Quote of the day: "Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them." ~ Ralph Waldo Emerson
Peter tells me that Mattie had a restless night of sleep on Saturday. Mattie was up every 90 minutes to use the bathroom and then awoke at 8am, which is unusually early for Mattie. Peter and Mattie played for several hours this morning with legos and puzzles. They also did a lot of pretend play together. Mattie was energized but moody for most of the morning, and had a visit from JJ (our resident Jack Russell Terrier) and also had the opportunity to watch a Tom and Jerry video with my parents. Later in the afternoon we packed up and drove to Charlotte's house. Charlotte is a very close friend of Mattie's. Ellen (Charlotte's mom) invited all of us to her home for dinner and a chance for Mattie and Charlotte to play together. As soon as Mattie and Charlotte saw each other, they just seemed to pick up from where they left off. They laughed together, played with Charlotte's dog, Nelson, and even played hide and seek. They then watched a Scooby Doo movie that Charlotte had wanted to see the last time she visited Mattie in the hospital.
While the kids were playing, we all had a lovely time talking and catching up with each other. My parents were invited as well, and they thoroughly enjoyed being included and getting to know Charlotte's family better. Charlotte's sister was home from college as well, so there was definitely a wonderful feeling of connectiveness and family in the air. Ellen prepared a beautiful and tasty dinner for us and after dinner we all played a game called Apples to Apples together. Naturally, Charlotte and Mattie teamed up together and beat all of us!
After the game, we had dessert and the chatting continued. Mattie then started to get tired, and before we left I decided to snap some pictures of this twosome. You can see the silliness that unfolded for the camera.
Once I put my camera away, the kissing bandit came out. This is what I called Mattie tonight, because to my surprise, Mattie and Charlotte kissed each other. It was very sweet and innocent. It is too bad my camera wasn't out for this, but it happened too fast for me to even process. Then after I commented on this kiss, the both of them started kissing the air and trying to kiss each other. I can assure you the kissing bandit was an excellent name for Mattie this evening! Just as a reminder, Charlotte was the friend throughout kindergarten who Mattie told me he was going to marry. I do not think Mattie had the foggiest clue of what this really meant, but now Mattie's newest kick is if you kiss a girl that means you are going to marry her. This whole dialogue is truly fascinating to listen to! Needless to say, we appreciated being a part of Charlotte's family tonight, and to sit around a dinner table as a family and have a conversation.
As we head into Monday, Mattie heads to the clinic for his administration of MTP-PE. On Tuesday, Peter and I have an appointment at Children's Hospital. We are meeting with a pediatric surgeon there who Dr. Bob recommended. The only catch is the doctor wants to see Mattie as well. The appointment is at 9:30am. It will be like mission impossible to get Mattie there on time. The timing is bad enough, but Mattie at the moment does not know he needs lung surgery in June. I wasn't prepared to tell him yet. But he will be suspicious when we meet with another surgeon on Tuesday, especially since he thinks his treatment is almost over. I resent having to bring Mattie to this appointment. Sure every doctor we have ever consulted with, except for Dr. Seibel, has said they needed to see Mattie. But do they really examine Mattie, NO! But I believe the main reason to see him is for billing and insurance purposes. I am disgusted with the whole situation. I will begin to talk with Mattie about the June surgery, but I wish the medical field would allow parents to make some decisions, and that insurance did not dictate when I have to deliver news. I am sure the doctors would give me a rational explanation for why Mattie must be present for this visit, but frankly I wasn't born yesterday. I have survived 10 months of this process, and there is NO way a surgeon who is doing lung surgery needs to physically see Mattie, when he has access to scans and other diagnostic reports. Okay I said my two cents, but naturally my hands are tied.
I would like to share a message from my friend Charlie. Charlie wrote, "I was glad to hear that Mattie had a good day on Saturday and that Vicki got some much needed downtime. I can tell that you had your hands full; no parent has enough of an energy store to be a full time playmate to an active seven year old but your pre-planning certainly made the situation much better. As for seeing this last chemo session as the end of a painful road, even the most positive transitions take courage and how much more is required when the threat of a return to illness lingers over your lives. Anxiety levels are high and will be up every time Mattie faces another scan to make sure he remains well. Truthfully, there is nothing anyone can say that will relieve that fear; all you can do is face it with courage and try (as you are) to change the outcome of this disease long term."
As we approach Mother's day, I would like to share a poem Charlie shared with me today! This is for all the awesome moms out there and who read this blog!
Awesome Moms
Before I was a Mom,
I never tripped over toys
or forgot words to a lullaby.
I didn't worry whether or not
my plants were poisonous.
I never thought about immunizations.
Before I was a Mom,
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind and my thoughts.
I slept all night.
Before I was a Mom,
I never held down a screaming child so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.
Before I was a Mom,
I never held a sleeping baby just because I didn't want to put her down.
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.
Before I was a Mom,
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important and happy.
Before I was a Mom, I
had never gotten up in the middle of the night every 10 minutes to make sure all was okay.
I had never known the warmth,
the joy,
the love,
the heartache,
the wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much, before I was a Mom.
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