When our son Tim was born, he was very premature. Because of complications, and a pretty bad hack job of a delivery, he had a massive brain hemmorage at 16 days old. This caused him to have Cerebral Palsey. They didn't tell us that he had Cerebral Palsy. They sort of let us find out on our own. When we started asking questions like, "why doesn't he bend his legs? Why is he so stiff? Why can't he turn over? Whey can't he sit up?" Then, they said, "Oh yeah, he has Cerebral Palsy." gee thanks.
I wish I had known that before. I could have spent a lot of time reading up on it to know what was ahead for us, and what we could do to help him.
I think the hardest part of having a child with disabilities is the isolation one feels from the general public, not the disability issue itself. It is hard sometimes continually being asked questions. Always being stared at. At home, it isn't an issue. Don't really notice anything. But then in public, it's another story. I'm not that shy, but do wish for anonimity sometimes.
Just to blend in. Nobody notice. Nobody stare. I remember one time when I went with Tim to the store when he was about 17, we kept getting stared at. For a while I couldn't figure it out. I actaully went into the bathroom to see if something was wrong with my hair or face. Then it dawned on me. They were staring at how he walks. LOL I had completely forgotten that it isn't every day that you see somebody walk like Tim. I really don't even notice it. But others do.
So, here we are, all old and everything. And now, we have 3 little girls. 2 of them have missing limbs. One, just her leg and some fingers, with some deformity of her existing leg and arms. The other one, has arthrogryposis, and had to have both feet amputated. They are wonderful, beautiful girls. Sweet beyond sweet. But what do people see? They see disfigurement. They see missing legs. They see "HANDICAPPED". And yes, we are back to being stared at all over again.
The sad thing to me is that nothing has changed over the past 25 plus years. People still don't teach their children not to stare. They still whisper while looking at you and don't smile. They still point. The same kids that made fun of our dear son, and stared at him, are now the parents of the kids who stare today. Nobody seems to learn, and that makes me sad.
So here we go again. Educating people that we do not know. Rising above the hurt, to say, we are just people with feelings.
And NO, you don't need to feel sorry for us. And NO our lives are not terrible. And NO we are not "catchy".
What we like to share is how wonderful, rich and full our lives really are.
After all, how many people can break their leg, drop it off at the hospital and pick it up the next day like we do?
How many people can take thier feet off when they hurt? I'm stuck with mine.
We are able to speak frankly with our children about love, understanding,ignorance, forgiveness, education. Are they special kids? YOU BET YOUR BOTTOM DOLLAR THEY ARE!
But not because of the outside that society tries to define them with; but because of the inside that reveals their true spirits of kindness, bravery, confidence and love.
How many people have the privelege of meeting and working intimately with some of the finest Doctors., prosthetists, nurses and all around great folks on a regular basis all for the cause of making a child's life successful?
And I can't forget to mention the silent siblings. First, our 3 other boys, who lovingly cared for and watched over thier brother. Who patiently and sometimes not so patiently protected him. Who waited for him to get back from a missions trip so they could all go to college together. Who encouraged him to keep on keeping on and follow his dreams, when he got discouraged.
And to our little Anna, who quietly serves her sisters. Many times she helps them find their socks. She knows the exact socks they are supposed to wear and many times wakes up early to help them get dressed. She has helped Erika with the bathroom, making sure she has wipes. She has actually surprised us and carried her to the bathtub, out of the tub and gotten her dressed, only to say, "mom Erika's done with her bath, it's time to get her out!" Then, I go to get her out and there is howling laughter at my surprise! She has helped Erika put her legs on and surprised us with Erika walking out of the bedroom all dressed. What joy she brings us with her servants heart.
So we will continue to share our blessings with those who truly know what blessings are. And to educate those who don't.
This is the Life that God has chosen for us, and we are most grateful.
“I pray because I can't help myself. I pray because I'm helpless. I pray because the need flows out of me all the time- waking and sleeping. It doesn't change God- it changes me.”
― C. S. Lewis
― C. S. Lewis
I believe in the sun even when it's not shining. I believe in love even when I don't feel it. And I believe in God even when He is silent. (quote found on the wall of a concentration camp)