When my son with Fetal Alcohol Spectrum Disorder was growing up, people used to say to me, “I don’t know how you do it.” I took the expression “do it” to mean raise my son, manage my family and generally, just lead a life and come through it relatively sane.
I had several responses when asked about “doing it.” My answer depended on how that day (month or year) was going. On a bad day, it was, “Quite honestly, I’m not really sure I am doing it.” Another day, feeling a bit more resilient, I’d say, “What exactly are my options?”
Around holiday time, like now, I usually revert back to the “Quite honestly…” response.
I subscribe to many blogs, websites and Facebook pages of parents (and other caregivers) talking about raising children with special needs. Their entries either break my heart, inspire me, teach me or make me ask, with remarkable respect, “How do they do it?” Especially this time of year with so many other demands on their time, energy and financial resources, I am in awe.
My hunch is, though, if asked ‘how do you do it?’ their responses would probably mimic one of my own.
In the last few days, I’ve read about mothers: living through episodes of their child’s dangerously aggressive and/or dangerous behaviours; rushing their child to a hospital emergency; watching their child go through a surgical procedure; fretting over a daughter’s promiscuity; negotiating with police about their child’s arrest; and begging their child’s principal not to expel him from school.
These mothers amaze me. They express the horrors they are going through, they sometimes question how they will make it through the day (night, week or month), worry about how they’re going to pay for all the therapies their child needs, and often ask for support from other parents who can relate to their experiences.
Yet, considering all their daily troubles, I would say that in virtually every entry I read, the strongest feeling that I pick up from the parent (usually mother) is one of great love for their child (not anger). And, yes, there’s another prominent feeling: hope – that one-day things will be easier for their child, and therefore, them.
As I enter the frenzied hustle and bustle of getting ready for Chanukah this year, I think about all the other families raising children with special needs who are preparing for their own Christmases, Kwanza, Diwali, or whatever holiday it is they celebrate during this season. And I ask, with greater poignancy than ever, “How do they do it?”
How do they buy presents, go to school concerts, trim trees, stuff turkeys or glaze hams, attend religious ceremonies, make sure everyone has proper holiday clothes (or at least clean), roll out cookie dough, send out holiday cards, make merry, look after their families and still do all the unbelievably challenging, enveloping and all-encompassing jobs required to raise a child with special needs (see above).
I don’t know the answer. Perhaps they don’t think they really are doing it all that well. Perhaps they’ve decided to ‘cancel’ the holidays this year and stuff their heads under pillows and hibernate until the season has passed. And maybe ‘they’re doing it all,’ with the same love and devotion in their hearts like they do every other day of the year.
To all these moms, dads, caregivers (and I never forget about the caring professionals), I offer you, with the greatest of respect and admiration, my greatest wish for you this season and beyond – peace.