Living in Invisible Cities

On this journey of mine, I've learned a lot about things that just, honestly, I never would have thought of before. You don't know what you don't know...y'know?

I read articles, am a member of several parent groups (both real and virtual), devour books (though not as quickly as I would like), and basically have a heightened interest in a all things "special needs."

One day, I came across an article. I think it may have been a blog post on some web site actually. That part's not important. What is important is that I read the comments. And among those comments were the words of a new mother. She spoke from the heart about her baby girl and I was drawn in through her words. I clicked the link that led to her blog and now I am a faithful reader. She doesn't post every day, but when she does, I am moved. I think she's wonderful and I have her permission to share a recent post with you. I think every parent should read this.

I think it's very timely since I've been talking about the definition of family recently.

It's not about having things be easy every day. It's unconditional. It's dealing with something unexpected and maybe not liking it, but doing your best regardless. It's not fair sometimes.

This...is love.

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The photograph above is part of our nighttime ritual. Turn on the dishwasher, turn down the heat, shut off the lights, draw Willa’s meds. These take us from 9:00pm to 6:30am, peppering the evening and deep night hours with their interruption. Those tableaux of weirdness I mentioned before? This would be one.

My husband will not even take Tylenol if he has a headache and I know looking at this layout every night on our countertop makes his brain collapse a little each time. He cannot believe it’s ok to give a baby so much medication, ok for a baby to have so many tests and procedures, ok for a baby to have radioactive materials pumped into her like water. And I say, “Look at her, we feed her through a tube, none of this is ok.”

And it’s not.

It’s not ok.

During the first real scare we were ambulanced (is this a verb?) to the local hospital. Frustratingly (if not dangerously), because of insurance and liability issues we have to be taken to the nearest medical facility. Never mind the fact that they do not even have pediatrics. Never mind the fact that Willa is way way more than they can handle. Never mind the fact that each time we are sent there we waste five to six hours waiting for the transport that will take us to CHOP (Children’s Hospital of Philadelphia and the most unfortunate acronym I have ever heard) when the baby is failing. It’s a nightmare and this past time we found ourselves in the ER I found myself doing something that shocked the hell out of me.

The ER doctor looked at Willa and began ordering tests, blood work, cultures and all manner of time-consuming, unnecessary and misdirected busywork leading us down lost avenues and forgotten streets. I knew that he was leading us there and so I said, “No. I don’t want you to do any of those things. I just want you make sure she is stable and arrange for the transport to CHOP.”

Now I never in my life would have thought I would do something like this. I’m no shrinking violet but I was brought up to allow figures of authority to do their bit and listen quietly while that bit was done. Not anymore. I’m learning what so many of you already know. When it comes to medicine, all bets are off. You have to trust yourself when you know things are not ok.

Part of finding my way as a mother has been finding my way as an untrained, unskilled and highly emotionally invested nurse. I can insert an NG tube into my baby’s nose, put it in her stomach and tape the outside section to her face in less than a minute. I can draw meds perfectly, I can administer them in the dark, shutting off a pump, disconnecting tubes, flushing lines and getting the feed rolling again before the alarm goes off. I can insert a g-tube into a hole in my kid. I can identify when Willa is tachycardic. I can talk my girl through an MRI, an X-ray, a DMSA, a VCUG.

It’s not ok.

I never wanted to be a doctor because I never wanted to have to do any of these things, make any of these decisions, live with consequences. What if I had been wrong in that ER? What if I make a mistake with her dosages? What if I have to decide to let her live or die?

We don’t even take Tylenol, but we have a girl who takes everything, needs everything, will have every test, will need every procedure.

So what is ok? Different things different days I think. It’s ok that my husband and I talk about everything. It’s ok that we demand what’s best for her; even if we are using what information we have at the time. It’s ok that I can learn new things. It’s ok that I know I’ll make mistakes. It’s ok that I am scared of very little at all anymore. It’s good even.

It’s a morass: medicine and its world. But we are in it, whether we like it or not. I’m not a doctor, or a nurse, but a mother with an interesting skill set. Now if I could only figure out how to work my crock-pot I’d be unstoppable.