I was driving home after a really long shoot capturing a day in the life of a 3-year-old brain injured boy, we will call “Leo.”
I was looking at the sunset, thinking about the beauty of the world, when I became instantly aware of my effortless breathing, in and out, something Leo could not do. I thought about my ability to swallow, my ability to comprehend, my hands controlling the steering wheel, my eyes that see, my ears that hear, and then I felt the tears. All of these things, Leo could not do. Not even cry, or laugh or smile. I became so overwhelmed with grief and gratitude, tears rolled down my cheeks for what seemed like an hour. I thought to myself, so many people will never experience this. So many people will never learn the lessons I’ve learned from birth injured children. So many people will take this day for granted, and not for a second will they be grateful to breathe, to think, to hold, to talk, to walk, much less run. Gratitude is the number one lesson I’ve learned from brain injured children (and their parents).
They’ve taught me what it means to fight. Brain injured children and their parents fight for their lives everyday. The parent’s of these children suction their mouths and noses, so they can breathe. They prepare and replace feeding tubes all day long and into the night. They need medication several times a day. To sit up, they need a special chair. To take steps, another special chair. These parents know what it means to fight for their children. The fight never ends. Spend a few hours with these families, and you’ll realize everything you’ve ever fought for pales in comparison.
I’ve also learned what it means to love. Unconditional love is the most beautiful thing in the world. Not everyone will experience it. But when I see a parent look at their brain injured baby’s face, really look at them, I see unconditional love on their faces. They do not see what the child cannot do. They do not see the unjustness of how their child ended up this way. They do wallow in how hard it is to care for them –all they feel is unconditional love. These parent’s will do whatever it takes to give their child the best possible life. Their biggest fear, is losing them. Inevitably, birth injured children die too soon.
My final thought for this blog is “selflessness.” Before I became a mom, I was guilty of putting myself first sometimes. After I became a parent, I learned what it means to be selfless. It means putting the needs of your children, your spouse, your parents, even your pet –first. Parent’s of brain injured children are beyond selfless. They never have time for themselves. They pour every ounce of energy, strength, patience, love, compassion and kindness into their brain injured children. You know what else? They don’t complain about it either. They are so focused on their children’s needs, that’s all that matters to them.
We could all learn a lot from brain injured children (and their parents).
