Quote of the day: “The greatest treasures are those invisible to the eye but found by the heart.” ~ Anonymous
Mattie and I finally fell asleep at 1am. I was so tired and wiped out from having a migraine, that I literally instantly fell into a deep sleep as soon as my head hit the pillow. But at 2am, I heard Mattie calling for me. I was actually disoriented, and it took me a while to realize he needed help going to the bathroom. However, after I helped him, I couldn't go back to sleep. My head was pounding, and for my readers who are migraine sufferers you know that such intense headaches can also bring about nausea. Needless to say, I did not get back to sleep until after 4am. When I woke up this morning, I felt like the walking wounded. To function was not only tiring but depressing. Depressing because my days are always the same. Playing, meeting Mattie's caregiving needs, and driving back and forth to the hospital. This is not only taxing on the body, but taxing on the spirit as well!
Mattie actually slept in this morning. Not only was he up several times during the night to use the bathroom, but he was also restless. I got up before Mattie because this is the only time during the day that I can get something done. During this time Ann called me. Ann always seems to know when I have hit the end of my rope, and we talked a while this morning about what can be done to lighten my daily load with Mattie. I am not sure what Peter and I did to deserve an amazing Team Mattie coordinator and friend like Ann, but in the midst of everything else we appear to be losing, we Thank God for this blessing.
Mattie had his appointment with Dr. Biel, his psychiatrist today. Dr. Biel and Mattie have a very good rapport, and Mattie actually looks forward to his sessions. Mattie's sessions are about 30 minutes, which gives me just enough time to eat something for lunch. But I constantly live my life running from one task or activity to another. Which anyone can manage for a month or two, but I have been at this for 12 months straight with no end in sight. After his therapy session, I gave Mattie some options of things to do, rather than returning home directly. However, Mattie wanted to go straight home without stopping anywhere.
Mattie and I spent the afternoon at home, playing. But at a certain point, I couldn't function. I was exhausted and still had a migraine. So I went to lie down for 30 minutes or so. Despite lying down, Mattie did not give me much peace. So it was a long afternoon to say the least. Peter came home early from work and we packed up and headed on the road to Wolftrap (a National Park for performing arts). Mattie appeared excited to hear the music of ABBA, but I have learned with Mattie, his moods are like the weather, they change very easily. We met Ann's family at Wolftrap, and we all had a wonderful picnic together, thanks to Ann's planning and generosity, and we sat outside and chatted. Mattie and Abigail were eager to continue the goldfish soup concoction they started when Mattie was a patient in the PICU. Some of you may recall the night in the PICU where Mattie and Abigail were exploring the properties of goldfish, cherries, and other objects when placed in water. The fun continued tonight, and Michael (Ann's son) also assisted with the project. Needless to say, by the time they finished, they created something that looked and SMELLED down right awful! We snapped some pictures of the fun taking place all around us this evening.
Left: Michael, Mattie, and Abigail
Right: Abigail and Michael brainstorming what else to throw in this goldfish soup concoction! I felt very sorry for the Ziploc!
Left: After the picnic, Mattie and Abigail, decided to kick back and throw their feet up on a very cozy foot rest, Michael. Michael was a good sport about all of this.
Right: Mattie, Vicki, and Abigail.
Left: A picture with all the kids! From left to right is Lexi (Katie's friend), Katie, Mattie, Michael, and Abigail.
The concert was a lot of fun. The music of ABBA was performed by a group that literally impersonated ABBA. Of course it did not sound exactly like ABBA, but it was pretty close, and definitely there was a great deal of energy in the audience. It is hard not to want to move your body and dance when you hear ABBA's music. I grew up listening to ABBA, and though that brings back good memories, the memories that will ALWAYS remain with me, will be that of the PICU. Mattie did more physical therapy in the PICU to ABBA than I can remember. In fact, I remember one day walking around the entire fifth floor of the hospital entertaining others, while Mattie was learning to walk. Brandon, Mattie's buddy, was with us, and we have converted him into an ABBA fan too! ABBA will always remind me of this time in our lives, the friendship of the HEM/ONC nurses, Linda, Meg (Linda's intern), Anna, and Brandon. It is funny how music can stir up emotions for a person. It is also ironic that I told Ann just this morning that nothing really brings me much happiness anymore. Though this statement is pretty accurate, I can say after tonight, that music still has a way of getting to me. Making me feel lighter, better, and happier. I have always felt this way about music and dance, they breath life within one's spirit, and for just that moment in time they can transport you to a simpler and peaceful place. Despite trying to enjoy the concert and the energy around me, Mattie's mood has a way of changing my perspective. At one point Mattie was crying and he wanted to leave, but I helped him pull out of it and he did stay until the end. However, in the car ride home, he told me he wasn't happy and wanted to leave the concert earlier. I must have let out with a huge sigh, and Mattie instantly knew I wasn't happy with his commentary. He then apologized because he was giving me a lecture about taking him to things he doesn't want to do. I corrected him and told him he agreed to do this, and that ABBA music means something to him as well. Even if it did not, which it does, I told him that sometimes as a member of a family he has to do things others want to do. These are life lessons that have been placed on hold for a year now, but coming back into reality and living as a family unit will require a great deal of adjustment on Mattie's behalf. I shouldn't let Mattie's moods ruin or cloud things for me, but unfortunately I am human and I can't help but get drawn into the drama he creates. Peter and I do correct the drama and insert more structure, but we are TIRED, which makes the multiple roles we need to serve in any given day very challenging.
I would like to end tonight's posting with a message from my friend, Charlie, and then I would like to tell you about a special 12-year-old named, Sammie, and share a video about her. Charlie wrote, "I continue to be amazed at the lack of social skills in people. I don't believe they intend to be mean or uncaring but they simply don't know what to do. They have the same reaction to a child in a wheelchair as many do to an accident on the side of the road; they rubberneck without realizing how hurtful that behavior can be. I like Emma's mom's solution, smile at them and see what happens. I think that turns you and Mattie into "real" people that they can respond to. I know you don't have a lot of emotional energy but if it stops a majority of the staring and you don't have to defend Mattie from the stares and his own interpretation of them, it might be worth it. It is an education process for the public. Your story about Mattie's soup made me smile; it reminded me of the story of "stone soup" although that had a more positive ending than making soup that tastes bad and getting fired as a result. I love Mattie's sense of humor and that is a tremendous strength that will help him weather the process of healing. I hope Tues goes well at the hospital and that you all enjoy the Abba concert on Tuesday night at Wolftrap."
I learned about Sammie, a 12-year-old girl with Osteosarcoma, from Kristi's caring bridge website. Kristi is a mom of a 15-year-old son, David, with Osteosarcoma. One night many months ago, I decided to visit Sammie's website. Sammie lives in California and has been fighting Osteosarcoma for three years now. Sammie has lived anything but a normal teenage life, and unfortunately despite her amazing efforts of heroism, the disease is taking over her body and she currently is going through hospice. Sammie's parents are watching their daughter dying before them, a little each day. When Mattie initially began treatments, I couldn't connect AT ALL to other Osteosarcoma families. Maybe because I couldn't accept the fact that this could possibly be my life. But as the year went by, I started to select certain caringbridge sites to follow. I literally only follow three, because I can only absorb so much sadness each day. None the less, Sammie and her mom, Chris, are amazing women to me. Chris shares her strength and courage with us on a regular basis. How do you say good-bye to your daughter? How do you give her the courage to accept death, and to allow her to talk about these frightening thoughts, and yet not show her that inside your heart is breaking without any idea how to live your life when she no longer can live hers? Chris explores all these questions. Yesterday I went onto Sammie's site and her Team Sammie developed a video about Sammie's life. The video is 14 minutes long, and I asked Chris if it was okay for me to post it on Mattie's site. Please take the time to see this extraordinary young lady, and hear about her life, and how she is educating others about this horrific disease. I also included a link to Sammie's website, in case you wanted to learn more about her. As always our deep thoughts and prayers go out to Sammie and her family. Team Mattie is an incredible network of people, and I encourage you to stop and reflect a minute on Sammie and all the other children out there with Osteosarcoma. Dear God give them and us your strength and courage to fight this disease, and in Sammie's case, please allow her the chance to die in dignity surrounded by those she loves.
Team Sammie Video
2 comments:
I love seeing the pictures of Mattie at the concert. He looks happy to be out and just be a kid. My daughter Hailey was there tonight too. I wish she knew you and was able to come over and say Hi. Music definitely soothes the soul. I couldn't live without it.
Hugs, Donna
Hey Vicki,
I so know what you mean about the way your own fatigue can totally limit your ability to function and think in the way that you know you should be and need to be able to do. With Mattie being so young and trying to deal with this monster disease, he needs the constant attention from his parents that an infant would, and I think all of us parents remember those days of incoherence from lack of sleep that attend our days when caring for a newborn. The extra stress from dealing with not only the physical needs of your child, but the emotional traumas of all involved in this battle, results in a bone deep feeling of utter fatigue and despair that would overwhelm the strongest person. I am sending positive thoughts and prayers your way for extra strength to deal with it all. My son, Keaton was looking at the pictures of Mattie on this blog, and commented on how cute Mattie was, and then said, "Now, that is really unfair for such a cute little boy to get this so young, and I bet he doesn't understand why he can't run around like he used to, and have all these bad treatments." He said to tell him to be tough, and it will all be better some day, and maybe he could ask his mom for a snake or a lizard. Well, that's Keaton for you, because that is all it takes to make him feel better!(ha)
Karen, Mother of Keaton ww.caringbridge.org/visit/keatonlee
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