Self-help books often issue an edict that life is what you make it. If you want it, then just go out and get it. While that may work for some, most of us live in a world happening around us, to us, and either moving against us or with us. We can’t control life’s tides no more than we can control the ocean’s tide. Being at the right place, time, circumstance, etc has a lot to do with it. Now, that’s not to say that you’re not a special snowflake if you just jump on a boat and set sail without a map, food, water, and other supplies. Life is about planning, thinking ahead, and making moves to be in that right time and place. For some, however, no amount of diligence and prep work alters the course life’s tides takes you.
So, where did I end up? I applied at my daughter’s school. The cafeteria was hiring. It took three times applying before I got a shot. They didn’t think a nurse would last in an underpaid, hard labor cafeteria job. That was two years ago, and I’m still there. It was a learning experience for sure. I thought it would be opening cans and scooping it out. Uhm, not hardly. Most is made from scratch. I didn’t even think about every inch of that kitchen having to be scrubbed down monthly. I didn’t think about bulk mass products and goods coming in 50-pound boxes that had to be stored safely... much less that frozen foods would be being put away in Antarctica. I know hyperthermia firsthand now, by the way.
I thought my course was set. I worked hard to finish nursing school. I made moves in my first nursing job as a medication nurse that led me to becoming charge nurse within months and ADON (assistant director of nursing) after a year. I treated starting a family in the same manner, saving and planning for two years to ensure everything would be perfect for a baby. Little did I know that no amount of prep work would offer any assurances, much less perfection.
Kaitlynn was born September 29, 2004. It wasn’t long before I noticed she wasn’t developing like her peers. She remained in a newborn floppy state at four-months-old, and would remain with an infant’s motor skills for the remainder of her almost 12 years on this earth. Despite seeing a multitude of experts from New York to New Orleans, whatever caused her disability remained idiopathic. Neurologists in St. Louis gave a best guess of mitochondrial disease.
It was financially challenging... no, it was financially devastating , but I never returned from my maternity leave to nursing. Instead, I stayed home and poured myself into her 24/7 care, medical journey, and researching anything and everything possible to change her life’s course. Nothing prepares me. No amount of work or want could change the choice I had to make between my own dreams and becoming Kaitlynn’s caretaker. The choice was easy for me. I’d live in poverty. I’d ruin my credit with medical bills. I’d nix all semblance of a social life to never leave her side. What I wanted was for her to be able to play like other kids. What I wanted was for her to not be constantly poked and prodded with medical procedures. What I wanted was to hear her say “mama.” But, there wasn’t a path to ‘if you want it, then just go get it.”
Kaitlynn passed away shortly before her 12th birthday. Losing any child is a gut-wrenching experience, but for parents of handicapped children, it’s a pain that cuts beyond the loss of a child. I’m the only person who ever fed her, bathed her, combed her hair, brushed her teeth, and so on. I slept beside her every night of her life with the exception of a one week stay in ICU unconscious after the birth of my third child. Her very existence became entangled within my own. Imagine having someone completely and absolutely dependent upon you for every single need they have... your life becomes theirs - literally.
After Kaitlynn’s death, I realized I had lost my identity . The six hours per day, for example, it took to hand-feed her each meal was suddenly nothing but empty space. Who was I? Sure I had two more kids that still needed my time, but I had become so accustomed to multitasking their needs in around Kaitlynn’s needs that even those tasks felt empty. Going somewhere and just easily getting out of the vehicle was excruciating. I’d become so automatic in 1) unloading a heavy wheelchair 2) getting Kaitlynn just right in it, 3) slinging an infant car seat on my hip, 4) grabbing my toddler’s hand ... and then looking like a circus trying to lock the vehicle and shimmy-roll into a store for a buggy. For a long time, I’d have to just stand by the vehicle and remind myself that screaming obscenities at the trunk would get me locked away.
Losing your identity in caregiving is easy. It’s a transition you don’t feel coming or happening, and you often don’t even realize it until what’s held your identity for so long suddenly isn’t there any longer. To be any kind of mother to my two surviving children, I knew I had to find myself again. I had to pick up the pieces of a broken heart and try to figure out who I’d be post-Kaitlynn.
I knew that giving anyone the nursing side of me was out of the question. That was something that Kaitlynn took with her. Again, what I wanted was to hold her again, have her here, it to all have been a horrid dream. But, it wasn’t. No matter how much I wanted something, just going out and getting it wasn’t in the tide.
Finding a jobseemed to be a logical first step. Something was needed to give me (Ashley, not mom) purpose, fulfillment, usefulness again. I applied for everything you can imagine - secretary to sales clerk. I was met with the same “you’re overqualifed and inexperienced” mantra from hiring managers. I’ve yet to figure out how anyone can be either in the case of a minimum wage job. I digress.
So, where did I end up? I applied at my daughter’s school. The cafeteria was hiring. It took three times applying before I got a shot. They didn’t think a nurse would last in an underpaid, hard labor cafeteria job. That was two years ago, and I’m still there. It was a learning experience for sure. I thought it would be opening cans and scooping it out. Uhm, not hardly. Most is made from scratch. I didn’t even think about every inch of that kitchen having to be scrubbed down monthly. I didn’t think about bulk mass products and goods coming in 50-pound boxes that had to be stored safely... much less that frozen foods would be being put away in Antarctica. I know hyperthermia firsthand now, by the way.
It ended up being a tide that seems lowly to most, but that turned into one of the greatest waves I’ve chosen to ride. It’s given me a unique purpose. I never imagined the amount of kids who are so thankful for the school food because it’s the only hot and nutritious meal they get for the day. I never imagined that a group of cafeteria workers, most of whom don’t have a high school diploma, could teach me so much about so much.
Slowly, yet surely, I’m finding myself again. I miss my Kaitlynn every minute of every day, but I know she’d be proud that I’m not drowning in tsunami her absence left behind. Don’t allow self-help books to lead you down an unforgiving path of wanting equals getting. It doesn’t. Life’s tides can bring you in all sorts of directions, some favorable and some heartbreaking, that’s out of your control. So, focus on what you can control if you’re a caregiver trying to regain your sense of self. What you can always control is how you respond to any given set of circumstances. You can keep paddling on that tide, focusing more on what you need than what you want.
Comments
Post a Comment