It was three o'clock and I decided to stand outside to wait in my new hot pink beehive wig. Just as I finished adjusting the three plastic black spiders, that cascaded down the sides, I saw the school bus coming. It did not take long for my Josiah to notice. He immediately lifted his head smiling.
I watched as the bus aid began to unbuckle the tie downs that kept his wheelchair in place. His smile widening as I blew him a kiss. Strapped behind Josiah was my middle son Cody. He was now beaming as he looked out the school bus window at me. It pleased me so much knowing my simple effort could make them so happy. I am sure somewhere else in the world would be a mortified teenager, if upon there ride home from school, stood a mother waiting dressed in biker clad and a hot pink wig. As for my two youngest they simply adored my silly side and encouraged it. Often asking me to do voice overs. My imitations of Marge Simpson could drive my oldest son Zach to leave the room, but my Josiah and Cody would engage in long conversations as I impersonated the blue haired cartoon character Marge.
I hustled the two of them inside the house to discuss the plan to prepare for trick or treating that evening. They were delighted to learn their oldest brother Zach would be joining us dressed as Santa. A few days prior Zach had generously volunteered to accompany us. I welcomed his help immensely. We loved Halloween and I felt determined to make it an enjoyable evening to share with my sons. I could remember past Halloweens when it was just me attempting to get them both up to the neighbors front doors to get treats. Even though both Josiah and Cody had electric wheel chairs to go from house to house Halloween night did not happen easily. We hardly ever encountered a house with out several stairs to the front door. Which had me leaving them alone down by the street or in driveways, waiting while I ran up to the homes explaining my waiting sons below. The homes with accessible side walks leading to their lit entrances did not allow any room for a wheelchair to turn around. Often my sons wheels would find dips in the grass and become stuck, sometimes requiring all my strength to pull them out. Now I beamed, I would have a companion and muscle with me and I did not have to ask for help. It also felt wonderful to not feel like I was burdening anyone. If you have never been at the mercy of the assistance from others you can not even begin to understand, how degrading and helpless it can feel at times.
With dinner done and my nephew George also now joining us we dressed to head out. I quickly found some items to turn him into a pirate, joining Cody's theme as captain Black Beard. I was rather surprised to learn on this chilly day that my 14 year old nephew George came to us from school with out a jacket. As a doting meddling mom I saw that I could take care of that too. However, I could not help but wonder as I assisted my two sons and nephew, how much I handled without giving it a second thought. I had fitted three dogs in costumes, turned Josiah and his chair into Noah and the ark. Dressed Cody and George into pirates along with turning the front of Cody's wheelchair into a pirate ship, and then laid out Zach's Santa suit. With five minutes to spare, I also managed to turn my self into a sort of Jack Sparrow look a like. With my pride in tack cause I was able to do it all, we were ready, dogs and all.
We walked the neighborhood in our little group. Zach and George running up to doors for Josiah and Cody. Me so thankful for the help. On several occasions those answering the doors would come down to where I waited with my boys, complimenting them on their costumes, and admiring the dressed dogs. I can not help to think though, it was my son Zach dressed as Santa who drew people out of there homes. As he captivated those who answered the doors, with out hesitation he directed their attention to his waiting brothers.
It was a good HALLOWEEN for all of us. After George was finally convinced it was time to go home I put my two younger sons to bed. I had some spare time to thank Zach for giving up his night to help me out. Zach and I talked a bit about some of the responses he received from people as he told them he was trick and treating for his bothers. A few people actually apologized because they didn't notice his brothers right away. Zach asked me how was I able to handle it all these years having to explain over and over the condition of his brothers, he told me it was exhausting mentally, and physically, just taking care of them for a few hours. I went to bed that night feeling good that I could still do all that I do and take on extra. After all someone less than half my age had just told me my life exhausted him, I had to laugh to myself, he did not even have to fit in the dating part.
It has been a arduous struggle for me to accept that am I loosing in my capability to lift my son Cody. Somewhere I will undoubtedly hear from someone telling me a ceiling lift is my answer or a hoyer lift. The lift we have, it helps in the home in two rooms, it does not help outside the home. What I am really talking about is much deeper. Whom I hope to reach is the mom or dad who understands this part of loosing yourself. Loosing the physical ability to care for your child. The pride that comes with knowing you can. The will to go that little extra, just to do it on your own. The never ending sacrifices you make because you love your child so much. The hours and hours, spent on finding ways to make it all work for your child. Also, having to live with the fear, that after all this you may just have to go it alone, and because of your love you hold for your child you are willing to accept all of it.