I ache for my husband. My soul yearns for him, and I wrestle with despair. Nevertheless, as I have encountered the different stages of grief, I have strived to decipher the vastness and resolution of death. My youngest, precious gem of a daughter cannot. She has profound, low-functioning autism. Her compression and processing abilities are severely limited. My husband, her father, passed away a little over two and half years ago. She continues to ask for him through sign language or on her augmentative communication program, sometimes up to 50 times per day. Their bond was miraculous as he was able to engage her and tirelessly advocate for her needs.
Although my endurance comes from my faith in our Almighty, I feel powerless as I hold back the tears each time she asks when he is coming home from work. She feeds off of my emotions- negative or positive. With that in mind, I have to choose life despite the dark terrain that I am traveling. I have to navigate and create a joyous perspective for both of my girls. Oscar Wilde’s quote reflects my goal, “To live is the rarest thing in the world. Most people exist, that’s all.”
Keeping my explanations simple and direct, I usually answer her by reminding her how much her Daddy loves her. How proud he is of her. That he did not want to die. That he wanted to stay with her, that she did nothing wrong. Sometimes people get sick. Most of the time, people get better. For whatever reason, Daddy did not get better. He is up in heaven with Jesus. He is not in pain anymore. In addition, I always convey to her that she can talk to him anytime. We always end our discussion blowing kisses up to him in heaven. She seems to need this tangible, comforting reminder over and over.
I facilitate a home based autism academic and therapy program for her. The trick to teaching her is to keep the mood goofy, light, and fun infused. Despite the gaping hole in our life, I desire her to know the grandness of being alive. That amidst our sorrow and her adversity that hope arises, that unexpected delights are always present, that the anticipation of wonder is still around the corner, and that she is loved and celebrated immeasurably by me, others, and ultimately by God.
With that said, I have formulated names for the days of the week that we use as a springboard to redirect and propel us forward with a new perspective. Right now the days are:
- “Supercalifragilisticexpialidocious Sunday”- As soon as I even start to say it, she starts laughing-which is music to my ears. Throughout the day I find ways to implement it into our conversations, it never loses its ability to promote giggles.
- “Make-Believe Monday”- We dress-up and act out various TV and movie characters. Playing pretend holds such magic and allows her to flourish.
- “Terrific Tuesday”- We keep a chart on how many times we can say terrific (sign or communication app), we aim for 20 and then we get a special Tuesday treat.
- “Wacky Wednesday”- Everything, and I mean everything, is set forth to be crazy and backwards! It’s her favorite day, especially when I try and wear her clothes and her socks on my hands.
- “Topsy-Turvy Thursday”- Upside down, turned around, inside out, etc.… You name it, we do it!
- “Freaky Friday”- We base this on one of her favorite movies. We reverse roles; she becomes the mother and me the daughter. The twinkle in her eyes on Fridays never cease to charm me.
- “Serious Saturday”- As the name implies we attempt to be stern; however, as cause and effect takes over, this has become a proven avenue to being lighthearted and cheerful.
I marvel at how my daughter unknowingly has made my heart teachable; how following through these daily themes has altered my being and made my spirit bendable. It reiterates the fact that we have the power to cultivate our thoughts and enrich our lives. Even if you don’t have children, maybe you can use this silliness to fuel a change of perspective? Moreover, as Proverbs 4:23 states, “Be careful how you think; your life is shaped by your thoughts.” A Wacky Wednesday to all of you!
Blessings to You,
Lisa Dempsey Bargewell
Next Wednesday’s blog topic: The Day I Lost My “Esprit” and Put On a Mask!