Althea McCluckie (parent):
My name is Althea McCluckie and I’m the mother of Seda McCluckie who is a 13 year old young lady born missing her brain. And the name of that disability is Anencephaly. She has her brain stem, so what that means is all the autonomous nervous system functions are covered, meaning that her heart beats and her kidney’s work and her lungs work and that sort of thing. But her skull is empty except for spinal fluid and other than that it really doesn’t mean much. She is a beautiful young lady who has a full rich life.
Alyne Ellis (interviewer):
I don’t know how to ask the right question. It means that she has no conversation…
Althea McCluckie (parent):
Oh ok, all right. Um, she is entirely dependent on other people for survival in terms of she has a feeding tube that pumps food directly into her stomach because she has difficulty swallowing. And she uses a wheelchair. Um. And she needs to be lifted in and out of the wheelchair and that kind of thing. Her speech is extremely limited and peculiar in that she communicates with sounds, a few sounds, but about every six months she speaks an entirely full sentence that makes perfect sense. We don’t know what that’s about at all. Her hearing seems to be entirely intact. She definitely responds to colors and change in light patterns and intensty of light. She does have seizures. She’s on a very very special diet called the Ketogenic Diet that mostly controls her seizures. The first few years of her life she was having up to 600 seizures a day. And now she’s down to less than six a day on an average day. She particularly enjoys drumming, low tones. She loves men’s voices.
Alyne Ellis (interviewer):
Does she know who you are?
Althea McCluckie (parent):
Absolutely. Well, for example, I have been away from home for three days. And each time when I speak with her on the phone, she smiles. The caregivers tell me that she is reacting, and often I hear her coo in response in sort of conversation that we have when I call her on the phone.
Alyne Ellis (interviewer):
Is she capable of learning something?
Althea McCluckie (parent):
Well, she’s already learned several things. She’s learned who loves her and who doesn’t. She’s learned how to interact with the world around her. She’s learned to make choices about what she enjoys and what she doesn’t enjoy. One of the things that ah happens in lives of people like myself, when I meet families or individuals who have very little experience with people who have disabilities everyone looks at me and speaks in these tones of “Oh you martyr. Oh poor you. What a horrible life. It must be so hard.” And I… I don’t look at it that way.
Physically our lives are very very hard. Lifting her, advocating for her needs, changing diapers, baths, all kinds of things like that: it’s labor intensive and exhausting. But I also don’t um go through the same thing that other parents go through. I don’t – my daughter’s 13. – she doesn’t whine, she doesn’t hang out with the wrong crowd, I don’t have to worry about um whether or not she is going to do drugs, or involved with a gang. She never talks back to me. She doesn’t manipulate. She doesn’t run through a store whining and screaming “I want this toy, mommy” that kind of thing. So there are compensations that my life is very different than other parents. My daughter’s life is very different than other children.
But there’s a balance the pros and cons of her life. And I personally believe that I have… I have the most extraordinary experience living with my daughter because she… If I can tell you a fairly unique story, in background to this? Some people I know had this midwife present at their daughter’s birth. And it was their second child. Their son was about three years old. And it was a home birth. Once the daughter was born, everybody’s happy and things like that, and the son said: “Mom, Dad, I want time alone with my little sister. “
And of course, being parents they wanted to encourage him to bond with his sister. But he was only three and they didn’t want to leave him alone. So everybody sort of peaked around the door while he was alone with his sister. And what transpired still gives me goose bumps. This was years and years and years ago. The little boy leaned over and said to the little girl: “Tell me all about God. I’m starting to forget.” And what that taught me that… the innocence of the connection with whatever you want to term it, God, the universal, the divine, whatever it happens to be, is something that we learn to separate ourselves from.
My daughter has never separated herself from the beauty of life itself. So I spend every day of my life in direct connection with … with a being who reveres life itself. What a fabulous reminder and resource for me to live my life that way as well.
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Althea McCluckie (parent):
Neurologically the typical human being, their need for sleep is sleep on the need for your brain waves to alter. If you do not have a frontal lobe, you do not have a need to sleep. My daughter has gone a record of over thirteen days without taking a nap which means as her mother I have gone for over thirteen days without taking a nap.
I need to be constantly alerted to her situation. When she has seizures she needs oxygen in order to live, but her seizures are silent. So if you are not watching her and she has a seizure, she can die.
Alyne Ellis (interviewer):
So you must be using caregivers a lot for her?
Althea McCluckie (parent):
When they are available, my daughter is eligible for 300 hours per month, but there is a caregiver crisis; we’ve gone two or three years at a time without caregivers. Starting next week we will be losing 2 of the 3 people that we are relying on this current week, and we will be down to an average of 14 hours a week worth of help.
Thirteen years of chronic sleep deprivation has created a disabling condition within my own self. And I need, I am doing what I can to attend to that. But I don’t always have that opportunity.