This is a story I (Becky) wrote for Alive Alone and will be in their fall edition.
~ Joshua ~
I love fall. Autumn is my favorite season with the cool crisp breezes and the sunny warm days. Leaves turn every color lighting the woods with their brilliance. Even though I’ve been blind for many years I still hold the glorious picture in my mind. My husband and I were married October 1, 1988 on such a day. A year later on September 30, 1989 our baby boy was born. We were so happy with our new family even with the fussy Joshua keeping us up at night. But we thought all this came with the territory of being parents.
At a nine month checkup his doctor sent us to a pediatrician saying his belly was just too big. After a nightmare that led to a horrible diagnosis with this new doctor, we were sent to West Virginia’s largest hospital and he was quickly diagnosed with Glycogen Storage Disease (GSD 1a). We were told his liver didn’t break down sugars for the blood so he had dangerously low blood sugar. His medication was to drink raw cornstarch with his Prosobee every three hours. Tight diet restrictions were imposed like no sugar, no fruit or juices and no milk. As soon as he started on his cs my baby was transformed. He was on all fours squealing and laughing in his hospital crib. Wow! We had no idea he’d been so sick.
He seemed to thrive from then on until puberty. No one knows why but this disease goes haywire when the kids become teens. I loved watching him grow into a strong handsome teenager but could see him just getting sicker by the months. By his senior year, his sugar stayed messed up. He sweated continuously and he felt weak more than not. He also had chronic pain and some intestinal issues which always worsened when he was excited or upset. He felt so bad but determinedly went to prom and graduation. We knew it had been a real battle for him but he’d won. We were so proud of him; never in my wildest dreams did I think I’d be losing him soon. He began electrical school that September and loved it. The guys were mostly older than him and he found his calling. Although, he had to miss some days because he was too sick to get out of bed.
By the beginning of winter he was feeling worse and worse. On February 9, 09 I went into his room to wake him for his morning dose of cs and he wasn’t breathing. I franticly flipped him over and placed my hand on his chest. Nothing. It was so silent. My husband called 911, but it was too late, he was gone. Gone, a word that I hate to hear and still brings fresh tears. I knew he’d had a life threatening disease but never dreamed I’d lose him before his first anniversary of his graduation. I looked at his cap and gown the other day and his precious diploma that I know he only touched once and then gave me to put up for safe keeping. I found his bibs and baby shoes. He got a Make a Wish to Disney when he was nine and I found all his presents that he was given on that trip. He was so healthy then. How I wish I could turn back time.
In 2007 I was diagnosed with brain cancer and had a fifty percent chance of living. It was a horrible time but my wonderful son sat with me and gave me the courage to fight. His life depended on mine. His dad had triple bypass surgery in 2008 and Josh again rose to the occasion and showed his strength by becoming a man.
I’d went blind before Josh was born so he never knew me any other way. I was just mom. To me he was another pair of eyes and when he got his driver’s license it was great. He took me any place I needed to go.
We lost not only our beautiful son but our best friend. Joshua had turned into a extremely talented musician like his dad. He love the old rock and loved his electric guitar.
It’s been five and a half months since we lost him and the county fair will be starting. He loved the fair. Soon after school will begin, and then his twenth birthday will arrive without him. There’ll never be another Christmas for us. Joshua was the center of our life and still is. I cry every day for his loss but hang on to the hope he is in a better place where he is disease free.
Is fall still my favorite time of year? Yes, because I became a mom that last day of September and will always cherish the short time I shared with my Joshua. But the missing him is tearing my heart to shreds.
We love you, my son and Happy Birthday!
NOTE: A fund has been set up in Joshua’s honor for research for GSD. Please visit his page, Memorial Fund, to make your contribution.
