We're compiling a book of daily motivational readings (~150 words each) for people dealing with serious illness. We want to tap the wisdom of those who have been there and found ways to live life fully, whatever their health circumstances. We are looking for stories and tips from patients and/or their family members.How have you overcome negative thinking when you or someone you love faced life-changing illness or injury?i have a serious genetic disorder and someone form my family has recently diagnosed with cancer. i think people just adapt to their situation in time, mostly because they have to, and they don't have any other choice.
and in time you just see that life goes on and you have to catch up somehow.
you see that %26quot;you are alive if you are alive%26quot; and there is nothing more to it.
you learn how to cope with it slowly, step by step. yet you never completely learn that.
and it is sometimes helpful to think there is always someone in the world whose condition is a lot worse. and you should be happy that you are in a better shape from lots of people probably...How have you overcome negative thinking when you or someone you love faced life-changing illness or injury?I'm not too sure how this will go for motivational readings. To be honest, raising a special needs child is rarely sunshine and light. I'm sure it's going to be longer than 150 words, feel free to pick and choose. :-P
My oldest daughter is 10 and has Aicardi Syndrome. It's basically a brain malformation/seizure disorder with varying levels of mental retardation. It only affects girls, and you have a better chance of being struck by lightning than having a child with this disorder. She's tall for her age, coming up to my collarbones if she stood up, which she doesn't because she's completely physically and mentally disabled. She's essentially a 4 month old infant in a 10 year old body. She weighs 65 lbs and is pretty awkward to try to pick up.
There are negative things you have to deal with with having a child with special needs:
It's difficult to watch your child struggle through seizures that make her stop breathing, or make her hit her arms, legs or head on objects because she has no control over her body during the seizure.
It's heart breaking to go into her room in the morning to find that her feeding tube button leaked overnight and her back is covered in acid burns from her stomach acid seeping underneath her.
It's frustrating going out in public pushing her in her wheelchair with one hand while tugging a grocery cart with the other while your other 2 other small children hold on and have people gawk at you like you're an exhibition at the zoo, and then having to explain to your children why people are staring.
It's aggravating having FAMILY members tell you that you should be sterilized so you %26quot;don't have any more children like her%26quot;, or telling you that it's ok to give her up for adoption if you can't handle it, everyone will understand.
That's the negative. Now onto the positive. Let me tell you something about having a special needs child. Some of this may sound almost offensive, just warning you.
1. She stays where I put her! I don't have to worry about leaving her in a room by herself to go to the bathroom and coming back to find peanut butter smeared all over the coffee table or milk decorating the television.
2. I can dress her in whatever I want and she can't complain about how it's out of style.
3. I can kiss her and hug her in public and she'll never be embarrassed or push me away.
4. I can talk to her and tell her everything I feel when I'm frustrated with life in general and she always listens and offers me a wet kiss and a smile when I need it. I don't have to worry about her not understanding or giving me unhelpful or unwanted advice.
5. Being as I am LDS, I believe in an afterlife. I believe that she will never be corrupted, soiled or worn down by the horrible things that happen in this world. Her soul has been and will remain pure until the day she dies. She has a free ticket straight to God's side with no bypass through the judgement seat. I also believe we choose who we want as our family before we come to this earth (i.e. pre-existence). I believe that she picked me to be her mother. She picked ME! She knew I would care for her with everything I am. How much more of a confidence booster can there be?
