The Tattoo That Gives Me Hope While Parenting a Child with Special Needs

I’m a tattooed mom. That’s right. I’m 34 years old and still getting tattooed. Some are just designs I thought were pretty, but most have a special meaning: family, love, life and messages to remind me of important things. The phoenix on my right forearm has the most important meaning of all.

It’s easy to feel like giving up when you’re parenting a child with special needs. After fighting the same battles day after day, week after week, year after year, things start feeling a little hopeless. There are days I wonder why I bother and why I keep fighting— fighting the system, the teachers, the doctors and even fighting myself.

Progress is slow and inconsistent. People say raising a special needs child is like running a marathon. Raising my child is more like a triathlon, in a war zone, with bullets flying overhead, and I’m unarmed and wearing flip flops. Unprepared, unqualified and so, so tired.

Sometimes I wonder if I’m spending all my time, energy and money (and more time and more energy) fighting and educating (and fighting some more) for no reason. Sometimes I wonder if all this work is futile. If my mental health, my daughter’s mental health and our bank account have suffered for nothing. If despite everything, he’ll end up like the 83 percent of adults with Fetal Alcohol Spectrum Disorder who can’t live independently, or the 50 percent who end up in institutions or prison. Is that where we’re headed, no matter what interventions we fight for? Will he still end up in jail, with the hundreds of thousands of other individuals with mental health disorders? I fear once he goes in, he’ll never come out.

It’s easy to get trapped in that cycle. Especially when you’re in one of those “one step forward, two steps back” moments. Especially when that mom is giving you the evil eye in the middle of Walmart when you thought your child could handle a trip he couldn’t. Especially when your hand is cramping from filling out yet another set of intake forms for yet another specialist, in the hopes of finding another avenue to reach your child.

That’s the key word right there: hope.

Hope is a very powerful thing. It keeps us going when therapy and medication fail and the ground shifts beneath our feet, threatening to pull us under. When we fall to our knees, desperate, lonely and afraid, hope gives us the strength to stand up and fight another day.

Hope is the light we see flickering in the future, guiding us through the darkness of the present. As a reminder to keep hope, I got a tattoo of a phoenix with the words, “Hope rises like a phoenix from the ashes.” Because our children matter. Their futures matter. They need our hope and they depend on it. No matter how many times they fall, and we fall with them, hope always has the opportunity to be reborn. Like a phoenix from the ashes.

For as long as I have this tattoo on my arm, I’ll have hope for my son.