Grief.
It’s a peculiar thing.
Today marks D-Day (Diagnosis Day) + 22
years. I can’t believe it’s been that long — but my body knows it.
For a long time, I felt strange calling
Dave’s diagnosis day a form of grief. But my therapist told me it is. It
represents the death of all the dreams and the life I had planned for my boy.
And yet, I am so deeply thankful that it wasn’t literal death. I have friends
who have lost children, and I truly don’t know how they survive. They are my
heroes.
The strangest thing about this grief is
how my body remembers the date before my conscious mind does. In the second
week of September, when the air starts to crisp and the evenings turn cool,
something shifts deep inside me. It’s not even an emotion at first — just a
distant memory humming in the background.
By the third week, my fuse shortens and
my anger rises. I become quick to speak and slow to listen — the exact opposite
of what I should be doing. Still, I don’t connect the dots until the end of
September. And then I see October approaching on the calendar. That’s when it
hits me.
I try to prepare myself, but it never
really works. October 1st arrives and the tears come, every single year. It’s
as if the cork I’ve jammed into the depths of my soul pops free the moment that
day appears.
This year, I went back and reread my
journal. I’ve been writing in it since Dave was a baby, at least once a month.
Here’s what I found:
October 1, 2003
Today was a nightmare — completely
surreal.
I took Dave to see Dr. Rodriguez, and
at the end of the session I asked if Dave was autistic. He simply said, “Yes.”
I was numb. What would become of my
baby? How could this be happening? Was it even real?
The next weeks were unbearable. I cried
until I had no tears left.
I kept replaying his early months. At
not even a month old, he flapped his arms and I thought, “That’s not right.”
But then I told myself, “You’re just being paranoid.”
At six months, he would turn away from
people’s faces. Dave’s Vo (my Dad) once asked, “Why won’t he look at me?”
and I brushed it off as normal, but deep inside my soul shivered, at the
thought of what it could be.
Then in July, I saw a Dateline special
on autism. My worry grew. But Auntie Aimee visited in August, checked him out,
and reassured me: “No, he’s not autistic. He does things autistic kids don’t
do.”
But by 13 months, he had stopped
looking at us, didn’t respond to his name, and no longer laughed (it wasn’t
coincidental that he’d now had several more shots since). Maybe he was deaf? I
prayed that was all it was.
On September 15, Early Intervention
assessed him. They said he was developmentally delayed in speech,
communication, language, cognitive, and social skills — at the level of a
7-month-old. But they refused to say autism.
And now here I was, driving home from
the doctor’s office in tears, numb, unable to breathe, and with no idea how I
would ever get through this.
December 24, 2003
I meant to track Dave’s progress
weekly, but life has been chaos.
After the shock wore off, Early
Intervention began working with Dave. The therapists were nice but it felt more
like playtime than therapy. We needed more.
In October, we found Brainpower. Laurie
(OT), Kathy (Speech), and Terese (ABLLS) began working with him. The ABLLS
program was slow to start — so many evaluations — but even before that, Garritt
had been working with Dave daily.
We introduced the “Good Looking”
program, and almost immediately we saw improvement. He began noticing us again,
laughing again, and interacting again.
We didn’t give his 15-month
vaccinations — no more shots! And in that season, it felt like God was healing
him. He was coming back to us. He babbled constantly — “ba ba ba” — and even
began to look at toys again.
Yesterday, he pulled out his little red
car. I helped guide his hands, and then he tried it on his own. He is so smart
— we just need to show him how things work, and he catches on quickly.
Terese brought Gail over yesterday.
She’ll start therapy with Dave six days a week. I am beyond excited. He is my
precious angel. I love him so much, and I know he loves me too. He likes to
hold my hand, and he even started kissing me.
When I read back on those entries, I
laughed through tears. This is so me: deep despair for a few weeks, then
pushing the emotion down and diving headfirst into research for what would
become the most important mission of my life.
I’ll never forget what one doctor told
me in those early months. As we left his office, he said:
“Your son will never play sports. He will never have friends or marry. He
will eventually be institutionalized.”
It’s hard to put into words the
emotions I felt in that moment — and in the hundreds of thousands of moments
that have followed. Some of his predictions turned out true. And that has been
its own grief: the childhood joys we never got to experience.
But if I focus only on what’s been
lost, I will crawl into a corner and collapse. I have to choose joy where I
can.
In the beginning, I had so much faith
that the Lord would heal Dave. Over time, that faith has dwindled. I now only
have a mustard seed remaining. I did have a good run, maybe 10 years, before I faced
the realization that healing might not come in this lifetime.
And yet — I still believe. I know Dave will
be healed someday; it just might not be on this side of heaven. That promise is
what I cling to on the especially difficult days. Because he is my best boy,
the joy of my heart. I am so deeply grateful that God chose me to be his mom
and to walk beside him every day of his life.
So each day, I try to stay present – to
see the world through his eyes and to laugh with him when he laughs. Of course,
that makes the hard days — the seizure days — even heavier. But even then, he
is still my joy. And for that, I am forever blessed.