Parenting a child with primordial dwarfism, and the unique challenges it presents, as told by her mother.
My daughter, Brandy Marie, aged eight, is a special child; yet with all that she has been thorugh in her brief life, I cannot imagine my life without her.
Brandy was born with primordial dwarfism. Primordial dwarfism is a very rare form of dwarfism; because of it, she will never be more than two feet tall, even when (and if) she becomes an adult, and she weighs only 16 pounds. She looks like a little doll.
The world is a scary place, but especially for a child Brandy's size. She is prone to all sorts of dangers, and whenever she is outside, I worry that she will get hurt somehow--or even killed. She also has a tracheostomy tube, and I worry that she is going to stop breathing if it becomes blocked somehow or someone is going to pull out her tube. Another reason why I worry about my daughter so much.
Now, I realize that I can't protect her from harm, as kids are naturally curious anyway, but I can't help myself. She is just so tiny, and she is so fragile; I can't help worrying like I do. She has been in and out of the hospital, and she can get sick so easily.
Like last year, as an example: she was fine one minute; the next, she was gasping for air. She had come down with another respiratory infection, and she ended up having to be rushed to the emergency room because she couldn't breathe. It was terrifying.
People have no idea what it is like parenting a child like Brandy; they tend to feel sorry for me, or for her, and it drives me up the wall! They stare at her, make rude comments, and I can't handle it. It's no wonder I've managed to distance myself from people, strangers, because I can't handle the stares or the comments!
Brandy is subjected to stares anyway because she is so tiny in size, but I try to treat her as normally as possible. I guess this is one reason why I am so overprotective of her. Maybe it's not good for me, or for her, but it's only natural; I AM her mother!
I call her "Mighty Mouse" because even though she is so small in size, she has a gigantic spirit about her; nothing is going to stop her from doing what she wants. She is very stubborn in temperament, and she's been known to knock down a kid twice her size when the kid made a rude comment to her. She can fight, defend herself. Don't let her tiny size fool you: she can beat the crap out of a kid if they aren't more careful!
It's about time you are back! Hooray! And thanks for the wonderful story of this fearless little girl.it will be interesting to watch her progress. You are a fearless writer Karen, never afraid to tackle the hard stuff! Blessings to you and may your new year be filled with every good gift from God, for He provides only the best!
My Dear friend Karen
I truely admire your ability
to write so many stories
you are my most inspiring author here at the Den
Thank you
Love & Peace be with you
Dear Karen, you know better than me. Mendes France, a great statesman said that the strength of human beings does not depend on their size. Of course parenting is a great task. Every child is a world and we should take them seriously. Today the special education does not always fit the needs. As we go, solutions will eventualy appear somewhere with the help of everyone. Thank you for bringing up such a special case. Emile
A touching write my friend...not enough attention given to this subject thank you for posting it...I agree with Karla, dynamite does come in small packages...I have a little boy in my class who is small for his age, but he is a firecracker. His mom ask me to retain him last year to give him growing time...I was happy to, he is a great student and a wonderful child. Where I am with him daily I really couldn't tell that he had grown very much, until I was browsing pictures of last years class a few days ago...I was pleased to see quite a visible difference! Again, a touching write! Enjoyed!
Blessings,
Joyce B.
This book consists of a 150 pages of Christian poetry about the end of time and the Second coming of Jesus Christ not as a servant but as a King, the King of kings. To bring righteousness and peace to the earth and restore the government of God! Peac
Note: Since my husband's cancer surgery 4/25/05, this book content has been integrated into the public speaking content for audiences interested in a sassy approach to personal and/or community awareness events. Another chapbook on intimate love poet
