Friday, January 29, 2016

Friday, January 29, 2016

Tonight's picture was taken on February 2, 2009. Mattie was in the clinic at Georgetown University Hospital and on that day his art therapists were telling us that they were creating a welcome plaque for the inpatient pediatric units at the hospital. They thought it would be great to get actual hand prints from the children on this plaque. So they asked Mattie if he would provide his hand print. Mattie was LESS than interested. However, when I suggested he provide his foot print, he was ALL FOR IT! I snapped a photo of Jenny and Jessie painting his foot and the actual result is down below. This plaque remains on display at the hospital and every time I visit the inpatient units, I get to see Mattie's footprint! Since the inpatient unit was so special to Mattie, and was like our second home to us, I appreciate seeing a part of Mattie remaining at the hospital (even though most people do not know that this footprint belonged to Mattie).


Quote of the day: It is the capacity to feel consuming grief and pain and despair that also allows me to embrace love and joy and beauty with my whole heart. I must let it all in. ~ Anna White


Recently Peter and I were contacted by a doctoral student in California who is working on a degree in psychology. She is also a certified child life specialist with over 11 years in that field. We get many requests from students, asking for help finding subjects for their studies. I ALWAYS help them, because I remember those days when I too was struggling to find subjects for my dissertation. 

However, while reading this woman's study description, and learning that her focus was on remembrance items used by bereaved parents, I took personal notice. I felt her research questions APPLIED to us directly and that Peter and I would have a lot to say on the matter. So I wrote back to her and told her that I would publicize her study but that I also wanted to participate.

Last weekend, during the blizzard, Peter and I spoke to the researcher on the phone. She interviewed me for 90 minutes and then Peter for another 60 minutes. She wanted to know about Mattie before cancer, Mattie throughout his cancer battle, and then we discussed legacy items and what they meant to us.

Both Peter and I have real issues with the phrase LEGACY items. Why? Soon after Mattie died, we went to a conference in Baltimore. One of the sessions was conducted by social workers and they discussed the importance of legacy work with their child patients and families. In many cases, these social workers had an opportunity to talk with the child about his/her pending death and together created items to be remembered. These items could be the children's wishes, what they wanted their parents to do after they were gone, how they wanted to be remembered, etc. Needless to say with Mattie we hadn't stopped treatment long before we determined he was dying. There was NO TIME to discuss his death, much less process this news. Frankly though creating legacy items may work for some children and families, I do not think it does for everyone. After hearing this conference presentation, we both left feeling very GUILTY. That we hadn't given Mattie a voice and that we did not work harder to secure his wishes. It was truly a conference session that put us in a funk and even to this day the notion of legacy items still makes us uneasy. It evokes that conference, the feeling we left with, and of course the reminder of what we did not do.  

This researcher understood our feelings, but what intrigued me was her study focused on legacy items we had..... hand and foot prints. She was particularly interested in hand/foot prints created as Mattie was dying. Yet as we talked for 90 minutes, a lot was revealed. Things I may have understood on a subconscious level, but had never had the opportunity to express to someone. 

When she asked about hand/foot prints created while Mattie was dying, I immediately thought of the RED BOXES underneath our dining room breakfront. What is in these boxes? The hand and foot prints created two hours after Mattie died, in his PICU room. I remember Mattie's child life specialist and art therapist placing Mattie's hands and feet in these clay blocks, but honestly I do not remember how they introduced this notion to me. The researcher wanted to know if they had a talk with us about legacy items and whether we desired to create these prints. I truthfully do not remember having such a conversation. Just that the prints happened. I believe this was probably the case because I had expressed to these women in passing that I was saddened that I never created a hand/foot print with Mattie when he was alive. So I really believe this was their reaction to my sentiments expressed on a different occasion. 

But the question maybe..... why are the prints in boxes and NOT displayed? My answer to such a question is that seeing these prints would not bring me joy or comfortable but instead great sadness. They were taken after watching Mattie go through five hours of torture before dying. There was not enough pain medication in the world to relieve Mattie's pain and he was basically drowning in his own fluids. Which was frightening to watch and hear! Mattie had trouble dying and the only way he finally did die was he was put into a coma with propofol and we sat with him while he flat lined. It was awful and therefore these prints remind me of that night/morning. Yet I can't throw the prints away. It gives me some sort of peace knowing they are there and we did them, but I don't want to see them. 

Then we have this hand print which is on display in our living room. This print was taken by a friend of mine the night before Mattie died. Mattie was not cognitively aware of the fact that this print was being taken of him. My friend did the print and Peter and I watched. The researcher asked me how I felt about this print and my reaction, which surprised me was.... NOT good. I do have it on display because my friend and Mattie's art teacher worked hard (to clean it up and paint it) on it. But honestly it too reminds me of a painful scene and it isn't a meaningful  representation of Mattie because he wasn't actively engaged in its production. Part of the joy I had while Mattie was at the hospital was that I could SEE him create things. I could hear his discussion about his projects and observed how he played with them. This wasn't the case with this hand print, and in a way the true spirit of Mattie is not reflected in this piece. 

So I tried to encourage the researcher to understand that legacy pieces really need to be made when the child is battling cancer and BEFORE one learns of the terminal status. Pieces that Mattie made during his cancer battle, I happen to LOVE! They remind me of him and they are items I do reflect on. ALL HIS ART PIECES are Mattie's true legacy. 

This hand and foot print, I absolutely forgot about, until Peter mentioned them to me. Naturally I see them everyday, since they sit on an Italian music box that houses Mattie's ashes. Yet when the researcher asked me about his hand and foot prints, these models did not come to mind. Even worse I can't remember when or how we created these items together! 

Lastly we have this footprint. I described this plaque in the beginning of tonight's blog. Seeing this footprint does make me smile, and I believe it does because of how it was created. I can picture that moment in the clinic and the fun Mattie was having as his foot was being painted. That fun, laughter, and spirit was Mattie. 

I realize we were helping this researcher obtain data for her study, but I found it helpful too. Mainly because it is rare to have someone just talk about Mattie, our feelings around his death and the objects that surround us. It wasn't like I did not know how I felt, but it was good to verbalize them and to be able to use our insights to help future families. The one thing Peter and I both mentioned in our conversations (and mind you we did not chat with each other about our thoughts prior to the call) is that psychosocial professionals need to alert parents who just lost a child that how they feel at that exact moment may not be how they feel months or years from now with regard to creating a hand/foot print. I don't particularly find the hand/foot print helpful, yet I am glad I have it because I can't say it wasn't done. I may not have been able to say that years ago, but I can say that now. So talking about time and legacy items with family members is crucial and our second point was it matters WHO has this legacy item conversation with family members. It can't be someone on the periphery of care, but instead a professional who was very involved with the child and family, and who is trusted.