The Great Dilemma

In this picture Justice is holding up her hair she donated to Locks of Love. This was only a couple weeks before she had brain surgery. She wanted her hair to go to a good cause....I couldn't ask for a more perfect daughter.

As I have said from the very start of this blog, these are my stories. Not always pretty, not flattering by any means but real, sometimes hard to relive stories. So why do I write about things I would rather not even think about? To help. It’s that simple. To help.

My goal is to help the mom or the dad that feels the guilt, the self- doubt, the exhaustion, being overwhelmed, overjoyed, extreme thankfulness, extreme anger and know they are not alone and they are normal for their circumstances.

My goal is to help doctors and other healthcare provider provide better care by letting them see parent’s point of view. I believe great changes can be made to improve the quality of care patients receive, especially our children, but I believe in order to reach these goals, we must first stop and really listen to each other. I have not found this to be possible inside a doctor’s office. My $450.00 in a specially clinic gets me a 30 minute wait or more in the waiting room, a height, weight, 15 minutes with a doctor, a “how’s she been doing”, “let’s try her on this” and “come back in 3 months.” Yes, we have a few, or maybe 2 doctors that take more time or ask more about her than that but we have around 15 or so doctors. I always leave appointments feeling that something has to change, if nothing else, what am I paying them for? Why can’t I just e-mail them this information for ¼ the cost? I mean, if they’re not even going to make me feel like they have all the facts about her, why go to all this trouble. I end up not trusting their treatment because I don’t feel like we have fully listened to me and they may be missing something important. Then there is other times when they tell me to do things without asking me first if I’d be comfortable with it…..Yes, I believe we would both benefit from a better understanding of where the other side is coming from.

My goal is also to educate friends and family of people with special needs. I wish them to understand that we, the families of special needs children, are trying to juggle two lives. One that is the same as the rest of the world’s with soccer practice, school, shopping, cooking and all of the normal trials of life. The other with doctors, nurses, hospitals, medical supplies, procedures, therapies, embarrassing moments, explanations and never ending advice. I hope other people’s families and friends will read my stories and maybe show more mercy or compassion for their family or friend who has a child with special needs. There’s never a good time in conversation to say the things I’m talking about here. If you do, you sound like your having a pity party. I hope to say it for them. So you will know how life is for them and they won’t have to say it.

Here’s my dilemma, someone has been coping my blog. They are taking my creative writing style and even my personal tragedy and using it as if it was their own. This, needless to say, it is very upsetting and hurtful to me. As much as I wish to accomplish my goals, I do not intend to give someone a book to write. To think they are turning my life struggles and my daughter’s extremely painful ordeals into their fictional blurbs is heartless to me. Therefore, if you could bear with me, I do plan to continue to write but the story cannot be in order as much as it was before. I hope to still make Raising Justice very enjoyable and educational. Thank you all for your support it is much needed.