Sunday, March 16, 2014

Rainy Day Contemplations

First, I hate to tell everyone, St. Patrick's day is not until tomorrow.  I don't care how much green you wear, how many parades you have, how many fun runs, it does not count!Okay that is off my chest.

Ss some of you might know I had an experience around Christmas that made me want to reach out to some new Cancer Kid families.  They were unfortunately introduced to Cancer World on Christmas Eve. 

I searched my brain and began to put some things in a bag.  I thought long and hard about what those items might be.  After two stints in intense Cancer World, several years apart it took a while.  I had learned a lot between treatments.  There is lots of "stuff" available at Seattle Children's but not always what you really need.  

We ended up spending lots more time inpatient the second time.  Months and months at a time.  Did I mention months and months and weeks and more fortnights.  So the gathering began.

1. A multi-useful bag.  As a parent you are always hauling around stuff.  Cloths, clean and dirty, stuff to go to the shower.  Extra stuff from the room.   A good bag is necessary.  

2. A china cup.  Months of paper cups are hard.  It feels so so institutionalized.  Nothing like that morning cup of coffee from Starbucks in something you can warm your hands on.  For a few nano seconds it is possible to pretend you are having a moment of peace and quiet at your own home.  Also I was moved by this passage years ago.
"Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald 

I also let the new families know there was instant hot water from the nurses and they had tea in the nutrition rooms for the families.

3. A Starbucks card to get the families started on their way to being Gold Club members.  Oh trust me during admissions food and drinks from Starbucks is a life saver given the lack on going lack of nutrition at Seattle Children's.

4. A small shaker of Cinnamon Sugar.  Cinnamon settles the stomach and helps when there is not food from the kitchen because they are closed and your child has been NPO all day because the procedures are backed-up. (Happens all the time.)

5.  A magazine.  During Cancer Treatment the most any parent can read is a page, with lots of pictures.  I think this is one reason bible scriptures are helpful. Short, and to the point.  Granted I did read House of Seven Gables and War and Peace but that was just because I am weird and it took me a long long time and I had started them before.

6. A bead. A small bead that will fit on to the parent ID badges, the necklaces we all wear to ward off evil spirits.  Cora Breuner took a bead off her own necklace and gave it to me during a very scary dark time.  I have handed several to moms in crisis.  I left one with my friend Elizabeth from NJ and with Carol whose daughter survived a transplant for lymphoma.  Some of the kids get beads of courage but the Mom's need them too.

7. A rock.

A stone, a little bit of something to grab on and place and focus on during some of those awful times during the process. The pain, the despair, the fear and the agony that is transplant and cancer treatment.  A stone. A special stone. One that shows a bit of interruption in life.  Not a big one. A little one. One that permeates everything in your life but still only a disruption.  This stone had a disruption but was able to keep it together and regain itself.

8.  A few pre-stamped note cards.  Pretty happy ones. Ones that can be used to thank all the people in the family's life for all they will have done for them.

9. A small warm fleece throw.  Hospitals have blankets but they are nasty and scratchy and smelly and need I go on?  Something soft and warm to gather around your shoulders at 2:00 am is a good thing.

10. A wind chime. Oh yes, the chime.  We didn't stumble on to these until our first night of our first month of Blue Thunder Jail.  Mary-Elizabeth had 6 various IV pumps, we shared a room with two other kids and their pumps.  One night the pumps alarmed every 15 to 20 minutes.  I still can hear the noise in my head.  I came unglued.  The next morning I went to City People's Hardware store and found the smallest, good sounding chime.  Not big, not noisy.  Pleasant tinkling was the goal.   We installed it and things got better.  I think the pumps were feeling unloved.  Our chimes were with us for the entire time of the Transplant.  They were placed for either maximum sunlight or pump duty.  They have been passed on to another patient that will be spending months in the hospital.

Then there is what ever. What ever strikes our fancy.  Maybe some nice cream or hair products. Some shower shoes, a list of places that deliver real food from the outside world.

I approached Seattle Children's Guild Association and this was their reply."

Hi Sally,
I hope you are doing well. I am sorry to be getting back to you nearly a month after we met.  It has taken me a while to reach out to different individuals to seek their input.
  We talked about the bags and the challenge with storage as well as the contents not necessarily being the right fit for all families.  We think it is a lovely and generous idea, but it is not something we are able to accept and distribute at this time.  I know that every item in the bag is meaningful to you, and for good reason based on everything you shared with me at our meeting.
I have reached out to other staff members at Karyn’s recommendation to seek ideas for items that would be most helpful to patient families should you be interested in changing direction of your support.  The response so far has been that food bags and gift cards are the greatest need – which is currently a project that we are doing called Operation Family Care (see attached flyers).   We would welcome your support of these efforts if you were so inclined.  You do not need to be a guild member to participate.
Regarding the Wishing Rock Guild, we haven’t processed your application or membership checks as we would need to determine a different project than your original intention. Should you desire to raise funds for the cancer program at Children’s, we can talk about different funds that may interest you in supporting.  
Is there a good time Melissa and I can call you and discuss other ideas?  I know you feel strongly about your bags and thus may not want to participate in any other efforts. If that is the case, we totally understand.
Thank you Sally.  Hope to hear from you.
Aileen Kelly
Executive Director | Guild Association
Not to be dissuaded we are going ahead.  I think Aileen is right.  This should not be a project for Seattle only there are other very deserving families in pain, not just here.

As the rain continues in that steady drippy sort of way that is so Seattle, I will start the foundation paperwork, Work on an agenda for our next meeting on Wednesday the 19th and carry on.  Seems like the right thing to do. Please contact me for more information.

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