There are certain people that come into your life who have words so powerful that you can’t get them out of your mind. They don’t mean to be so prophetic, but with no intention on their part, a single phrase becomes ingrained in your heart.
I was talking to another nGD mom a week or so ago who was having to face a very difficult decision, one that I have feared that I would have to face since we got Hannah’s diagnosis 14 months ago. It came down to how much medical intervention would we, as parents, put our children through in order to keep them with us versus how much quality of life would it give them.
I did not know what decision she and her husband would make at the end of the conversation, but I stayed up all night long thinking about it, what if it was Hannah I had to make that decision for? What would she decide? What would I decide? I had prepared myself for whatever decision they made, because unless you are in that child-specific situation, there is no judgment that can be made. Honestly, I was as torn as she was.
She made the comment to me about just needing to see her daughter smile again to know that it was the right decision to go ahead with the invasive medical intervention.
Almost as if was planned, Hannah crawled over to me at my desk, and she just sat there with a big smile on her face looking at me. A true “I am happy, mommy” smile. Then it hit me. THAT right there is why I make the decisions I do for Hannah. THAT is why I work so hard to get her therapies, specialists, and equipment that will help her.
I want to see that smile, all of the time. No, I NEED to see that smile. Hannah’s smile is what keeps me going every single day. She may not be able to talk or walk or put a toy “in” a box. But she smiles, at me. She hugs me with a tight grip as if I am the most important thing in the world to her. She lights up when I walk in the room after being away for a short time.
It is her smile that keeps me fighting for her.
The mom just posted a picture of her daughter in the hospital yesterday…not in any distress, comfortable, and yes, smiling. After seeing that picture of her little girl smiling, I know she
made the right decision for her.
Hannah, 19 months, smiling
And what a beautiful smile she has! Just like her Mommy!
So true. I ponder this decision as well and hope I never have to make the decision.
It breaks my heart that so many families have to work through gut-wrenching decisions like these. 🙁 I’ve said it many times before, but I’ll say (pout) it again: it’s not fair.
PS – Hannah is beautiful and I love seeing how much she can do!
.-= Cristina´s last blog ..Another tear =-.
Miss Hannah is just doing things HER way and HER own time, her smile is a true blessing!