Team 'Go Girl!' walks for Sophie's cause
After receiving a diagnosis of tuberous sclerosis complex in May of 2008, at 2 months of age, suffering years of intractable seizures, and enduring two brain surgeries at UCLA Mattel Children's Hospital, our daughter is taking part in and enjoying everyday life experiences. We are continually learning from our amazing little girl, and naturally altering what we feel when we see or interact with a child with 'special needs.'
This year, we have been attending preschool, which has provided many wonderful experiences for Sophie and our family. Recently, I experienced a beautiful moment with my daughter. I felt compelled to share.
Does anybody know?
Today I got to stand at the white line with all the other preschool parents! Today, Sophie got to walk with her classmates, with anticipation and pride, towards her mom to share her special classroom project. I took her picture. She was beaming! While I talked to Sophie about the Play-Doh bug and grass she helped plant and water, many emotions pulsed through me... Does anybody know how much this independence means to Sophie, to me? Do people understand how many purposeful and necessary steps it takes. Does anybody know how many times my jaw trembled and tears ran down my face? Are people cognizant of how many times Sophie or any child quietly, or not so quietly, waits for us to 'get it.' Me included!
I get the chance to witness many beautiful things all the time, and sometimes it is overwhelming. It is hard work to raise the world up to meet Sophie's needs. So many times it is just not good enough for her! That is where 'her village' comes in. Her mom, her dad, her brother, her grandparents, classmates, teachers, therapists, doctors, neighbors and friends.
Sophie is incredibly perceptive and tries so hard in a world that has a lot of learning to do. She knows it is not always easy for her to do the things that other children can do in much less time and sometimes just different ways. No pity necessary! She doesn't need it.
Don't think that for one moment if you look into the eyes of a person with special needs that she is not aware that you may look at her with some level of shortsightedness. Or that we don't all suffer from some 'lack of ability.' We just may not need a machine to help us talk or wheelchair to help us get to our destination.
Does anybody care?
Does anybody care that I was brave? Does anyone care that I chose to be patient for the 100th time today? Does anybody know how thankful I am?
Team 'Go Girl' is getting together to raise awareness and funds to support research, treatments and ultimately a cure for individuals and families affected by tuberous sclerosis complex. Step Forward To Cure TSC is on June 10 at 1 p.m. at Cook Park in Tigard. You can register for the walk by visiting our fundraising site at http://goo.gl/rwnns .
Jami Flicker is a registered nurse who worked at Legacy Emanuel Hospital in acute-care obstetrics for 15 years. She is Sophie's mother.