Parenting For Joy - Editor’s note: Autism Awareness month is becoming a call to action from the autism and neurodivergent communities for change from the rest of society. I...
3 weeks ago
A tender heart may lose its way,
With resolve returns to win the day.Falling down, feeling broken, these things are to be expected, are unavoidable consequences when one battles each day for another day for one's beloved.
Despite adversity into the fray:
A foolish heart will see the light of day.Eric knows all too well what he's fighting for and what the cost is, and his dedication to his son and to making the world recognize the value that is inherent in all people, regardless of functionality is heroic, although he would likely reject that characterization. He is, in his opinion, doing what he must.
The rope that binds his body cannot bind his soul:
The secret of the heavens that define this role,
Never has a dream garnered such a toll.He continues later in the same poem, "Darkness,"
The struggle to survive
Universal and constant
Where no one is asked
Whether they can bare it nor
Want it.Life and death and the things that really matter: Eric's life is wittled down to the essential, as are the lives of other parents loving and fighting for their children and their children's lives. Eric writes in a poem titled "Ohtahara,"
Death is in the fight.
Brought to our knees
With aches of love for our children so affected,
Death is a rampant disease.Eric writes not just about his and Segev's experiences, but also devotes several poems to other children and their families and tackles the heartrending task of the loss of other children to the diseases they and their parents valiantly wrestled with. Of Jack, in "Brave," Eric writes,
Brave brave, little thing,
Across the heavens you will sing.Eric's poetry calls us to feel, to think, to be, to embrace the moment. I can't help but be reminded of Nancy Mairs, a poet and author who has MS, and her interview in PBS's documentary, & Thou Shalt Honor, how she feels called to life:
And having George participate in my care and having other people do the same, calls me into life. It says, despite your losses, despite your limitations, you belong here with us and we want you to stay. We want you to stay enough that we're willing to participate in the labor that it takes. That's perhaps the fundamental of caregiving -- to enable another to want to be in the world. Not just enable them to be, but to enable them to want to be in the world when it would be easier not to.