So when I get home tonight, Katee, our nurse, asked me if I'd gotten Will's sedated ABR appointment yet. I tell her no and remind her that the audiologist said it would take 4-6weeks before we get our appointment notice in the mail. So she asks, if tubes are recommended, would I get them put in. I said yes, that it was extremely important that he be able to hear well in order to speak well, and then I mimicked someone who cannot hear or speak well. I said If he can't even say his name clearly, who is ever going to want to promote him any higher than the grocery bagger* or the cart boy* using the jerky rapid cadence and softened consonants of our older disabled citizens who did not have the benefit of early intervention and speech therapy. And her eyes welled up and spilled over. She was stricken. She said it really hurt her that society does not realize the value of children with Down syndrome. That it angered her that so many wonderful people were denied opportunity without ever being offered the chance to try. That she would love to parent a child with Down syndrome. She's certainly a keeper.
Katee's story is not for me to tell. I will invite her to my blog to tell it in her own words if she would like. What I can tell you is that her experience in being Willie's nurse is different than with her previous two charges with Down syndrome. Different in that Willie has full run of the house and does not spend his entire day and night in his bedroom. Different in that Willie's family celebrates him and marvels at his being. Different in that Willie is given every opportunity for therapy, to learn, to grow, to be. Different in that Willie will grow up with expectations placed on him. To go to school. To attend college if he chooses. To get a job. To marry if someone steals his heart. To live as independently as he is capable of. To be a productive adult. To be happy. To make his own choices. To live. Katee is a woman half my age. Her other two charges were not in years gone by, back in the dark ages when parents hid their imperfect children away. Nope. These are very recent events. As recent as this past March. Modern day children in modern day families. Secluded in their rooms. Not provided with therapies. Fed, clothed and sheltered, but hidden. Denied. I understand her tears, and I hurt for her having seen those things, but I thank my God in Heaven every day that she's come to us.
*There is certainly nothing wrong in being a cart boy or a grocery bagger, but while the stars are ours to reach for, I will hold Willie as high as possible to reach for whatever his heart desires.
Subscribe to:
Post Comments (Atom)
2 comments:
WOW! Sounds like it would be a painful story. So sad!!!
Chris,
Katee accepted a guest post! Go see "My Happy Place"
Post a Comment