We received the results of our ‘typically-developing’ five-year-old’s cancer scans a few days ago. The last lesion is almost gone and showing signs it will now die off on its own. For the first time, we see the path toward remission.
He’s been approved to get the port in his chest taken out next month. After that, he’s on complete medical holiday until April, at which time he’ll have scans again. If those scans look good – and we believe they will – the next scans will likely be pushed out to four months (August), and he’ll only need to visit the doctor during that time for his regular physical or if he has the sniffles or something.
Maybe it’s premature to say it, but it feels like we won.
Cancer threatened our son’s very mortality. We looked into a future we could not imagine. The weight bore down on us even harder as we waited on the results. I started to tear up in the hospital cafeteria as the minutes passed. The pressure got to me. We stared the horror in the face.
And it feels like we won.
Our Reaction to Great News
We could not have imagined the events of this past year in our worst nightmares. And now, it feels like – finally! – we have turned the corner.
So we celebrated. Not the kind where you cheer and yell; that’s not really our style. But we laughed, smiled, high-fived, and all in all felt an enormous weight lift from our shoulders.
Once we got home, we exhaled. You don’t realize that all the tension you’re holding makes you hold your breath, too. As the edges of the challenges you have faced start to appear in your rearview mirror, you feel a little more relief and hope. The weight, the held breath, the tension, the suffering – you breathe it all out in one great out-breath when the hardest part has passed.
But, then what?
Resist the Temptation to Move On
You celebrate the victory, exhale and regroup, and then you kinda sit there searching for what comes next.
As autism parents, we live this cyclical life as well: face enormous challenge, our kids overcome it, we celebrate, we exhale, and then we wonder what we tackle next. Too often we never slow down to appreciate what just happened and the enormity of each overcome obstacle.
My kid just overcame cancer. Sure, he’ll have to keep fighting it off and get checked for the rest of his life, but at five years old, he just smacked it down. We celebrated for the day as a family and online with all the rest of our friends. We sat in bed that night, and we exhaled. The worst was finally passing.
Totaling eight years, one of the longest-running challenges our older son faced was his inability to say ‘b’ or ‘p’ sounds. It took a host of therapists and teachers and ceaseless work from our son and his teams to overcome this mountain. But he did it. He did not give up.
But for these and so many other moments, the next day always came, and we found ourselves moving on to the next thing. The magic of the accomplishment gets drowned out by the noisy chaos still going on around us.
Stop and Appreciate the Victory
We need to make it a practice to stop for a while and appreciate every obstacle overcome. Really breathe and drink each of them in. Offer up your thanksgiving to anyone or anything you want to. Thank the people who helped make it happen.
Find some people online or in person who really get how great it is, and celebrate with them. Don’t hurry on to the next thing until you’ve spent time appreciating the great thing that just happened.
It’s been easy enough for us to make our older son’s new verbal sounds just the new normal. Lately, I’ve tried to let each sound hang there in my ears and think to myself, Thank you. Getting distracted by the next burning obstacle is as simple as falling with gravity. I don’t ever want to take things for granted.
After all, just a few months ago, they thought our younger son might have metastatic Ewing’s sarcoma, which would have put him on the edge of a death sentence. He ended up with something much more likely to go into remission. I’m not sure we appreciate enough anymore how narrow our escape was.
It hasn’t been long since we wondered whether our older son would even talk or make more than a syllable or two at a time. But he overcame that and a host of other speech challenges. He’s still several years behind age level, but he’s getting there in his own time. I’m not sure we appreciate enough anymore how far he has come in this and countless other areas.
This Leads to Faith in Your Future
Celebrate the moment and exhale when you and your child overcome great challenges. Appreciate all the hard work, and be grateful for everyone and everything that went into it.
Just don’t move on and forget. Remember the victories of the past and present. Remember them now and in the days ahead because this is how you see how far you have come. You can believe in the future because you know where you’ve been and the obstacles you’ve climbed over already.
This is your proof that you and your child can do this. You hold these in memory, and you can always come back to them, remember, and renew your strength.
So with every new accomplishment and triumph, celebrate, exhale, then hold on to the moment like a precious gem. Set them in the light of memory so they can shine forever whenever you need them again. Let their light become your faith in what is yet to come.