Not the Sanctuary of My Dreams

Why isn’t the joy bubble refilling faster? I thought we were writing something whimsical and fun this week? What is wrong with you? Snap out of it. (The A side of my chatter) Give yourself a break. November is already a weird month for you. You often get the blues around this time of the year. You are allowed to be woeful for as long as you need. (The B track.)

The week was long. Emily did not bounce back quickly from her cold bug. (She was too sick for her adult program but well enough to be extra spicy and saucy.) She made it clear she was not happy being trapped in the house for a week. I get it Emily—I totally get it. The cough, the teeth grinding, and rhythmic sounds seemed to bounce off the walls of our home and grate on my nerves. The earbuds I often wear that dull the noises did not seem to do the job. The earbuds are not to blame but rather my inability to not be reactive to her noises. I was feeling isolated. Todd was camping, and Justin had been in his room all weekend because he was sick too. I was caring for Emily solo. Thanksgiving dinner was thwarted due to illness. I was having a bit of a pity party of one. (This is not a state of mind to encourage or coddle.) Late Saturday night, after I tucked Emily into bed, I decided to watch a movie. It was between a new Hallmark movie I had recorded and a documentary about caregiving. I decided to watch the documentary Unseen: How We Are Failing Caregivers & Why It Matters. (Probably not the best choice considering my woeful state. I may have been encouraging my woe a bit.)

A parent in the movie says something to the effect that our home is supposed to be a sanctuary. For a parent with a severely disabled child, it often feels like a tomb. A tomb is at least quiet, I thought but realized his words hit a nerve. There was definitely something in his words that I felt at my core. It resonated with thoughts and feelings that were below the surface. I have always desired for my home to be a sanctuary. I wanted a home that was safe, quiet and an escape. A place to want to be above anywhere else.

When I was young, I could not wait to leave the house. I hated being at home for many reasons. While my brother and sister found comfort there, I did not. Our house was cluttered and disorganized. It was less than 500 square feet, and I could not escape the noise. The television was always on, and our dogs were usually barking. My parents had friends drop by regularly. It was the antithesis of the home I wanted to create and live in one day. My ideal sanctuary would be calm and quiet. The furnishings would be comfortable and stylish. Beautiful candles would be burning, and essential oils would billow out of diffusers. My home would be a quiet place where I could read and write. It would be a refuge and escape from the outside world.

For years I have strived to create that environment in my home. Before children, I think I succeeded to some extent. Once Justin and Emily were born, not so much. As Emily gets older, I seem to be failing miserably at creating the home environment of my dreams. The television is always on. It is either on The Wiggles to keep Emily comforted or on volume 11 to drown out Emily’s vocal protest of watching something other than her shows. Emily is rarely quiet. She is in constant motion. She crawls around the house, at lightning speed, throwing things off tables and counters. Emily throws everything. She opens the drawers and removes the contents. The dogs are generally barking at something or another. There is comfortable furniture underneath dog toys and blankets, but burning candles is rare (and unsafe) with Emily around. It is similar to the house of my youth. The home I escaped from as often as possible.

Isn’t it funny what we bury below the surface? This film sheds a light on the fact that caregivers are crushing under the pressures of caring for their loved ones. It shatters the illusion that caregivers like to pretend they are doing it all and doing it well. It highlights the lack of services, especially for our children as they get older or those that require personal hygiene assistance. It discusses the need for more respite and qualified caregivers to fill the damn-sized gaps in our care plans. None of this was news to me or shocking to see. What surprised me was that as the movie ended, I realized I was mourning the lost dream of living in the home I always wanted. It is not the sanctuary of quiet and comfort I dreamed it would be. My home is not the place I want to run to for safety and comfort. I must mourn and grieve the loss of this unmet expectation, and come to a place of acceptance for my reality. Once again, I conclude, I have some work to do.

Note: I recommend that anyone in the trenches of caring for a loved one watch Unseen: How We Are Failing Caregivers & Why It Matters. Those who want to understand or support a caregiver definitely should run to watch this film. I know what needs to change to make our caregiver lives better, but I do not have the time, energy, or resources to battle the problem head on. My opinion is that we caregivers need an army of caring individuals to step up and fight the battle for support and resources on the frontlines while we continue to care for our loved ones with all we have. We are barely able to manage the immensity of daily challenges and obstacles.