When questions have no answers.

 

Bad things happen. Sometimes bad things happen to our children. And in those moments, we all become children again ourselves, with the ultimate question drawn out of the deepest part of us.

Why?

Why is this happening? Could I have prevented it? How can I fix it? But the sad truth is, most of the answers to these questions are no answers at all.

My daughter has autism. Lots of people claim to have answers; diet, vaccines, medication in pregnancy, genetics. Some are clearly snake oil, others genuine, but none offer more than partial explanations.

These existential queries are, for parents, mostly irrelevant; a luxury. Even in the midst of this first questioning, you move quickly to the practicalities. Helping your child get better. Helping your child do more. Helping your child have something approaching the life you had always pictured for her.

But things far worse than autism happen to children. Devastated as I was to learn that my child had a lifelong developmental disability, my own dark optimism quickly went to: at least it’s not cancer; at least it isn’t fatal. The vast scope of things more devastating by far made me grateful, in a way, for our own smaller tragedy.

With terminal or critical illness the parents ask those same questions--why has this happened? what can I do? -- but the answers are very different. Biomedical problems have a lot more research that can tell us why, or at least point to a cell that went wrong, a germ that took over. I sometimes envy those families their answers, even if the diagnoses I would not wish on anyone, ever. The clarity of what is happening, even if what is happening is too awful to bear.

To live in the ambiguity of an autism diagnosis is it's own special torment. We celebrate each new word, each development in skill, but still have no long term prognosis. Is this progress fast enough to hope for an independent adulthood for her? Are we pursuing the best combinations of therapy?

No answers. 

By contrast, it seems that clarity in diagnosis, cause and prognosis brings some clarity of what to do next. 

Except sometimes the ‘what to do next’ doesn’t remotely fix it; can’t make it better, and all the answers in the world can’t put things right.

Bad things sometimes happen to our children. It strips us of our innocence; our confidence in the natural order of things. And we look around each corner, waiting for the other shoe to drop – if this horrible thing can happen, what’s next?

We become parents, and our lives are changed forever. We become parents of a special needs child; a child with a life threatening or life ending condition; a child who is irrevocably changed by some freak accident; and for a time, sometimes a very long time, our lives simply stop.

Frozen in the new geography of life as we now must know it, the answer to these questions, ultimately, is the same one parents all over the world offer to the “why why why”s of their preschoolers:

Because.

And we know, as every child knows, that it is a lousy answer.

So what we come to, questions standing unanswered, is that without rhyme or a good enough reason, life keeps moving. And as we begin to move around our world as it stands now, we notice that there are other people in this place. People who have had to pick up and move on in the midst of the deepest grief there is. People who know the 'Before' and 'After' of life changing news. I paraphrase a dear friend when I say that this isn’t a club I wanted to join. Yet once initiated, there is strength in the connections to be found here.

The grief doesn’t go away. Kids who are my daughter's age who have typical language and social skills still break my heart sometimes, just being their great kid-selves. For me these moments often stir more questions- how close to typical will she ever be? Is there a child like that trapped behind my baby's autism? 

I imagine parents who have lost a child continue to mark the milestones that will never be- first steps, first day of school, graduations, maybe a wedding. I anticipate doing so myself, knowing that she will pass some of these milestones, but so far from us in her own world, and so far from what we had hoped for, in the time 'Before'. These are moments of ongoing grief; an ongoing wishing for a different end.

But in the midst of all of this, we get out of bed (most) every morning; we breathe in and out all day long…and try to do the best for ourselves, our kids, and our families. We gather our strength, and gather our people – the people who have been with us all along, as well as those who have come by way of the very challenges they now help us weather.

Parents like me, whose children have a lifelong challenge, have a lifelong challenge of their own. My role as autism-mom has been all consuming. But I think I owe it to myself, to my husband and to both my children to carve out a full life for myself. All the angst of mothering and working are amplified by the special needs of my daughter. From the practical - the 'replacement cost' of my childcare work is high. To the emotional-  there is no replacement for my direct involvement in the day to day coordination of her therapies. But angst or not, I believe it is important that I don’t always feel that my life has been hijacked by my daughter’s autism.

But how lucky I am that this is my challenge. For parents whose child will never come home, their ‘new job’ is made harder by its invisibility. Parenting a child who isn't there, because how do you stop being a parent? They must learn how to deal with their own grief alongside the grief of their partner, possibly their other children. They will see that the outside world moves on so quickly, and other people won’t understand how long this will feel brand new. They will feel resistance to a return to normalcy so strongly – as it is emblematic of their growing distance from life ‘Before’; from life when their child was still alive and full of potential.

But life does keep moving, and we do become acclimated to our new lives. We never regain our innocence; we are marked by grief; but someday we will revive our confidence in life. A life beyond the diagnosis, beyond the moment when you knew everything had changed forever.  So that we might actually, eventually, ask with optimism: what’s next? We will be able to see once more that while bad things do happen, mostly it’s not so bad. Sometimes even good. And we can move forward, strengthened, to begin building a life, a whole life, grief and all, that works in this brave new world.