Day Nineteen: Tommy, from 5 to 6
“Today is Friday. Tomorrow no school and three boys go to
Nana’s house!”
“You can’t go to Nana’s house tonight, Tommy.”
“But I love Nana’s!”
Tommy shouts it, not in a nice way, and I want to shout in
victory because do you see what just happened? Tommy knew what day it was and
could put a name to it. Friday. He knew the patterns of a Saturday. No
school. He verbalized a request – three boys go to Nana’s house –
and when I responded, he responded. But I love Nana’s!
He spoke three sentences. One with three words. One with ten
words. One with four words. But who’s counting?
I am. I count Tommy’s words all the time, and it’s not just
me. Matt and I have a team of people who count and celebrate the count because
words are hard for Tommy. We don’t know why, not really. The last diagnosis was
a Global Developmental Delay, but those three words concatenate to a whole lot
of vague for me. From where? For how long? To what end? What does this mean?
2019 began with unanswerable questions – ones that trailed
from years prior, rewinding to 2014 when Tommy turned 1 and started communicating
in screams. The “pterodactyl scream” was what one of his teachers called it,
and it was frequent – set off by whatever set him off, which was a lot …
multiple times an hour. And there are so many hours in a day.
We’ve asked for help since then. We’ve assembled a team. We’ve
released the expectations of what we thought our family would be. We’ve set
boundaries of what we can and cannot do. We’ve talked about brokenness with our
boys – how it’s on everyone’s inside and sometimes on people’s outside. We’ve
mourned. We’ve explored new ways to be and built from where we are.
And we’ve learned. This boy with so few words has taught me the
most about them.
One, we don’t always need them. Tommy is strongest in his development when the words are few, and he has broad, quiet spaces to absorb and try.
Two, words bring power. The more Tommy articulates, the less
he screams. The more Tommy speaks, the more he makes himself – his knowledge,
his humor, his wants, his personality – known, and the better we can help him.
Three, words aren’t transposed. I would give Tommy all of mine if I could. It feels mean that this area where I’m strong and love to play is where he’s weak and struggles. I am not and will never be okay with this.
Four, words go boldly before us. Every day I pray for Tommy,
and in praying for him, I’ve learned how to pray. There’s no wavering for me. I
pray God’s promises of restoration back to him, laying my hands on Tommy’s
head, ears, and mouth as I do. I’ve always believed in miracles; I pray through
them now for the complete healing of our son.
Five, words are to be celebrated. It wasn’t that long ago
that I broke down in Bible study because I wasn’t sure whether Tommy knew I was
his mom. He was three-years-old at the time. At the close of 2019, he knows lots
of names. Lately, he’s been calling me “Beth” instead of “Mom” because “Beth”
is what’s embroidered on my Christmas stocking, which he read. Yes! Tommy reads
– another reason to celebrate.
Six, words create community. There are so many people we wouldn’t
know or wouldn’t know in this way if it weren’t for Tommy and his words. For
years, I was in Bible study with a woman who was getting her Master’s in speech
pathology, and now, she nannies for us in the summers and comes once a week to
our house to work with Tommy. This fall was a series of misses, and she hadn’t
been here for a few months. She was astonished after her first session.
“Tommy is speaking in so many three-word sentences!”
A 6-year-old boy speaking in 3-word sentences. It’s everything for me, from mourning to celebration. It’s why I’ve learned to ask better questions and move forward without answers. I don’t need them to love Tommy, work with Tommy, and be expectant for Tommy … this boy with so few (but ever increasing!) words.
