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My friend Mary, the embodiment of Courage

A friend of mine from law school recently lost her son, Patrick, just before he was 11 months old. Patrick was born with a very unique heart anatomy and after an extended hospital stay in which doctors finally realized there wasn’t anything they could do for him, Mary and her husband Phil decided to bring him home so he could live out his life in a loving environment, filled with cuddles and snuggles from them, his sister Mira, and their circle of family and friends.

They knew about Patrick’s unique anatomy before he was born. Their daughter, Mira, was also born with CHD, so they knew at least a little about what this was going to be like for him. They remained hopeful that Patrick would flourish the way Mira has, but it wasn’t to be.

Starting with their decision to use IVF to conceive, Mary has been blogging about their lives. Those of us who have chosen to have shared the highs, lows, and everything in between. Mary puts it all out there – the joys, the questions, the heartbreak, when she feels like she’s maybe not doing the right thing (though she always acts through love). Those of us who have been reading along are heartbroken for their loss. A huge community of people is in mourning right now, at a loss for how we can help. This is truly a testament to Mary and Phil, and the love they put into this universe.

To me, this choice to share so much of their lives, even when she didn’t think it made her look good, is courage at its finest. She had no way of knowing who might find her blogs or what they might say, but she wrote anyway. I know that there are people who have taken comfort in what she’s written, who have found peace in their own lives.

If you want to read about their journey, go to Fixing Patrick’s Heart. You can find the link to her past blog there as well, and get in on this from the beginning. There are some really adorable pictures of Mira, Patrick, Phil and Mary on those pages. Those children will just light up your life.

If you’ve read this far, I would ask that you take just 30 seconds to send loving thoughts their way. They need all the love and support this world can give them right now. Also, take a minute to hug someone you love.

Mary, you will forever be a complete and total rock star to me. I’m sending so much love your way.

Sometimes you just have to take the damn pill

It’s been just over 7 months that I’ve had a day without pain. It started with my back in late January (though it had been off and on before that) and has now spread to my right leg after a less than wonderful surgical result. Saying that chronic pain sucks is both obvious and an understatement.

My chronic pain is more than just the pain I feel in my back, leg, or foot. It’s the depression and frustration that come with the inability to do things that I used to be able to do somewhat easily. That come with the fact that things that we do every day or on a regular basis are now more dangerous for me to do. I can’t pick up my right foot, so stepping over the wall of the bathtub to take a shower requires a lot of concentration. If I don’t focus while I walk, I trip over my foot and go sprawling onto the ground, scraping hands and knees and tweaking my back. Not ideal after a lumbar fusion.

It’s also exhausting. Pain is the body’s way of alerting you that something is wrong and trying to get you to do something to help it fight an invader or fix itself. That process takes energy, and not a small amount. Add that to whatever it takes just to function through a normal day, and by the time bedtime rolls around, you’re pretty much done for. If you’re lucky, you can sleep well your while your body gets to take more time to heal itself. If you aren’t, the pain keeps you awake and your body doesn’t get the time it needs to heal.

One night recently I was trying to fall asleep. That day I’d been feeling especially overwhelmed, stressed out, and depressed. My back, leg, and foot were causing me a lot of pain and I was also trying to get a handle on my life and what I’m doing with it. Between the thoughts racing around my head and the pain, I could not sleep. No matter which position I tried a pain in my hip would not go away. I finally gave up and dove into my supply of oxycodone. It took about 15 minutes for the drugs to take effect, but once they did, everything got better. With the pain gone, I could focus on my thoughts and come up with a battle plan for life. I was able to break the stress into more manageable pieces and stop feeling the stress as much. I stopped feeling like I was trapped at the bottom of a well with no way out.

I’d been avoiding painkillers, trying to force myself to get used to the pain. My reasoning was that since it wasn’t a constant 8 out of 10 on the scale it wasn’t really that bad. Most of the time it hangs out somewhere between 2-4, spiking up to 10 occasionally, but the spikes usually cap at a 7 or 8. I realize now just how ridiculous I was.

Having a low level of constant pain is like having a fly buzz around your ear all day long. It’s annoying, but it doesn’t seem like a big deal. It’s just a fly, right? The problem is that constant stimulation like that will drive even the most reasonable people to snap. You have to do something to take care of it before it gets to a breaking point. Upping the level of the pain only increases the rate at which you reach the breaking point and the force of the explosion.

I need to have more respect for the constant stress my body is under, especially since it doesn’t look like the sources of pain are going to get better any time soon. I’m considering a tendon transfer so I can walk a little more easily, but that doesn’t guarantee that the nerve pain will go away though I hope it eases some of the foot and ankle pain I’ve had. My back is still just recovering from the fusion. If I need a pill so the little fly doesn’t turn me into a suicidal or homicidal woman, then I need to take the damn pill.