I'm going to tell you guys a story. A story about a special little man, and what he did for my wife and I.
My son, Asher David Jaden Seales was born on January 8, 2011. We knew when he got here we were going to have a hard fight-we were initially told he had no brain. He had such severe congenital hydrocephalus that it truly showed no gray matter. Shunting at 8 days old revealed that he had roughly half a brain, though his first surgery was at three days old for a dual incarcerated inguinal hernia.
We spent two and a half months in the NICU with him before we could take him home. He went home on permanent oxygen from bronchopulmonary dysplasia, but he was ours. However, he bounced in and out a lot. He had a lot more problems than we originally thought. He had inherited his mother's clotting factor disorders (thankfully inactive) and my connective tissue disorder (of which there is no inactive version.) His spine started developing a major bend at about 9 months old. Little buddy had a hunchback in no time, but that didn't slow him down. Being paralyzed form the waist down did, though. He really couldn't move his arms very well, either. Moving just wasn't his forte. One of my favorite memories was the day he learned he could wiggle.
*wiggle* hmmm.... *wiggle wiggle* I can wiggle? *wiggle* I CAN WIGGLE!!!!! *wiggle wiggle wiggle wiggle*
His face lit up with the most beautiful expression that day. He was so happy to be able to squirm just a bit. Mostly he was content to sit with Mom or Dad and hold his best friend, Mr Bumpy. Mt Bumpy even went to surgery with him. He'd come out in a ziploc bag, still tucked under my boy's arm.
And surgeries we had. We got into the fifties before I lost count. But he soldiered along. Toughest little thing I've ever seen. I thought I was tough, lasting like I have against this disease. He showed me what true strength was about. But unfortunately, his little body was running out.
On November 10th, 2012 Asher stopped breathing for an hour and a half. Only a God-given miracle brought him back to us. After close to a month, he regained consciousness. He was blind, and almost totally paralyzed, but he was still our little boy. On Christmas, he developed severe pneumonia. They tried everything-drugs of last resort, high ventilator settings, and finally epinephrine drips, but he was going. His hernia repairs never worked, because of my connective tissue disorder I passed on, and he developed a bowel obstruction. By the time we found it it was too late, and it had swelled immensely, crushing his heart and lungs. Mom and I held him at the end and sang him to sleep, and he passed in our arms on January 7th, 2013. He would have been two the next day.
I got an assurance that few people ever get, and it's the only reason I keep living anymore. Just before the end, my little boy's face lit up with the same smile he would give Mr. Bumpy after a wash or if one of us had been gone. The same smile he had when he learned he could wiggle. His face lit up because I believe he saw Jesus coming to take him home personally. He was blind, he couldn't see us. He could feel Mr. Bumpy, but he had had him the whole time.
I'm bawling my eyes out as I write this, but his story must needs be told. Children's of Birmingham did absolutely everything humanly possible for that little boy, and in the end they even paid his funeral costs.
He was the happiest thing in the world. I think he knew he was on borrowed time somehow.
Children's gave us nearly two years with him. I build things now to sell so I can donate more to them in his name. If you ever want a reason to donate, help me make sure no other parents have to go through what we did. Help St. Jude's/Children's to let other parents take their child home in a car seat instead of a coffin. My wording may be harsh, but that is what we did for my son's second birthday. I don't think I'll ever get over that.
The ground was unworthy of his feet, so he never walked. Our ears weren't worthy of his voice, so he never spoke. And in the end we were so unworthy of his presence that he left us, to receive healing that this life could not give. But of all the things that we do not deserve, he gave freely of that we deserve the least-love. And now I must attempt to carry on in his name and in his stead, loving all that I come across. May his death never be in vain.
Topic: As if you needed another reason to donate to St. Jude's (Read 663 times)
