Dear Tim,
It is a tricky thing to consider what I want to tell you in this letter. You will always be our firstborn and even as you tower over me and begin to catch up with Dad's height, you remain in so many ways our most vulnerable little creation.
As the soul that marked our foray into the Wide, Wide World of Parenthood, you introduced us to so many universal experiences. First and foremost, of course, that you don't know Love until you have a child. (
Readers, you think you know love when you say "I do" but that always brings me to the pretend dilemma of floating in a canoe and only able to save one person: one's spouse or one's child. Every mommy I know looks around rather guiltily and then murmurs, "I have to I pick my child...there's a chance my husband could survive"). Continuing, second, you haven't really met Worry until you've gotten close and personal with Responsibility for a child.
You were the child that was blessed with
Militant Breastfeeding Tigress-Mother. You were the reason when a fellow traveler (a WOMAN) hollered "Flight Attendant, Flight Attendant!" at the offensive sight of your shape wholly concealed by a wretched baby blanket. (As if it was my idea to get the middle seat with my infant! As if it met my notion of improvement to have a male traveler lurch for her bulkhead seat assignment, willing to forgo American disdain for nursing infant in his quest for blissful leg room! As if it was comfortable to have this gentleman (from South America) launch into a discourse on how uptight Americans are about something so natural!) I battled Grandpa Mike at his own dining room table in a now-infamous face-down with my 6-week-old. You were the only child I tried to nurse with the child in a car seat and me riding. Let's just say, not recommended.
You were a shrieking, colicky, wound-up coil of nerves for months on end. You were the one I tried to convince neighbors might be "pre-teething" at age 7-weeks. (Patty Susan still giggles her guts out over that one). You were Olan Mills portraits at routine intervals and with budgetary impact. You were the baby that the retirees in the Commissary saw coming and picked up the usual drag-the-feet-savor-the-errand pace to keep several aisles ahead of. (You were the baby that one retiree felt necessary to intercept me in the Baby Aisle, snatch a pacifier off the shelf, rip the package open and attempt to forcibly apply a mute option. This meant you were also the baby with whom I sat with my back against the diaper display and nursed so as not to abandon my scream-ridden drive of suffering and 2/3 of a completed shopping list inside the cart already). I shudder at the things we endured before you even hit one year.
You were the only child with whom I ventured into an official play group; hence, you were the child who showed me that play groups don't just require the child to have pro-social skills but also require the parent to dismiss her regular gate-keeping of acquaintances to find common ground with a broader peer group: women who happened to hit the labor & delivery room around the same time frame as we did. You were there when I decided it would be best for me to avoid future play groups.
Yes, you were new clothes and very seldom hand-me-downs. You were a large diaper bag, packed for every possible contingency. You were sharing one car. You were all-the-attention. You were an album for each year of existence (well, until the siblings got a bit distracting). You were photos of every outfit and probably nearly every moment of pleasant disposition.
And then came that diagnosis. Everything after you hit age 2 years-1 month changed. You see, when you got the diagnosis, so did I. From that point on, the way I remember your life is dependent on where I was in the process of becoming an "Autism Mom". And from that point on, my memories are overlaid with what therapists we saw, what school you attended, what medicines we were trying, what medical issues we were sorting out. For that, you will never know how much I grieve. Patty Xena describes being an "
Autism Mom" as an existence of "chronic sorrow." I remember thinking "but I don't feel that sad." Ah-ha, but then I go to an awards assembly for you -- where your achievements are celebrated -- and boo-hoo. (What a mixed message that must be for you). Know, in fact, that I can go to an awards assembly, a wedding, a graduation, and even a Boy Scout Court of Honor for any
human being on Planet Earth and manage to make it about you in my head. Not only about the never-get-to's but for the parts of your childhood I didn't enjoy because I was waiting for the next shoe to hit the deck.
You represented the cross-section of
Needing a Staff of Dozens Boulevard and
Isolation Circle for our family. With the arrival of Jamie, we felt that little teeter-totter to normalcy. Until Charlie came along. But in profound ways, the struggles for you paid off for him. Less time grieving and certainly more confidence when advocating.
I do not mean to airbrush the low-points (like CAPS, like toilet-training that took the better part of 5-years, like following an ambulance, like being on a first-name basis with the dry-wall guy) but to remind me for now and you, eventually, that those things we are most terrified of dealing with are neither as terrifying or as horrific as we might have once projected. Winston Churchill penned, "It is not the first time -- nor indeed the last -- that a blessing arrived under most clever disguise." (If memory serves this appears in
The Gathering Storm, a most apropos title).
You, alone among your brothers, are silent blood draws and stoic injections. You alone find Krispy Kreme a reasonable pay-off for quiet. You, again alone among your brothers, are an eager vacuum cleaner operator. You independently provide inventory updates on the State of the Pantry. You don't mind grocery shopping and adhere to the list. You stay in the yard and don't give me a thousand-heart-attacks about where you've wandered off to this time. You may drive us to the brink of a DSM* diagnosis of our own with the wildly-unpopular quiz show,
Torture by Questions, but know how lucky we are that you can talk, write and read.
You are never outgrowing Thomas the Tank Engine...a good thing because it cost a fortune in `98! You are "
7/11 is a store in our community." You are undaunted by any prior admonitions from asking a stranger "What's your name?" and more often than not, the usually anonymous community helper seems pleased to have been asked (after recovering from their initial being taken-aback). You expect the household to run like a really reliable railroad. You are an entire
Quality Assurance department in one teenage body. You make those around you feel essential. You were a Garmin Nuvi (TM) before the technology existed and you still find no purpose in a U-turn and no joy in not knowing where you're headed next. You are the
ever-cracking-voiced narrator that informs, "Charlie is on the table." "Jamie has hit Jack." "Daddy is feeling very angry today." Your laugh goes like this, "
ha-HAH"! You haven't lost your snuggle-buggle.
Because you are part of a family, this isn't just about you. It's also about aggregate qualities you mandated that our family develop and implement:
Patience.
An even-more-whack-a-doodle sense of humor.
Learning to not give a damn (or at least cultivation of that facial expression). More patience.
Perseverance of our own...the companion to your perseveration.
Strength -- and I mean gritty, sinewy, sweaty, physical strength.
Agility.
Stubbornness (because we needed more of that).
Humility.
Loyalty.
A hatred of the slur "retard" and a willingness to publicly impart that viewpoint to the person using it.
Better, more effective "go-to-hell" looks (although Dad didn't have much of a learning curve there).
Still more patience.
Occasional desperation.
A dash of frenzy.
Being the "parent" in a packed meeting room of professionals, who at times did not live up to that term as a collective.
Crying more than I could have imagined for reasons unimaginable when we were buying your layette, when I and a friend wielded power tools to "assemble" your Jenny Lind crib, and when "What to Expect When You're Expecting" contained all the answers to the worries ahead.
An appreciation of solitude.
Learning to not get too far ahead of ourselves.
Planning itineraries, escape routes, and sundry minutiae to SEAL Team standards.
Public-speaking.
Logistics and scheduling elevated to art form.
Courage.
Real clarity on the utter injustice and unfairness that is life.
Faith and faith oft' challenged.
Hope.
Being hopeless enough to accept help from strangers and friends.
Yielding to the superior vector (BSD) while at times insisting on BEING the superior vector.
Acceptance.
The nagging antithesis of acceptance -- that things can be better if we work a little harder, a little smarter, a lot longer at it. More proactive than simple hopefulness, more pragmatic than optimism...there's no better word for this than (you-guessed-it)
Ass Power.
For all that autism has taken away from all of us, there are these things that have remained or been enhanced. If it has only taken us a bit more than a decade to suspect we may have gotten the better part of the bargain, then that is a fine, albeit surprising, result.
My role model, Erma Bombeck, would have written you a much briefer note:
Tim, I always loved you best.
Love,
Mom
* DSM = Diagnostic and Statistical Manual of Mental Disorders
Jack's aircraft.
Jamie's aircraft.
Jack's "WWF wrestling ring" ... I don't ask.
Jack's car.
Jamie's "Voltswagons"
Jamie's fleet, greatly admired by Lil' Crab.
And Jack's armada.
The dueling scratchers.
