Hi. My name is Heather. I know you’re probably going to call me, “Mom,” throughout most of this first meeting, and that’s o.k. I can take it, though I admit you’ll score bonus points if you take the time to remember me as something beyond my role today. But again, if you don’t, I’m not going to hold it against you. It’s not me that I want you to invest in, anyhow.
Your office is nice, by the way. Really nice. The fish tank in the waiting area is first class, and the book selection is divine. Trust me, I know a good office set up when I see it. We’ve made the rounds, as you know. Parents of special needs kids get around in the medical community. I won’t say I’ve seen it all; another hallmark of parenting these kiddos is the wisdom that I most certainly have not encountered every variant of every situation.
What I am an expert on, though, is this:
This tiny little guy on the table, swinging his legs under the paper gown and giggling as we make animal noises? This is my son. My son. Hear that? I know right now he’s “room 4” to you, or maybe, “the patient.” But he’s my son. So please, put down the office-issue laptop that holds all the files you currently think of as the little person in front of you and look. Look for just a minute and meet him. Not his alphabet soup of diagnoses. Meet him. Please.
His name is Phineas. He may or may not tell you if you ask but please, ask anyhow. I want you to see how his big blue eyes crinkle and his whole body shivers when he’s shy but also delighted. So much of Phin’s communication isn’t done with words. He’s an all-over-happy or all-over-sad kind of guy, and that’s what punctuates the normal flat effect. If you take the time to watch, he’ll tell you exactly what’s going on at any point in time through his wiggles or limpness.
I know what you see. I know that your brain is ticking off a checklist, making mental notes to ask for test results. I know you’re already thinking about the referrals you’re going to make, and the labs you want run. This is your job. I get it.
But this little guy? He’s more than my job. He’s my heart, walking around outside my body.
He is the little man who wakes up bleary every day and barely makes a noise until he’s had the chance to shake off the sleep with a few minutes of a quiet activity.
He is the boy who can’t get enough of Christmas: the lights, the songs, the tree, the inflatables in the neighbor’s yard.
He is the tiny voice singing, “To God Be the Glory,” as he scoots trains around a track.
He is the warm weight on my lap during Bible Study, or pulling my hand onto his head to stroke his hair as he sits beside me on the couch.
He is the shockingly good dance moves that keep us all clapping.
He is the one who fills a perfectly Phineas-shaped hole in our family.
So, please– meet my son. All of him. Not just his limitations. Not just his slow growth. Not just his enigmatic series of disabilities. Meet my son, Phineas. Get to know him, get to know us. Become a trusted member of the team that fights for Phineas every day, under every circumstance. Become someone who cares. We’re not simply looking for a person with letters after his or her name to write prescriptions or offer another rabbit trail that leads to yet another specialist’s door. Anyone can do that. We’re looking for a friend. An ally. A shoulder to cry on when things look their worst, and a cheerleader when things are their best.
It’s a tall order, I know. It’s more than I ask of anyone else who sees my other, neurotypical kids. But as a mother of a very special little boy, I need this. He needs this. And maybe, just maybe, you need it, too. If there’s one thing I’ve learned about people who allow Phineas into their heart, it’s that they are never the same. Perhaps our being here today is a door into something completely unexpected and wonderful for you. I hope so.
Now, let’s get to work.