A father writes about his little boy who was born with serious heart problems, and the joys he brings to their everyday lives.At seven, Jonah is now healthy, after a very rough start in life, which the parent recounts in this story.
Our seven-and-one-half year-old son Jonah Tray is one of the best things that could have ever happened to us. He is nothing short of a miracle, a God-given gift, a child that should have never been born.
Our son was born disabled, yet we didn't see that. What we saw instead was a baby boy who ws ours to love, to nurture, to help him navigate this maze called life. Our son was beautiful: tiny, with a puff of light-red hari, huge, grey eyes, and incredibly long fingers and toes. Yet he was not born healthy.
He was born with breathing problems that required him to be put on a ventilator soon after he was born. His skin wsa a pale grey color, and one could see his tiny chest working laborously in order to draw breath.
Little Jonah wsa immediately rushed to tne NICU ("Nick-You"), or Neonatal Intensive Care Unit, where he was quickly trussed to monitor wires and life-sustaining IV lines and other assorted tubing. It soon becme clear just ow sick our little boy really was; it broke our hearts.
It turned out that our son had a severe herrt defect that required surgery as soon as possible. Jonah had his first surgery at about three weeks of age; surprisingly, he sailed right on through, but it ws so hard seeing our son, tubes and wires covering just about every inch of his small body, looking more dead than alive.
He fought like a tiger: it wasn't long before he started showing his displeasure at being pinned to the bed, strange, foreign objects coming to/from his body. He couldn't cry (due to the ventilator tube that breathed for him). He couldn't move without pain. It devastated us to see our little Jonah suffering so needlessly.
Jonah, unfortunately, was to have two more surgerires before he turned two years old, surgeries that repaired the damage done to his malformed heart. He was born with hypoplastic left heart syntdrome, which is a congenital heart defect.
The left side of the heart is underdeveloped, in other words.
The only three options: comfort care (making Jonah as comfortable as possible, as we waited for him to die) or have surgery or a heart transplant.
Jonah had his third surgery one week before his second birthday. He did just fine, but it was hard having to celebrate his second birthday in the hospital. He was still on tube feedings, so he couldn't have any ice cream or cake. The presents he received, though, more than made up for that disappointment. When he was well enough to eat, he did get the promised cake and ice cream. We celebrated his life given to us through the miracle of modern medicine and a lot of prayer,
Jonah is seven and a half now, and while he has to see his heart doctor every few months and take medication (to prevent infection), he is otherwise healthy. Three long scars mark his body, a testiment to his early rough start in life. That does not stop him from doing all the little-boy activities he loves most.
I look at the pictures of our son, lying in the hospital, and see where he is now; I can't help but get a lump in my throat or tears in my eyes because I remember where he was and see where he is now.
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God Bless
Michelle~
God must choose carefully the special people who are parents of such wonderful little needy children. I've known one such parent and their job wasn't easy, but everything they did was out of love.
Being a parent while having lasting rewards is still difficult no matter what anyone may tell you but to be the parent of a disabled or challenged child is hard no matter how much love you have...the upside is thought that the rewards are that much greater as well. Good glimpse into a young handicapped life.
These song lyrics and art are tales, tides and twinkling lights - tunes telling stories of warmth and sun, city and sand, paths that lead, and the coins we can keep in the Karma Bank. Spirit's been bypassed for sorrow, dreaming of a better tomorrow .
GLIMPSE OF AN ANGEL IS NOW AVAILABLE. A PORTION OF ALL SALES WILL GO TO HOSPICE TO THUS ENABLE THEM TO HELP OTHERS WHO ARE SOON TO PASS TO THE OTHER SIDE. NO LONGER AVAILABLE.
