Tonight's picture captures Mattie eating rice cereal. It was the first food he was introduced to, and loved it. He took to certain foods immediately and his beaming smile was excellent feedback. Mattie never flung food, but his facial expressions were priceless especially when you put food in his mouth that he despised. It was an absolute look of pain, and the food would come dribbling right out of his mouth. Applesauce was a big culprit. Mattie did not care for it at all! The irony of this picture is that it shows Mattie at four months of age, happy and physically healthy, and loving food. However, through the process of cancer, Mattie became as skinny as a rail, and toward the end absolutely NO food or water were consumed. In essence we watched his body shut down and starve itself.
Poem of the day: I will never be the same again by Scott Tallman
Dedicated to all parents grieving the loss of a child.
My child was called to Heaven today
I feel as if I have lost my way
The loss taken hard by both family and friend
I know I will never be the same again…
My baby was taken with no reason nor rhyme
There must be someone to blame for this crime
My heart and soul broken this must be my end
I know I will never be the same again…
What did I do wrong God what did I miss
Can my baby still feel my very last kiss
So what am I left with how can my heart mend
I know I will never be the same again…
My mind travels back to the times we have had
So many memories now none of them bad
I thought I had covered it all but then
I know I will never be the same again…
I fall asleep crying tears pouring from eyes
That once watched over my joy and my pride
How can I go on this pain will not end
I know I will never be the same again…
A bright light then flashes I’m leaving my mind
A vision of my baby so peaceful and kind
He tells me he loves me and begs that I heal
I remember his love, his zest and his zeal…
I reach out to touch him if just one more time
Reality hits and I’m torn back to mind
The message was clear my baby has spoken
I shall not continue with my heart and soul broken…
So I look to toward Heaven and I shout very loud
My darling, my baby, I will always be proud!
I now understand and I promise right then
No, I WILL never be the same again
I WILL accept and embrace this new chance to grow
From the knowledge I’ve gained from the seeds you have sown
I WILL work with others to help ease their pain
So that THEY will never be the same again…
I WILL work to live and love even stronger
I WILL work to heal and not just to wander
I WILL grow stronger with each passing day
I promise my baby I will make it this way…
I WILL always miss you that part I can’t stop
What you have given I will take to the top
My heart is still hurting my baby but then
I now know and accept
I WILL never be the same again…
Mattie died 18 weeks ago today. At 7:15am precisely. The night before he died and the morning of his death are so vivid in my mind. It is like a video tape that plays somewhere in the background of my mind. Why? Not only because it was the day I lost my son to cancer, but it was HOW we lost him. Mattie's room was like a battlefield. There were no guns or tanks, but our weapons were syringes after syringes filled with pain meds. Hundreds of syringes, not just one of two. These were in addition to the two continuous pain pumps that were circulating strong medications like Dilaudid through his veins. By this point, Mattie could bearly breathe, and was on an albuterol inhaler 24 hours a day. The sounds coming from his lungs (as Dr. Shad called it, the death rattle) were inhuman. These are memories Peter and I must live with, this is our reality. A reality of torture. Watching someone you love die in this traumatic way is life altering. I can still remember that day, how people reacted, and basically all the sights and smells. This is not a picture that can ever be erased from my mind, nor will I ever forget that in Mattie's stupor, his last words to us were, "I am dying!" He knew what was happening to him, without us ever telling him. I had NO chance to prepare him, no opportunity to talk with him (because I literally was in denial, until Mattie's nurses confronted me about the issue!), and no real chance to say good-bye. In fact, as I write this tonight, I find that just expressing my thoughts in writing brings me to tears. Mostly because I have so many issues with his death, and the devastating manner in which he left this earth.
I agree with Mattie's oncologist, Dr. Kristen Snyder. Tuesdays come around too quickly. As most of my readers know, Kristen writes to us every Tuesday in honor and memory of Mattie. These e-mails mean a lot to me, as does she. As I told Kristen she is a sentimentalist, just like myself, which is why I am not surprised she acknowledges each passing Tuesday with us. Kristen wrote, "Seven days pass so quickly. It seems just a minute ago I was writing you an email on another Tuesday. And it seems like only yesterday I saw Mattie in clinic racing around looking, by all accounts, wonderful. Somewhere in between he was taken from you (and all of us). There is no rhyme and even less reason. What a dichotomy this time is. Because as certain I am that I remember all this like it was yesterday...I know that your heartache feels like it is something you've carried with you forever. Please know that I am thinking of you...this Tuesday and Always."
I had the opportunity to trade text messages today with Dr. Aziza Shad. As some of you know, Dr. Shad is the head of the Pediatric Lombardi Cancer Center. In addition, she was the doctor on call the week Mattie got so ill and died. Though we worked with Aziza prior to this week, it was within that week, that we were bound forever. Doctors are trained to save people and to get them better, they are not well versed in dying. However, what makes Aziza the amazing doctor that she is, is that she is competent and capable in both. In addition to her competence, she is a deeply feeling person, and I could see that Mattie's death did not sit well with her. She helped Mattie die with dignity, and toward the end dignity seemed impossible. Today Ann contacted me and she told me that a family friend, studying to be a physician's assistant, needed a psych internship working with children. I immediately contacted Aziza. Aziza is in Ethiopia, yet within two minutes, she responded back to my text message and was instrumental at helping me with my request! I may no longer be at Georgetown, but Georgetown will always live in my heart. I reflect on the amazing women I met there and had the distinct honor of working with to help Mattie.
I spent the afternoon with Ann's children while she was out of town. Alison was kind enough to pick up Ann's children from the lower school for me. I still am unable to drive onto the campus. That may sound silly or immature, but I am not ready for this reunion quite yet. Alison and I were like two ships passing in the night today, but it was nice to see her and her son, Paul. Paul and Mattie were buddies and in the same kindergarten classroom. Naturally Paul is two years older from when I remember him, and this made me pause and try to imagine what Mattie would have looked like healthy now?
As I drove through Ann's neighborhood today, I saw a mom taking packages out of her car trunk, and right by her side was her toddler son. I couldn't help but watch this process and feel a sense of pain. It is almost as if I am driving, and yet seeing a flashback in my mind of what my life used to look like. It is a very disturbing scene and yet I have many scenes that play back in my mind in any given day, as does Peter.
The chasing game with Abigail and Katharina continued this afternoon. I was still a big block of chocolate, but I was given the powers to run around the house today. I think I tired the girls out, because at some point they settled down into quiet play.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I loved the picture of Mattie and the explanation. Some children just don't want to miss anything that is going on in the world; they are fully engaged and curious about it all from a young age. I think it is wonderful that we will have another fund raising walk; I think people want to feel they are doing something as well as giving funds to a good cause. It sounds like yesterday was a busy day and you had a good time with the girls; just as Melissa said, I see hope and positive things in what you are doing almost every day. That you are getting out, interacting, and most importantly helping others means you will eventually have a successful journey to a more hopeful place. As I practice today I dedicate my energy to you to help you through the day."
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