Quote of the day (thanks Rich!): “Inward calm cannot be maintained unless physical strength is constantly and intelligently replenished.” ~ Buddhist writing
Rich wrote, "You, Peter, and the medical team are doing all you can, a journey of sorts, to restore each of these in Mattie, and in turn, yourselves..."
Friday night I came home to rest and get some peace and quiet. Well as soon as I walked into our front door, I could hear our new neighbors were having a HUGE party. It sounded like there were like 50 people in their home. The music was blaring, the talking was loud, and they were celebrating both inside and outside. I could hear that they were celebrating a birthday, I think the happy birthday song gave it away. Well by 1am, I couldn't take it anymore. I want to be neighborly and so forth, but OH MY GOD! Can't I get peace and quiet anywhere?! In my next life I am living on a secluded island away from noise, hospitals, illness, and anything that brings about sadness. If you know of such a place now, let me know ASAP! Back to my story, so at 1am I called our front desk of our complex and complained. By 1:15am, all the noise stopped. Hallelujah!
Before I went to bed last night, I set my alarm to wake up by 9am today. I knew if I did not, I would probably sleep the entire day away. When I got up this morning, I called Peter. Peter told me that Mattie was up several times on friday night. So I immediately understood that Peter was probably wiped out! Then Peter told me that Mattie's platelet level was low and he needed a platelet transfusion. When I heard this, I asked Peter whether the medical staff were planning on premedicating Mattie before this happened. If you recall, the last time Mattie received platelets was a disaster. In fact it was downright frightening. My friend Margaret was with me, and she is the one who noticed Mattie was developing apricot sized welts. Mattie basically had a bad reaction to the platelets. He turned white as a ghost, developed welts, and then literally looked like he passed out. I was besides myself. They immediately stopped the transfusion and then gave Mattie a steroid, Solumedrol, and an antihistamine, Atarax. So today, I asked Peter if the medical staff was planning on giving Mattie Solumedrol and Atarax before the infusion. I was curious if they even documented in his chart that these medicines would need to be given prior to administration of platelets. It did not seem like they were aware of this, but by the time Peter finished with them, they pulled up Mattie's chart and indeed saw we were right. My goodness! What if Peter and I weren't there?! What would have happened? All I know is Peter and I are becoming medical experts as it comes to Mattie.
I stayed away from the hospital most of the day which was really needed. Ann invited me today to her mom's 80th birthday party. Ann told me about this party two weeks ago, and in so many ways Ann has become family to me, and I did not want to miss this important moment. I am so glad I went. There was something very special to spend the day in a home. Ann's house was decorated beautifully for Christmas and the house was full of life and excitement. There was talking, laughing, good food, children laughing and having a good time. This is so different from my hospital existence. It was almost like a surreal experience. When I arrived at Ann's, Bob greeted me at the door. I wonder if Bob gets as confused as I do. After all Bob is our friend but also Mattie's surgeon, and these are two very different roles to serve. Bob does both extremely well, but never in my life have I known my doctor on a personal level like we know Bob. Ann then introduced me to her mom, Mary. I had actually met Mary last year at SSSAS's Lesson and Carols Holiday event, and I enjoyed talking to her then as well. Mary and I have something in common. Sons with cancer. Mary lost her son to cancer last year after a courageous and herculean fight. When I introduced myself to Mary, I told her that I was a friend of her daughter's and that our children go to the same school. Then I mentioned I was Mattie's mom. She then instantaneously knew who I was. She told me that she and her husband pray for Mattie each day. She then told me how difficult it is to see your child sick and how much she misses her son. She continued to tell me how she was dealing with this, and even though it is a year later, she still profoundly misses her son. Mary got to me today. I could totally relate to what she was telling me, and I landed up crying. I felt like she really got it! She knew what I was feeling, because she has and continues to feel this profound pain and loss. In all reality Mary was marvelous therapy for me. I felt understood, and not judged for any of my feelings. I could also understand that on some level she felt guilty for having and celebrating a birthday when her son died too young. However, I wanted this day to be happy for Mary, and I did not want to be the center of attention with my crying. I wanted it to be Mary's day, and if I kept on crying that wasn't going to happen. So I stepped back and my friend, Jane (a fellow RCC mom) waved me over, and we started talking. Then Tanja (another RCC and SSSAS mom) came over to join us. I was still in a fragile state by that time, and I landed up crying more, and Tanja just hugged me and said nothing. Which in all reality is the best thing one can do when you are hysterical. Tanja and Jane kept talking with me, and then Tanja sat me down and she massaged my neck. That helped tremendously, and I could feel the tension subsiding and I felt like I could let go and take part in a conversation. I had a wonderful time chatting with Jane and Tanja, and I know both of these ladies and their families are praying for Mattie. In fact, Tanja told me that even her mom in Germany is following Mattie's blog and is praying for him!
While at Ann's, I had a wonderful lunch which she literally served me and put it on my lap to eat. She knows that food isn't top on my list, but if you put it in front of me, I will eat it. It was just a delightful afternoon, we sang happy birthday to Mary, watched the kids playing and performing science experiments. Ann's daughter, Katie and her friends were a pleasure to watch and to see
them interacting with each other, and really work as a team. I know I am probably not expressing this well, but it was a powerful experience to connect today with a special family, to be able to share a happy occasion, and to feel normal for a brief period of time. As I walked around Ann's house, all her family pictures on the walls, caught my attention. How a person decorates one's house I think speaks volumes, and clearly Ann's family means the world to her. Each picture in a way was telling a story, but more importantly captured a special point in time and development. It left a lasting impression on me, and Ann even has a sign in her house that says, "family is everything." I believe she lives and embodies that! I am not her biological family, but I sometimes think our connection transcends genetics. We are bonded through cancer. It was a pleasure to meet Ann's mom, dad (a real sweetheart), and aunt (Dottie and I were on the same wavelength about life and people) today and before I left, Ann made sure she gave me some birthday cake to bring Peter and Mattie. Ann also gave me a beautiful canvas basket for Christmas. The basket has "the Brown family" stitched into it on one side, and the other side, is stitched the word "hope." I am already putting the basket to good use. Thank you Ann for a special and memorable day. Celebrating your mom's life today was better than any therapy out there!
When I got home this evening I called Peter and told him I was headed to the hospital to play with Mattie for a little bit. Peter insisted I spend another night at home. Normally I would say no, but I really need this time away and even though Peter is exhausted himself, he still continues to always think about me and look out for my well being. Which I can assure you isn't easy these days. Cancer does a number on a couple. We are so wiped out most days, it is hard to connect and support each other like we used to. Cancer is not for the meek and fortunately Peter and I know each other for over 18 years, but I can see why families fall apart under such stress.
I arrived at the hospital around 6:30pm. Mattie was in good spirits and was creating! Peter and Liza (Mattie's favorite volunteer) were in the room with Mattie. I couldn't get over what Mattie was creating. If this isn't the true meaning of Christmas, I don't know what is! Mattie made his own nativity scene out of all the art supplies that Jenny and Jessie left him. Later in the night, I asked Peter if he coached Mattie to build this. Peter said it came from within Mattie! Somehow, call it crazy, but I feel as if God is telling me something here. Mattie's nativity scene was spectacular. Colorful, vibrant, and touching. What a special gift to see. I took a picture of it for you to appreciate. In the center of the scene is Jesus (with the plaid blanket), and Mary and Joseph are on the left. Behind the baby is the beautiful and bright star calling the wisemen and others to visit.
To the hospital tonight I brought several gifts that Mattie received today. Mattie loved the Christmas Popcorn ball decorating kit from Mema and Pipa (Ashley's in-laws/Bob #2's parents). What a great kit and we will have fun decorating and eating these creations. Mattie is into popcorn now. Thank you for such a fun holiday gift!We want to thank Leslie Williams, Mattie's kindergarten teacher for the wonderful new Jan Brett book, Gingerbread Friends. I visited Leslie's class last December and read the classic Brett book, Gingerbread Baby. The kids loved the story and then decorated their own homemade gingerbread cookies with frosting and candies (thanks Margaret for coaching me on this idea!). I always had a great time going into Leslie's class, and as a fellow GW grad, we always had a lot to talk about. Thank you Leslie for continuing the Jan Brett Christmas tradition for us. Thanks for remembering.
Jane (an RCC mom and friend) gave me a gift bag today for Mattie. Inside the bag were wonderful handmade Christmas cards from the first graders at Blessed Sacrament School. What a special and meaningful gift. We will go through these cards tomorrow. Mattie actually enjoys seeing what other children create and send to him. Thank you also for the markers, stickers, santa pencil, and the Christmas stocking! Jane also gave me a very meaningful gift as well. It is a beautiful bracelet. This is what Jane wrote to me about the bracelet, " This bracelet was made in the holyland, in Bethlehem in Shepherds' field, apparently by descendents of the Shepherds who were present at Christ's birth. With the medalion of the Mother and her son, I thought of you." Thank you Jane for this incredibly meaningful gift, I will cherish it.
We want to thank the Bentsen family for bringing a wonderful lunch to Peter today in the hospital and for the wonderful gifts from SSSAS that you gave Mattie. The Saints scarf and water bottle are great. We also want to thank the Ferris family for a wonderful dinner and all the gifts. I can't wait to do the gingerbread house with Mattie, and he loved the Scooby Doo Christmas ornament. He did not have one! We look forward to doing a magical Christmas tree as well. The kettle corn was a major hit tonight. I took a picture of Mattie eating the popcorn right out of the bowl. It was too good, he couldn't wait to use his hands, that would take too long, so he went directly to the bowl. I just had to snap a picture (Liza in the background), because I haven't seen him attack food like this in a long time. Mattie also ate two chicken nuggets, drank some of his vanilla shake, had a full piece of Mary's birthday cake, and even flavored ices. It was a major eating evening!
I received some lovely e-mails today that I wanted to share with you. The first one is from Honey (one of my supervisors at GW). Honey wrote, "Each of you is beyond amazing! I am always thinking and praying for you, Peter, and Mattie. And with these prayers I now will be placing 18 cents into a jar as symbolism of my wishes on Mattie's behalf. The number 18 in Hebrew stands for "Chai" which means life."Martina McBride's Anyway:
No comments:
Post a Comment