Raising children with high levels of need can be isolating for kids and their parents. (I mean, duh, right?) This is unfortunate, but easy for us to understand when we see children with visible disabilities or illnesses. Time in hospitals obviously means time away from school, playgroups, and playgrounds. The tethers that hold friendships together become frayed and strained. No one wants it that way, but we understand and we offer sympathy or casseroles.
I can tell you there are fewer cards and casseroles for invisible disabilities, and fewer still when the illness is one of the mind, but no less life-threatening. Suicide is the second leading cause of death for children ages 10-14 in America. It takes away more of our adolescent children than cancer. I’m not sure if I wish I didn’t know that, or if I’m grateful that I do. What I do know is that my son has a disability and an illness. There is a decade’s worth of paperwork to prove it, but this is what I can say:
When my son was three years old, he started talking about a boy he called The Other Nicholas. At the time, we thought it was an imaginary friend, but it soon became obvious that when The Other Nicholas was here, my son was not. My Nicholas could not remember or explain things the other did. Over the years, his illness progressed, and before he turned seven he suffered his first psychotic break in school. A mother’s heart does not forget the moment the guidance counselor calls asking for permission to transport your child to the hospital. You also don’t forget when other more disturbing voices come to join the first one.
Mental illness is not something easily quantifiable, especially in children. It’s not standardized. I can’t offer percentages on where his thought process is at any given moment in comparison to his peers. The numbers I do have look like this:
8 schools by the eighth grade, 3 of which were full-time special education units
4 in-patient stays in pediatric psychiatric hospitals by the age of twelve
5 evaluations looking for answers
5 prescription pills and 3.5 milligrams of a liquid suspension every morning
2 more at 1pm
1 more at 4pm
Still 3 more before bed
At least 3 calls to law enforcement that I made myself
1 CPS investigation
4 jobs lost because my son needed full-time care
It can sound bleak when we look at the numbers, and I am the first to admit that the motherhood of my reality looks nothing like the motherhood of my imagination. But my son is not a number, he’s a person. He’s a child. And I see so much more than an illness when I look at him. I see my Nicholas.
But raising children is community work. Parenting takes a village under normal circumstances, but it takes an army to fight certain battles. Somewhere between filling out intake paperwork and picking up prescriptions, I didn’t really notice when my village became less about shallow coffee time conversations with fellow moms from PTA meetings and more about team building to prepare for real, honest “this is life, and it is messy” moments. I need people around me who can get messy.
No one can do this alone. Asking for help is the hardest and best thing I will ever do for my kids.
When my children were babies, I hosted a book club, ran a community toy library, and lead mommy and me groups. But that is not what community means to me now. I have retired the idea of having a mom squad I can meet for playdates in the park and embraced the support of my community in ways I could not have predicted, but am so grateful I have come to know.
My mom squad looks different now. There are the precious handful of friends and family members who stick around no matter what to offer unwavering support, and there are also:
6 outpatient therapists
3 social workers
2 school resource officers
2 mobile crisis units
More than a dozen teachers and classroom aides
2 healthcare case managers
Too many emergency healthcare workers to count
And 3 pastors I saw in times when I couldn’t afford counseling for myself
I am so grateful for the support of the team we have built around my son. They keep the cloud of isolation away and keep all of my children safe.
While I would never have chosen it, I’m grateful to know that our family can find light in even the darkest of circumstances. I am so thankful to have learned all of the lessons parenting Nicholas has taught me. The empathy and education I have gained from being a mom has been magnified because he is part of our family. The resilience and stamina I see in him every day is reason enough to keep going.
I might have never known how to advocate for suffering children if it weren’t for Nicholas. I may have never visited a pediatric psychiatric hospital. I may have never learned what I know now about childhood trauma, the way it affects the brain, and the fight that is necessary to get children the treatment they deserve.
I may not have understood the economic hardships that face families, the importance of Medicaid access for children with disabilities, or the logistical difficulties of navigating the American healthcare system. I might not have understood I had the strength to run yet another metaphorical marathon, if I could look back and see how many miles we’ve already come.
But I do know now, and because our family was forged in fire I also know I have the strength to fight. I know how to take the resources I have been given and grow my army so that we will fight not just for my child, but for others.
My mission now is to share with other families, all the things I never knew but have learned from raising a family through circumstances I would have thought were impossible.
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