Friday, January 21, 2011

Alternate Reality

Bowling. We went to see Lily's pediatrician today. Lily started satting low (as in, below 80) this morning at 6:30. Thought maybe she getting ready to go. Instead found she was full of boogers. Salined her and suctioned her (via bulb syringe) and decided to take her in for a good suction before the weekend. She's got some goop in her lungs. Awesome. The other girls have been had super mild colds, I think, and of course for Lily this is a big stinkin' deal.

On the way to the doctor's office I was half listening to NPR, on which they were interviewing a woman about video gaming, something I have zero interest in. This woman was a busy professional and also was very into online gaming, and had written a book about why gaming is really a good thing, and makes us into better humans. Or something. Her argument is that, rather than being relaxing, video games offer POSITIVE STRESS, that is, stress we choose, and makes us perform to our fullest capabilities. We work harder. We collaborate. We notice other's strengths and use our own to their greatest potential. We are focused, invested, and at our best.

This sounds ridiculous as I type it, but I found myself thinking that I am exactly in that place. I didn't exactly choose this stress, but I didn't say No when it came around, and I could have. I'm not saying that having a child with a terminal illness is a game, but it is an alternate reality, with different rules, and different values, and different locations and outfits and weapons. I am focused. I am being careful to care for myself, my family, and what needs to be done and letting the rest fall by the wayside. I am gaining strength and optimism from others who have traveled this road before. Yes, my house is more of a dump than usual, I haven't been to work in a couple weeks, I have two outfits I wear constantly--my "going out" outfit and my "cleaning/yoga/playing blocks" outfit, and both have stretchy waistbands, and it is what it is.

And I'm just doing what needs to be done. And I'm not relaxed. But I'm not out of my mind with grief or stress or depression either. Once in awhile I seem to "wake up" for a second and want to scream "THIS IS CRAZY!" THIS IS SO, SO SAD!!! WHAT AM I DOING???" Kind of like people probably do after spending hours gaming online. But I wouldn't know. I'm not a gamer. I'm just a mom with a baby who is dying. WHAT?! DID I JUST SAY THAT?? THIS IS CRAZY!!! THIS IS SO, SO SAD!!!

(insert clever reference to some sort of online game here.)


Kay Shean said...

Dearest Erin. "It is so so sad" but you, Zar and your beautiful daughters are so so amazing! We love you and you are all in our thoughts constantly. Much much love! Kay and Fred

Becky said...

It IS so sad. :( But how lucky you are to get to have her for as long as you do...and by that I mean eternity. Her big sister will take such great care of her when it's her time to go. I love you sweet Erin!

Anonymous said...

Darling Erin: You are doing just what you should be doing and focusing on exactly what you should focus on. And it is sad, but it is also a very blessed time to enjoy that sweet thing while you can and to make her life as pleasant as possible, which you are surely doing. You are Zar are remarkable! We all love you.

Carolyn H.

Anonymous said...

I am blown away by your heartfelt thoughts and your's and Zar's courage and strength. Your family is amazing as you take each day as it comes. Your acceptance in what God has chosen for you - even with all the pain - inspiring.


Jessica said...

I love your analogy. You know that I, too, was a mother of a dying baby. I, too, had to choose comfort care. I HAD to choose comfort care because it was right for HER; it was right for Eva. I was in my alternate world and chugging along doing what I had to do. I was still wife, mother of a 3yo and mother of a very fragile baby girl. All took balance that I honestly don't know how I did it.

On the outside looking in on you, you are doing it so well. So perfectly. You are doing what you HAVE to do for you and your Lily and your family. You are always in my thoughts and close to my heart.

I have a gift I would love to send to you for your older two girls. If you wouldn't mind me sending it, please e-mail me and let me know. It's changed since we first spoke.

Still amazing that I met you when I was expecting Eva and you had just lost Charlotte. Eva's life wasn't meant to be like Charlotte's, but it seems to be very much like Lily's. I feel very close to you and her because of that. It's like I'm seeing part of my journey from the outside; I see it in your journey as well. Very weird and not easy to explain.

Anyway, I just meant to let you know that I think you are doing an amazing job at this. Let me know if I can send your girls a little gift from my Eva and her big sister, Hannah.

All our Love,
The Clearfield Family

Jessica said...
This comment has been removed by the author.
Susan said...

Dear Erin,
Thank you for sharing your journey. I learn so much from you. Sending thoughts and prayers your way.
Much love,

{ Bethany } said...

There are no 'buts' to make this place you are in any better. I know you must be exhausted from it all, you have to focus or you'll be overwhelmed. Lily will never forget the love and care that you and your family, and all her care providers have given her. Her life is happy, despite pain and limitations...she feels your love and loves you, too.