That Afore-Mentioned LOVE Thing

A year ago today, we brought Erin home from the hospital for good. I clearly remember walking through those halls with Dave on that last day, both of us with the resolute determination to never make that drive down the Stevenson with her in the car again. It was time...

The logistics of coordinating delivery of the necessary equipment to our house and scheduling Erin's ambulance transport from hospital to home had been covered. She would need platelet transfusions every other day, and that system was arranged with LifeSource who was set up to deliver units to the house (hence my ongoing appeal to support their services) and our favorite nurse Steve was coming to administer them. We knew how to keep her comfortable. We did not have hospice. With full understanding that the time was near, we wanted to care for her ourselves.

With all those nuts and bolts secured, it was time to say our goodbyes. Plain and simple, it was heart-wrenching. Those of you who have lived for days/months/years in the hospital with a sick child understand the emotional attachment that develops with the doctors and nurses. Essentially, they become family. They care for your child with compassionate words, expert hands and tender hearts, and in doing so they save you from drowning. As I type this now, I want to jump in my car, drive down to the U of C, admit myself to a bed and beg, "Oh please please take care of me!".

I wrote the email below on December 2, 2009 while still at the hospital. This was a follow-up to a letter I'd written a few days prior while trying to come to terms with the madness of the day when I learned to never utter the words ~ things couldn't possibly get worse. I had begged for advice from all on my contact list because I'd stopped breathing. When God closes a door, He opens a window. didn't seem to be holding true, and I was desperately gasping for air.

I remember reading all those emails, so grateful for the advice and the reminders of things I really did know deep down, but in my state of exhaustion and despair had simply forgotten. I think I just needed the nudge of hearing the words from others to jolt me back to center.

Dearest Family and Friends,

In my last email I asked for advice and it's been wonderfully uplifting to see the responses. They have come in rather slowly. It's much easier to write an answer to those good emails with the "Way to go Erin!" and "You did it again!". This is tougher, I know. It's much more difficult to write about from THIS end. Some of you have done this cancer walk with a loved one and know how it is at this point. Many of you look on in horror, blissfully unaware of what it is truly about and grateful it's not your child. I used to be in your category - wish I still was!

ALL of you offer sincere prayers, good wishes, hope, inspirational quotes - GLUE to hold us together.

The advice that was most often mentioned and I think the one that we continue to do each and every day is to LOVE Erin with all our might. LOVE her from the bottom of our hearts. LOVE is stronger than cancer. LOVE trumps cancer. LOVE, and push fear aside... LOVE

BREATHE. Keep breathing. Keep looking for air to come in that window. Don't slam it shut.

SCREAM. Scream MORE if you need to. You are screaming with us, for us.

RAGE at the injustice of it all, but one reminded me to "be angry at the right things". Good advice that made me stop and think - a lot.

CRY. You are crying WITH us, FOR us. Some of you with "tears and snot all over your faces". Erin is always amazed at the amount of kleenex I go through when I cry. I tell her if I'm going to cry, then I'm going to make it a really worthwhile one - an ugly slobbering cry, not a movie star one. It's somewhat comforting to know you're crying with us because misery often does love company.

Focus on the GOOD things, even though they are really hard to find. Look for any bits of "NORMALCY" whatever that is now.

LAUGH when you can - even if it's at the sheer absurdity of it all. It gives you a moment to wipe the crying snot from your face. "Christmas Vacation" was on TV last night. You can't help but laugh at Cousin Eddie in a blue leisure suit!

Trust in God's plan, even though it's appears to be so WRONG, UNJUST, UNFAIR, BIGGER THAN MY MIND CAN COMPREHEND. Have FAITH that all will be well. The world will unfold as it should.
A tall order.

And there is Erin, whose life has been so different from the norm that peers have looked the other way. Oh the HURT that cuts me to the core. The tears that Erin has shed about aloneness. One has very little control over what cancer will do. One has total control over the way they choose to react to the beast and how they treat the chosen one.

Accept HELP from others. YES PLEASE!

Since the beginning of all of this we have been very tight-lipped about medical details. Part of the reason has been to protect Erin because throughout all of this she has wanted to be ERIN and not the girl who has cancer. It remains difficult for me to be forthright with information.

Deep breath -
Erin had a sudden, spontaneous bleed into her brain last Friday while we were out shopping. The physicians determined it was caused by another lesion on her skull, in combination with her low platelet count. Her body's ability to produce platelets has been compromised due to three years of chemotherapy. The result of this bleeding is the inability for her to move the left side of her body from her shoulder down - at all. She continues to have pain from multiple bone-lesions in many parts of her body. There are many tumors in her lungs.

Erin is trying to come to terms with this most recent, horrendous event, on the heels of three years of an arduous battle. For the FIRST time in those three years, she feels defeated.  She says she's done.

All of us - Erin, our immediate family, the wonderful physicians, physical therapists, pain management team, case workers - are in the process of developing a plan to move in the direction that is best for Erin. We are supporting her decisions and attempting to ease her frustrations about this latest cruel assault from the cancer that will eventually have its way with her. Our goal is to be home as soon as we have everything in place, to know we are supported in every way needed and confident that we can react appropriately to any situation that may arise. Due to the frustrating unpredictability of this disease, we are trying to take things one baby step at a time.

I know so many of you want to help. Most of the time I don't know what is needed. This is still the case, although I will have a better idea over the next few days. I want to be home. I'm so HOMESICK.

We are ALL tired beyond any type of exhaustion that can be described, and yet somehow, SOMEHOW there is the ability to keep moving. I think it's that afore-mentioned LOVE thing.
~~~~~~~~~~~~~~~

And the neighborhood that had carried us through three long years continued to do so once we got home. There were Christmas lights on the outside of the house, food in the refrigerator, meal delivery set up for weeks, gifts left at the door, the snowflakes from the school children, cards, emails... constant reminders of support. We felt safely tucked in the hands of a whole community that was preparing to say a collective goodbye to one of its own children. In spite of God closing the door, He opened the windows so the love of family and friends could gather inside, wrap their arms around us and help us let go of our sweet daughter/sister, for it was time.

Let go...
It's time...

As I sit here now with all those memories washing over me in the stillness of the oh so empty house, I can close my eyes and still feel that LOVE thing.