Earlier this week, I attended the IEP meeting for the Girl in Charge- virtually of course- and, because it has to be reviewed and discussed during each of these annual meetings, I had a chance, once again, to read through her official diagnosis.
Her IEP includes some of the following statements:
“[The Girl in Charge] is a student who is considered Deaf-Blind secondary to a condition called Charge Syndrome. She has a mild-moderate hearing loss in her right ear and a profound hearing loss in her left ear. Similarly, she has minimal vision in her right eye, but can see shapes out of her left eye, such as to find her cup of water.”
“[The Girl in Charge] has right microphthalmia, bilateral optic nerve colobomas, and is missing some retinal tissue.”
“Print does not seem like an accessible or functional learning media at this time and the IEP team has agreed to continue braille instruction combined with real objects.”
“[The Girl in Charge] has a seizure care plan and seizures, when witnessed, are tracked daily.”
“[The Girl in Charge] has a cleft palate.”
“[The Girl in Charge] demonstrates difficulty with global reasoning and cognitive skills, adaptive and communication skills, orientation/mobility skills, vision skills, and fine and gross motor skills.”
“[The Girl in Charge] continues to display a profound communication impairment. She is nonverbal with limited visual ability and limited motor ability. She is able to make vocalizations, but not functional speech sounds. There has been no imitation of sounds observed or spontaneous words.”
“[The Girl in Charge] struggles to access her environment. She is currently not moving around her classroom independently. Due to health and mobility needs, she requires a very high level of adult assistance in order to engage with her school environment and maintain safety. “
“There is always potential for injury or falling at any time. She is an unsteady walker who struggles with balance and should always have an adult within very close proximity to ensure safety when she is sitting, standing, or walking.”
When I think about the insurmountable obstacles the Girl in Charge has to overcome in order for her to someday become an independent, full functioning adult, it is enough to cause me deep despair. And of course, I know that she will never be an independent, full-functioning adult. I know that I, and my husband and other caretakers, will be caring for the Girl in Charge for the rest of her life.
So what does this mean for her? What does this mean for her potential as a human being? Is this all there is? Will she never be more than all those medical and diagnostic terms listed above?
Now, of course this isn’t all there is to the Girl in Charge. Her IEP also states the following:
“The [Girl in Charge] is a very sweet and joyful student. She enjoys spending time with familiar adults, peers and family. She enjoys exploring sensory materials and engaging in musical tasks. She also enjoys spending time laying or sitting with her favorite purple pillow near the large window in her classroom. She enjoys gentle arm and foot massages, and strolling outside on a warm day with the breeze blowing through her hair.”
The Girl in Charge is quite literally the joy of our lives. She brings a sweetness to our existence that is indescribable. She has taught her big brother and big sister a level of empathy I never could have taught them. She has taught my husband and I patience and faith and hope and compassion and resilience. She has been the most extraordinary gift to our family and I am unendingly grateful- not only that she is a part of our family, but that she is exactly who she is, with all of her challenges. Because without them, we wouldn’t be who we are as a family and as individuals.
But even still, all of that is not enough. Because when I look at my sweet girl, I see someone who has a mind, who has a heart, who has feelings, who has thoughts and opinions, and she cannot express any of them. When I look at her, I desperately wish I knew what she was thinking. I wish she could use words to tell me what brilliant ideas I’m confident are found within that beautiful head of hers.
When I look at her, I know with certainty that this cannot be enough. This cannot be all that there is for her. She has too much potential for this life to be all there is.
And that’s why Easter means so much to me.
For me, Easter is the promise that the Girl in Charge will someday be made whole. It’s the promise that because Jesus suffered in Gethsemane, died on the cross, and then rose again three days later- his body renewed and perfected- so will she. Someday all of the things the Girl in Charge is not able to do with her body, will be restored to her.
Someday the Girl in Charge will see with perfect vision. Someday she will be able to listen with perfect hearing. Someday she will be able to comprehend even the most complex ideas. Someday she will be able to run and jump and swim and play with all the agility of a typical functioning person. She will drive a car and play the piano and ride a bike and ace her math tests and have simple, ordinary, everyday conversations with all the people who desperately wish we knew what was going on inside that extraordinary brain of hers.
I truly believe that because Jesus rose again on the third day, that someday my little girl will be made whole. Someday, Sunday will come.