Mattie woke up this morning very edgy. Not very surprising I guess after being cooped up in the hospital since Thursday, and feeling crummy for days. Nonetheless, Peter and I feel like we are living out the movie, "Groundhog Day." Mattie wakes up every morning at 4am, as bright eyed as a full moon. If you haven’t seen Groundhog Day, it is worth renting it because it speaks to how we sometimes all feel about life. We get stuck in a pattern, a rut if you will. However, our challenge in life is how to break free of this daily routine. The routine can make us dull, disinterested, and unappreciative of things we have in our life. I am very motivated to break out of this 4am rising pattern. Though this morning, the reason for Mattie’s early rising was a nurse tech who wanted to take Mattie's blood pressure and temperature. When in the hospital, techs come in at midnight, 4am, and then 8am to take vitals. But there was something about this tech that rubbed both Mattie and I the wrong way this morning. Maybe because she did not want to do her job, but wanted me to do it for her. She watched me as I took his temperature and blood pressure. Nothing any more really surprises me, but I can tell you one thing… you don’t want to tick me off at 4am. After observing the tech, I then spoke to the nurse at 4:45am, and now plan on writing a letter to the nursing supervisor. Again, this brings me back to my point a couple of blogs ago, children desperately need advocates in the hospital. This tech visibly upset Mattie, and it took me two hours to get him back to sleep.
With each day, both Peter and I find ourselves getting more and more tired. It is a physical and mental exhaustion unlike none other that either of us have experienced. I realize Peter is right though, I have to take some time off from the hospital now and then, which is not something a mother can easily do or accept. Reflecting today on our situation, I came to the simple conclusion that Mattie isn’t the only one fighting bone cancer. In fact, as his mother, you might as well have diagnosed me and Peter with bone cancer too, because in many ways what impacts Mattie, directly impacts me and Peter. I may not be getting chemo infused into my body literally, but figuratively it feels this way. As a parent, you deeply feel when your child is upset or in pain. Sometimes in fact this hurt is worse than if it were happening to you. I find myself very teary today, which is not typical for me. I am usually rather composed, but with being more tired, and having to manage Mattie’s roller coaster of emotions, it most certainly takes its toll out on Peter and I.
I would like to tell you about three very meaningful moments in our day today. I opened up my e-mail this morning, and I received an e-mail from Guillermo Delgado, who is the regional director of Latin America Voxiva (Peter’s company), based in Lima, Peru. Guillermo has been following Mattie’s progress from Peru and about a week ago sent Mattie a beautiful model toy sports car (something Mattie is very fond of). In Guillermo’s e-mail today, he mentioned that he is also a musician and songwriter, and he is part of a popular group in Peru called, “The Apple Band Project.” Well “The Apple Band Project,” is going to be releasing its newest song entitled, “My Little Child,” inspired by Guillermo’s 4 year old daughter, Camila. Guillermo attached a sound bite of the song for me to hear. Because he is trying to release it soon, I do not want to attach it to the blog. But one of the lines in the song is, “When I tuck you in at night, and kiss your check and dim the lights, I may see the peace reflected on your face, but then I watch the evening news, full of poverty, crime, and abuse, and I want to ward you off from the disgrace. My little child, I will fight just to give you a world that is fine.”
The song hits home for any parent facing our world today. We as parents worry about what the future will be like for our children. We worry about their safety and happiness, and this song reflects upon the beautiful and peaceful moment we all have in our lives at the end of the day when we watch our children sleeping. In a way they look like angels when they sleep, don’t they? The song brought tears to my eyes because it is so universal, we all can relate to it on so many levels. Guillermo is very concerned about Mattie and wants to raise funds for him. He has graciously offered the following fundraising idea: all the digital sales of the song (downloads) will go to Mattie's fund plus 3% of the sales from physical CDs. Guillermo and his group typically donate their proceeds to a particular cause (such as Unicef and victims of the earthquake in Lima), but now the group decided they want to focus on Mattie. All I can say is what a wonderful way to start off a Sunday morning. This level of generosity, care, and concern moves me in ways that are indescribable. Thank you Guillermo and “The Apple Project.” Guillermo, I played the song to Mattie tonight, and he loved it so much, we listened to it numerous times. He even was dancing to it. After Mattie’s awful day, this was like music therapy! See the pictures below. If you have other albums, please send them to us.
Mid-morning, we had a knock on our door, and in came Olivia Kane. Olivia is a SSSAS parent who I have had the opportunity of volunteering with at SSSAS. Olivia brought Mattie some adorable mini remote control cars that were a big hit. So much so that Mattie built his own racetrack and tunnel in our room for the cars. While Mattie was playing, Olivia and I had an opportunity to chat. She told me that 25 sisters from the Visitation school were praying on a daily basis for Mattie. I was very happy to hear this, because I believe that medicine can only accomplish so much, the rest in part is due to divine intervention. Olivia then started talking with me about our blog, and how she could relate to many of the things I was voicing and sharing, since as moms we naturally share a lot in common. But Olivia shared a bigger gift with me today, one that she may not even be aware of. Olivia said that I have an incredible network and community of friends, which speak volumes about me. She also said that due to Mattie’s illness these sub-communities of people (who may not even have known each other prior to Mattie’s illness) are working together, people are becoming friends, and in the process people are letting their guards down and sharing more about themselves, and in a way are allowing themselves to be more vulnerable, open, and honest with each other. I have to say, if I accomplish nothing more in my mental health career, then I would say I was very successful. Olivia brought tears to my eyes because what a sheer joy it is to hear that others are connecting, working together, and allowing themselves to be real (which can be frightening, yet courageous) with each other. Life is too short to be hiding behind facades in fear that others will judge or evaluate us in a certain way. There aren’t many positives I see from Mattie’s diagnosis, but if such a diagnosis makes others in our lives stop and pause and re-evaluate priorities and how they relate to each other, then to me Mattie’s illness is teaching us all a very powerful life lesson. Thank you Olivia, you lifted up my spirits today and I hope you do connect with Jim G. for us. Thanks for the tasty pumpkin bread too! You gave me food for the body and spirit.
At around 11:30am, Mattie had a special visit from Bob Weiman, or who we affectionately call the “Magic Man.” Bob is the head of Mattie’s lower school, and holds a vital leadership position at SSSAS. However, if you could have seen Bob today, you would have observed that he checked his title at the door, and in walked in a fellow parent, a magician, and someone who was there to help raise Mattie’s spirits, and accepted Mattie despite his sassy and grumpy attitude today. In fact, I even apologized to Bob because Mattie wasn’t behaving very nicely, and at one point in the visit Mattie used one of my LEAST favorite words, when he said he was “bored.” But Bob told me there was nothing to apologize for, and that he understood how Mattie was feeling today. Bob taught Mattie two great new tricks today. One was a scarf trick and the other was a ring trick. We have had the wonderful opportunity to get to know Bob on a personal level, and we learned that he performed this same ring trick for his wife, Sylvia, when he proposed to her. So Peter and I felt like we learned a special trick today, which also meant something significant to Bob. Bob is probably observing too that Peter and I love learning the magic too! Thank you for sharing your morning with us and for telling Mattie that when he is ready he is always welcome at SSSAS. Below is a picture of Bob with Mattie, doing the famous engagement ring trick.
This afternoon, Peter sent me outside to get some fresh air. I was enjoying the sunshine and composing this blog in peace. Then about an hour later, I got a urgent call from Peter. I could hear Mattie screaming out of control in the background. So I packed up my computer, said goodbye to the sunshine, and ran back upstairs. In our room, I found Peter, Mattie, the head of the PICU, and Dr. Shad. Like Mattie’s episode on Friday, we had a similar one this afternoon. He was crying hysterically, rocking, and you couldn’t rationalize with him. There was no punching or hitting though. The unsettling part was there was NO drug interaction to explain this like Friday. So I quickly deduced that either Mattie is dealing with anxiety (which I am not fully buying yet) or that while he was playing on the floor of his room, he twisted his leg the wrong way, and was in terrible pain. My hunch is the latter, but nonetheless, I told Dr. Shad, I was concerned about such a reaction when we are at home, and do not have a medical staff behind me. So she is sending us home with Ativan, just in case. The funny part is I always feel tentative about leaving the room, and today confirmed my fears.
Lorraine, our family friend, came to visit this afternoon while Mattie was having one of these episodes. She changed his mood quickly by showing him a birdhouse she bought him. He was excited because he got to paint it. Thank you Lorraine for coming at just the right time! We also want to thank the Fergusson’s for dinner tonight. The homemade crabcakes and corn salsa were outstanding and Mattie loved the cheese pretzel!
Finally, on the electronic front, thank you Rebecca, Alex, and Barbsie for your e-mails, and Karen, Linda, and Kim for your wonderful e-cards. Thank you Coach Dave for your e-mail as well. Mattie learned today that when the Saints won their football game this weekend that at the end of the game, the team stood up, put their hands together, and on the count to three yelled “Mattie.” Coach Dave said it could be heard all over the stadium. Thanks Dave!
As I sign off, it is 10:15pm, and Mattie appears to be limping on his right leg tonight and may need an x-ray of it tomorrow. His mood has plummeted and at times he lashes out at Peter and I. There are times I feel like we are dealing with two-year-old behavior again. No words, just actions. God give us strength, because this is a test of even the strongest of spirits.
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