A father writes of the implications his severely handicapped daughter has put upon them and their lives.
No matter how many times it happens, I can never get used to the comments/stares or finger pointing from other people whenever we take our daughter, Aurelia, out in public. This is when I feel uncomfortable, guilty, tainted somehow for having birthed a child with such significant disabilities.
Aurelia is eight (but looks no older than three). She is extremely tiny, very thin in build, is non-verbal, not toilet-trained, and is in a wheelchair. She was born with cerebral palsy, brain damage, seizures, and mental deficits. She can't do anything for herself: she requires 24-hour care, constant attention.
We are not sure what caused Aurelia's problems, but have to live with the ramifications of them every day.
Every aspect of our lives (work, vacation time, etc.) revolves around our older child. For example, if we stay somewhere, we have to make sure the room is accessible for Aurelia's wheelchair. We have to make sure the A/C is in good working order, or else Relie will get sick (she cannot tolerate the heat). We have to have the number of our doctor or our local EMS because our daughter gets sick so easily.
It isn't uncommon for the ambulance to make a run to our place because Aurealia choked again, had a seizure, or worse, stopped breathing. Sometimes her feeding tube gets blocked up, and her stomach swells up. There are so many variables that occur with Aurelia.
People cannot understand why we don't respond when Aurelia starts making her high-pitched noises in public or pinches someone whenever they walk by.
How do we discipline a child who doesn't understand what she is doing or cannot communicate? How do we try to reason with her when she has no clue whatsoever what you are trying to tell her?
She has no idea what is happening to her or around her most of the time. She can experience feelings, knows how to show emotion, knows how to love, but not much more than that.
She is a delightful child, but at the same time, all her needs take time away from the other children, Braxton Danae' (six) and Solomon Garrett (four). I am sure they resent having a sister like Aurelia Hope because she can't roughhouse with them and have to watch over her or babysit her or help mommy and daddy care for her.
We feel guilty because we are denying the two youngest a normal childhood. Instead of having fun playing with their friends, going outside, going to movies, or having a life. They are often saddled at home, helping mommy and daddy changing Aurelia's diapers, flushing/cleaning out her feeding tube, hooking her up to the oxygen tubing, holding her hand when she's sick, trying to be brave when the paramedics come.
They don't have a normal life because we need them to help out with their big sister.
There is nothing wrong with your parenting skills! You are Exceptional parents. You other kids are more normal than you think. Just a bit more complex. Do they still laugh out loud? Include her as they play ( talk to her,put toys on her lap , ect)argue with each other and you, Show affection?...If so then there quit normal!! Wait till there adults..Youll see, dont fret it..put the energy elsewhere!!...I know This for I have the same kind of Special girl in my Family!!
Touching write my friend, I too am thankful that there are people who care and are willing to donate their time and life to help those with special needs. I became accustomed to working with children with special needs before I became a teacher...when my daughter was four she was stricken with leg perthees disease and we spent a great deal of our time at Shriner's children hospital where we saw many children with special needs, I loved watching her communicate with the children, she didn't even seem to notice their handicap, crutches, or wheel chairs, as they didn't notice her leg braces as many people in our daily life did! People would often stare, point, children would ask questions, and parents would turn away to keep from addressing the issue! I prayed daily for all of the children whom we came in contact with...I also counted my blessings for my child was the healthiest of all! I am thankful every day for her amazing healing from God at the age of six she was able to lay the braces down, no more therapy, no more braces....she was given a new bone by our precious Father! To this day at the age of twenty two when she goes for a checkup at Shriners they are still amazed at the miracle that was given to her! Touching write allowed me a wonderful trip down memory lane and a great reminder to continue being thankful daily for Bethany's healing! We do serve a great and powerful God! Great write dear friend!
Blessings,
Joyce B.
Thos story reminda me of the time I worked with the severaly handicapped as a training program for highschool, one boy who was about thirteen had a severe case of Cerebral Palsy, but whenever he saw someone he recongized his smile said more than words could say. Keep up these eneteraining and educational stories
God Bless
Michelle~
Karen, when I taught school, we had programs to teach children how to react and/or respond to disabled persons. Perhaps adults need the same training.
As unseemly as it seems, people are always going to look--and some stare. One sometimes wonders if we should look, turn away, say something--or what. With disabled people I've come in contact with, I found that if you give them a nice greeting, they don't feel as if they're under scrutiny.
Anyway, you always seem to earmark important points in your stories that invite your readers to really think.
This rips me apart, Karen. You paint this picture of REALITY so vividly and I really can't begin to imagine the toll on the hearts and minds of all parents and siblings who are in this family situation. Mental and physical exhaustion must be a daily given. Thing is, guilt is also so debilitating. My prayer would be that firstly the irrational guilt would go, and that the daily challenges to normalcy would be changed to be perceived as wonderful opportunities for personal and corporate growth... after all, almost ANYTHING in life might be a synch (?sp) after coping with this kind of dynamic. Above all, let there be much love in a situation where even getting through the next hour, minute by minute, is a challenge. You can only do that and survive with hopefully love and laughter as the anchor. A special family with special needs. Each and every member of it, clustered around the heart of Aurelia. And may the supernatural blessings be many. Thought-provoking and stirring as always. Love Kate xx
I cannot even begin to imagine (or want to) what parents of children with disabilities go through when they take their child out in public. This comes close: the stares, the finger pointing, the comments of "why don't you leave the child at home" with the unspoken message "...to spare us the sight" just underneath. Sad. A compassionate plea for understanding, excellently penned.
When Kathy finds a small stray kitten some amazing things happen. Story's from a Mom's view of the love, caring and patience needed when a child wants to own a pet. Recipient of the prestigious Mom's Choice Award. Delightful illustrations!
You May Be Single, But You’re Not Alone.
Being a great dad is challenging enough when you’re part of a two-person team. But now you’re raising your kids single-handedly. How can you provide the emotional, physical, and spiritual support your
When Kathy finds a small stray kitten some amazing things happen. Story's from a Mom's view of the love, caring and patience needed when a child wants to own a pet. Recipient of the prestigious Mom's Choice Award. Delightful illustrations!
