Little Jonah, who is the subject of this blog, is afflicted with EB which is Epidermolysis Bullosa. This simply means that the very softest of touches can result in a blister that his parents must lance. The skin covering it sloughs off, in most cases, and makes a horrible, raw, runny sore that has to be carefully bandaged and monitored. When I first read this and began following this blog, it did not seem to me to be too serious. All you would have to do is be very careful when you touch him. Well, that was a great big lie I told myself. Consider for a minute all the times you have to touch a baby in a day just to provide him with the most basic of needs. Also, those touches cannot always be "gentle". Feeding, diapering, holding, loving, bathing, changing clothes...
Then, you have to take into consideration all of the times a baby touches himself or, rubs against something in their ever growing development. Playing, discovering his face, fingers, toes, mouth, tummy,...and all of the other wonderful places that babies find while learning about their bodies and their senses. Then, take into consideration the fact that all of these blisters have to be covered with bandages which means that Jonah has spent most of his life covered in bandages from his neck to his toes. Right now all that is exposed to this world is his face and his hands.
Then you have to think that Jonah cannot wear anything with elastic, snaps, buttons, zippers. You try shopping for baby clothes with those restrictions and see how down you may get.
Then, stop and think that all of your friends are having healthy, happy babies whose skin is as smooth as a you know what. Then, every day you must look at your baby who has terrible, oozing sores all over his body. If I were in their shoes, I'd get pretty mad at God, on occasion.What right do I have to complain because I have to spend most of my day sitting in a recliner, crafting, reading, writing, telephoning, and doing the other wonderful things I love to do. My day is not spent in bandages. My day is not spent wondering if a child of mine will develop a new blister in the night just because he rolls over or bumps into the side of his bed. My days don't have to be spent entirely inside because getting out in the heat makes the blisters run more.
Boy am I lucky. Yes, I do have to deal with a lot of pain. Yes, I can't get up and just walk where ever I want to go, but I do have an electric wheel chair that helps. Yes, I do sit in a chair or am in bed about 22 out of 24 hours a day. Yes, there are times that I wish God had not permitted me to be the one to deal with my disabilities. However, I don't have to deal with all that Jonah and his parents do, so that is an even bigger blessing for me. Lord, help me to remember every day that my trials in this life are minor compared to others and help me to count my blessings every day. In His name, amen.
Please visit Jonah and let his parents know that they are in your thoughts and prayers. Right now they are having a pretty rough time as Jonah is not eating and is having a lot of trouble with reflux when he does. He needs to have a lot more calories than the average baby because of the energy his body extends in healing.
When you do visit them, thank God that you do not have to experience their trials, and praise God because he knows that Jonah's parents have enough faith to make it through. Only the very best are chosen to be parents of a disabled child.
A Special Baby Boy
Jonah is a special child
A champion for our Lord.
Through his trials he’s taught others
To carry a mighty sword.
His eyes light up an entire room.
His face is as bright as the sun.
He holds your heart in his little hand.
He lets you know he has won.
His mother is a precious soul
Who loves her Savior and King.
She carries her heart on her shoulder
Letting others hear it sing.
His dad is one in a million
Who shares in the tasks they must do
Brought on by a demon called EB
That gives them trials, not a few.
This family is blessing their whole world
With their grace and faith ever shown.
They sometimes get down and weary,
They never put God off this throne.
Share your faith with this family.
Let them know that you pray and you feel.
They need all the help we can give them.
They need us to help them heal.
Thank you and God Bless the Williams family.
Mimmy – August 15, 2009