When Hope Starts Watching The Clock
For years, it felt like there was plenty of sand left.
Plenty of time for communication to improve. Plenty of time for academics to click. Plenty of time for independence to grow.
When Leo was little, one of my favorite books to read to him was Leo the Late Bloomer.
I loved that book.
Maybe partly because his name was Leo, but mostly because I loved what it represented. Leo didn't do things when all the other little animals did. His parents worried. They waited.
And eventually, Leo bloomed.
I think a part of me believed that would be our Leo's story too.
I had already watched his older brothers, both autistic, develop strong communication and academic skills. They got there much younger than Leo, but I knew firsthand that development didn't always happen on anyone else's timetable.
So I waited.
I hoped.
I prayed.
And for a while, it really did seem like Leo was blooming.
Old Facebook memories bring back videos from when he was seven and eight, and sometimes they are painful for me to watch now. I can see the progress we were seeing then. I can hear things in his speech that I had forgotten. I can see glimpses of the little boy we thought was beginning to find his way.
And then PANDAS happened.
PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The short version is that an immune response can trigger serious neurological and psychiatric symptoms in some children.
For Leo, it felt like someone pulled the emergency brake on his development while, at the same time, magnifying several of his autistic symptoms.
Especially the OCD.
His OCD consumed him.
The easiest way I used to explain it to people was that it felt like autism on steroids.
And I think that is part of why acceptance has been complicated for me with Leo.
I remember the little boy before PANDAS. I remember what seemed to be happening. I remember thinking he was beginning to bloom.
So sometimes, if I'm being truthful, there is still some bitterness there. And a lot of sadness.
I feel like Leo was cheated.
Not because the person he is now isn't worthy or whole or deeply loved. He is.
But because I will never know who he might have become if those years had unfolded differently.
And that's something I haven't been able to stop wondering about.
Even now, I see glimpses of abilities and intelligence that he can't always fully show us.
Sometimes it feels like there are disconnected wires somewhere between Leo's brain and the rest of him.
Or maybe a concrete wall.
Whether it's the apraxia, PANDAS, autism, or some combination of all three, so much of what seems to be inside him doesn't reliably come out through his speech or body.
And I think that's one of the hardest things for me.
If he could just tell me.
Tell me whether a therapy is helping.
Tell me if his brain feels clearer.
Tell me if his body won't cooperate with what he's asking it to do.
Tell me if something we tried made a difference—or made things worse.
I have spent years trying to figure that out for him.
We've tried therapies. We've tried conventional approaches. We've spent money on alternative treatments too, sometimes a lot of it, because when you love your child and think something might help, it is very hard not to try.
And if money were unlimited, there is a part of me that would probably keep trying.
But money isn't unlimited.
Neither is my energy.
Neither is Leo's.
And increasingly, neither is time.
Leo is almost 17 1/2 now.
He can speak, but he isn't always what we've learned to call a reliable speaker—meaning he can't consistently use speech to communicate what he knows, thinks, or needs. Academics have never unfolded the way we hoped they might. Independence still feels a long way off.
And yet, I can see adulthood coming in other ways.
He is still the sweet boy who loves to be tickled, wants to hold my hand when we walk, and asks us to read him a board book every night.
But he is also becoming a young man who wants more of a say in his own life. He prefers spending much of his time alone in his room now. He wants choices. He wants some control over what happens to him and around him.
I can't imagine how frustrating it must be to want more independence while not always being able to communicate exactly what you want, what you think, or why something matters to you.
A few days ago, we met with a lawyer about beginning the process of plenary guardianship.
I knew this might be where we were headed.
It still broke my heart.
There is something about sitting down with a lawyer to talk about guardianship that makes adulthood feel very close.
And now, when I picture that hourglass, the sand at the top looks discouragingly low.
For so many years, there was always more time.
Maybe next year.
Maybe with another therapy.
Maybe something would click.
Maybe Leo really was just a late bloomer.
And I know 18 isn't some magical finish line for development.
When the twins were 18, they were evaluated by a program that assesses whether people with developmental or other challenges are safe to drive. We were told they should probably never drive.
A doctor encouraged us not to assume that who they were at 18 was who they would always be and told us to keep working with them and be patient.
So we did.
Both eventually learned to drive and got their licenses at 22. Both graduated from college.
I've seen firsthand what can happen when you don't assume development is finished just because childhood is.
Maybe that's another reason I don't know what to do with that hope now.
I don't want to give up on him. I don't want to decide at 17 that this is as far as he will ever go. I still want him in speech therapy. I still want to give him opportunities to learn and communicate and become as independent as he possibly can.
But I also don't want to spend the rest of my life staring at an hourglass, waiting for him to become someone other than who he is today.
Maybe that's the part of acceptance I'm still trying to understand.
How do you accept what is while still hoping for more?
How do you acknowledge limitations without deciding where those limitations end?
How do you keep fighting for every bit of progress without making your peace depend on whether that progress ever comes?
I don't have a good answer yet.
I still look at those old videos and wonder.
I still wish I knew what PANDAS took from him.
I still wish Leo could tell me what it feels like to be inside his own brain and body.
And yes, I still hope.
Maybe I always will.
And somewhere in all of this, I am still trying to trust God.
At Mass today, a visiting priest spoke about how much we want to control the things around us, especially as parents. We make plans. We have wishes for our children. We want so badly to make things turn out the way we believe they should.
But eventually, we have to surrender our wishes, our plans, and our will into God's hands.
I had nearly finished writing this post when I heard those words at Mass.
I can advocate. I can search for answers. I can take Leo to therapy. I can pray for healing and progress and breakthroughs.
But I can't make any of those things happen.
Maybe this is one of the crosses I am being asked to carry—the helplessness of loving Leo so much and not being able to control where all of this leads.
I can keep doing everything I can for him.
And I can place the outcome in God's hands.
Perhaps acceptance isn't giving up hope.
Maybe it's learning that I can keep hoping for more without believing that who Leo is right now is somehow less.
Maybe it's remembering that the sand in my hourglass is measuring time.
It isn't measuring Leo.
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