Raising kids with special needs: Why it's good I didn't know then what I know now

"It's good that I didn't know back then what I know now," I told my friend. We hadn't spoken in several years, and I called her the other day when I was off work.  She has kid with OCD and, like me, she'd gone through a lot of anxiety in his early years—and faced down a lot of doom-saying doctors.

I meant what I said. As much as I wanted to know back then what Max would grow to be capable of, it's a good thing I didn't.

When Max was a little guy, my entire existence centered around a central question: What would he be able to do? Would he walk? Would he talk? What would his cognition be like? Would he feed himself? Would he take care of himself?

We knew full well what Max was at risk for: not talking or walking, cognitive impairment and fine-motor challenges, along with vision issues. The stroke had damaged both sides of his baby brain. But as Dave and I quickly learned, no expert can tell you what the future holds. Some give you glimmers of hope. The fact that Max was able to bicycle his legs as a baby was a positive indicator for walking, the physical therapist told us; cerebral palsy can make your legs scissor. But experts can also make you feel utterly bleak, like the nenatologist who said that Max's future looked "ominous" (yes, he used that word).

But oh, how I wanted to know. I visited specialist after specialist for kernels of insight and nuggets of hope. I was obsessed with the Pediatric Stroke Network e-loop I joined, and regularly reached out to parents of older kids to pelt them questions: When did their child pull to stand, crawl, walk? Did they babble? (Max never did.) When did they say their first words? How was their comprehension and learning?

Once, a doctor gave me this perspective: "If he was going to be in very bad shape, you would know by now." Which was somewhat comforting, although it didn't answer the open questions.

As much as my desire to know consumed me, the desire to max out Max's potential drove me to find the best doctors, to push Early Intervention for more hours of therapy, to try alternate treatments like hyperbaric oxygen therapy and do a stem cell infusion at Duke University.

If I knew then what I know now, perhaps I wouldn't have been as determined. Desperation can make you find strength and grit you never knew you had.

If I knew then what I know now, I likely would have been crushed. Knowing for sure that Max wouldn't have typical speech, and that he'd have cognitive impairment, learning challenges, movement issues and trouble using his hands, would have been a lot to bear. I needed to grow into Max's diagnosis, and to develop as a parent. Now these things are just part of who he is, not the whole of him. They do not faze me.

If I knew then what I know now, I wouldn't have had the hope I needed that my efforts and those of the therapists, doctors and teachers could affect Max's functioning. I so needed to feel—no, to believe—that something was in my control when everything felt out of control.

For sure, it would have brought tremendous relief to know that Max would walk, a Big Question that was answered on his third birthday when he toddled across his bedroom and into Dave's arms. But having a crystal ball for that other stuff he'd struggle with? No, it wouldn't have helped and most likely would have hurt.

We now have a sense of what Max's speech will be like. His cognition continues to develop, and in some ways remain a mystery. His fine-motor skills are still emerging, and will always be a challenge. But I have learned over time to take it all in stride, and not keep trying to peer into the future, which doesn't do you or your child any good. 

This is not to underestimate the angst of parents with young children who wish they could know what lies ahead. I was you. I know what it's like to be the most anxious and worried sick you've ever been in your entire life. To feel like nobody else you know is going through what you are. To look at your beautiful child and feel sad that you're sad, because he doesn't deserve that. To feel so restless and unsettled in your present and wish you could fast forward because you Only. Want. To. Know.

I just wanted to share food for thought, for parents who are going through what I did, about why it isn't all bad to not know what the future holds. There is no choice in the matter, but perspective may help take the edge off.

Actually, there are some things I can tell you about the future:

• Your child will surprise you. In ways you can't even imagine.
• You will find bliss in the inchstones, which happen far more often than the milestones: A sip taken, a spoon clutched, a toy button pressed, a sitting position held, a syllable uttered, a high-five given.
• You will adapt to your child's diagnosis, same as your child will adapt to his challenges. His disability will no longer seem like a life sentence; it will be life as you both know it.
• You will not spend practically every single minute thinking about his development. Or regularly cry in the shower, bathroom or car.
• No matter how your child turns out, you will be grateful for what he can do and despair a lot less over what he can't.
• Technology will continue to enable kids and improve their quality of life; who knows what marvels lie ahead. The iPad or iAnything wasn't around when Max was born, but now he uses it to speak all sorts of sentences, do homework and learn. (And, yeah, find YouTube videos of fire trucks.) Every day, I am amazed by it.
• When medical challenges rear their heads they will be unnerving, of course, but you will better handle them as the years go by. (And you will acquire all sorts of handy strategies for dealing with doctor offices and insurance companies.)
• Nothing may feel normal right now, but you will find another normal. And it will be a good place.