Quotes of the day:
Thank you Susan S.: "It's not so much that we're afraid of change or so in love with the old ways, but it's that place in between that we fear . . . . It's like being between trapezes. It's Linus when his blanket is in the dryer. There's nothing to hold on to." ~ Marilyn Ferguson.
Thank you Toni (Brandon's Mom): "Hope is faith holding out its hand in the dark." ~ George Iles
Monday night was a fairly peaceful night. Mattie was up only once. He went to bed around 12:30am, and to make a long story short, he did not wake up until 12:45pm (TODAY!). In fact, I had to wake him up because he was so tired. I felt the need to wake him up because I did not want him to sleep the day away, because I always worry that he then won't sleep at night.
I get up each weekday morning when Peter does, which is around 6am or so. I know that if I don't get up then, I won't be able to take a shower and put on clean clothes in peace, which to me is very important! The hospital seems to come to life at 8am, and if I am not up and dressed by that point, you can kiss it good-bye. As it is, the sink is right in our room, not in the bathroom, so I have become desensitized to brushing my teeth, hair, and putting on make up in front of most visitors coming in. I could tell that Mattie was going to continue sleeping this morning, so I too decided to lie back down and rest. However, unlike with Mattie, resting for me in the morning is impossible, because our room door is like grand central station.
Later in the morning, Ann and Marilyn (one of Mattie's preschool teachers from RCC) came to visit with us. Ann brought me a lovely lunch and several treats. I am happy to report, that Mattie literally ate 1/4 of the pumpkin loaf that Ann brought today, an entire dunkin donut, and a pumpkin pastry. He literally gobbled these things up! It was glorious to see. While Mattie was sleeping this morning, Ann stayed with him so I could get out of the room. I went out in the hallway and chatted with Marilyn. Marilyn is a delightful, warm, and sensitive individual. She listened to what was going on with us, and one thing that Marilyn quickly saw is that when I am out in the hallway it is no break for me. She said that literally I made four important decisions about Mattie's care or treatment while in the hallway. This is the case because I land up talking to doctors and nurses in the hallway as well as fellow parents. I certainly love talking with all these individuals, but there is NO place on the fifth floor where you can just escape and be. At the moment, Mattie needs me fairly close, so I don't like straying from the floor. I did not think much about my hallway life, other than I was cognizant of it, but when Marilyn made mention of it, I felt so good to hear Marilyn's perspective, because these days I can't tell if I am just being overly sensitive or whether it is a reality. But I had a feeling I was right on target!
At 12:45pm, Marilyn and I went back to Mattie's room and I woke him up. At which point he wanted no talking and wanted everyone out of the room. So Ann and Marilyn put our lunch foods in the refrigerator and they went to get me some hot tea. Ann left Mattie with potty putty. Right up the alley of a 6 year old boy. The putty container is a small toilet, and the putty makes all sorts of noise. When Ann left, Mattie couldn't resist but playing with the thing! When Ann and Marilyn got back to Mattie's room it was a little different from when they left it. Mattie was out of bed, in his wheelchair and working on a tough puzzle. In addition, Linda, Anna, and Matt Biel (Mattie's psychiatrist) came to visit and where surrounding him. When Ann and Marilyn came back, they couldn't get over how many of us where in the room! It saddens me that Mattie can't connect with people like he used to. He refuses to talk and wants to be around no one. Marilyn and Ann dealt with this well, and they came in today with no expectations, which is a great way to come. It was certainly nice to see both of them, and I just wish they could have stayed longer, it would have broken up the day longer. But Mattie just can't handle it now, and has no problem telling people to just leave. It is hard not to take his demands personally.
As the afternoon moved along, Mattie had to go down for x-rays. Bob wanted all of Mattie's operated parts to be x-rayed to make sure the prostheses were in place and the wrist graft was taking. We actually tried doing x-rays yesterday, but we did not get too far. We did just the wrist. Mattie had a new x-ray technician yesterday, who he wasn't used to, nor was she used to Mattie, so the dynamics weren't right to actually complete the scans. Today, Linda brought Jey into the picture. Jey is a CT technician and Mattie's "big brother." Jey agreed to come with Mattie to the x-rays today. So Linda, Mattie, Jey, and I went on an x-ray adventure. Linda even wrapped Christmas lights around Mattie's IV pole to make the trip extra special. Mattie dealt with the x-rays better today, though by the end he was crying and wanted to get back to his room.
I have been reflecting on Mattie's ability to do therapy (PT and play) while in the hospital this week. I spoke with Dr. Synder about this today and she said if I wanted Mattie to have therapies this week, that I just needed to call Anna and Matt Biel. So indeed I did. I had the medical resident page them. Anna came up right away as did Matt. Matt usually provides therapy on an outpatient basis, but I told him my concern about this is Mattie is rarely outpatient. So he has agreed to try to schedule to meet Mattie three times a week while he is inpatient. Trying to schedule anything while inpatient is tricky because things here are always in flux. Mattie could potentially not be feeling well, he could be called for a scan, a doctor's visit, etc. When Anna came however, I was disturbed by Mattie's attitude. Not that he was afraid, though this could be the heart of the problem, I don't know. But he basically told Anna that he doesn't need her, and he knows better than her. He says he can walk already, so doesn't need instruction from Anna. Anna and I played it cool, and we pretended that Anna was instructing me rather than Mattie. I am determined to get him up and walking and more independent. Of course as I think about this, if he is experiencing anxiety and trauma, maybe he isn't ready for such a big step toward independence. I don't know, but somehow I view the emotional issues to be very connected to Mattie's unwillingness to work with Anna.
Ironically Mattie mentioned to Alison and I yesterday that he doesn't like adults. Sure why would he? We are constantly exposing him to painful things and medicines. Mattie's blood count today is 80. Up from zero. But it needs to be around 500 to be discharged from the hospital. So we have a way to go. We want to thank Marilyn today for the beautiful poinsettia plant (though plants are not allowed in the PICU, we plan on taking the plant to Peter's office), the treats, and the Search and Find holiday book for Mattie. That was so thoughtful of you! We also want to thank Toni, Jim, and Brandon for the Christmas gifts. Mattie loves the hotwheels. Mattie appreciates his big buddy thinking of him. We continue to miss Toni and Brandon, so it was such a nice surprise to see them here today. I think Brandon also misses being here, because for several months this was his community and support network. It is hard to leave that behind.
We want to thank the Keefe family tonight for the wonderful dinner. It meant a lot that you forged through the rain and the terrible traffic to get here. We are blessed to have an incredible network of supporters, and there isn't a day that goes by where we don't acknowledge how lucky we are to have Team Mattie in our lives. Marliyn and I were talking to another family in the hall today who was telling us about their financial hardship. Both of these parents lost their jobs, have no insurance to speak of, and therefore no income coming in. Yet they have a very sick child. When I hear stories like this, I feel fortunate, and I try to look at the positive (which is HARD to do these days) regarding my own situation.
I received two lovely e-mails today which I would like to share with you. Mary M. (a former student of mine) wrote, "I'm sorry to hear your parents are leaving. I'm sure that must be very hard for you. I thought they lived nearby, I didn't realize they lived in California. When you wrote about your parents, it was very apparent how much they love you and want to help. I thought to myself, "They love Vicki like Vicki loves Mattie. That's why they were there for you...just like you have been for Mattie and like you would also be for Mattie, if he were an adult going through what you are going through now. That's what's amazing, the love of parents for their children, it's never-ending and endures all. You've proven that. I was wondering, would you rather stay in the hospital until Monday if you had a choice or would you like to go home with Mattie for a break from the hospital? It's so hard to take him home, just to turn around and go back, yet I bet it's nice to get away from there too. What a choice! Your options have been very difficult on so many levels lately. Your description of the way the hospital functions is really disturbing. You'd think that things would have changed over the years, but it appears that certain things in hospitals never change. I don't get it. I'm sure I speak for many when I say, although it's hard to see your parents leave, you are not alone. We're all out here... praying for Mattie, you and Peter and wishing for things to turn around in the positive direction."
I would like to end tonight's blog with an e-mail I received from Mary D. Mary is a RCC mom and she and her family have become wonderful Mattie supporters. Mary wrote, "I wanted to thank you so much for allowing me the opportunity to see Mattie in the hospital. When I entered his room, he was singing a Christmas carol with your Mom. It was so magical, his voice so incredibly sweet. He flashed a smile at me, and it was wonderful. It was a moment I will forever treasure and feel so blessed. He’s such a special young boy. You are amazing parents! We are all lucky that the Brown family has crossed our paths. A friend of mine forwarded me the following entitled, “The True Meaning of Christmas.” I had to share this with you. I do believe in miracles, and we are all praying for one for Mattie!"
THE TRUE MEANING OF CHRISTMAS
Three years ago, a little boy and his grandmother came to see Santa At the Mayfair Mall in Wisconsin . The child climbed up on his lap, holding a picture of a little girl. "Who is this?" asked Santa, smiling. "Your friend? Your sister?'" "Yes, Santa,' he replied. "My sister, Sarah, who is very sick," he said sadly. Santa glanced over at the grandmother who was waiting nearby, andSaw her dabbing her eyes with a tissue. "She wanted to come with me to see you, oh, so very much, Santa!" the child exclaimed."She misses you," he added softly.Santa tried to be cheerful and encouraged a smile to the boy's face, asking him what he wanted Santa to bring him for Christmas. When they finished their visit, the Grandmother came over to help the child off his lap, and started to say something to Santa, but Halted.
"What is it?" Santa asked warmly.
"Well, I know it's really too much to ask you, Santa, but ..." the old woman began, shooing her grandson over to one of Santa's elves to collect the little gift which Santa gave all his young visitors."The girl in the photograph... My granddaughter well, you see ....She has leukemia and isn't expected to make it even through theHolidays," she said through tear-filled eyes. "Is there any way, Santa. Any possible way that you could come see Sarah? That's all she's asked for, for Christmas, is to see Santa."
Santa blinked and swallowed hard and told the woman to leave information with his elves as to where Sarah was, and he would see what he could do. Santa thought of little else the rest of that afternoon. He knew what he had to do. "What if it were MY child lying in that hospital bed, dying," he thought with a sinking heart, "This is the least I can do."
When Santa finished visiting with all the boys and girls that evening, he retrieved from his helper the name of the hospital where Sarah was staying. He asked the assistant location manager how to get to Children's Hospital.
"Why?" Rick asked, with a puzzled look on his face.
Santa relayed to him the conversation with Sarah's grandmother earlier that day. "C'mon.....I'll take you there." Rick said softly. Rick drove them to the hospital and came inside with Santa.They found out which room Sarah was in. A pale Rick said he would wait out in the hall. Santa quietly peeked into the room through the half-closed door and saw little Sarah on the bed.
The room was full of what appeared to be her family; there was the Grandmother and the girl's brother he had met earlier that day. A woman whom he guessed was Sarah's mother stood by the bed, gently pushing Sarah's thin hair off her forehead.
And another woman who he discovered later was Sarah's aunt, sat in a chair near the bed with a weary, sad look on her face. They were talking quietly, and Santa could sense the warmth and closeness of the family, and their love and concern for Sarah.
Taking a deep breath, and forcing a smile on his face, Santa entered the room, bellowing a hearty, "Ho, ho, ho!" "Santa!" shrieked little Sarah weakly, as she tried to escape her bed to run to him, IV Tubes intact. Santa rushed to her side and gave her a warm hug. A child the tender age of his own son -- 9 years old -- gazed up at him with wonder and excitement.
Her skin was pale and her short tresses bore telltale bald patches from the effects of chemotherapy. But all he saw when he looked at her was a pair of huge, blue eyes. His heart melted, and he had to force himself to choke back tears.
Though his eyes were riveted upon Sarah's face, he could hear the Gasps and quiet sobbing of the women in the room.
As he and Sarah began talking, the family crept quietly to thebedside one by one, squeezing Santa's shoulder or his hand gratefully, whispering "Thank you" as they gazed sincerely at him with shining eyes. Santa and Sarah talked and talked, and she told him excitedly all the toys she wanted for Christmas, assuring him she'd been a very good girl that year.
As their time together dwindled, Santa felt led in his spirit to pray for Sarah, and asked for permission from the girl's mother. She nodded in agreement and the entire family circled around Sarah's bed, holding hands. Santa looked intensely at Sarah and asked her if she believed inangels. "Oh, yes, Santa... I do!" she exclaimed.
"Well, I'm going to ask that angels watch over you." he said. Laying one hand on the child's head, Santa closed his eyes and prayed. He asked that God touch little Sarah, and heal her body from this disease.He asked that angels minister to her, watch and keep her. And when he finished praying, still with eyes closed, he started singing, softly,"Silent Night, Holy Night.... all is calm, all is bright...""The family joined in, still holding hands, smiling at Sarah, and crying tears of hope, tears of joy for this moment, as Sarah beamed at them all.
When the song ended, Santa sat on the side of the bed again and held Sarah's frail, small hands in his own. "Now, Sarah," he said authoritatively, "you have a job to do, and that is to concentrate on getting well. I want you to have fun playing with your friends this summer, and I expect to see you at my house at Mayfair Mall this time next year!"
He knew it was risky proclaiming that to this little girl who had terminal cancer, but he "had" to. He had to give her the greatestgift he could -- not dolls or games or toys -- but the gift of HOPE."Yes, Santa!" Sarah exclaimed, her eyes bright. He leaned down and kissed her on the forehead and left the room.
Out in the hall, the minute Santa's eyes met Rick's, a look passed between them and they wept unashamed.
Sarah's mother and grandmother slipped out of the room quickly and rushed to Santa's side to thank him.
"My only child is the same age as Sarah," he explained quietly."This is the least I could do." They nodded with understanding and hugged him.
One year later, Santa Mark was again back on the set in Milwaukee for his six-week, seasonal job which he so loves to do. Several weeks went by and then one day a child came up to sit on his lap."Hi, Santa! Remember me?!" "Of course, I do," Santa proclaimed (as he always does), smiling down at her. After all, the secret to being a "good" Santa is to always make each child feel as if they are the "only" child in the world at that moment.
"You came to see me in the hospital last year!" Santa's jaw dropped.Tears immediately sprang in his eyes, and he grabbed this littlemiracle and held her to his chest. "Sarah!" he exclaimed. He scarcelyrecognized her, for her hair was long and silky and her cheeks wererosy -- much different from the little girl he had visited just a year before. He looked over and saw Sarah's mother and grandmother in the sidelines smiling and waving and wiping their eyes.
That was the best Christmas ever for Santa Claus.
He had witnessed --and been blessed to be instrumental in bringing about -- this miracle of hope. This precious little child was healed. Cancer-free. Alive and well. He silently looked up to Heaven and humbly whispered, "Thank you, Father. 'Tis a very, Merry Christmas!"
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