Quote of the day: "The most important things in life aren't things." ~ Anthony D'Angelo
Hi everyone, it is Pete writing tonight's blog. Since I spent most of the day with Mattie starting Friday night, I am writing today to give Vicki a break. As yesterday's post indicated, I arrived at the Hospital Friday afternoon and met up with Vicki. After cajoling, arguing, and finally raising my voice, I eventually got Vicki moving to go home. She left around 6pm in the middle of a downpour, but I was happy she was heading home.
Mattie started experiencing more pain and was receiving some morphine when I suggested a deal. I had secured some new Legos (I know, shocker) and proposed to Mattie that if he took his two vitamin supplements tonight, then he could get a new (and awesome) Lego. Prior to Osteosarcoma, we didn't need to cut as many deals, but given the last 11 months of this horrible existence, we have to settle for getting results versus fixating on how the results are achieved.
Mattie and I began on a 1,600 piece Lego at 630pm, and we did not stop until 2:30am. Yes, that makes eight hours of Legoing. The outcome was a large semi truck (Big rig as Mattie calls it) car transporter along with two sports cars to ride in the transporter. Mattie was very proud of things and we just moved slowly and at his pace. Most times he wanted to fit the pieces and during the ones that were particularly hard to fit, I tried supporting Mattie verbally and focused on him feeling better about his abilities as well as having some confidence, pride and independence in what he was accomplishing. I really do think that Legos are a form of therapy for Mattie that he and I share. If anyone has ever played with Legos the toy is both a physical as well as a creative/intellectual experience. Snapping the pieces together helps strengthen Mattie's hands and arms and the the process of creating something is both stimulating as well as confidence building.
Left: Mattie with his car transporterSo, once we completed the Lego at 2:30am, Mattie reached over to the Call Button and hailed his nurse, Sarah Marshall, to come to the room. He wanted to show off his accomplishment, and I was all for this. Sarah Marshall was her usual sweet self, and "Ooo'd and Ahh'd" all over his truck. Mattie soaked it up like a dry sponge, which only encouraged his willingness to promote his new set-up. So, he dispatched Sarah Marshall to get all the PICU nurses to come to his room. So sure enough, at 3:00am in the morning, I had a room full of attentive nurses. Anyway, Mattie was the center of attention, and if any of you know Mattie, you know that he is in his element when this occurs. So, by the time we cleared the room (mind you there was standing room only), it was 3:30am and time for bed. I think Mattie was ready to power-off, so the transition to bed was fairly smooth.
It was a quiet night except for Mattie going to the bathroom every few hours (and of course me sleeping with one ear and one eye open for him) and the sun lighting up the room at 5:45am. I was absolutely exhausted. Between working 65+ hours during the week, going to the hospital each night to entertain, and then racing home only to get up at 5:30am the next morning to begin the vicious cycle all over again, I was spent and collapsed. I know I am not a prisoner in the PICU day-in and day-out like Vicki, but I share a special kind of challenge and fatigue trying to balance being functional and productive at work, and then reverting to being a supportive dad/husband of a child with cancer at night and on the weekends, and in the case of today, covering Mattie solely. It's just too much, and although it is not the stress that Vicki endures, it is needless to say debilitating, demoralizing, and detrimental. Like Vicki, I have very little left to give, and I am not sure where the strength comes from to go on each day.
It was a slow morning and I was only woken up a half-dozen times starting first at 8am by the resident asking me questions about Mattie's need for a platelet transfusion today, and then again at 8:10 by the cleaning service people, who didn't knock but just barged in and started wrestling with the trash cans and bags, making enough noise to incite a riot. Then is was the food service people who knocked frantically to deliver a tray of food that Mattie would never and will never eat. And the list goes on and on.
Around noon time, I woke up Mattie determined to both make him go to the bathroom and get his pre-meds on-board so we could get the platelet transfusion going. In retrospect I am not sure why I was pushing the timeline since Vicki had to both go attend a graduation party (that she very much wanted to attend), and had to go to lunch with her parents.
So upon waking Mattie up, in his stupor, he spotted another Lego I had gotten for him and he was instantly motivated. The afternoon consisted of pre-medications for his transfusions as well as bouts of fatigue. We got through each while turning towards the 1,000 plus piece lego and the building of this masterpiece. Mattie was basically ready for discharge around 3pm, but we spent the rest of the time waiting for the pick-up, building, talking about silly things and laughing a lot about the TV characters we were watching as well as silly things that have occurred in our lives.
So let me close and pass the post over to Vicki who wants to add her items to the posting.
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Tonight is Peter's posting, but I did want to include this one paragraph about my day! While Peter was at the hospital with Mattie, I went out to lunch with my parents. Later in the afternoon we headed to Ellen's (Charlotte's mom) house. Ellen's son, Tyler (who many of you may recall did a lot of fundraising activities for Mattie) graduated from high school, and we were thrilled to be included in today's celebration. Ellen and Jeff planned a beautiful party on their outdoor deck. It was a lovely spring day, and we had a great time mingling and chatting with Ellen's family and friends. It is funny how through Mattie's illness, people just seem to know who I am. I had the opportunity to talk with many SSSAS parents, and finally got to meet a SSSAS parent, Kathryn, who I have only chatted with through e-mail. It was nice to meet her personally to thank her for her support. Many of Ellen's neighbors are also SSSAS parents, and they are also major supporters of Mattie and my family. I can't thank them for all they have done for us this year, and I so appreciated their lovely feedback about the blog. I was having a very good time at the party, until I saw the children running around with each other and playing. You need to understand that this particular group of children were Mattie's closest kindergarten buddies, and as I was watching them playing, I felt that someone special was missing from this mix, Mattie! A deep sadness came over me, and ironically the same sadness came over Ellen at the same time. I started crying, but pulled myself together, because this was a happy day and it wasn't my intention to put a damper on it. As chemo has come to an end, I have much more time to see the aftermath of Mattie's treatment on our life. In particularly I clearly see just how disabled Mattie is and how he clearly can't play with his friends like he used to. Something else to adjust to, along with a host of so many issues. All of which need to take a number.
I would like to end tonight's posting with a message from Charlie. Charlie wrote, "I don't know how you manage to go on with virtually no sleep. Up all night with a child in pain is not something the bravest of us would want to face. I am glad you managed to sort out that Mattie's pain is physically driven rather than psychological (not that psychological pain is any less real to the sufferer) but in the long run I believe it is easier to deal with physically created pain. There is then no push from the medical staff to "adjust one's attitude and get over it" as I have often heard. The key is finding the right level of relief, a balance that is hard to strike. I loved the silkscreen artwork; it is so much you to take a simple (green) line and turn it into a whole, complete scene just as you do as an instructor, a mental health therapist and a mom. Truly a skill to be envied. Since you are "off" full time hospital duty for two days, please don't get overwhelmed with chores and get some much needed rest!"
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