This Is What It Means to be Held…

I’ve chosen my title from a very lovely song about dealing with tragedy in your life and how God holds us through all those things that threaten to break us in two and leave us on the floor in this life. In my previous blog, I talked about how I’ve been able to overcome a terrible hurt in regards to the end of my son’s life and try to use it for good in the lives of others.

Unrelated to that post, someone on FaceBook kindly asked me to tell them about my son. I set out to send them a message that would describe him to them accurately but briefly. That turned out to be impossible. There is no brief description of him. I decided to use him as the subject of this blog instead, because who he was is a big part of who I am today. He was a little man with a BIG impact. I am more than just a proud mama; I’m a woman changed by grace and the blessing of being this boy’s mama. Don’t get me wrong; I have just as much love for my other children, and they’ve changed me for the better as well, but the impetus for my choices are largely because of his life. So, without further ado, meet Khris.

Khristopher was our second child. He was born with Muscular Dystrophy and, very unusually, it affected him right away. In most cases, the earliest onset of those beginning in childhood start at three years old. The doctors were never able to give us a difinitive diagnosis so they had no more idea than we did about how it would manifest itself. They could guess and try and test for which one it was, but no tests ever came back positive. Also, there is NO history in either branch of our family of this disease. He was mysteriously unique.

He wasn’t supposed to walk, but he did. He wasn’t supposed to live to his teenage years, but he did. When he lost the ability to walk, he would scoot along on his bottom and move quite fast. His little sister loved to scoot behind him.

When he was six, his lungs were sufficiently weakened enough that he required a ventilator. Several of his doctors had my husband and I in a meeting and told us we could ethically choose to “let nature take it’s course.” They said we had to think about his quality of life and how his being on a vent would be hard for us to deal with. We fired them, asked for new doctors and opted for the vent. Then they said he wouldn’t last two weeks out of the hospital in our hands. He lived to be 15.

He was a favorite of most of his doctors and nurses. He was the only patient not to need sedation while on a ventilator before he had his tracheostomy. He played jokes on the doctors, interns and medical students while in ICU. When they leaned over to examine him, he’d set off a noisy toy, just to see them scream and jump back. Then he’d laugh without any sound while they tried to calm their heart rate. They’d ask, “Did you do that on purpose?” and he’d smile and nod. Then they’d laugh with him. This, when he was six.

His favorite hero was Superman because he always chose to do what was right, he was kind, he fought for the good of others and he never abused his power. He cried while watching Humane Society or ASPCA commercials about animal abuse. He loved babies and never missed a chance to hold one. He told me his fondest wish was to hold a baby of his own one day. He loved the beauty of nature and especially sunsets.

He prayed for others and told them so. He loved to sing in church, even after he had his tracheostomy and couldn’t make a lot of sound. He once put his last dollar that he had been saving in the offering plate. ” I thought you were going to buy yourself a soda with that, Khris.” I whispered. He replied, “No, Mom. The poor are more important than my soda.” I cried tears of pride about that. He once told me he wanted to be a man after God’s own heart like King David. I told him he already surely was. He didn’t believe me. He had no idea how courageous he was.

His spirit was joyful and he didn’t spend his childhood watching others leave him behind. He either worked to catch up or he called them back to himself. He adapted and he did not see himself as lesser or incapable. He always had a friendly word for strangers and had a knack for making them smile. He loved to laugh and he had a quick, sharp wit.

He loved to read but he couldn’t hold the books so I would read to him for hours at a time. We had lots of adventures that way. He loved to watch action movies with his dad. He loved to play video games and spend time with his big brother. He delighted in his little sister and told me that he loved her happy face and she had the biggest, best smile he’d ever seen. He always wanted to be the first one to wish us “Happy Birthday” or “Merry Christmas”.

He loved cooking shows and cooking. He couldn’t use his hands, so he told me what to do and I would mix up his creations. A lot of them were pretty good. He ‘sold’ a few of his recipes to Little Anthony’s Diner for their kids menu. I think it was his proudset moment to see his name on the restaurant menu; “Chef Khris”.

Two months before he died he grew quite upset. He was concerned that he wasn’t sharing his faith in Jesus with anyone because he was, by this time, confined to his bed. He ended up dictating his testimony to me and my brother read it from the pulpit one Sunday since Khris could no longer attend services. He never lived to see it, but I heard of about five people who have come to faith in Christ because of hearing about Khris and then reading his testimony. He would be so pleased.

When he went in to the hospital for the last time, they gave him less than two months to live. He beat the doctors again and lived for 10 more months. It was joy and agony. I was so grateful for the extra time, but I was terrifed of being at work when he left us for good. In that ten months, he managed to see every one of his family members for the last time. He sold his recipes, got an autographed photo from Paula Deen, and wrote his testimony. We finished the last Harry Potter book two days before he died and he told me he had a vision of Heaven and Jesus coming for him.

When he died, we were all at home.For the first time in months, there were no guests and none of us were out. I had made Khris’s favorite dinner. His dad had brought it home on ‘impulse’. After dinner, he and his dad were watching a new movie with Khris’s favorite actor. My husband asked him how he liked the movie so far, and Khris smiled at him. He passed away so peacefully that my husband had no idea until he looked up about fifteen minutes later and saw that Khris had gone. It was at sunset, Khris’s favorite time of day.

There was never going to be anyway to make that day easier or less heart-breaking, but in time, I’ve come to see what a privilege it was to be Khris’s mom. The Lord entrusted him to us. He could’ve given Khristopher to anyone, but He picked me. Can I waste the opportunity to share my story with others? Keep my special son to myself? Can I throw away the chance given to me by not learning the lessons he taught me about not giving up and using your life and your words for someone else’s good? Yes, his death hurts to remember, but the memories of who he was fill me with pride. How did God hold me? He gave me these memories and enough space to come to the realization of what a gift our time with our children are.  Khris being who he was has given me something to give back to the world. These memories have given me a way to find my voice and the courage to speak out about what hope I have that life can be better. It would be so selfish of me to leave his life locked up in my heart.

He wasn’t perfect. He had his times of depression, fear and frustration. Like any other kid, he could frustrate the heck out of us, too. But this wasn’t about his imperfections; it was about what’s been given to me. It’s about what he’d do with the opportunity to make someone else’s life better. He’d take it. And so will I.