Sunday, September 24, 2017

Sunday, September 24, 2017

Tonight's picture was taken on October 10, 2009. The date of Mattie's funeral and celebration of life reception. We created two programs for that day. One for the church, and the one you see here for the celebration of life program. I can't take you how long these programs took to generate. Perhaps it was the finality of the content that had to be created or worse, why the programs needed to be created in the first place. 



Quote of the day: Without reflection, we go blindly on our way, creating more unintended consequences, and failing to achieve anything useful. ~ Margaret J. Wheatley


On occasion, I go back in time and read the blog from 2008 and 2009. Not that certain aspects of Mattie's treatment and death do not remain inside my head, they do, but the blog inserts real time facts! Facts that help to give context to my memories. For nine years I have written this blog daily. It is a large commitment but I feel fortunate that I stuck with it because it captures thoughts, feelings, and their specifics that I might have forgotten. 

Mattie died on September 8, 2009. However, given the nature of Mattie's battle and death, I was in no state to plan and host a funeral immediately thereafter. Given that we cremated Mattie, this enabled us to take a month and think through how we wanted Mattie to be remembered. It literally took us all that time too, since Mattie's funeral and celebration of life service were held on October 10, 2009. 

I can recall trying to plan the funeral at the church. Believe it or not, I actually yelled at the priest. I found him to be totally insensitive and I had to help him put his demands into context with our loss. Fortunately he wasn't the priest who presided over Mattie's funeral. Jim, the priest we selected to conduct the funeral is amazing. I met Jim at the George Washington University and I always credit him for giving me my first mental health client to counsel, as she was his parishioner. Jim gave Peter and me pre-cana, so that we could get married in the Catholic church, and he even baptized Mattie. So it seemed very fitting to ask Jim to do the impossible for us. Naturally he did a beautiful job, as hundreds of people attended Mattie's funeral. 

After the funeral, we held a celebration of life service at the Visitation School, only blocks away from the church. I will highlight this event in October, because I haven't done this for years. But 8 years ago today, you will see my reflections of the day below from the blog. It is hard to imagine this but shortly after Mattie died we left our home yet again. This time it was to live with my friend Ann. Ann's dad was dying and her husband was going out of town for two weeks because of work. She was going to have a hard time balancing three young children and her dad and mom. So literally Peter and I packed up (as we were excellent at that by then, because we constantly were shuttling back and forth between a hospital or home for over a year), and two weeks after Mattie died we moved into Ann's house for probably three weeks. At the time, we did not even think twice about doing this since Ann helped us significantly when Mattie was ill. We felt that it was our turn to help her, and of course we were skilled at this point in helping someone die. 

Can you just picture this? We operated on a 24 hour a day, 7 day a week schedule for 15 months. Caring for Mattie's every need and managing health care providers around the clock under the most dire of circumstances. It was very hard to come off of this daily crisis, to not having Mattie to take care of. All I know is back then after Mattie died, I needed little to no sleep, it did not matter whether I ate or not, and regardless of these conditions, I operated on 100% capacity. The body has a way of surviving actually on very little. Some people become stupefied without sleep, and I probably did in the beginning of Mattie's battle, but over time, my body and mind adapted to crisis mode. Which is most likely why I agreed to move into Ann's house and help with her father. I had excess energy, didn't need sleep, and I needed a purpose and mission. As I was very lost after Mattie died. My energy went from caring for Mattie in the hospital to now caring for an 80+ year old in a care facility. I practically lived in the nursing home, and some nights slept in their room. Meanwhile, while I was doing this, Peter was at Ann's house helping with kid duties...... school pick ups, school activities, helping with homework, laundry, errands, you name it! It was only after the fact, when I reflect back on all of this, and I realize my decisions weren't in Peter's best interests. Because early on after Mattie's death, Peter had trouble and almost felt great discomfort being around healthy children. I eventually got there, but that did not happen for me until a year or so after Mattie's death. 

Putting this more into context, Ann's parents lost their son to cancer. So in the midst of helping her parents, I also got to hear about their son, and their reflections on loss. I am not sure given their generation, that they verbalized loss like we do today, but yet given my loss, you would be amazed at what they were able to say to me. Mainly because I think they understood that I was in it and could understand. I always reflect back on this time that I helped Ann's father die, as being unusual. Perhaps my decision to step in and help may seem odd to my readers, but to me it made sense, and upon reflection (other than the ramifications on Peter), I would still have done the same thing today. Ann's parents gave me a reason to get up each day, to interact with the world outside of a hospital, and to invest in the lives of other people around me. I am not sure what would have happened without this! I learned in the end, after our many years together, that Ann's mom considered me "her angel" until the end. 
  

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From the Blog .....September 24, 2009:


Despite being away from our home, I had trouble falling asleep last night. I went to bed at 3am, and was up by 8am. I heard Ann’s children this morning, as they were getting ready for school. The sound of excited and energetic voices, quick movements, and simply put “life” fills Ann’s house. As I sat in bed listening to all of this, a wave of sadness hit me. My home is no longer like this, and won’t be like this ever again. Children have a way of breathing life and perspective into the darkest of circumstances. If you doubt this statement, then I invite you to spend some time at the Lombardi Pediatric Cancer Clinic. There you will see children daily who are fighting cancer, are exposed to toxic chemicals, and yet despite all of this, play, and engage with each other. It is almost as if the disease can’t hold back their inner joys and happiness.

Peter and I had a chance to work on some details for Mattie’s celebration of life ceremony and reception. It is very hard for Peter and I to even think this through, and I find I am putting a great deal of pressure on myself regarding this event. I feel as if this reception and ceremony are honoring Mattie and his incredible life, and therefore, they need to be something special. Is it possible to do Mattie justice during such an event? I don’t know, but when I am in a quandary over something, I sometimes become paralyzed and unable to move forward and plan appropriately. I worry that Mattie’s memory will be forgotten in the hearts and minds of those around him, once the funeral is over. In part, this could be why I am procrastinating with these plans, I don’t want him to be forgotten, and I most certainly am not ready to come to any sort of closure or acceptance of Mattie’s death.

I had lunch with Ann today in her parent’s room, as we were awaiting the arrival of a new bed for her dad. Exchanging medical equipment is NO easy task. In fact, we are still having a hard time getting the company in question to pick up Mattie’s oxygen tank and other supplies from our home. It is ironic the skills and insights I have picked up this year by caring for Mattie. Peter and I have been forever changed, and we just know how certain things operate, things, which require an inordinate amount of patience, patience that you DON’T have when you are tired, worn out physically and emotionally from caring for a loved one. When I was caring for Mattie, I was too absorbed in the daily grind to even be aware of the insensitivities of the health care system (though I did report MANY), but as I try to help Ann, I can see just how ludicrous all of this is. 

Tanja, Ann, and myself were quite a team today as we helped to switch Sully’s beds and reorganize the room a bit to accommodate this new addition. Tanja commented to me that my PICU training has come in handy. I think she is right. I have learned to organize things in VERY small spaces, and I can do it quickly. After all, Peter and I would move in and out of PICU rooms weekly. There was NO time to dilly dally around, and yet we wanted Mattie’s room to always look fun and alive. I am sure the PICU staff got a kick out of Peter and I with our movable boxes and bins of decorations. But it was what we needed to do to survive 13 months of torture. Nonetheless, when I sit back and evaluate things, I am left with the conclusion that Mattie taught Peter and I a great deal about medicine, nursing, health care, and advocacy. These are painful gifts, but gifts that enable us to work effectively with almost any health care worker and provider.

This afternoon, Mary and I had the opportunity to sit together and look at the wonderful 40th anniversary photo album that Ann created for her parents. When you can learn about someone’s past, and someone wants to share this with you, it is a very special and almost sacred time. Mary and I looked at her wedding pictures, as well, and she relived what that day was like for her. Mary’s 40th anniversary album was truly touching, and one thing I clearly saw jumping off the page was that these two people are very loved and have spent their life caring for others rather selflessly. In the album were messages from friends and family. One of the messages happened to be from Ann’s brother, who passed away. Mary had me read this message multiple times, and was deeply moved and happy to have his words on paper. Of course, based on my circumstances, I couldn’t help but imagine how powerful hearing your deceased son’s words are, and I wish Mattie had been old enough to actually write, so I could reflect on his writings.

This evening, Margaret (my friend and Mattie’s first preschool teacher) came by to say hello, and dropped off more goodies for us. Mary was hoping to see Margaret today as well, and I am happy Margaret could visit with Mary while she was having dinner. Eating alone is never a good feeling. As I sat with Sully today, I naturally can’t help but think about Mattie. I remember someone at Georgetown telling me that death is natural, but that there is nothing natural about watching the process of death. So true, and it seems to me, as you sit and watch someone die, you can’t help but be flooded with memories of that person’s vibrant life and wonder about your own life and its meaning.