Friday, August 21, 2009

Friday, August 21, 2009

Quote of the day: "When someone you love becomes a memory, the memory becomes a treasure." ~ Author Unknown

We continue to see a decline in Mattie's energy level, and what was a real wake up call for us was that Mattie was too tired to get out of bed today. In fact, he remained sleeping for most of the day until 3pm. At 3pm, he decided to wake up, and I moved him from his bed to my bigger bed, where he could snuggle with me and watch a video. Mattie was in a very snugly mood all day, and really wanted my attention and my presence. He told me multiple times today that he loved me! In addition, I have noticed that Mattie listens to every word I say. If he hears me compliment someone else, or even something else (for example he got very upset with me when he heard me say that the strawberries we received were beautiful and delicious) he gets very upset. He will then say to me, "am I not as beautiful or special?" Prior to Mattie's illness, such a statement would be ridiculous and would need to be addressed, but now, I remain calm and assure him that nothing compares to him in my eyes. He is the best, the sweetest, the brightest, and the most loving. But Mattie's insecurities about himself on some level are very intuitive, because I believe he senses his own demise, and by looking for this reassurance, he is trying to secure his importance in my eyes, and in his own. What he can't possibly understand though, is as his mom, he will always be my shining star, my one and only, and my little love.

We want to thank Beth E. for a wonderful lunch. Thank you Beth for the fantastic tomato salad with fresh basil, and the amazing fruit, homemade whipped cream, and angel cake! You spoiled us today. Mattie hasn't opened up the gift you gave him yet, but thank you so much for thinking of him.

Mattie eventually decided to go downstairs today, and he played for a bit with my parents. They continued their "Captain Mattie" game, except Mattie named my dad "Captain Crybaby Pop-Pop who Poops A lot, Spraying Pee-Pee Out of his Head." In fact, Mattie and my mom made a sign to signify this pronouncement. In the picture, you can see Mattie holding up the sign indicating my Dad's new name in the Captain Mattie game. When I saw this name, I was at first shocked, but then I reminded myself Mattie is 7, loves potty humor, and this whole scenario made him laugh! So I welcomed the humor! But I am tired and emotionally worn out, so my sense of humor is waning these days.

While my parents were playing with Mattie, Peter and I went to lie down for an hour. As the afternoon wore on, Peter and Mattie started to build a Lego set. Mattie appeared to have the energy to do this. However, as the evening wore on, Mattie had a major meltdown when it became dinner time. Mattie did not want Peter and I to eat at the table with my parents. He wanted us by his side on the floor. Since Mattie EAT and DRINKS NOTHING by mouth, he gets very agitated when he sees Peter and I eating. This brings about a great deal of stress in our household because clearly Peter and I can't go without eating. The smell of food makes Mattie nauseous, and then the other problem is Mattie claims to be starving. However, whatever he ingests, he lands up vomiting. In any case, Mattie got so worked up tonight, that he needed IV Valium to settle down. It wasn't a pleasant sight, and he landed up vomiting and really panicking over the whole concept of dinner time.

Needless to say, having many rounds of these emotional events are very wearing on us, and of course heart breaking to watch for Mattie. No one should have to live this way, but especially a seven year old. If you could see what Peter and I observe now on a daily basis, and the hourly medications we have to push through his central lines, you have to wonder what kind of world do we live in, and what is God's plan here? I must say I don't get his plan at all, and seeing Mattie in so much pain and so debilitated is something that I will have lasting memories of. In fact, while I was lying next to Mattie today, he told me that he doesn't feel well. He couldn't describe what is bothering him, but he knows something is just not right. In fact, I can see he feels worse than when he was on high doses of chemotherapy. I think that speaks volumes.

The journey of palliative care is not an easy one. It breeds isolation at home and also disconnects you from the living world. We are absorbed in a 24/7 world of pain, IVs, oxygen tanks, and other horrific sights and sounds. It is almost indescribable, but I assure you, I wouldn't wish this on anyone. I appreciate the continual virtual prayers that are being sent for Mattie and my family. We need each and every one of them, because our daily existence is not only bleak but depressing.

At around midnight tonight, as I was administering Mattie more medication, and Peter was rubbing vaseline on Mattie's lips, Mattie let out with a tiny scream. I immediately panicked, and being tired myself, I landed up screaming too. Why was he screaming? He screamed because his front tooth, which has been hanging by a thread for weeks now, finally popped out! I wasn't sure what I was doing first, pushing medication through Mattie's central line, or catching the blood dripping from where the tooth emerged from! Once I pulled myself together, we then started talking to Mattie about what he wanted from the toothfairy. So in the picture you will see Mattie holding his wooden toothfairy box, which I remember buying with him the last time we were in Florida, and smiling with his front tooth missing. He had me write a note to the toothfairy, because he has requested that she NOT take his tooth, but still leave him some things such as a hotwheels jeep and truck! He has it all figured out.

I would like to end tonight's posting with four messages I received today. The first message is from my friend, Charlie. Charlie wrote, "All of us are already mourning the loss of Mattie as the little boy with boundless energy. Right now, not only are you losing the Mattie you love but the Mattie of the future; all of the things he will not be here to accomplish. This is a life long loss; it is one you will battle again and again. I can only say while Mattie will never have all these experiences, he had a life as full of love as those who lived far longer. I also grieve for the tightening of your circle as Mattie's energy wanes; his focus is on you and Peter and that takes a tremendous toll above and beyond what this year has already wrought. I wish you the needed strength to support Mattie the rest of the way. As I read Thursday's blog the other thought that stayed with me was the word "legacy" and how could I incorporate that into my life and honor Mattie's battle? I thought I would share with you what this year has meant to me. My legacy from Mattie is that I am more sensitive to others; I now actively look for ways to help, the small sometimes overlooked kindnesses of smiles, kind words, and small favors. It is amazing what these little "politenesses" can do. In Judaism, we learn about mitzvot, those good deeds that are an obligation for each of us to perform. When you do them with love in your heart, it becomes a blessing on the world; I do them with Mattie in mind so that the deeds may be part of his ongoing gift to the world. I hold you in my thoughts and prayers."

The second message is from a former SSSAS teacher, and Mattie's piano teacher. Many of you may recall that Caroline worked throughout the year with Mattie. Caroline wrote, "Greetings from South Florida. Even though I am many miles away there isn’t a day that goes by that I don’t think of you and Mattie. Through your blog I feel like I’m still just a drive over the Memorial Bridge away. I don’t know why it has been so hard for me to write to you after the latest CT results. The devastating news that the beginning of August brought has almost put me in a state of denial-that your child who told me that he could do anything he wanted to do even though he has bone cancer, is now truly fighting for his life. It’s an ever evolving paradox. As I read about his daily struggles to do the simplest tasks that I take for granted, such as eating or being able to sleep through the night without major narcotics, I realize that his spirit is becoming even greater and more powerful in his weakness. I think Joan Holden made the comment that she has yet to see a picture where Mattie isn’t smiling. As Mattie becomes weaker, his spirit is becoming stronger. Your journey over the past year has touched thousands of lives and your ability to be forthcoming with your innermost feelings has truly changed the way I think of weakness. There are no words of comfort to offer you right now. It’s hard for me to read the blog now without crying. I can promise you one thing- that the legacy of Mattie will live in my heart forever. Mattie has made me realize the power of the human spirit, especially in childhood. Whether it’s in the classroom or in the hospital, there is so much to learn from children. Mattie himself knew that he was becoming progressively physically weaker, yet he allowed his spirit to become stronger and stronger with each passing day, despite countless miserable ones."

The third message is from a former student of mine. I was very touched by Ariel's message and her desire to become a pediatric oncology nurse. I told Ariel, I have many phenomenal oncology nurses I can easily introduce her too! Ariel wrote, "It is still extremely difficult for me to find the right words, but I wanted to write you again to let you know that you, Peter and Mattie continue to constantly be in my thoughts and prayers. I am in Greece with my mom right now, but the first thing I do when I wake up is check the blog to see how Mattie is doing and every morning my heart breaks for all of you, as I read that Mattie's condition is rapidly deteriorating. I really hope that the oral chemo will slow down the progression of the disease, and help control Mattie's pain. I also wanted to let you know that through your blog you have helped me in choosing my career path. Before I began following Mattie's story, I decided that I wanted to be a Nurse Practitioner and always knew that I would work in Pediatrics. However, reading Mattie's story and hearing you talk about his wonderful nurses has made me decide to go into Pediatric Oncology. Everyone tells me how difficult it will be, and they may be right, but someone has to do it and if I can help children like Mattie and make their battle any easier, then that is what matters. So thank you! I so wish that there was something I could do or say to ease the pain and heartbreak you, Peter and Mattie are experiencing. Please know that all of you are always in my thoughts and prayers and I send lots of hugs your way!"

The last message was sent to me by Jennifer G. Jennifer is a fellow RCC parent and friend, and her father is an Episcopalian Priest who wrote two beautiful prayers for Mattie and Mattie's community. Thank you Jennifer.

A Prayer for Mattie
Blessed Lord we thank you for being where we cannot be.
We thank you for keeping vigil in Mattie’s heart and mind
For laying your hand on his pain and fear
For knowing the path he is on and where it will lead
For opening the door to his future and welcoming him with loving arms
For sharing life with him.
Help us to entrust him to your care and ourselves to your strengthening and healing grace.
In Jesus’ Name we pray.

A Prayer for Those Who Love Mattie
Lord it is all out of order.
Death belongs at the end of a long life not at its beginning.
It is to be the silent tribute to the aged not the violator of youth.
This is all wrong.
But cancer is a cruel enemy of life and love and all that is joyful.
It brings death where it does not belong and it breaks our hearts.
Can it also break our hopes?
Can it destroy more than the physical life it claims?
Can it blind us to your presence in this awful moment?
Make our faith strong enough to answer NO.
Make our faith wiser than our feelings
Deeper than our despair
Sharper than our anger
And more powerful than our sense of helplessness.
Let us thank you for the light you give us in this dark place
The light of companions in their multitudes
The light of promises of stunning hope
The light of strength to bear the unbearable
The light of excruciating love for this child.
Help us to use these to illumine our path, still our fears, open our hearts and heal our violated love. In Jesus’ name we pray.