. You’ll meet God one day, for sure. You just have so many adventures ahead of you! Please live them!
Photo collage (starting clockwise):
1. Ali dressed up as a clown for Halloween at age 2 in a red white and blue clown costume and hat.
2. Ali at age 16 and her friend Kristy dressed up as old women for Halloween. Ali has curlers with red cover, black glasses, and a night gown with a toy dog in her wheelchair with her trache visible. Her friend Kristy is standing beside her in a nightgown and shawl.
3. Ali at age 26 at her engagement photoshoot at the Panhandle Plains Historical Museum in the pioneer town section. Ali is seated in her wheelchair in a colorful shirt and a white scarf covering her trache. She is in her wheelchair holding a glass of wine smiling. Her (now) husband, Guillermo, is standing to her right in a white shirt and jeans smiling. There is a wooden house and a backdrop of a sunset behind them.
4. Ali at age 27 at wedding day after ceremony at the Museum with an allosaurus dinosaur in the background. Ali is in her white wedding dress with her trache visible in her wheelchair with a bouquet of red white and pink flowers. Her husband is in gray pants and vest with a white shirt and turquoise tie. He has his hands in the air. Both are making goofy faces.
5. Ali at age 23 with her two friends, Megan and Sarah at a Sears portrait studio taking a silly Christmas photo. Sara is in her wheelchair in a green elf hat and scarf covering her trache. She is wearing a Christmas sweater vest and smiling. Her two friends are behind her in an embrace. On is dressed in black in a Santa hat, the other in a green sparkly sweater and candy cane antlers smiling. There is a fireplace mantle backdrop behind them