Tonight's picture was taken in May of 2008, at Mattie's kindergarten end of school year party. This maybe one of my all time favorite photos of the three amigos. Charlotte, Mattie, and Campbell became very close friends in kindergarten. They played with each other beautifully, they defended each other, and as Charlotte told us repeatedly, they were all going to go to college together and be roommates. I remember this day as if it were yesterday. For my friends, their children are now five years older from when this photo was taken, for me, my mind will always be trapped in kindergarten.
Quote of the day: The right thing and the easy thing are never the same. ~ Kami Garcia
I have been able to accomplish a lot of Foundation post-walk paperwork and reconciling of databases in the past two days. However, there is naturally more to do, especially as it relates to putting all walk related items away, and securing them properly so they can be used for another year. We live in a two story townhouse with NO storage. If I had a basement, putting away posters, remaining t-shirts, bags, and so forth wouldn't be as complicated. But without a basement, the logistics become more daunting. I have become quite the organizer of closets. I remember when Mattie was ill, my friends Christine and Ellen came over to our home to try to help me with my closets. They did this because they understood that items and gifts were coming into Mattie faster than I could process them. During Mattie's illness our home looked like a bad episode from the show, Hoarders! In fact, it remained this way for over a year after Mattie died. Maybe longer!!! The reality of trying to clear out two horrible years of our life took courage! Courage that I had to muster alone. I cleaned out our home mostly single handily, of course with Peter's assistance. Every item was attached to Mattie in some way and therefore parting with anything was hateful. Mattie's room is still exactly intact, and Peter has asked me what we are going to do about this? The answer is..... I DON'T know!
However, I still remember Christine's comments when she came over to help me years ago. She couldn't get over how I organized my closets with shelves and racks to maximize storage space. It was a compliment, because she did not think she would have come up with this system. Christine and Ellen helped me multiple times with cleaning things out when Mattie was alive, but it was like trying to hold back the ocean. I can't quite describe the overwhelming number of toys and gifts Mattie received DAILY at home and in the hospital. It was wonderful and it kept Mattie focused and entertained. But these ITEMS had to go somewhere, and in an emotional crisis it doesn't matter where they go. So it gets stacked and piled. I know some people look at the concept of hoarding as unnatural and not feasible. I on the other hand realize that under the right circumstances with emotional issues to contend with, the dynamics are ripe for hoarding. I never took photos (that I can remember!) of our home in disarray, but I do remember it well! I suspect this is just one of many other aspects that people caring for a sick child do not necessarily openly talk about. But it happens and I also know it takes strength to tackle a hoard.
In the midst of working today, I have been following the case of ten-year-old Sarah Murnaghan, who has end-stage Cystic Fibrosis, and has been on the lung transplant list for 18 months. I can feel the fear and dismay in her parents and I know what it looks like to hear that your child is going to die. However, unlike in Mattie's case in which everything medically possible was done to give him a chance at life, everything is NOT being done to help Sarah. Why? Because Sarah is a child and according to the transplant rules she doesn't meet the age requirements to receive an adult lung transplant (child to child transplants are much harder to come by, because in order for a child to receive another child's lungs, the donor child has to be in a vegetative state).
If you would like to learn more about this controversy, I have attached three links below. One is a video and news story about Sarah, the second is hot off the presses announcing that a federal judge overturned the transplant law today, and third is a petition her parents created. The parents were trying to get Secretary Sebelius to reconsider the policy outlined by the Organ Procurement and Transplantation Network (OPTN). Naturally I realize policies are set up for certain reasons and the OPTN is to be commended for making it easier for adults in dire medical need to get a lung transplant, even if they were recently added to the transplant waiting list. Therefore transplant lungs are triaged to those adults with the most need. This rule however does not apply to children under 12! Last I checked 12 was still considered a child and minor in this Country, so where this arbitrary age of 12 came from is beyond me. But if a child is 12, he/she is put on the adult transplant list (perhaps the body is more mature and physically can handle an adult lung at 12 and above!). Certainly there are all sorts of ethical, political, and social issues associated with overturning this law for children under 12 years. I get it, but I also get that a parent's responsibility is to do everything possible to save his/her child's life. If that means turning to the media (which I am typically not a fan of!) and starting petitions, then that is what you do!
HHS Secretary Sebelius' Call for Review of Transplant Rules Means Girl Is 'Left to Die,' Family Says:
http://abcnews.go.com/Health/family-hhs-sebelius-intervene-10-year-olds-lung/story?id=19309530#.Ua9dkPnD_VJ
Sarah Murnaghan lung transplant case: Sebelius ordered to make exception on transplant:
http://www.politico.com/story/2013/06/sarah-murnaghan-lung-transplant-ruling-kathleen-sebelius-92299.html?hp=t1_3
PETITION...............OPTN/UNOS: Change Policy to Allow Pediatric Transplants of Adult Lungs Based on Medical Necessity:
http://www.change.org/petitions/optn-unos-change-policy-to-allow-pediatric-transplants-of-adult-lungs-based-on-medical-necessity
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