The Superman Years: The Emotional Life of a Parent Caring for a Child with Type 1 Diabetes(Continued)

As Above, So Below
I handled hard things well, I always have. Years of crisis work in psychiatric hospitals honed an ability to keep calm in highly tense situations. I was determined to handle all of this the same way, but it turns out I was a bit grandiose in my vision. After just a few months of trying to juggle all the variables, the adrenaline seemed to fizzle out all at once and a sadness hit me the likes of which I had never known.

Funny how your psyche protects itself and gives you what you can take in pieces. Three months of knowing what the disease was all about ¬– living it – and still I had not made the connection that it was never going away. I was doing nothing more than walking down the basement stairs for yet another blood sugar check when the full realization of the word "chronic" hit me so unexpectedly and deeply that my knees buckled a little. It is one thing to intellectually understand a thing and another to experience it when it hits the level of the body. I had just gotten it.

The realization ushered in a period of deep struggle. How would I ever be able to keep this up? I felt weak and tired already and it was just the start. It reminded me of childbirth when they told me the hard labor had not even begun when I was 1 cm dilated after eight ours and the gal in the net room was 8 cm after one hour. There was just not way I could take it. Then a book passed in front of my face called, Anatomy of the Spirit, by Carolyn Myss, that gave me the correct perspective at the critical juncture when I was in despair.

She reminded me that everything we do in the physical world is at once symbolic. Like the Hermetic phrase, "as above, so below," everything has a higher and a lower meaning. So when you take a shower you cleanse your physical body and your physical hair. But as the water flows over your scalp, there is a physical cleansing as well. When you step out of the shower, you feel cleaner, physically lighter, relieved of something. When you clean out a cluttered drawer, there is a similar effect in your mind. When you put your hands in prayer position, a reverent feeling is invoked just by the physical action, even before you begin to pray. So too, do the origins of disease lie in the heavens, inseparable from the physical.

Holding this perspective through great difficulty gave me a way to see the bigger story going on beyond the pancreas. To cope, I would have to gather all of it in my acceptance (the good, the bad, and the extremely difficult), and accept it all as divinely gifted.

It changes everything, because now you see your work as a sacred charge. It doesn't mean it won't be hard, grueling, and exhausting, but it will have purpose. You will happily do it because you have been entrusted to it. You must be the exact right person to do this. You are doing it. You diligently learn all the necessary care routines, give the injections, check blood sugar readings religiously, and plan for all contingencies. Of course you're the one to do it.

Cure Parties: To Dream or Not to Dream; Idealism vs. Realism
The first time I attended a Juvenile Diabetes Research Foundation fundraiser (on the invitation of another mother who happened to be in the pediatric clinic the day of diagnosis), it had only been a couple of months since diagnosis so I was very emotional. I took every bid personally, holding myself back from going up to everyone saying, "Thank you, thank you," emphatically with my hands clasped to my heart. Just one of those drinks (the way they make them at those things), and a new diagnosis is not a good mix.

The next year I attended, I spoke. I delivered a speech. Now, I have no natural inclination to put myself in front of a couple hundred people and a spotlight, yet this is exactly what I sound myself actually asking to do. I wrote an impassioned speech, practiced it a million times, and still wanted to thrown up in the days and hours leading up to it.

Despite another year and a couple of months since diagnosis, I was still very emotional. I spoke of my love/hate relationship with insulin, of the intimidation red glucagon kit which forever sits in our armoire, the constant threat of seizure, and the lost innocence of an ice cream cone at the pool. But in closing I offered an image of a different potential future I was for our kids–one in which a large group of us are celebrating by a huge bonfire, saying a few words of gratitude over our no-longer-needed lancets, needles, and insulin vials, before throwing them all up into the fire.

It was probably too much. I'm not sure everyone there wanted to hear the raw emotion of a parent. But looking out over the crowd as the lights came up, I saw plenty of faces with glistening eyes who got it, plenty personally involved with the disease. When I returned to my table after the speech there was a woman–a mother–waiting by my chair to talk to me, crying. Her daughter had been diagnosed years before but she related to so much I had said. My husband sat silences, which believe me never happens.

What I remember most about that speech is how much I knew the image could be true. It wasn't like wishful thinking or the deluded fantasy of a desperate parent, but more like solid knowledge of the possibility.

Years ago I sent out an inquiry to parents on a major diabetes website for something I was writing at the time. I asked them how they envisioned celebrating the cure. I had expected to receive all kinds of great, celebratory visions. Instead, the responses were, "I haven't really though about it," or "the cure is not discussed at our house." They were quick to point out thought, that this didn't mean they didn't want a cure more than anything else.

I was a bit taken back, but then I looked at how far out of the diagnosis they were. These were the long-timers, most ten to eighteen years out.

I've been at it twelve years so I understand their responses much better now. We have suffered setbacks and painful disappointments regarding advancements and a cure, yet we must continue with the regimen just like we've been doing year after year, day after day. I understand the parents' stance. We'll keep doing what we need to do. Call us when there's a cure.

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Last Modified Date: August 02, 2013

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