Quote of the day:
"It is only when we silent the blaring sounds of our daily existence that we can finally hear the whispers of truth that life reveals to us, as it stands knocking on the doorsteps of our hearts." ~K.T. Jong
Charlie wrote this to me today. "So many of us forget about what is really important as we rush off from one deadline to another, one meeting to the next and then sit down at the end of the day or fall exausted into bed and wonder what in the world we've accomplished at all. There is the story that cycles through periodically that says with great wisdom when we are dying we won't say, "I wish I had spent more time at work but I do wish I had spent more time with my children or my spouse or my friends." I might wish I had done more traveling but I won't wish I spent more time in meetings. As difficult as it is, you are doing what is really important right now, supporting Mattie so that he can continue to grow and flourish as a person. As I've said so many times before, I don't know where you and Pete find the energy to do that virtually round the clock; although we all read about it, none of us are suffering the sense of exhaustion that you clearly are."
Today was a busy day. Just non-stop activities. I am happy that Mattie had such a busy day, but I have trouble balancing anything else while meeting his needs. I basically woke Mattie up today at 10am. I did this because he had a physical therapy session at 10:30am, and I wanted him to get up and have breakfast first, so that he would be ready for Anna. Meg came to greet Mattie this morning. Meg is an intern of Linda's. Meg and Mattie click VERY well together. Mattie was excited to see Meg, so much so that he decided to get into his wheelchair and head to the playroom. I brought his breakfast to the playroom and we played some games before Anna came for a visit. I played "Spill the beans" with Mattie, and lost EVERY single time! He loved it!
Anna came prepared today with a great activity to get Mattie up and moving. She brought around 20 large plastic tubes today that could be pulled open like an accordian. Mattie used his hands and arms to extend open each of these tubes. Then Mattie and Anna joined the tubes together. It was a sight to see. The final tube was incredibly long and extended down the entire hallway. Anna then tied the long tube to Mattie's walker, and Mattie started walking with the tube behind him. He thought it was a riot. It looked like he had an extremely long tail. Several people came out to observe this activity. In addition, Dr. Matt joined in and started playing a telephone game with Mattie using the tube. He was at one end of the tube, and Mattie was at the other and they started whispering through the tube at each other. They told jokes and stories and so forth. It was very clever. The tubes got him up and walking. It was very clever, through play, Mattie forgets what he is doing and he is more apt to try moving his body. I snapped some pictures of this tube train!
Left: Mattie, walking down the hallway with Anna and his long tail! You can see Katie, one of Mattie's nurses standing in the doorway of the PICU watching Mattie's progress.
Right: Mattie is walking straight on, no crab walking here! Anna is trailing after him with the IV pole, and Dr. Matt is holding the other end of the tube in the far right hand side of the picture.
Left: Jenny, Dr. Matt, Anna, and myself were working with Mattie to roll beads through the inside of the tube. Mattie had to walk and follow the beads moving through the tube. It was very clever!
Right: Katie, one of Mattie's great Hem/Onc nurses, is holding the end of the tube with Mattie, while Dr. Matt is on the other end of the tube relaying a joke through the tube. You can see Anna laughing from the joke!
Mattie had a very productive PT session today and Anna is working super hard at developing a rapport with Mattie. This rapport is crucial to accomplishing anything of significance with Mattie. After the PT session was over, Anna, Dr. Matt, and I went back to his room. At which point, Mattie asked Anna and I to leave, because Mattie had something planned that he wanted to do with Dr. Matt. When I was invited back in the room, Mattie had planned to tape the long connected tubes close to his ceiling. So literally picture a tube system around the perimeter of our ceiling. Now you may be asking yourself, what on earth is this for? Well Mattie created a habitrail (or a plastic tubing system for something to crawl around in) for his pretend cockroaches. He thinks it is wonderful, and I think it is gross, even if it is for pretend. Well Dr. Matt used this activity to talk to Mattie about fears and how to deal with fears. Of course Mattie knows I highly dislike cockroaches and the nurses and Anna share my sentiments. So Dr. Matt asked Mattie what he could tell us to help reduce our tension associated with coming into his room filled with a habitrail of cockroaches. So in essence they tried to talk about coping mechnisms today and of course the underlying theme in all of Mattie's sessions, which is how to feel safe and secure.
After these sessions, Mattie and I headed back to the playroom. Mattie started to paint a box to house his octopus and lizard. While we were painting, we had a visit from Alissa. Alissa is a former student of mine. She brought us a wonderful lunch and Mattie ate his happy meal and loves the kaleidoscope Alissa gave him. Alissa brought us some sweet treats too, which we appreciated. Thank you Alissa for supporting us today and coming out in the cold and the ice!
Jessie came up from the clinic today to play with the children on the floor. She came into the playroom and did some clay activities with Mattie and another little boy. Mattie played very well with this little fellow, who is three years old. I was proud to see him interacting with others much better today. Mattie had three special visitors today. Louise and Meredith Bentsen came to play with Mattie. Louise is a senior at SSSAS and Meredith is a sophomore at SSSAS. They joined Mattie in the playroom and I sat in the hallway for a while, and enjoyed the tea and cherries that their mom, Tamra brought me. I almost forgot how much I love Earl Grey tea. That is a special treat, not to mention fresh fruit! Louise and Meredith captured Mattie's attention today and they just clicked. I was so happy to see this. Mattie's third visitor today was Charlotte. Charlotte joined Mattie in the playroom, and Louise and Meredith had a good time playing with both of them. When they all came back to Mattie's room, Mattie explained his cockroach habitrail to the ladies. Louise and Meredith were great sports, and really embraced Mattie's curiousity. Experiencing teens like Louise and Meredith is such a pleasure. It gives you hope in the next generation. They are just so refined, down to earth, and supportive of Mattie. I am so impressed that these young ladies gave up some of their time during their day off from school to spend with Mattie.
Charlotte and Mattie had a wonderful time together. They laughed together and enjoyed each others company. Mattie had Charlotte going up and down on his hospital bed, as if it were an elevator. They ended their playdate by having a beautiful star shaped sugar cookie that Ellen brought with her. Ellen, Charlotte's mom, told me a cute story today. Ellen was talking with Charlotte yesterday morning, and Ellen mentioned that she had good news to share with Charlotte. Charlotte immediately jumped to conclusions that the news was about Mattie. She asked her mom whether all of Mattie's bone bugs were gone. I found that story touching and I continue to be in amazement by the bond these young children have together. Thanks Ellen for bringing Charlotte to the hospital today and for all the treats your brought us. I took a picture of this fabulous foursome today!
Front row: Charlotte and Mattie (does he look like he is having fun?!)
Back row: Meredith and Louise
After Charlotte left today, Dr. Bob came to derotate Mattie's left arm. Bob told Mattie that he knows the exact problem with Mattie's arm. He diagnosed him as having chickenarmitis! It was hysterical. Mattie believed this at first. Mattie had 2mgs of Versed today to help him calm down for the procedure. It was wonderful to do this without full sedation. Mattie cried for a few minutes after the rotation process, but Bob diverted Mattie's attention by asking him about his favorite topic, cockroaches. Bob examined Mattie's huge model magic cockroach, and they had a good time scaring me with this thing! Mattie bounced back right away from the procedure, and was ready to go back to the playroom after Bob left. I put the sling right on his arm after the procedure, and Mattie is now wearing it to bed, along with his immobilzer on his right leg. Mattie is dealing with all of this well, and seems to go with the flow.
After Charlotte left today, Dr. Bob came to derotate Mattie's left arm. Bob told Mattie that he knows the exact problem with Mattie's arm. He diagnosed him as having chickenarmitis! It was hysterical. Mattie believed this at first. Mattie had 2mgs of Versed today to help him calm down for the procedure. It was wonderful to do this without full sedation. Mattie cried for a few minutes after the rotation process, but Bob diverted Mattie's attention by asking him about his favorite topic, cockroaches. Bob examined Mattie's huge model magic cockroach, and they had a good time scaring me with this thing! Mattie bounced back right away from the procedure, and was ready to go back to the playroom after Bob left. I put the sling right on his arm after the procedure, and Mattie is now wearing it to bed, along with his immobilzer on his right leg. Mattie is dealing with all of this well, and seems to go with the flow.
Mattie spent a great deal of time in the playroom today, and when he went back tonight, he continued to play with his cars. Mattie had a wonderful dinner tonight thanks to the Gehrs' family. Mattie loved the popcorn shrimp! It was a sight to see him eat them. He ate well tonight and we all enjoyed the wonderful foods from the Cheesecake Factory. I loved the laua salad, which made my night. Mattie watched a movie tonight while I was doing laundry and then Peter and I were talking to one of our favorite volunteer duo, Jerry and Nancy. Mattie hasn't wanted to hear music in his room for quite some time. I hope at some point he lets Jerry and Nancy back in, because they are wonderful. Jerry and Nancy have invited me next week to go around the hospital with them to sing. We make a good trio, and I am considering going with them!
As of tonight, Peter has finished a lego set with Mattie, watched an animal planet episode about hippos, and are now doing a puzzle! It is almost midnight, and Mattie is wired and bored, and wants non stop attention. Peter and I are exhausted, but Mattie is still ready to go. Mind you he had an ACTIVE day, but he has no off switch. Before I sign off for the evening, I want to share two e-mails I received today with you. The first e-mail comes from one of Mattie's babysitters, Julie. Julie is a former student of mine and she worked with Mattie for two years. We miss Julie a great deal and I was deeply touched by what she wrote to us today. I am happy Julie is coming into town this weekend and will be seeing Mattie on saturday. Julie wrote, "I don't even know where to begin. I've never been very good at handling the tough situations life throws at you. Even now, I struggle to articulate my feelings about Mattie's sickness and your family's battle to beat the cancer. In my 22 years of life I have never experienced so much loss as I have since I graduated in May. Two close friends of mine passed away over the summer and recently my great uncle died after suffering a stroke 10 years ago that changed his and his wife's life forever.
Even as I write this e-mail I think to myself; Why am I talking about all the loss in my life when Vicki and Peter are going through their own upward battle? The reason I'm telling you this is because over the past seven months your family has given me the strength and hope to move forward with my life. I've found it easy to give up when faced with the hardship of losing a close friend. I've thought things like; Why is the world so unfair or How God could take my friend away who had so much living to do? Each time I falter and feel like giving up, I think of Mattie's strength and persistence to fight cancer. I think out loud, What an amazing boy Vicki and Peter have raised! I look and the pictures of Mattie smiling in New York or making art projects in the hospital. If Mattie, Vicki and Peter can get out of bed everyday and do the things they do then I have to too. If not for me, then for Mattie. Mattie is a fighter and I pray for your family everyday. I pray for Mattie to continue his battle to fight the bone bugs. I pray for Vicki and Peter and am constantly amazed at their ability to handle the dozens to challenges they are faced with each day."
Even as I write this e-mail I think to myself; Why am I talking about all the loss in my life when Vicki and Peter are going through their own upward battle? The reason I'm telling you this is because over the past seven months your family has given me the strength and hope to move forward with my life. I've found it easy to give up when faced with the hardship of losing a close friend. I've thought things like; Why is the world so unfair or How God could take my friend away who had so much living to do? Each time I falter and feel like giving up, I think of Mattie's strength and persistence to fight cancer. I think out loud, What an amazing boy Vicki and Peter have raised! I look and the pictures of Mattie smiling in New York or making art projects in the hospital. If Mattie, Vicki and Peter can get out of bed everyday and do the things they do then I have to too. If not for me, then for Mattie. Mattie is a fighter and I pray for your family everyday. I pray for Mattie to continue his battle to fight the bone bugs. I pray for Vicki and Peter and am constantly amazed at their ability to handle the dozens to challenges they are faced with each day."
The second e-mail I received was from Margaret, a friend and Mattie's first preschool teacher at RCC. She sent me this lovely poem, which I think is a touching way to end tonight's blog!
AT DAY'S END ~ Adelaide Love
I hold you in my arms before the fire
And tell the fairy tale you love the best,
While winter twilight deepens and the first
White star comes forth to glitter in the west.
So softly do you lie against my heart
I scarcely know if it be child or flower
I cradle, till you stir and draw a breath
Of wonder at the tale, O, blessed hour
That every mother know when at day's end
She holds her little child, a wistful ache
Commingling with her joy, and dreams a dream
For him and breathes a prayer for his dear sake!
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