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That Million Dollar Question

by julie on January 12th, 2016

There is a common question asked by newcomers to this adventure of parenting and it is asked in a variety of ways…………………………………

When will I know what my child will be like?

At what point, did you know how severe your child would be?

My daughter can hold her head up, does this mean she won’t be as severe as your child?

I am terrified that our son won’t be able to do anything. What signs will tell me how bad things are?

……………………But the answer they seek is the same. I wish, more than anything, that there was a straightforward answer that could bring instant comfort to the very real anxiety experienced in those early days. It is so pervasive that it tends to dominate everything else ~ every thought, every emotion, every experience, every thing.  As much as we try to ignore those worries, they demand our attention and we desperately want to know something……… ANYTHING that will give us an inkling of what the months/ years ahead have in store for our little ones and consequently for us.

If we were really honest, though, what we are seeking are answers that will tell us that our child won’t be as severe as the doctors have predicted and hopefully not as severe as some of the children we have seen on the countless Facebook groups we belong to. It is frightening to be launched into this world and as we start to look around and see the potential outcomes, that fear reaches whole new levels.

When we first heard those words…..Severe. Cerebral. Palsy. , we felt panic and terror rise in us like a hot lava. We couldn’t begin to imagine what our future would look like. Our daughter was a mere five days old when we got the diagnosis. We had only had five days to wrap our heads around the fact that we were parents let alone have our dreams and expectations of parenting come to a grinding halt.

When we got this prognosis, social media didn’t exist as it does today. My husband would read medical journals in search of some glimmer of hope that things would be okay. It is different now with things like Facebook and blogging. Parents find their way to public groups on Facebook and plead with the parents who are further down the road to please assess the video clip they have posted and tell them if they think their child will be able to walk or talk or at least be less than severe. It’s complicated because for the most part, they are told they just have to wait and see; that they just need to love their baby as they are right now. This is true but easier said than done. That is for sure. And still, the newcomers to this land want answers………just some measure of hope to hang onto as they navigate these early days.

The veteran parents, like me, try to comfort and console and tell them to trust that it will get easier but our words fall on deaf ears. Newcomers to this land know what they are looking for and if you aren’t providing it, they don’t want it. This is the nature of this journey. It isn’t right or wrong. It is just a part of it. I was there, too, at one time. I listened to the stories of miraculous outcomes and of the ones who proved those doctors wrong. I didn’t want to hear about anything else. I needed to know that there was always a chance that our girl would be that miracle and be that one in a million kid that baffled her doctors. And usually, when these questions are asked, there are the comments that boost the hopes of the parents. They often start with “The doctors said our son wouldn’t be able to do anything and look at him now (picture posted of child).” Others tell them not to give up and to believe in miracles.

I sometimes offer some hard earned words of wisdom:

I firmly believe that motherhood (and fatherhood) is the greatest lesson in surrender. Mothering a child with hie/ special needs/ medical fragility is an even greater lesson in surrender. And probably one of the hardest lessons of this whole journey. This is the thing:

There is no way of knowing when or how or what.

But as you try in vain to figure out something that cannot be figured out……….something magical happens. It is subtle and hard to pinpoint when the magic occurs but one day you are going to notice that you are not thinking about the future as much. There will come a time when you won’t compare your child to other kids with the same condition. You will even get to a place where you will no longer look at neuro-typical kids their age and feel a piece of your heart snap off like a piece of peanut brittle (imagine that!!). Eventually, your son or daughter will just be who they are. It will happen in time but being in the meantime just sucks. It is hard. REALLY hard. Chest-tightening-suck-the-breath-out-of-you hard. No one can give you the answer you seek. We can give opinions, share our stories and give you some hopeful comments, but none of us knows what tomorrow will hold.

Celebrate the great big things like a hint of a grin, a peaceful sleep, the lifting of a head during tummy time and every other moment that exceeds the last. For some of us, this includes having our child with us one more day. Stay in that moment and celebrate big time! Whatever the outcome, truth be told, your child will amaze you in a way you cannot even imagine! That I do know. And soon, you will know it, too.

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 Did you like this post? You might also like my new book! Available at www.amazon.com and at www.amazon.ca or through the link on this website.

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8 Comments
  1. Lana permalink

    Oh! This picture! I can just smell her! That grin makes me weak in the knees.
    I can imagine that those questions are so important in those moments. How reassuring to know that eventually, for most people, that kind of wondering will change to the “wonder” of the child as he or she IS.
    Good post, as usual, Julie!

  2. Tiff permalink

    I have a two month old. She has hypotonia with a level 4 brain bleed. The neurosurgeon said we will have to see how she progress over time to determine if she has some form of cerebral palsy. It is a roller-coaster.

  3. Debra Curran permalink

    Another brilliant piece. Thank you again.

  4. Thank you for reading, Debra!

  5. Yes, it is indeed a roller coaster. No doubt about it. Mastering the ride is the key. You will only see how far you have come when years have passed. When you are in the thick of it, it is hard to imagine what i have described above. I get that fully.

  6. Thanks, Auntie Lana!

  7. I would like to reprint this article for parents of newly-diagnosed special needs kids. How do I get permission?

  8. Hi, Susan! Send me an email to julie@juliekeon.com 🙂

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