So #BeautifulBrooklyn has been lying in a hospital bed for over 500 days.
We are grateful that she is alive but often wonder if her living is living at all.
Everyday she stares at the 4 walls of her room and all she knows is hospital. The conversation keeps returning to whether we want quality or quantity of life for her. In the words of Dr. Scott,
"whatever you decide is the right answer,"
but it never, ever feels that way. As the doctors share the heartbreaking news that Brooky's heart is deteriorating even more, we (mainly Sheltaya) have to make this horrible decision.
We have worked through a lot of the scenarios, talked about who to call in an emergency, and even considered signing a DNR for our precious princess.
By the way, how unfair is it to have to even consider signing a DNR for a baby? Who deals with that?
Anyhoo the quality vs quantity statement makes us cringe, but it is where we are. This is one of the worst decisions anyone will ever have to make.
Do you take your baby home and give her all the experiences possible in her little time here, or do you keep her in the hospital where she won't experience anything, but she has access to life sustaining technological advances that can possibly extend her life? it's a horrible choice when you're tasked with making it.
We struggle everyday as we seek out nurses to at least let her see the zoo, and the aviary and the amusement parks in the area. As we imagine her walking, playing and running with other children. Even if she has to ride along in her little teeny tiny wheel chair, we'd love to just see her laugh uncontrollably while having the time of her life.
I share this transparent moment to implore parents to take in every experience with their children. Go to the park, the zoo, the science center. Enjoy the 2 hour line at the amusement park and the overzealous kids at the movie theater. Go to the drive in, the skating rink and the ball games and cherish every single moment. Love hard because life is short and tomorrow is not promised.
As you make memories with your family please remember Sheltaya and Beautiful Brooklyn and do a random act of kindness for someone else. We would love for Brooks legacy to be random kind acts taking place all over the world.