Friday, July 10, 2009

Friday, July 10, 2009

Quote of the day: "Kindness is more important than wisdom, and the recognition of this is the beginning of wisdom.” ~ Theodore Isaac Rubin

Before Mattie woke up this morning, our in home medical supplier delivered me a lightweight wheelchair. This delivery was an absolute riot, because this new chair was as heavy as the current chair. So I refused to accept the chair, and contacted Catherine, our case manager at the hospital. To cut to the chase, insurance doesn't cover transport wheelchairs, which is really what I need because of its very lightweight nature. So I did some searching around on the internet today, and purchased a transport wheelchair that is only 14 pounds. I am hoping this makes things a lot easier for us.

Mattie and I had a FULL day of playing together. We did a lot of trains, legos, and pretend play. However, several hours of play can be very tiring, on top of my already tired state. Typically Dan, a Georgetown University student, helps me on Fridays, but Peter and I were going to go out to dinner with Ann and Dr. Bob tonight, and we asked Dan to watch the kids this evening instead. As the afternoon rolled by and it was getting closer to the time for Mattie to leave for Ann's house, he had an absolute meltdown. He said he was in pain, he was nauseous, and did not want to leave or be without me. I tried rationalizing with Mattie, gave him some pain medication, and his anti-emetic and told him he would feel better soon. However, that moment did not present itself. The more I tried to help him work this through, the more upset he got. He made things so unpleasant that I figured there was no way I could possibly leave him with a sitter. So I called Dan and cancelled his visit, and then called Ann and told her we weren't going to get together. Ann could tell I was upset and at my wits end, and the thing that really bothered me was that Mattie did not want to leave the house because he said I did not spend enough time with him today. Mind you we were together solidly for the whole day, as we are everyday. So I clearly felt like he was manipulating me and the situation, and using pain as the excuse and the controlling factor. It is becoming very apparent that we need to take back control of our lives in our home. For the past 12 months, certainly we have been Mattie's parents in theory, but because of the circumstances we had to be around the clock caregivers and playmates. This is different from being his parent in many ways, or let's put it this way, it makes it very challenging parenting a child with a life threatening illness who spends more time living in a PICU than at home. So as a result the aftermath of this illness is a balance of power that is skewed in our home, and now we are having a meeting of the minds with Mattie as we take back control over our lives and our family. This transition isn't going to be a smooth one, and today was a perfect example. However, it isn't good for Mattie to isolate himself or me, and in many ways, I have to find my former parenting skills that I hung up on a coat rack 12 months ago and start applying them again. I am not saying that we provided no discipline or structure in his life this year, on the contrary I think we did the best we could under the circumstances.

I made it very clear to Mattie that his decisions have consequences, that by not going to Ann's this impacted other people's lives. I told him I was disappointed in his decision, because it was an opportunity to spend time with his friend, and also an opportunity for me to do something that involved getting out of the house. I let him sit with that for a while and about 30 minutes later, he decided to go to Ann's house on the condition that Peter or I stayed with him. So despite Peter looking forward to going out with us, he stayed behind at Ann's house, and I went out with Ann and another RCC mom and friend, Karen. I viewed tonight as a mental health break, because I couldn't spend another minute trapped at home. We had a lovely dinner out (thank you Ann!), but as usual, though not my intention, I feel like I have a way of dragging down a conversation. Ann and Karen tried very hard to help find solutions to certain issues Peter and I are contending with now, but like I told them, sometimes things can be so challenging and overwhelming, that I can't even conceive of a solution or action to lighten our tasks. None the less talking through the stresses and being heard for me are powerful gifts and help me process my thoughts and feelings. A typical day for me means that I rarely have a meaningful adult conversation or have the ability to express how I am feeling, so tonight was a very special moment. Tonight did show me though how pervasive Mattie's illness is in my life, and when Ann asked me what would be something fun for my family to do together, and I couldn't answer her, which was enlightening to me.

When we got back to Ann's house after dinner, it was late, and only Mattie, Abigail, JP (Ann's cousin), and Peter were up. In the car ride home, I asked Mattie if he had a good time. Mattie started to tell me that he did not have a good time at all, but then Peter stopped him. Peter told me that Mattie did indeed have a good time, was animated, and ate well (we want to thank the Peterson family for the dinner they provided all the kids tonight, thank you for your continued support!). However, this is not the picture Mattie was trying to portray to me. So part of me feels as if Mattie was trying to make me feel guilty for going out and leaving him for so long (as he did mention to me!), because from Peter's assessment, Mattie was doing great the whole time. Many of my issues revolve around how long I will have Mattie in my life, and this fear drives many of my choices and actions. So I land up feeling guilty if I miss a minute with him, however, I am also very aware of the fact that I am exhausted physically and mentally, and I have to let this guilt and other stuff go, in order to focus on my own recovery from this nightmare. It is now 2:30am, and I have no idea if what I am writing is even coherent, but hopefully you get the picture of what our day was like.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thursday was certainly a day of ups and downs. I simply do not understand medical professionals who have no connection or understanding of the patients they are working with. The cardiologist was incredibly insensitive and obtuse with regard to Mattie and his situation. Maybe after the confrontation with you she will be a little more respectful of her patients' needs. One can only hope. I am sure it was difficult to focus on what she said during the conference with Mattie in the room. It is hard to know what he absorbed of that conversation but you need to be prepared for Mattie to raise some issue with it at a later time. As for the comments of the other osteosarcoma mom, well, I am sure that what she said goes through the mind of every parent who has a child in a life threatening situation. Whether one opens up that conversation with another parent is a different thing altogether. Every parent's beliefs are their own, each child's situation is different and expecting some sort of consensus on an intensely personal topic like that just isn't possible. In fact, most parents' opinions will change day to day or even more frequently depending on what is happening at the time. As Dr Snyder said, no one can (or should) judge your decisions. Only you and Peter know what is right for you and for Mattie. And on the positive note, I was delighted to see Mattie working so hard at therapy. It looks like a good motivational process is in place; I hope it continues at a good pace."