We can do hard things, but never alone

I walked across the stage earlier this month and received my master’s degree after two years of grad school. My husband, sons, siblings, and mom cheered for me from the stadium stands. “That’s my mom!” my 13-year-old son, Gideon, yelled after the cheering subsided. The audience collectively aww-ed while I teared up and was hooded by my professor. Part of me felt ridiculous over all the pomp and circumstance; the other part, ridiculously grateful.

This degree wasn’t just mine. It was earned by all of us.

From left, Gideon, Matt, Patrice, and Jonah Williams celebrate Patrice’s grad school graduation. (Courtesy of Patrice Williams)

Getting a degree is hard at any age. Getting a degree as a full-time wife, mom, and employee is even harder. But getting a degree as all those things in addition to caring for two medically complex sons — Gideon has severe attention-deficit/hyperactivity disorder, and Jonah, my 17-year-old, has epidermolysis bullosa (EB) — felt at times like it might do me in.

My husband, Matt, and my boys sacrificed so much so I could pursue this dream. I spent many nights hunched over my computer till 10 p.m. or later, after a full day of work, while Matt took care of cooking, cleaning up after dinner, assisting with homework, packing lunches, and handling any nighttime wound care.

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Jonah, who is pretty mom-dependent, endured two years of my semi-presence, as I rushed him through his long stories (“Land the plane, dude”) or quickly tended this or that boo-boo, most of the time in a frustrated huff (“Why didn’t you tell your nurse about this before she left?!”), so I could get back to my 20-page readings, discussion responses, projects, or papers.

There were countless times when I was so exhausted that I inadvertently made him feel guilty for needing my care, was short with him when he complained, or was insensitive to his pain and the hardship he faces on a daily basis. I lost count of the times I dismissed his questions or concerns or exclaimed, “Why are you just now telling me this?” or “I can’t do anything about that right now,” or “Text me about it tomorrow; I can’t think about anything else. I have to finish this!” often making him feel like a burden instead of receiving him with patience and compassion.

He has needed me his entire life, and for the most part, I have been an involved, attentive, and compassionate parent. But for the last two years, although I’ve been a stellar student (fellow overachievers, holla at your girl!), I have felt like a subpar parent. I’ve not been bad. I’ve just been incredibly busy and so, so tired.

But my family, my people, never held it against me. I was loved unconditionally, forgiven instantly, and, two weeks ago, championed across that stage, cheered on by my always-and-forever biggest fans.

Patrice Williams poses with Gideon and Jonah, two of her biggest fans. (Courtesy of Patrice Williams)

When Jonah was born, I became his full-time nurse instantly. At 27, I had to quit my job overnight. My education felt pointless. I stopped earning income. I cashed in my measly retirement. I went on my husband’s insurance. I became a stay-at-home, full-time caregiver for close to a decade, losing years of potential work experience, Social Security earnings, and 401(k) contributions.

When I was eventually able to return to work, I went into a different field, starting in an entry-level position, learning, struggling, and working to find my way back into the “real world.” With an undergrad degree that no longer matched my experience, I decided at the age of 42 that I needed to go back to school. What EB took from me, at least in part, I was determined to get back. I had no idea how I was going to do it with the daily demands on our lives, many of them exacerbated by EB, but I knew I was going to fight to get it back.

But I wasn’t the only one fighting for me.

“We can do hard things,” I tell my boys. But rarely can we do them alone. I couldn’t chase my dreams if there weren’t a whole team behind me, pumping up my shoes and feeding me carbs (there was an inordinate amount of frozen pizza) so I could cross the finish line.

Jonah, despite his constant pain, challenges, frustrations, and uncertainties, will cross his own stage next year as he graduates from high school and, hopefully, will go on to live independently on a college campus.

It will be extremely hard. But he absolutely won’t do it alone. I can’t wait to spend the next year cheering him on so that he can say, again, what he said after he graduated preschool: “I’m a graduator!” Just like his completely humbled and extravagantly loved mom.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.