While many people are enjoying the nice weather Mother Nature has seemed to lay upon us this wonderful July, I realized that not everyone in this world could actually enjoy it.
I look at my kids and ask, "do people really know how lucky they are to have children that are comletely healthy and free of illness and/or disease?" Many parents will never truely know the struggles of a family with even one sick child let alone multiple. From high medical costs to stuggles getting them into school to the everyday living costs that seem to go higher and higher as the days and weeks go on.
One wheelchair co-pay can hit $500 easy, Gait Trainer co-pay can hit $200 easy. Medicine co-pays can be between $10 & $60 and sometimes higher. Drs visits are $25-50 before you look at the cost of gas to get there. Multiple trips to Chicago, St. Louis and talks of heading to Indianapolis means a tank of gas to get there and a tank to get back. With average prices of gas being $2.50 right now in my area, that's damn near $100 for gas just to get her there and back!!!
Fights with drs officies to get scripts sent to where they need to go, fights with the health insurance company to even pay for the stuff she needs, the stresses of knowing she'll never be normal, not like other children in her class. Fights with the schools to make the proper adjustments and reconstruction of areas of the school to get them up to ADA standards is time consuming to say the least.
I have become and advocate for my daughter and encourage others to be the voices of their children as well. I have also become advocates for other children that have no voice and no one to assist with getting them what they need.
Sure, worring about if you're gonna get that new iPod or Wii is great if you have the time and money to worry... But for those of us that have other issues to worry about like where's the moeny going to come from to pay for medical bills we have already or those to come, what about the special meds she needs, how are we gonna pay for the new wheel chair she so desperately needs...
My dear Autumn is now 7 years old, she is free of her feeding tube and 99% of her meds that were "sustaining" her from 1 yr till now. Her only meds are a growth hormone and the occasional tylenol or motrin. We are very happy and thankful for everyday we have with her. Now, that is not saying I am not angry nor jealous of those with healthy children. Because to be honest I am... I am very angry that God made my daughter suffer with an illness that took 6 years to find. I am very jealous that God gave this one a healthy daughter when all I ever wanted was a little girl to call my own. Shopping, hair salon trips.. ya know... the normal stuff moms and daughters do...
(Photo above is Autumn during the State Farm Play Day in June 09..... Taken by Crystal R Smith)
I however would not change having Autumn in my life for anything. Not even a healthy Autumn. She is mine.. all mine and I love her to pieces. No matter how bad things seem to be going in our lives, Autumn always seems to make sure we smile at least 10 times a day LOL.
As I sit here and write this, dear Autumn is sitting with her dad eating a bagel and playing Nintendo DS! She is the light of our lives, makes us smile everyday no matter what's going on. She's a happy little girl without a care in the world! She enjoys being with her family and the animals here on the farm. She's a friendly little girl that sees only the good in people. I wish I had that trust, that hope to see the good in things, especially when right now, all is see is greedy, evil, self preserving people.......
Lord, grant me the strength to go on, provide guidance for me so that I may guide others during their struggles in this cruel world. Forgive me for all that I have done or will do in the days to come. Keep my family safe and my friends well. In this your name I pray... AMEN...
Keep family close my friends, love them, respect them, listen to them.. and most of all.. LOVE THEM...
