Tonight's picture was taken at Mattie's 7th birthday bug and reptile party. Mattie had a bee piñata, and as you can see he was holding the piñata once it came down and had its candy removed. Clearly he was very happy on that day, and I think his smile says it all! I will never forget when this piñata fell to the ground. Mattie naturally couldn't move around and collect candy, nor could he reach the ground. However, children were coming up to him making sure that he got the things we wanted from the bee. It was those simple and kind gestures that will always remain with me, because they made such a difference to Mattie!
Poem of the day: Looking back by Charlie Brown
People tell me looking back,
Isn't something I should do.
That I have to keep moving forward,
And get over the loss of you.
But I just can't do that.
It simply would be wrong,
To try to forget the details,
My feelings are so strong.
I know you don't like reading this,
I am not happy either.
But for me there is no forgetting,
And no way to take a "breather."
Those memories surround me,
They're with me all the time.
Both the good ones and the "bad,"
There's no reason, there's no rhyme.
When will I be ready to,
Move on and leave the past?
I don't know if I ever will,
Before I too, breathe my last.
This afternoon, Peter and I drove to Mattie's lower school campus. One of the things we decided to do to recognize Mattie's first year anniversary, is to place a handcrafted butterfly wind chime on Mattie's tree. This wind chime was hand made in the USA and is a soprano chime. Its sound is almost angelic, and I hope as the wind blows, and the chime dances, that those big and small on campus will absorb this sound, and maybe on occasion think of Mattie. When we got to Mattie's tree, Peter got his ladder out to place the chime, and I began weeding around the tree. The tree is growing beautifully and looks young and strong. It may be hard to see, but we tried to take a close up of the butterfly chime on the tree. The butterfly is attached to the tree, and the chimes are hanging down. We wanted to put the chimes high enough on the tree so that it wouldn't be too tempting to try to touch or pull down.
Peter and I do not have a grave site to visit, since Mattie's ashes are home with us, but somehow this young oak is a beautiful symbol of Mattie, and visiting this tree periodically is important to us. Since butterflies seem to remind me and connect me with Mattie, it seemed only fitting that a butterfly wind chime would be a meaningful addition to Mattie's tree.
Before we got back into the car today, I asked Peter if he would walk with me to find the kindergarten garden at Mattie's school. I remember Mattie telling me where it was, but unfortunately never actually went with him to see it. I finally put an end to that issue that has been bothering me for quite some time. I saw the plot of land the kindergarteners created and in a portion of it, wonderful and robust squash or pumpkin vines are growing. It was just lovely to see this garden, because this was something Mattie was so excited to participate in.
Peter and I spent the rest of the day at Ann's house. Mary, Ann's mom, came over today, and we all chatted for quite some time. Tanja, our friend and also Ann's neighbor, came over as well, and we had fun helping Tanja with the plans for her upcoming school event. Mary got into the process as well, and we all sat down and had tea together. There is something wonderful and peaceful about sitting down and having tea with friends. At dinner time we all sat outside on Ann's deck and it was wonderful to see Mary eating and taking in all of the conversation. Earlier in the evening Ann's children were showing Mary photos from their vacation. In one of the photos they were making smores. I happened to comment on the fact that I never made or ate a smore. That issue was put to bed tonight. After dinner, before my eyes, out came a smores kit. Katie and Michael (Ann's children) gave me a fondue looking fork, and I got to put a marshmallow on it and hold it over a sterno until it toasted. Then of course I followed their assembly instructions with graham crackers and chocolate. Mind you, Mary was sitting next to me through the entire process, and after I made my smore, I cut it in half and shared it with Mary. She and I both enjoyed it and we got a kick out of the process.
I have posted the blog from September 5, 2009 below. I recall this day quite well, because this is the day I realized or at least had frank conversations with Mattie's nurses that Mattie was indeed dying. Before then, I was under some grand delusion that all the fluid issues Mattie was experiencing were reversible. In addition, I think one thing is quite clear reading the postings from the week of Mattie's death..... Peter and I were working diligently up until the end fighting for Mattie. There were NO breaks, NO down time, death was NOT peaceful, and it took every ounce of energy we had to keep him comfortable and not in excruciating pain.
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September 5, 2009's Posting
Today was another challenging day, because it became clear to us that Mattie's body is shutting down, the cancer is taking over, and we most likely will not have Mattie in our lives for much longer. This was a realization that I wasn't prepared for today. In fact, at first this hit me like a ton of bricks, and there were moments this morning where I just sat, felt very depressed and cried.
Thank you Tamra for coming by this morning and dropping us off tea, coffee, and breakfast. You are just incredibly thoughtful and supportive of us, something we shall never forget.
Peter had the chance to talk to Dr. Shad, the director of the Pediatric Lombardi Center, and she told Peter that there is no certainty as to what will happen next in Mattie's condition. We all know his body continues to accumulate fluid in his stomach cavity, but what is causing this swelling? Well today we concluded that the fluid build up is due to disease progression and not because there is an imbalance in albumin (protein) in the body. Clearly we could do something about a protein imbalance, but there is nothing we can do about disease progression. Though we drained 1.5 liters of fluid from Mattie yesterday, we had to do another paracentesis tonight as well. Today's paracentesis removed 1.25 liters. This procedure was performed in Mattie's room and a catheter was also inserted in his abdomen in case pressure and fluid build up and need to be drained from his stomach tonight. On Sunday, Mattie is scheduled to have a drainage tube inserted into his stomach cavity, so that the fluid can naturally drain from the tube into a bag, without having to puncture his cavity with a needle each time. Despite taking out 1.25 liters, his stomach region still looks incredibly swollen. This worries me.
One thing is VERY clear, Mattie is no longer the same boy we brought to the hospital even a couple of days ago. Mattie is lifeless, sleeps most of the day, and when he is not sleeping, he is crying and screaming in pain. He NO LONGER plays, talks, and watches videos. He is clearly on the verge of joining another world, and we are unfortunately watching this and are unable to do a darn things about it. I had the opportunity to bump into Debbi (our sedation nurse angel) while I was walking around outside the hospital. I confronted Debbi today because I noticed yesterday after the paracentesis, she did not seem as elated as I was that 1.5 liters or fluid were removed from Mattie. I made a mental note of this, and I reflected on it for the rest of the night. Why did she react this way? Because Debbi is a major advocate of ours, if something was a good thing, she would have been celebrating with us, but she wasn't. I told Debbi that I know Mattie's body is shutting down and we talked about how Mattie is indeed dying, and is losing ground VERY quickly. In fact, we estimate that Mattie will be with us for perhaps a couple of weeks only.
Though Debbi doesn't work on Saturdays, she came by to visit with Mattie and also gave him her desk clock which has a mechanical swimming fish in it. Peter replaced the battery in Debbi's clock and Mattie is totally intrigued by the floating sea turtle that serves as the second hand on the clock! Thanks Debbi! After I spoke with Debbi, I realized my mission is not done for Mattie. So I pulled it together, because whatever energy I would be putting into being depressed and hysterical, I need to devote to managing Mattie's pain and advocating for him so that we are NOT prolonging death. This is definitely a new philosophy for us, because Peter and I in the past have consented to ALL sorts of treatment, blood transfusions, and testing. But now we have to think through every decision, and ask why we are electing to do something? Are we doing it for our own needs or are we doing things that are in Mattie's best interest, which means no invasive testing or treatments that will prolong his agony. I can assure you it is almost impossible to accept that we are now making decisions to end Mattie's life peacefully and quickly. In fact, tomorrow we have been asked to draft up some advanced directives for Mattie's care. Such things as do we give the hospital permission to use dialysis and breathing machines, to resuscitate Mattie if his breathing or heartbeat stops, and the administration of a tube feeding. Though we know what we have to do, it is hard to admit that we REFUSE all these options.
I am sure some of our readers are processing what is going on and you are asking yourself, why on earth do we want to spend our last remaining days with Mattie in the hospital? Well of course from our adult perspective dying in familiar surroundings seems peaceful, and the right thing to do! However, here is the thing. Mattie WANTS to be in the PICU. This is his decision. Peter and I took Mattie home on Wednesday, despite the fact that he did not want to leave the hospital. As you know on Thursday we had to readmit Mattie because of intense pain. When I did this, Mattie said, "I told you I did not want to go home. So we are not leaving the hospital until I am ready." Peter and I must respect Mattie's desire right now, despite our own needs or picture of what saying good-bye to him looks like. Of course being in the hospital is no picnic by any stretch of the imagination (living in any institution limits your freedoms), but I must remind you that we have lived in the PICU for 11 months, and in a way it has become a place we are familiar with and consider our medical home. None the less, it is VERY challenging living in a two by four of a room, and having to share a bathroom with another family during this highly stressful time.
Ann was following Mattie's progress today, and came by to visit me and support me through this emotionally challenging day. I appreciated her presence and fired so many thoughts at her, but she never skipped a beat. One of the many things I struggle with is what to do with Mattie's body, bury him or cremate him. Certainly neither are a pleasant thought, and I grew up in a traditional Catholic family, where wakes and burials were the norm. Yet, a part of me can't imagine burying Mattie. I guess for several reasons. The first is I want him physically closer to me, and second, if I bury him in a cemetery, I will feel very guilty if I do not visit him every day. How to come to peace with this decision is not an easy one for me. I also told Ann that I am particularly saddened by the fact that Peter, Mattie, and I never had some family time after treatment to just enjoy each other's company. We never got to fulfill a Make a Wish Foundation wish for Mattie either. I plan on letting the Lombardi Clinic social workers know that waiting to get a wish granted until treatment is over is a BAD idea, because with cancer you never know what tomorrow will hold. In addition, Mattie's disease progression has hit him hard. I am not sure what I thought preparing for death was going to look like, but I can tell you it is NOT a magical moment, where you intimately talk about life and your love for each other. I suppose this can happen with certain diseases, but with Mattie, he spends most of his time out of it with pain medications, and therefore Peter and I sit in silence in Mattie's room for most of our days. One or two days of this is hard, but day in and day out of this is heart breaking and unnatural. It kills the human spirit.
We want to thank the Pisano and Cruz families for the wonderful lunches you provided us! We are very grateful for your support!
Later in the afternoon, my parents came by to visit with us. My mom was in the hallway with me observing the paracentesis procedure being performed on Mattie. My parents also brought me some lotions and other things to help perk me up. Though my mom admits, there is no possible gift right now that will bring such happiness. It just doesn't exist, and she is correct! My mom can't get over the dramatic decline in Mattie in just three weeks. She has seen it unfold and it is hard to believe that three weeks ago, Mattie could leave the house, play, and talk with us.
We would like to thank the Brandt family for a wonderful dinner. We value their support. Tonight, Mattie woke up from his sedation from the paracentesis, and wanted to watch one of our favorite dog shows, "It is me of the dog." He can bearly keep his eyes open, and his speech is slurred, but he attempted to watch. As the evening progresses he continues to be in pain and anxious. But really is in and out of consciousness.
Tricia was Mattie's nurse today, and she worked extremely hard to support Mattie, as well as us. Tonight, Sarah Marshall is Mattie's nurse. Sarah Marshall was talking to Mattie and she told Mattie a story about how her brothers would sometimes pick on her when she was growing up. Mattie asked Sarah Marshall why they would do this to her, and that teasing her wasn't nice. Sarah Marshall agreed, and then Mattie took the conversation to the next level. He told us he can't walk or do anything for himself, so what would happen if someone picked on him!? We told him that wouldn't happen, and Sarah Marshall told him that this person would have to go through her first! He seemed happy with that response.
Please keep us in your thoughts and prayers. This is the toughest thing we have been asked to do this year, or perhaps the toughest thing in our lifetime. I appreciate all your e-mails of support, they truly make a big difference to my daily existence.
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I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I know this week is more difficult for you than most knowing you are coming up on the anniversary of Mattie's death so I am glad you are keeping busy. I am sure that it is difficult to go into any store that has toys or anything that would appeal to children as you spent so much time that year that Mattie was being treated for cancer trying to find rewards and diversions for him. I enjoyed reading about constructing the tent with Ellie and Gavin and the whole event had to be hilarious. The picture was really adorable. As I reread the posting from last year I could see the undercurrent of your realization that Mattie was not going to come home and how hard you were fighting that. It's even more clear this second time around that Mattie knew he was dying and needed to be in the hospital even though he hated being there. I know this time is very hard for you and so I am focused on you as I practice each day. I send you my strength and love. I hold you gently in my thoughts."
The second message is from my friend and colleague, Nancy. Nancy wrote, "I hadn't been able to give proper time to the blog for the last few days. I realize that it was an unexplained intervention as having read last night's and a part of Friday's, I was wiped out. My eyes kept tearing and I had to stop as I need to get ready to leave for a family celebration . The mind does allow us to put aside intense pain for a while, yet, if not resolved, the pain returns with a vengeance. Your description of the days last year are so vivid. Peter and you were just so on target as you wouldn't accept any procedure unless it felt justified. You were always Mattie's advocate. A VERY difficult job! Returning to mundane chores and situations are never the same after such an ordeal. I think the two of you have done a remarkable job just taking care of beginning the foundation and trying to maintain your lives without Mattie. This part of life is just not fair, when death takes one so young. Your speaking up to that couple was genuine and ,although, everyone does grieve in their own unique way, you deserved to be heard and honored too. G-d bless Tim for understanding and acknowledging you as he has these last few times. I got as far as Palen's picture and a bit of the story. Congratulations on the Foundation being selected as the recipient for any proceeds. As Charlie said, no matter what is awarded to the Foundation, it is spreading the word. That is important. As always, I send my love in all ways."
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