When You Realize You Absolutely Can’t Control It All
This is what it’s like when you realize you absolutely can’t control it all, even when it feels like you need to.
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.
Some don’t.
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.
Some don’t.
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 grievous.
It’s soul crushing.
And it’s just simply true.
When You Realize You Absolutely 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.
I love.
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.
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 new day.
For More Encouragement And Support:
Words i can relate to! Thanks!
We just spent 2 hours on a math concept that he totally understood 2 weeks ago. Today it was an absolute mystery to him. Neither of us wanted to give up but, 2 hours later, it’s still a mystery. And I go into panic mode and want to fix it all…math concepts, separation anxiety, his struggle to stay grounded in reality, the sensory issues… thank you for this post…now I’m going to read it again!
Yes – open hands. I’m working on a project looking at that concept. And I’m seeing how much it impacts my life; just the choice to open my hands to whatever God has for me today. Beautiful.
Yup
My daughter of genetic ‘special needs’ is twenty-two years old now (her five brothers and sisters also have special needs but wouldn’t be categorized as such–I mean, we ALL have some special needs, don’t we?)
This artical rings so true! Twenty-two years in I still have struggles with the lie that ‘if you only do enough. . . ‘. But mostly I hope in God and His wonderful plan and rejoice in the blessings of such a complicated, yet simple, human being my daughter is!
I can relate to this so much. My son with Autism is 20, soon to be 21. I’ve done all that stuff and know right where you are coming from. Every IEP, fighting, crying and frustration. My son is 20, but his expressive language is on a first grade level, yet they want him to ride a taxi to work should he get a job…who would put their 1st grader in a taxi…its scary stuff. He still watches Mickey mouse clubhouse. I worry and its hard not to, but what happens when we parents are gone? I find myself constantly saying “they just don’t get it” unless they’ve lived it. I am so worn out from the fight of it all. Exhausted. But, God gives me the strength each day to GET BACK UP and keep on going. That’s what love is…PERSERVERENCE. I like Danny Gokey’s new song, “here comes a comeback!”. If you’ve not heard it, google it! You will be glad you did. Gos bless you & thank you! ((Hugs))
This resonates to my core. My personality is such that I’ve always had a fierce inner critic that pushes me, and I’m a perfectionist who believes in my weak moments that it’s all up to me. And a fierce problem solver. So I put my head down and keep going. I push and fight like the warrior to find answers for my kids, one thing after the other. I believed whole heartedly for years that I’d we could just find the right combination of treatments, my son would level out and be Neuro typical. The problem is, he DOES need me to show up and do the interventions bc as you said, some of them really help. We have to keep seeking the answers and solutions. So it’s SO HARD for me to sit in that tension where I can’t go to the extreme of giving up. I need to keep seeking answers and trying, BUT let go. So far I haven’t been able to find that sweet spot. I love how you described it. Pursuing all the treatments but with open hands. I know that’s easier said than done but it gives me words around it. I recently told a friend I’m struggling so much with finding the balance between effort (which is so important and there is SO DANG MUCH OF IT with these precious kids) and surrender. I just can’t seem to find my way to that place. Yet. Thank you for sharing this post. You give voice to so very many things I’ve thought and thought I was alone.
Thanks for this…I needed it today. Every day is just that…a day. Thank goodness for new days. It takes a lot of grit and grace and tears and patience to get through them. Christmas was hard yesterday. I had prayed for a peaceful day, but that’s a tough order for a stressful day for my 12 year old son who is HFA on the spectrum. My (soon to be) ex husband does not understand or maybe just can’t cope with him…so they both triggered each other all morning and into the evening. I love Christmas but like most of us with special needs kids, the image of it being peace-filled is just not reality…it can be tough to accept, but it is what it is. Thankfully, God gives me what I need to keep going, even on days I think it won’t be the case, somehow it always is. Thank you so much for sharing words that help make me, and so many others, feel less alone.