Louisiana shared with us her wishes for her daughter, Ronee'; now she shares with us her wishes and desires for her young son, Johnny, who is Ronee' 's brother. Johnny, like Ronee', is ten years old, and he, too, is disabled; but he is even more so. He is dying of a progressive neuromuscular disorder.
April 28, 2003~
My dearest Johnathon:
Earlier, I did a list of things I wish for your sister, Ronee'. Now it is your turn.
Johnny, each day you live is a Miracle from God. You have already exceeded many expectations put upon you by doctors or health professionals. But I still have a great many wishes for you, and I would like to share with them with you now.
1.) Johnny, I wish that you could have a better life. You don't deserve all this medical drama in your life. You have endured so much hell, and I honestly don't know how you keep on going the way you do. You are a very amazing little boy, and you have taught us all much in the way of courage. You are a shining light, and you are an inspiration to all you meet or come in contact with.
2.) Johnny, I wish you could have the chance to grow up and do things like have a girlfriend or go on a date, graduate from high school or go to college or into the military, or get married and have a family. You won't get to do any of these things, and you don't know how much that hurts me inside. I look at your beautiful little face, with your clear, bright-blue eyes that sparkle with life and determination, and your shock of white-blonde hair, and I always get a lump in my throat because you have a disease that is incurable, and you have a disease that is robbing you of your life, tiny bit by tiny bit; and each year you end up getting just a little bit worse; and to tell you the honest-to-God truth, it scares the living hell out of me.
3.) I wish, Johnny, that you didn't have to use an electric wheelchair or wear leg braces in order to get around. I wish you could just leap out of that damned old chair and run, laugh, and play like other kids your age; little kids such as yourself don't deserve things like muscular dystrophy. Little kids like yourself are meant to laugh, run, and play, not to be dying or suffering on a daily basis with problems that are far beyond your (or our) control!
4.) I wish you could do more than you are able to do. I wish you could take better care of yourself and not have to worry about personal matters. I know you worry about whether people are staring at you because of your oxygen tubing or the fact that you need help with things like getting dressed, or having your teeth or hair brushed; and I know this frustrates you because you aren't able to take care of yourself as well as you used to, and because of it, you need more in the way of extra help. I know this is embarrassing for you, but Johnny, please do remember this. You are our son, and you are my little boy; and I would do anything to help you feel better or more comfortable! I love you, and I love to take care of you! You are our son, and never think for a minute that you are a "burden" because I am here to tell you that you are NOT!
5.) I wish that people were nicer towards you and that they would learn to see the beautiful little guy I see inside. You are a Miracle, and I see much in the way of potential for you. I wish I could dry your tears or hug your hurts away when people tease you; you have come so far, and you do NOT deserve to be treated so unfairly! If people could only learn to accept you for YOU and NOT worry about how you happen to look to them or the fact that you are in a wheelchair, then they would be a lot better off, and I know you would, too! I also wish that these people who tease you could learn to live in YOUR shoes, even if only for one day. Then they would learn first hand just what YOU have to go through each and every day, and it would make them think twice before they even THINK of teasing you again!
6.) I wish that you could have more in the way of joy and fulfillment in life and not have to suffer so much. I wish you could see the beauty of your life and not just the harsh realities that you must face each and every day. I know you get sad about your situation; I do, too. But that is okay. You know you have God on your side, and you KNOW that He'll help you through whatever new battle you might face in your life!
7.) I wish for you nothing but lots of good friends, a happy, purpose-filled life, gallons of giggles, and many, fun, sunny days in your world!
8.) I wish that you could go to Germany. I know that is where you were born, and I know you have had an interest in going. There is nothing wrong with wanting to see the country in which you were born and came from. Hopefully, with a lot of prayers and a lot of hard work, this will come to pass.
9.) I wish that you were able to express yourself more, in terms of your feelings, and that you weren't so embarrassed about crying. Crying is good for you, and it doesn't mean that you are a "sissy"! Crying is a great way to release any bad feelings you may be holding inside, and whoever has told you that you are a "Sissy" because you cry is WRONG. You go on ahead and cry; it will definitely help with releasing any bad feelings you may be holding inside, and it will make you feel better in the long run!
And finally, Johnny, I wish that you knew just how much I love you. You came into our world over 10 years ago, when you were just a little baby of a few months; but in these ten years, you have managed to wrap your little self around our hearts, and every day, our love for you only grows stronger as the years go by. You have made your presence known, and you have definitely left an indelible mark on our hearts, one that will never, ever go away, even after you die and go to Heaven! You are very much cherished by your father and myself, and your brothers and sisters all love you very much, too! I love you so much, Johnny, I can't even begin to describe just how much. But I will tell you that I love you more than all the stars in the sky, and I love you more than the entire universe! Now THAT is a lot of LOVE to have for you now, isn't it? So NEVER think for ONE minute that you are NOT loved, because, as your mother, I am here to tell you that you ARE!
I love you with all my heart and soul, my little Johnathon, and I will ALWAYS love you, forever and EVER!
With MUCH *~*LOVE*~*, your Mommy, Louisiana. (((((((HUGS))))))) and XXXX's, too! :)
Colorful interactive book for teaching children the ABC's using God’s creation of the animal kingdom and featuring some of His most exotic creature. More importantly the book segues into the very special love God has for children.
