This is our journey. Starts with an earthbound angel and ends on the first day of Advent, when he got his angel wings and entered Heaven to experience the childhood that Leukodystrophy stole from him.
Holding Stephen as he slept was one of my favorite things to do. He would rest so peacefully and my arms never grew tired of holding him. He did love his binky.
He loved his Papa Steve and boy did Papa Steve love him right back. While he could still hold his head up, the shoulder gave him a great view of the world. Sleeping or checking out the world was always better with Papa Steve.
When he rode his first merry go round, we knew that he loved it. The music, the motion and the bright lights were fascinating to him.
Amelia had him Christened when he was seventeen months old. Merisue and her husband Calvin became his God parents. No one realized that the journey was about to become so different from anyone's expectations. We couldn't have traveled this journey without these fine people.
Playing was a great past time for this little curly-headed boy. He loved his toys and his books. This is when we started noticing that he would fall down a lot.
Took him to the doctor and it was decided that ear tubes would help him with his balance. Surgery was successful, but the falling down continued.
Following the advice of Early Childhood Intervention, an MRI was done and the results came back during March 2011. When we sat and waited for the doctor to explain what the results meant, my heart sank and I knew that our life had just changed in ways that we could never imagine.
This is how old our little guy was when we heard the news that changed our lives forever.
Along the way, we were helped by some amazing people who heard our story and wanted to celebrate our life. Belinda Higgins from Higgins Photography, arranged a couple of photo shoots, so that we could have physical memories of our precious boy. She captured his angelic look and then she invited us back for a shoot with Santa. By this time, Stephen could no longer hold his head or body up, but the fascination of Santa gave him a boost of energy and he checked out the big guy in red. This was the last picture we would have with Santa.
Between the Angel shoot and the Santa shoot, eating was becoming too difficult for Stephen, so he had to have a feeding tube placed. In this picture, his momma and he tried to catch some rest in between nurses' visits and medication. Feeding Stephen with the feeding tube saved him calories that were used by drinking and eating by mouth. We had many times of learning what not to do and a few times of pure panic when his stoma gave us heck. We became experts after awhile on how to feed, clean equipment and everything we didn't know before this. In fact, we were amazed that more hospitals weren't ready for feeding tube children.
Stephen handled the feedings well, but boy did he miss his eating and drinking. For awhile he could still have ice cream (Red Velvet was his favorite), but then even that was a choking hazard. We pretended that he was drinking coffee with us in the mornings, because he loved the smell and taste. (A drop on the lips would bring a smile to his face. But eventually that drop was even stopped.)
Throughout all this time, we made sure that Stephen's world was as happy and pain free as possible. Medications and therapy helped him with his spasticity and pain. He loved going to therapy (when he felt well) and the "ladies" all fell in love with him and his endearing spirit.
When we met, Jamie from JME Portraits, we fell in love with each other. She saw our little guy's wonderful spirit and captured it in pictures featuring her own children. What a wonderful gift this was for us. Then when his little brother arrived, Jamie took priceless pictures of the two beautiful boys.
Throughout the days, we found things to amuse Stephen and the amusement came from unusual places. Like who would have thought that hippos would be so intriguing. Well, Stephen loved his hippo and when we sang, "I want a hippopotamus for Christmas" his face lit up. That song brought a smile throughout the years. In fact at his memorial/visitation the song was the last song played after the rosary. Got half of the people singing and the other half wondering, "What the heck?"
Trips were taken. Make a Wish provided a dream vacation, including EVERYTHING you could imagine. Hospice of South Texas's social worker arranged a behind the scenes trip to Sea World and it was unbelievable. Stephen was held by "his Nathan" and they looked into the great blue yonder. In September, Project Angel Fares reached out and we all got to go to San Antonio to stay at an unbelievable resort and then enjoy Morgan's Wonderland. Memories of that time are held close in our hearts and brings smiles to our faces.
The days turned into months and then the week of Thanksgiving arrived. Early Monday morning, Stephen started to show signs that his little body was tired and he needed to rest. The Hospice of South Texas nurse came out during the night and helped him get comfortable. During the day, his nurse, Tammi and his doctor, Dr. Meyer came to see him. We had discussed that one of these times, he wouldn't be able to recover from his "setback."
By the afternoon, he had more energy and was more awake. What we loved about our Hospice friends is that they were honest, when we asked them questions. I asked Tammi, "Is this a rally or a comeback?" Her reply was, "I am going to stay positively optimistic, but I am afraid it's a rally."
I was at home that evening and packed a bag to go back to stay with the family. Stephen wasn't doing well, and as each hour passed, we realized that he was holding on, because we loved him so much. As the days passed, I don't remember what we ate, when we bathed, who was with us or what we talked about. I do know that Hospice of South Texas people put their families on the back burner and took care of us that entire week. We held a vigil and we made sure that Stephen was held, comforted and loved on during this time, just like he was for his previous four and half years. Medication, oxygen and comforting touch kept pain as far away as possible, but there were times that his pain was stronger than any human concoctions. His nurse, Tammi and his Dr. Meyer worked tirelessly to make sure that whatever he needed they would provide. The pharmacist came back from a family gathering, so that Stephen's pain could be managed. Hours ticked by, people came and went and days became night and then daylight would come. On Thanksgiving, Stephen was stable enough that the nurses and doctor went home for awhile and Amelia laid on the couch with her precious boy for a comforting time.
The vigil continued with our presumed "deadlines" unmet. We tried to figure out why Stephen was fighting so hard and then we realized that we had always taught him to never give up. Sleep for us was grabbed as we could and on Saturday night, I got up after a couple of hours and went into the kitchen and said, "I need to hold him. I need to hold him." Sweet Nathan was in the rocking chair and he very graciously handed my sweet boy to me. After the house was quieted down, Stephen's volunteer, Susan, sat next to me and we visited. Coffee and cake was shared as we talked about nonsense. At a little after three, I said, "That's different," indicating Stephen's breathing. He took a sweet breath, Susan went and woke everyone up and after two more breaths, Stephen had a soft smile on his face. We all hugged, kissed him and told him how proud we were of him and how much we love him. Hospice was called and the nurse came to pronounce his passing. By then his God parents had come back, along with his Papa Steve and all his hospice angels. We sat around and talked about our favorite times with Stephen and celebrated the sweet, little guy. Finally, the funeral home lady came and we walked our boy out to his stretcher. He had a pillow and blanket and she was kind enough not to cover his face before she rolled the stretcher into the vehicle.
Later that day we went to the funeral home and made his final arrangements. The funeral home people were outstanding. Our little boy was treated with the dignity and respect that he deserved. We held a visitation and rosary with over two hundred people in attendance. He touched so many people in his short life, that it takes my breath away, sometimes. He was the joy of our life and he resides in our hearts to this day.
This picture of my sweet, precious, Grandlove and his future brother (with his mom, of course) was provided by a very wonderful person. Jamie took many hours and many photos during this sunny day to capture the best of all of us. She does this for families with children who are fighting for every day of their lives. That few hours was filled with laughter, no medication, no tears and for that we are forever grateful. Thank you, JME Portraits of Cypress, Texas. You and your family are part of ours, now.