this past week has been a very difficult one for me. my 26 year old son passed away peacefully last thursday night about an hour after i got home from kenpo class. i stumbled upon the picture above and couldn’t help but smile knowing my son reached his black belt at only 4 months old and i may never get there. richie was the world’s littlest ninja.
he was a young man who always seemed to have a smile on his face. his life was filled with hurts, discomfort, and disappointments and yet he had this ability to see beyond what was immediately in front of him to see the good. but it wasn’t always this way for him.
he had lots of health issues. born with club feet, he had surgery on both legs soon after birth. his left thumb wasn’t growing right and there was more surgery when he was just beyond toddlerhood. he had a twisted spinal cord and there would be more surgery. you would think he got addicted to being put under anaesthesia. he had problems walking and the doctors said it was remnants of the clubbed feet or the spinal cord problems. he’d get winded walking across the room or just playing with the kids and there would be other reasons or excuses given. but he walked funny, had no energy to play like the other kids. he wanted to, but his body didn’t or couldn’t.
his mom knew something wasn’t quite right and had already been doing research online trying to diagnose her son when the doctors didn’t seem to have time to really listen to all the symptoms. when he was ten they finally come back with a diagnosis. he had a form of muscular dystrophy. a few tests later they determined it was duchennes muscular dystrophy — one of the most gut wrenching types of MD for patients and families to endure.
duchennes attacks young boys. onset symptoms usually hit around 9-12 years old. a short, health-problem filled life is their prognosis. there is no cure … yet. it robs them of their mobility. usually by their early teens they are unable to walk. arm and hand movements are lost quickly, too. in a few short years they tend to become a prisoner inside a body that just won’t move. their life becomes a constant struggle and ends way too early.
richie was diagnosed at ten and within six months required a wheel chair. that’s where a lot of his battles began. his mom would forever be his advocate, his warrior, jumping in and battling whatever she had to so that her son could have an easier life. all that time she was battling the knowledge of her son’s diagnosis in her own heart. God blessed her with more strength than i will ever know.
one of the first big battles came at school. a teacher, either not understanding his type of muscular dystrophy herself or just completely callous, gave him an assignment to write about his disease for a class project. i have to believe it was a lack of knowledge since i find it very difficult to believe that anyone would purposefully impose such a harsh task on such a young child. richie knew he was different. he knew he needed a wheel chair. but he didn’t know the eventual outcome of duchennes. keep in mind he was only ten when he was diagnosed.
at eleven years old he gets this assignment. his mom, always watching out for her son, hadn’t told him the long term prognosis. at the time of his diagnosis, medicines had not progressed as much they have today. lifespans for kids with duchennes was generally considered to be 12-16 years of age. richie had no clue that he could die by the time he turned 12 until he was forced to do this assignment. he came home frightened and told his mom what he had discovered.
it was his mom, his champion, that said, “where does it say that?” he showed her the paperwork he had found when researching it. she looked at it, held back her own emotions, and looked him in the eyes. the beautiful words that came out have been going through my mind all morning long. she said, “well, there’s the problem.” pointing to the author of the article she said, “it was written by this doctor … not by God.
“richie, God didn’t write this, so it isn’t accurate.” a true champion to her son. she is a remarkable woman.
on his 12th birthday he screamed for his mom early in the morning. she bolted to his bed not knowing what to expect. there he lay with a huge smile saying, “hey, i’m 12 and i’m still alive!” can you imagine being a kid with a birthday coming up and dreading it? just a kid and fearing birthdays! he did. but God didn’t write that article and over the next portion of his life he’d come to slowly realize it.
richie’s mom and dad split when he was very young. he didn’t get to see his father very often and mom had to play both roles. he wasn’t an only child either. he had two younger sisters to help him as much as give him grief … like all siblings do, but there was a deep love and bond between them.
i met richie’s mom when he was just 17. i had never dealt with a special needs child and was beyond clueless. but as our relationship progressed she AND richie both “trained” me. even after dorothy and i married i was still learning the ropes. there were a lot of scary and funny times over the last eight years. too many to recount here.
one story i do want to share, however, was his faith in God. there was a time when richie was in his mid teens and was battling a huge amount of depression. who wouldn’t? being a teenager should be the time of your life, but when you’re trapped in a body that could give out at any minute and you don’t know if you have a tomorrow … it can be daunting. he was rapidly losing motor skills and finding his mind worked fine, but his body didn’t. he began to pray for death. one day he heard a song by Mercy Me. it’s a song called I Can Only Imagine. it talks of imagining the day that God calls you home and you get to walk with Him, letting Him show you marvelous things. when all of life’s bad stuff is gone and all that is there is a God who loves you more than you’ll ever realize.
“Surrounded by Your glory, what will my heart feel
Will I dance for you Jesus or in awe of you be still
Will I stand in your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine”
it was listening to that song and hearing the words that God touched richie. he was about 17 when he gave his heart to the Lord. he realized he didn’t need to know all the details of his life or the disease that was slowly consuming him. he only had to know Jesus and His love. the more he knew the Lord, the less he had reason to fear. he became a young man filled with hope.
he longed and hoped for a healing. for years he would tell everyone two things.
- Jesus loves you, and
- He’s going to heal me.
nothing ever caused him to waiver from that … ever. the years went on and he would have more difficulties in his life. multiple times he would battle serious health issues or hospital stays. earlier this year he spent two weeks in the hospital with pneumonia. his mom and i worked our schedules so he wasn’t alone. there was almost always someone at his side for two straight weeks. i worked during the day from his hospital room and his mom would come up and spend the evenings with him.
sometimes we’d be so exhausted, but his mom and i would never quit on him. i didn’t get to know him before 17, but he became like my own son. there was nothing we wouldn’t do for him if it were within our capabilities.
over the last two months richie continued to tell people that he was going to be healed. he knew it was soon. but if you listened closely, the story was modified slightly. it was still God who would heal him. he just wasn’t sure anymore whether it would be here on earth or in heaven. and the Lord gave him a peace that it didn’t matter as long as healing came. you could see in his eyes that he was tired. he hadn’t been sleeping well and he had more and more problems with the simplicity of being able to breathe or eat a meal without it needing to be blended. he was growing weaker and more tired. and yet the smile never left his face.
in july we celebrated his 26th birthday. 14 years beyond that report he had read and feared. three weeks later, he went quietly, painlessly.
his mom said it was as if he was staring through her and moving his lips … praying or talking to someone unseen. she asked him what he was saying and told him she couldn’t hear him. he made eye contact with her and said, “mama” and then closed his eyes. just like that, he was gone. no fear, no panic, no distress.
in those last few moments i believe the Lord was in his room telling him it was time to come home. the time for his healing was NOW. i’m not sure what richie was going to tell his mom, his fighter, his champion.
i’m guessing he was trying to tell her, “mama, i love you.” or maybe it was, “mama, thank you for always being there for me.” or maybe it was, “mama, it’s gonna be ok, i’m healed.” and it’s those things that i cling to for my own comfort.
i loved my son, richie. i may not have been his birth father, whom he loved and prayed for continually, but i was his dad in every sense of the word … as much as i knew how.
richie taught me patience when i’ve always been impatient. richie taught me hope regardless of what the circumstances looked like. he taught me love, as he continually loved his dad in spite of disappointments. he taught me faith, as his never wavered. someone told us this past week that we may talk with God, but richie and some of his duchennes peers TALKED to God. i can only hope that someday i’ll have a faith that is as deep as his.
we may have been his champions here, but he’ll forever be my hero.
the following link is a video tribute to our son it was played at his memorial service. please, take a few minutes to watch. it will give you a further glimpse of how much this young man impacted our lives.
Memorial Video (it might take a couple of minutes to load)
— chunky ninja