On Advocacy

Phin has been making the medical rounds again, as children with special needs are wont to do. This is a new city for us, in terms of specialists and facilities, which means that we’re learning, all over again, what is where and who does what.

This is the part of parenting a “different” child that I like least. Dealing with doctors— especially those who focus myopically on one system or function of the body— brings out a strange part of me that I never discovered until I had Phin. I’m three quarters fierce advocate, one quarter hand-wringing neophyte, all wrapped up in a nervous bundle of “what horrible thing will they find?” In the day to day, I simply parent Phin. I do what works for as long as it works, and when it no longer gets the job done, I adapt. But in the waiting room of yet another Children’s Hospital listening for his name to be called, I find myself questioning everything.

And I hate that feeling.

I hate feeling like I have to defend my son, our choices, his accomplishments, this journey we’re on. I hate feeling like I have to press for tests or deeper investigations. I hate knowing that he doesn’t understand what’s happening. I hate that he might be frightened and unable to tell me, or hurting and not have the words to explain. I hate that it is always, always, the anomaly diagnosis. I hate feeling like I must be the squeaky wheel, the fly in the ointment that finally gets the phone call back for a sudden, miraculous opening in this department or that.

On Advocacy

But more than anything, I hate feeling like somehow, maybe I’ll fail. Maybe I’ll back down one day and miss some opportunity for my son that would have made a huge difference. Or maybe I’ll miss a sign, or forget to mention a symptom that only felt like a blip because I was too caught up in the minutiae of it all. Maybe I’ll get too tired to fight this fight for him, and a door will slam shut before I can rally myself back to action.

There is no vacation from parenting a child who needs someone to be their voice. There is no break, no downtime, no space where you can simply expect that the right thing will happen without you being on the alert. There is no assuming that the doctor gets it, no feeling like this is just a routine visit, ever. The cost is simply too high to grow weary and yet… it’s the most exhausting thing I’ve ever done.

The best part of these days when I’m forced to do battle with the giant hamster wheel of special needs diagnostics and treatment is, invariably, walking out. No matter how soul-draining the visit was, how oblivious the specialist was to my boys’ precious, lively individuality, how frustrated I felt at another dead end, there is always this: Phineas’ hand slipping into mine, his little joyful, hopping steps, his huge grin lighting up my heart.

No one can take away who Phin is, or how blessed I am to be his mother. No medical chart can contain the truth that is his unique place in God’s Kingdom. We can spend our days traversing the labyrinth of the medical system, but it can never separate us from God’s goodness, His story, and His plan for our family. Phin himself is always the greatest reminder of that.

 

On Advocacy

 

2 thoughts on “On Advocacy

  1. I get it – so many fears have come to full bloom in my mind over my special one. A wise mama once told me, in relation to homeschooling fears, that the kids will get what God wants them to and in His good time. We just need to be faithful to walk the walk. I see the connection to caring for a child with complex needs – we can’t allow ourselves to be consumed by fear or worry. It’s counterproductive at the least and distrustful of God at the heart of it. So we are diligent and mindful but not consumed by fear. It’s a difficult balance but at the same time, freeing to know that our Father cares more for our children than we ever could. What and when, all in His good timing.

    • This, exactly! I find that it’s an easier surrender with my neurotypical children; somehow, I have found the space as they’ve gotten older to step back and say, “This is between you and the leading of the Holy Spirit in your life.” I pray I can get there with Phineas. It is NOT my power that sustains him, and I know this. But, oh, the temptation to think that in the darkest moments!

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