What is Strength?

It's the end of May. The blossoms have disappeared and soon there will be a fresh crop of cherries on our tree. My garden is struggling to defend itself from earwigs and caterpillars, but inch by inch it grows and thrives. Queen Teen is back in school half days and this morning she rode the bus, happy to once again sit with her best friend in the front seat. And very slowly, I am regaining a little of my balance. That balance is delicate, but strengthening. Day by day, I feel my breath return to my body and the shaking in my hands has stopped. I'm not perched on the edge of my couch ready to leap into action at the first sign of trouble from Queen Teen. My teeth hurt from clenching my jaw too tightly for months and there are much bigger bags under my eyes, but overall, I am stronger.

When Queen Teen got sick in early March and her health quickly declined, it felt as if I'd been kicked in the gut and thrown to the ground. Frantic became the norm as I struggled to take care of her and deal with her new challenges, while also working in my first year as a teacher and coping with "IEP season." Forget writing, I didn't have the strength to do anything more cerebral than watch stand up comedy on Netflix. I knew I had to hold it together, and the funny thing is my depression improved with the immediate crisis. I didn't have time to be depressed, my daughter needed me.

Is that what strength is? Putting your own needs aside for the benefit of another? Perhaps, but when I began to have dizzy spells from lack of sleep and nutrition I realized being strong is much more complicated than having the ability to calm your child after she's thrown up again in the middle of the night. Knowing how much you can give, and what you need to do for yourself so you can continue to give, seems to be an important part of strength. What good is mental strength if your body is exhausted, or vice versa?

As Queen Teen's health worsened, I watched the people around me fall apart too. This made it even more imperative that I stay strong, because I honestly felt that others were unable to be there for her. Funny, I don't blame them. The first weeks of this crisis were terrifying, and some people just can't face the idea that a child might die. As others withdrew, I did too, deciding it was better to just focus on Queen Teen's needs and ignore my own.  But now that the weeks have turned into months, I understand how important it is to surround myself with people who will be there, no matter what. And many people have stepped up; friends who live far away have sent flowers and encouragement and little gifts to Queen Teen to keep her spirits up. My boss has been wonderful. I'm basically still on probation and have had to miss a lot of work to take care of Queen Teen, but my boss says, "Family comes first."

The second ingredient of strength: a support team. But before I can build a stronger team, I need to understand what my needs are beyond just taking care of Queen Teen; what do I need to thrive, be healthy, mentally strong, and balanced?  What are my boundaries? I've decided to surround myself with people who will stand by Queen Teen no matter what may come and dump the people who can't deal with her illness: that includes family. I will not feel guilty for setting boundaries. Guilt is a strength stealer.

Queen Teen has shown me the third major component of strength: laughter. Despite being sick, hospitalized, run through invasive tests and looked at by more doctors than she can comprehend, she continues to smile. She fights every day for her life, and will not give up easily. She is able to find joy everywhere and under circumstances that would cripple a Viking. She cracks jokes easily and when she laughs everyone around her has to smile. Where does that ability come from? She is able to stay right here, right now, and not worry about next month or next year. Yes, I know it's easier when you're not the person tracking down doctors, filling out forms, and planning for the long term, but she is the person who lives with the disability. I can escape it for a precious few hours or a weekend away. For her, there is no escape. Instead of letting that reality destroy her, she keeps fighting, and laughing.

A little bit of laughter and searching for the tiniest spark of joy in what seems to be a tragedy can create strength when I'm at my lowest. I work in my garden and watch the tiny plants turn dark green in the sunshine. Taking a deep breath, I smell the dirt as it tumbles through my bare fingers. The hummingbird who won my feeder through hard battle with at least four other hummingbirds zips over my head. Queen Teen yells, "Mom!" through the back door. "What are you doing?"

Gathering strength, I think.

The Bill of Rights for Caregivers

The following is a list of rights caregivers must have to remain strong and take care of themselves. All too often, caregivers forget that they need support just as much as the people they care for. This includes me.

A Caregiver's Bill of Rights

by Jo Horne

I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

Recently, I forgot about this list, which is why I'm now completely exhausted. I forgot to ask for help, take breaks, and give my body the food and rest she needs. It's not surprising; parents of children with disabilities tend to devote their entire lives to caring for their children, even at the expense of their own health and well being. After 13 years and hundreds of hours of caregiver training, I know better, and yet I do it all the time. I get busy and focused on Queen Teen and slowly forget to take care of myself, only remembering that my body requires a certain amount of calories every day when I get the shakes and feel dizzy. Oh yeah, food. When did I last eat, I mean, some kind of food other than just a protein shake and a bottle of water?

Maybe one of these days I'll realize I'm falling into the old mother-of-a-child-with-special-needs, sacrificial trap before I get caught. For now, I can only give myself a good stern lecture, forgive myself for becoming a martyr, and find something really good and healthy to eat. Then tomorrow I can try to balance my own needs with the needs of my daughter and hope I figure this out a little better one day.

Or not. Has anyone managed to keep this all in balance?