When your child is first diagnosed, the doctors are always focused on the proposed treatment plan.
Rightly so. It’s what they do, post assessment.
I recommend therapy a minimum of two times a week.
The standard course of treatment is this prescription and that medicine.
There will likely be a waiting list, but you need to get him in with Doctor so and so as soon as possible.
Kids like him do best with an involved, attentive parent.
I need to see him in a month to check in and monitor progress.
And so, you do all the things.
Some of them work.
You go back for the monthly check-in. There are more proposed treatments – some in line with what has already been suggested, some completely new.
Some of them work.
And some of the ones that did work before, stop working.
We do this dance, every month or so. We do it for years.
While the doctors are confident that all of this will eventually help, 14 different medicines, eight therapies and two new diets later and you can be right back where you started.
Your child struggling, in pain and declining.
Complicated kids are just that – complicated.
There is no easy treatment. There is no quick fix. There is no miracle help.
I’ve seen incremental progress and even great success. I’ve experienced set-backs and new developments that further complicate it all.
My boys need these interventions. They need these helps.
They need their doctors and their momma to be willing to try again, to figure out another approach, and to get creative.
But through it all, there is this treatment plan, whispering, “If you just do this…If you can just figure it out…If you try one more time and then another…”
It implies and makes you believe that somehow, if you can just do all the things, you can control it all.
Our culture supports this thinking.
Parents are publicly to blame for their children’s behavior, no matter what a diagnosis, science or research might suggest. (This statement alone will be enough to garner a few indignant comments, I assure you.)
Moms are encouraged to be a “warrior” when their children have special needs, because clearly, if mom just fights hard enough, she can emerge victorious.
Sometimes, we can, and sometimes, we can’t.
Sometimes, no matter how hard we fight and try harder and wake up again ready to do whatever it takes to help our child progress, they still slide backwards.
It’s soul crushing.
And it’s just simply true.
When I Can’t Control It All
A few months ago, my friend’s son had to have an emergency surgery. It was terrifying for her and her entire family.
We prayed. She cried. We prayed some more.
Post-surgery was worse. Pain, suffering, medicines – it was all hard.
We prayed some more. She cried some more and over the course of weeks, her son steadily improved, just like the doctors said he would.
He’s 100% fine now, save a few scars.
I find I am battling envy so fierce I want to scream.
My family’s story is not like this.
We have the hospital stays and the pain. We have the medicines and treatment plans.
We pray. I cry. We pray some more.
But chronic illnesses and delays are just that – chronic.
They don’t go away.
They don’t have a few week recovery period that follows the doctors’ expected course like clockwork.
Symptoms come and go. They wreak havoc on my sons’ bodies, their minds, my home and my heart.
We have great days. We have the darkest days I have ever known.
I fight. I pray. I advocate. I observe.
But I as much as I want to believe the narrative, that if we just try hard enough, if I am just attentive enough, if the doctors are just good enough, we can “fix” this – I know that sometimes, especially with my children, things are just not mine to control.
This often makes me feel sorry for myself. Of course it does.
But the longer I live this life, the more I learn that control is an illusion anyway – for all of us.
Ask the sweet mom whose daughter was killed in a car accident last week, or the wife whose husband was just diagnosed with stage 4 pancreatic cancer.
This side of heaven can be devastating.
I am writing today to implore you, don’t make it harder on yourself. Don’t believe the lie that your performance determines the ultimate success of your children, because it just doesn’t.
Yes, there are things we must do and should do to raise our children well. There are treatment plans that require us to try again, to give all that we’ve got and then try some more. We need to follow them.
Please hear me – this is not about giving up.
I am learning that the only way to really survive and actually thrive in the unknown and the hard, is to do all of it, but to do it with open hands.
Control is just an illusion.
What’s real is what is right in front of me –
Access to good care and possible options for treatment.
A snuggly boy and snuggly dog.
Tempura paints waiting to make a mess.
A husband cleaning a huge meltdown mess so his exhausted and strung out wife can check out for a bit.
Friends making me laugh, everyday.
Harry Potter and the Order of the Phoenix on audiobook.
A hot cup of coffee.
Two boys who love their mom fiercely and are loved fiercely in return.
A pumpkin patch.
A new day.