Tonight's picture was taken in September of 2008. There was a lot going on in this photo! Mattie was in his second month of treatment, but it was before his first limb salvaging surgery. That day, Mattie's "girlfriend," Charlotte came to the hospital to visit.
On an aside, Mattie met Charlotte on his first day of kindergarten and the two of them instantly clicked. I really think they brought out the best in each other. I will never forget Charlotte telling me that she and Mattie were going to go to college together and be roommates. Or the time I was taking them in my car to a classmate's birthday party. Mattie took out a plastic ring he got at the dentist office for a good dental cleaning, and proceeded to give it to Charlotte. He told her, he was going to marry her some day. Of course Mattie never made it to first grade nor did he have the chance to go to college, but in a way, I think he packed in as much as he could in his seven years.
While on cancer treatment, Mattie had a host of moods. As adults, we could process these moods, but they were harder to understand if you were a child. At times, Mattie would lash out at Charlotte emotionally, but somehow Charlotte continued on and never stopped visiting. Truly what I learned about friendship from Mattie and his buddies that year, remains with me today. The afternoon pictured in this photo, Mattie and Charlotte were watching a Scooby Doo movie together. Pictured with Mattie and Charlotte was Tricia. Tricia was Mattie's favorite HEM/ONC nurse. She came into our lives during the first week of treatment (I will share that story below). But Tricia understood the importance of Mattie connecting with a friend and even though she was flushing out his IV lines, she made a point of doing it on the side and not interfering with their visit or view of the movie. Mattie has been gone from my life for 16 years now, but what hasn't changed is my connection with Tricia. She is a gift Mattie left behind for me.
Quote of the day: I don’t know what they are called, the spaces between seconds—but I think of you always in those intervals. ~ Salvador Plascencia
Today was a difficult day and it is 5pm now and the difficulties continue. What is today's issue.... constipation! Typically my dad has the opposite problem, but occasionally for no explanation or reason, he will get constipated. The combination of constipation and Alzheimer's disease is a nightmare. It borders on practically making me crazy. Why? Because my dad will moan constantly and get fixated on going to the bathroom. I can't tell you how many times we have gone back and forth to the bathroom today, with no success. In moments like these, all I can say is GOD GIVE ME STRENGTH. I have him on a regime of fiber pills and Senokot daily to try to prevent days like today, but what I have learned with caregiving is no day is ever the same and instead each day is a juggling act in some way. Nonetheless, I am absolutely exhausted and it is very hard on the mind and body to live the same day over and over again. It takes great inner strength, discipline, and determination on my part NOT to crack up or have a breakdown.
I honestly give nurses a lot of credit, because when they walk into a room..... they have NO IDEA what they are going to face on the other side. One afternoon, inside Mattie's room, sheer chaos was going on. He was angry, hostile, and screaming at me. He felt that it was my fault that he was in the hospital and that I was the one who wouldn't let him leave the hospital. It was so overwhelming, that he cornered me against the bathroom door of the room and was hitting and kicking me. Get the scene!? This is the scene that Tricia walked into! Now mind you Tricia did not know Mattie or me well at that point, since it was our first week in the hospital. It would have been more than understandable if Tricia decided to turn back around and leave the room until I got things under control. I believe a less seasoned nurse may have done just that! But Tricia did not leave. Instead, she was able to redirect Mattie away from me, to calm him down, and to explain that none of this was my fault. She then said that we were both exhausted and instead we should get some rest together. Tricia literally walked both me and Mattie to his hospital bed, got us into it, and tucked us both in. I am not sure what was more magical..... the fact that she was able to defuse a very volatile situation, or the fact that she read the situation correctly and understood that Mattie was simply upset, and that it was not a reflection on the loving bond we actually shared. All I know is tucking us in reset both of us emotionally and at the same time, it showed me immediately that Tricia was going to be a special force in our journey. Tricia is a seasoned nurse, who is not only competent and compassionate, but is warm, open, and a fierce advocate for her patients and families.
Here's another Tricia moment. After Mattie's first limb salvaging surgery, Mattie was besides himself in pain. The medical team was NOT managing it well and I conveyed this to his pediatric intensive care nurse. Instead of this nurse trying to be a part of the solution, she instead contacted Mattie's oncologist. This nurse called in Mattie's child life professional to sit with him in the room, and the nurse physically removed me from Mattie's room. Mind you while she removed me, Mattie was screaming for me and was very upset by what she was doing. So picture me, this nurse, and the oncologist in the middle of the pediatric intensive care unit hallway. This nurse proceeded to tell the oncologist (in the hallway for others to hear) that it was me who was the problem. That Mattie really did not have as much pain as was being reported, but instead, he was reacting to me, and therefore in her opinion, it was me who had to be removed from the room and the unit. Seriously the fact that I did not throttle that nurse there and then is remarkable! I expected Mattie's oncologist to back me up and to stand up to this nurse.... but he did not. He was weak and she bamboozled him. Thank GOD, Tricia was in the unit that day. She could hear the commotion and in Tricia style, she did not walk away from a problem.... she walked toward it! Tricia explained to the doctor that she had gotten to know me very well over the course of the last several months and she said the only reason Mattie was calm and well adjusted was because of ME! Within seconds she turned this chaos around, and in essence put this other nurse in her place. Which I assure you wasn't easy to do, as this other nurse was a big bully. But that is Tricia.... she stands up for the truth and advocates to the end for her patients and families. It was thanks to Tricia, that I returned to Mattie's room that day and even received an apology from Mattie's oncologist!
It is probably no wonder that on a different occasion, as Mattie was walking in the pediatric intensive care unit hallway, he screamed for Tricia. She came flying over thinking he had a medical issue. Why was he screaming? Why did he want her next to him? The answer is..... to literally say..... I LOVE YOU! All I can say is..... we all need a Tricia in our lives and I am thankful to this day, she remains a part of my life.
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