When My Son's Physician Suggested I Take Care of Myself


Last week, my husband and I took our 4-year-old medically complex son to one of his many appointments. It was a routine check-in with the developmental pediatrician and behavioral services team. We talked about his behavioral challenges at home and school, his current academic performance and overall physical health. We discussed discipline strategies, developmental milestones, briefly touching on medication.

Suddenly, and without warning, the focus shifted from my son’s needs to ours. “Have you considered distancing yourself a little, taking some time for you? Give it an hour a week, an hour that you focus on your needs. Maybe try yoga, or have a date night. Just step away for a little while.”

Instantly I was filled with rage and disbelief. Retreating into myself, I nodded in agreement, a storm brewing in my chest. “Thank you, that’s definitely something we will consider.”  After a brief and awkward pause, conversations about my son resumed. But the damage was already done. In the time it took for the physician to offer her unsolicited advice, my biggest fear was brought out of the shadows and into light: I am not as put together as I try so desperately to appear, and it’s starting to show.

After experiencing a major depressive episode last year, I have prided myself on the level of care I am able to provide for my children, and even more so, on my ability to mask the anxiety I feel. Unless you’ve read some of my other works, or are my therapist, you would never know I am not the person I pretend to be. At first glance, I may appear to have it all together. I am an overly organized advocate for two children with medical exceptionalities. I manage appointments, and am in constant contact with therapists and doctors. I make informed, educated decisions based on the medical, social and emotional needs of my children. I attend IEP meetings armed with my son’s most recent evaluations, diagnoses and collected data. I am most always smiling, maneuvering life with jokes and lighthearted conversation. I have maintained this façade for years, hiding behind what I project out into the world. To look at me, you might never know I am slowly being crushed under the weight of parenting children with disabilities. Anxiety is a staple in my life, an ever present foe bringing with her tears, heartache and rage. But I hide it so well, or at least I thought I did, until recently.

I’ll admit I struggle daily with finding balance between what I expect, and what actually takes place. I have a hard time accepting that the world does not go according to the plans I have made. My life is chaotic, filled with challenges and things being out of place. In the beginning of this journey, I accepted this as fact. Not all things will happen according to plan. Life will not follow a well-mapped course. Mishaps and missteps will occur. I rolled with the punches, and made the best of bad situations. Unfortunately, over the years, this outlook on life has dissipated, giving way to obsessiveness over what I can in fact, control. I have developed a suffocating need to appear “normal,” put together and on top of my game at all times. It is imperative that I look OK to the outside world, especially medical professionals. This need is what drives me, and while it’s not the healthiest stress management technique, it provides me with some level of comfort. I need control. I strive for it. In a world where so much is extraneously influenced, I must control what I allow others to see. Perception, to me, is everything.

But what if it’s not? What if actually being OK is more important than appearing so? Maybe, just maybe, I don’t have to overcompensate for what I perceive as shortcomings. Maybe it’s OK not to put on a brave face for the world to see. Maybe I can be human; I can fail and struggle, allowing those in front of me access to my not so well managed world. Maybe it’s time to stop faking it until I make it, and actually find ways to manage. Maybe I do need to take up yoga, or knitting or bird-watching. Maybe I should distance myself from the constant demands of parenting kids with disabilities, even if only for an hour, once a week. Maybe it is time for me to take a second and actually breathe, letting go of what is out of my control.

As much as I hate to admit it, this physician may be onto something.

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