Saturday, April 7, 2012

Day 7: Out & Living a Little

I have shared as many things as I could think to here on this blog.  However, I believe I forgot one of the most important lessons of all.

If you feel Cushing's grant you a reprieve, go out and live your life.  

You may have a few good hours. 
You may be lucky to get a few good days.

Whatever it is, don't waste it.

Be sure to grab it with both fists, and don't turn loose of it.

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To that end, I plan to spend the rest of easter weekend out with my daughter / favorite miracle bunny.

Happy Easter, y'all.

Day 6: A Good Friday

Today, I took my daughter to her first Easter egg hunt. She is 3.5 years old.

Wait. What?  Is that right? How can this be?

Year 1: no walking, no hunt 
Year 2: hunted eggs in a park, Mama supplied eggs, thus no competition
Year 3: surgery at cancer center to remove pesky tumor from Mama's pituitary for the second time.
Oh yes yes yes. Now I remember. OK. OK. So that's how we got here. That's how my daughter is 3.5 years old and never engaged in a proper Easter egg hunt.
In 2011, I returned home from my four-day hospital stay on Saturday. Easter was the next day. I had not made that Right-Turn-Clyde onto Recovery Road yet. I had been so sick in the hospital with normal post-op cortisol-finally-dropping misery coupled with diabetes insipidus. To survive, I was adamant about wanting the room silent and dark. The slightest sound overwhelmed my body. A beam of light was too intrusive for me to process. When I returned home, I tried to protect myself by replicating that environment, except with hopes of real control over ingress and egress. Thankfully, no one obsessed over my vitals at home. With no sound, no light, I found sleep, but then, the tinnitus set in. Don't know what that nifty symptom is?  Be thankful. It's the omnipresent ringing in the ears. Nearly one year later, I still hear it. I hear it right now as I type in my new state of silence. Grasshopper-rubbing-legs-together silence. Great. 

What's that? An Easter egg hunt? Oh yes. 

So, I tried to plan ahead and all (always the best intentions without all that feel-good execution).  I had purchased the Easter egg decorating stuff before I went into the hospital. After the surgery, I just didn't feel up to it. My daughter stayed with my parents while I was in the hospital, and she remained with them that Saturday night so I could sleep.

I remember my mama calling me Sunday morning about Easter plans at my sister's.

No, I don't think I can go. 
Say what?
You want to take my child over there and let her hunt eggs with her young cousin, without me to see her or share in her joy? 
No. Yes, sure, you can take her. 
She will have fun. 
No, no, I don't want her to miss Easter just because of me. 
No, I'm sure. 
I'll be fine. 
Just bring her home to me after all y'all finish up.
OK. Bye.

I buried my head into my husband's chest as I sobbed.
Looking for reassurance I knew no one could give, I asked, Next year will be different, right?  All my lovey could do is nod.

* ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~

I took my daughter to her first Easter Egg hunt today.  She had so much fun with the other kids, finding treats inside the eggs, and really marveling in the glory of it all.  I feel pretty confident in saying that it made both of us very happy. I thank all the new friends I've made in California for hosting such a fun Easter celebration. It means more to me than I could ever tell you.  I can only hope my little one will always be as delighted and delightful as she was today.

Today is a good Friday because I didn't think about Cushing's too much. That's really a good Anyday. I'll take this any day of the week and any day of the year. 

So go ahead. Ask someone with Cushing's how this disease has altered the trajectory of their lives and those of their family. I bet they will answer with a thousand stories of unfulfilled promises. What I know for sure is that as long as I am alive, I will try to make up for all the times I couldn't do like I had planned or promised. I just hope this body lets me.