Quote of the day: "In between goals is a thing called life that has to be lived and enjoyed." ~ Sid Caesar
I think Sid Caesar was absolutely correct. We live in a society that is so quick paced, technologically connected, and the mission is getting things done and accomplished as fast as possible. With all of this pressure, we forget to live and enjoy life. I know that Mattie's illness has allowed me to see the importance of reprioritizing things in my life. It is a shame that such a major wake up call is needed to see the importance of living life, and not to solely work through life to live.
Mattie was up frequently last night using the bathroom, but he had the chance to sleep in this morning. Whitney, one of Linda's former interns, contacted me yesterday and said she could work with Mattie today. Whitney has changed her Mattie days to wednesday, rather than mondays, when we are usually in the clinic and Mattie has access to Jenny and Jessie. Whitney's presence was very needed today. Mattie needs fresh blood to interact with, and he was always very fond of Whitney. Whitney has a special way about her. She has insights about illness that are important and give her a greater appreciation for working with Mattie. In addition, her gentle and energized demeanor is a good match for Mattie. Mattie was excited to see Whitney today! While Mattie was with Whitney, I suppose I could have sorted through Mattie's toys and books piling up all around me. But I did not feel like that. Instead, I e-mailed Ann and asked if she wanted to get together. Ann and I see each other on a regular basis, but when we are together we are usually focused on Mattie. So it was nice to have a minute to catch up with each other. Thank you Ann for lunch, tea, and for chatting. It was lovely to escape for a few hours and to see normalcy. I also want to thank the Keefe family for being our on call mid-day helper. We value this support. It was funny while I was driving in the car today, I turned on the radio, and heard advertisements for spring break vacations. It was a very unsettling feeling to hear this on the radio. First of which I can't believe we will be entering the spring season, mainly because the summer, fall, and winter were a blur to me. I feel like I have lost a part of my life, which I will never get back again, and while I was with Ann today, part of me felt like a zombie. But she brought me back to reality. Of course, hearing about spring break only further illustrates to me how different our world is now. Mattie is not a student, I am not an educator (who follows a semester schedule), and instead we are trapped in a bad pattern of going back and forth to a hospital with no break in sight. Sure you could say our break is when Mattie finishes chemotherapy in May or MTP in September, but I am very aware that this will never really be over for Mattie or us. This is a hard pill to swallow.
When I got back home today, Mattie and Whitney were having a great time together. Mattie was playing with Whitney in his room. He enjoyed showing his toys to her, and he pulled out thomas trains and tracks which I hadn't seen in ages. Seeing these trains sent me back to when he was a toddler. Reminiscing can be bittersweet. Whitney told me that Mattie was very active today, and she even snapped a picture of him dressed as a knight. Got to love it! I think the picture of Mattie and Whitney is also very sweet. It was wonderful to have Whitney around today, and it really helped to break up the long day.
After Whitney left, Mattie and I played a dog game. We hadn't played this game in a long time. He made up this game a while ago, in which he is the dog, and I am his owner. However, this dog talks. His story line is a little bit like the book series Martha Speaks. We had fun doing this for a while, and then we worked on a 300 piece puzzle. I purchased this puzzle for him at Target today, and the title of the puzzle is "The Happy Family." It features a mama duck and her ducklings. As soon as Mattie saw this puzzle, he said that this puzzle was like him and I and like our family. Mattie had a visit from JJ (our resident Jack Russell Terrier) this afternoon. JJ came by to enjoy a piece of pizza. Mattie loved seeing JJ demolish the pizza in seconds! Mattie and JJ have a lot in common with this respect.As the afternoon wore on though, I was wearing out, and still suffering a migraine headache. So I asked Peter if he could come home a little earlier tonight. Which he did. Around the time Peter came home though, Mattie started to develop a headache as well. He then fell asleep for about an hour, and then when he woke up he was hysterical. He was complaining of head pain, and there was no calming him down. I am hesitant to give him Tylenol unless the doctor thinks it is okay, so at 8pm, I paged the doctor. Dr. Gonzalez called back right away and she said if Mattie did not have a fever, he could take tylenol. When I got off the phone, Mattie proceeded to have a further meltdown. Both Peter and I are frayed at the edges, so Mattie's meltdown doesn't help our already fragile state. We both had to walk in the kitchen because we needed a time out to regroup. Mattie refused to take tylenol, yet has a bad headache. Finally we sat next to him and tried to reason this through with him, that he had to do something to make himself feel better, such as lie down, eat something, or take tylenol. He voted on the eating something. He ate a waffle but 30 minutes later vomitted it up. So we shall see what else happens this evening. He also needs a central line dressing change, and is refusing to do this. God, when will this become easier? The hospital questions why I don't change this thing every other day, I think they should see a day in my life. Changing the dressing is a major production, which stresses both Peter and I out beyond what is necessary. You would think Mattie would have gotten used to this over time, but he hasn't! In fact, he has become even more sensitive to be touched.
So it is 9pm, I am taking a break to finish writing the blog and eating dinner. We want to thank the Brandt family for a wonderful dinner from the Cheesecake Factory. We appreciate your support, and I of course appreciate the cheesecake! I hope this dinner break gives Peter and I the necessary perspective and energy to reason with Mattie in order to change that dressing. Mattie and I head back to the hospital at 11am tomorrow. We will start off in the clinic, where he will get a check up, have his vitals taken, and then will have the administration of MTP-PE. We will then be admitted to the hospital for a 48 hour infusion of Cisplatin and Doxorubicin. Why does it feel like we never left the hospital? Yet back we go because we know we have to!
I end tonight with two e-mails. The first one is from my friend, Charlie. Charlie wrote, "Thank goodness for the resiliency of children. I read the blog and all I could do was laugh. Not only did Mattie have a good day but reading about pooping animal medics made me smile too! And while the doctors and nurses don't actually come and poop on the floor, clearly what they bring often strikes Mattie as not much more appealing than poop so somehow that play is quite appropriate. Poop is more than physical-that's why we often refer to people who have a negative attitude with an adjective that refers to elimination functions. I think you and Mattie have run into more than your share of those over these eight months. Fortunately, the good staff outweighs the bad.As for the scan, I won't tell you not to worry but I will say do your best not to borrow trouble, there is always enough immediately available without mortgaging the future."
The second e-mail was sent to me by Rosalinda, my cousin and Godmother. Thanks Rosalinda for this meaningful story!
TWO GLASSES OF WINE
When things in your life seem almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar and the 2 glasses of wine...A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was. The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was. The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous 'yes.' The professor then produced two glasses of wine from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand. The students laughed. 'Now,' said the professor, as the laughter subsided, 'I want you to recognize that this jar represents your life. The golf balls are thei mportant things; your family, your children, your health, your friends, and your favorite passions; things that if everything else was lost and only they remained, your life would still be full.' The pebbles are the other things that matter like your job, your house , and your car. The sand is everything else; the small stuff.' If you put the sand into the jar first,' he continued, 'there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you. ''Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18. Do one more run down the ski slope. There will always be time to clean the house and fix the disposal. Take care of the golf balls first; the things that really matter. Set your priorities. The rest is just sand.' One of the students raised her hand and inquired what the wine represented. The professor smiled. 'I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of glasses of wine with a friend.'
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