Saturday, September 12, 2009

Saturday, September 12, 2009

Mattie at age 5, feeding parquets at Butterfly World in Florida. I love his facial expression of fascination!

Poem of the day (Thank you Dr. Shad!): When you feel Lonely


When you feel lonely
When a person you love passes away
Look to the night sky on a clear day.
The star that to you, appears to be bright
Will be your loved one
Looking down upon you during the night.
The light of heaven is what shows through
As your loved one watches all that you do.
When you feel lonely for the one that you love
Look to the Heavens in the night sky above.


Sleeping continues to be a challenge for Peter and I. Our bodies are still programmed to stay up late and not sleep through the night. In fact, I can't fall asleep without taking Tylenol PM. Without it, I am just UP! I am up and yet there is NO little person to take care of. I miss tucking Mattie into bed, reading stories, hearing him sing, hearing him boss me around, and of course watching him build and create.

I spent the morning going through funeral readings and music selections, while Peter was picking up Chris, his brother at the airport. Peter and Chris hung out today, ran chores, watched movies, and even visited Frank, the owner of the Magic Gourd, our local Chinese Restaurant. I am happy Peter had this time to get out of the house and had a good diversion from our daily level of sadness. In the afternoon, I decided to get my hair cut, something I haven't done in a while. Each time I see my hairdresser she comments on my level of stress, based on the texture of my hair. Amazing how even hair, can take on a life of its own during times of stress. I told my hairdresser about Mattie, and she was upset, but of course was unsure how to react or what to say! After all, what can you say that will make a person feel better who has lost their child to cancer? Normally I am very chatty through my haircut, but today wasn't one of those days. Today, I just sat there with my eyes closed. During this time, I could over hear conversations people were having around me. These were conversations I really couldn't relate to anymore, and in a way, Peter and I have been so isolated over the last 13 months that in a way, it feels as if we have been living on a different planet. Our planet however is not hospitable, and I really wouldn't welcome you to experience it. It is an environment that changes you physically, mentally, and emotionally for a lifetime.

Later this afternoon, I had the opportunity to run some errands for Ann. Ann's dad continues to progressively decline, and as I told her it provides me great happiness to be able to help her. I can't say that much of anything brings me happiness these days, but getting out of the house, and feeling like I am helping someone special to me, is very therapeutic. Helping Ann with her dad makes me feel like I have a sense of purpose and provides me with a diversion from my typical state of deep and profound sadness. While visiting Ann's parents, Ann's mom and I had a nice chat. Mary is deeply sorry about Mattie's death. We commiserated over the loss of our sons for quite some time, and then toward the end of the evening she was worried that I had to drive home in the dark. She said she worried about me because I was a very special friend of hers. Despite Mary being worried about her husband, I find that her genuine love and concern she has about Mattie and myself is deeply touching.

While I was out today, I had the opportunity to watch several parents with their children. I guess my perspective on child rearing has changed. I heard one mom yelling at her child. She lost her patience with her daughter, and at one point after yelling started to walk several feet in front of her child. The little girl couldn't have been more than 8 or 9 years old. I am not judging the mother at all, because our children do try our patience, but I guess all I could think of is that she was lucky enough to have her daughter alive and well. That if she thought for a split second that her daughter may die tomorrow, I have a feeling, this would greatly alter the behaviors and actions she performed before my eyes. Experiencing the death of a child opens up your eyes to a new world. A world in which the little things no longer matter, and problems that are really fixable, are really NOT problems at all.

It is funny, at one point today, Ann and I were talking on the phone and lemonade was literally being spilled all over her car. I am sure Ann thought I was nuts, but I started to laugh as she was describing this. When she asked me why, I said that spilled lemonade, though not pleasant, is a good problem to have. It means that she has her children with her and they are healthy. Something I wish I could say, THAT MATTIE WERE ALIVE AND HEALTHY, and at times I still have trouble believing Mattie is dead. As I told Ann, I am happy to serve as anyone's reality check!

We would like to thank the Coker family for the beautiful gerber daisies (one of my favorite flowers, because they are SO happy looking), and for the wonderful and generous dinner. Thank you Carolyn for your friendship and continued support.

I would like to end tonight's posting with five messages. The first message is from my friend, Charlie. Some of you have asked me how I know Charlie. Charlie is a former student of mine and I am touched that she has journeyed this year with me, and is committed to helping me through her writing. Charlie wrote, "Mattie died as he lived, with determination and the heart of a warrior. I cannot begin to tell you how many emails I received from the Transporters, the Lafayette Alumni, some of the GWU cohort students all expressing their sorrow at Mattie's passing. Truly he touched so many hearts around the world. He will always be remembered in people's hearts and thoughts. I won't tell you not to feel guilty about what you can do now that Mattie is gone. This is part of the grief process. You are Mattie's mom (nothing will ever change that) and his advocate to the very end; there is no one who has raised a child who could have done more than you and Peter did for Mattie. What you did in letting him go was an act of courage and love that some people refuse to do. It is so telling that Mattie fought not to leave you right to the end; he loved you both so much that he was willing to bear an amazing amount of pain to remain with you. Only a child who is secure in love would want to do that. I will be here with you to help in any way I can, just as many others are. Just reach out your hand or your words and help will be there. We can't take away your pain but we can walk through it with you. Many thanks to those who helped in Mattie's final night; angels come in all sizes and disguises."




The second message is from my colleague and friend, Nancy. Nancy wrote, "Today was such a profound day of grieving, second only to your terrible day on Tuesday. I am so moved by your words, Vicki, and your amazing ability to bring so many of us close to you and span the miles between us. I never got to meet Mattie and yet he is a gentle reminder of how precious life is to me. I understand how you can question all these months and have been in awe of how you handled this very difficult, demanding, and challenging 13 months. Each day I learn a bit more about the ways in which Peter and you loved and protected your son. In spite of all the pain and uncertainty, you advocated for him in the best way possible, no matter how intrusive the procedure or the hospital staff.Your last few entries are the beginning of another phase of love and protection for dear Mattie. I am so glad that you have included pictures that show him at other stages and times of his life. It only increases my appreciation for his specialness. I know that you will miss Mom and Dad during these next few weeks and am glad that they were here for all these weeks and especially to protect both of you during this darkest hour.The poems that have been included the last two days are so beautiful. As with our Kaddish ( the mourner's prayer) they focus on life. They mention death but it is the essence of existence and the ability to realize that our loved one's are never very far from us. We may not be able to hold them, but we can remember them, we can talk to them, we can write to them, we can picture them close to us always. Yesterday you asked if someone was watching over Mattie and was he happy. I know that he misses Peter and you as you miss him. What I believe is that he is with your Grandmother and your uncle. They will watch over him until the time when you will all be together once again.I want to end with this poem that I wrote tonight. When I was teaching, I worked with 8 and 9 years old. I wanted them to experience the joy of being able to express themselves and found that an Acrostic poem was a good vehicle. I hope that I have captured Mattie's essence and if there are places that are not right, please excuse me.





Memories of a fighter to the end
Asked many important questions during these last months
Taken too soon from everyone who loved him, knew him
Trusted and loved his Mommy and Daddy
Inspired so many to care more deeply about family and humanity
Enveloped by the angels, his great uncle and grandma, and kept safe for eternity.





I think Mattie would want to know that Peter and you are being taken care of now. He would want you to be okay, to take care of yourselves, because he knows that you will always be a family. Exhaustion is a good thing as we must sleep even when we don't want to. I am so sorry that you have had to experience this deepest loss and will continue to keep you in my prayers and especially in my heart."






The third message is from a friend of my sister-in-law's, Lisa. Though I have never met Lesley we have a lot in common. Lesley wrote, "My eyes are swollen because I can not control the tears for this child I have never met. Your family has made such an impact on my family. Mattie has been so brave and strong and as I read your words allowing him to let go, it is so clear he was taught by the best. You and Peter have been selfless and never forgetting your goal...to protect Mattie. Your family has left a legacy to the PICU, your readers, and every child because you have showed us that everyone one deserves and needs parents that never give up. I do not know if I knew how to be that parent last July but I have listen closely to your words and actions and I thank you both for being such a great teacher. My heart is so heavy with sadness for your entire family. I continue to feel compelled to write to you but you do not need to respond...ever. As the blog has shifted and the rawness of your grief is shared, we continue to weep for your entire family. I do not think I have seen these size tears since I was a child. I am happy that you are giving yourself permission to conclude the blog or continue it as you please. While you have so many readers that care so deeply about you, your privacy and well being needs to be the top priority in whatever you choose. I just shared with my husband that I am no longer innocent and live my life unaware. In many ways, you made many of us "step up." I take great effort in trying to understand another person's perspective. In terms of my work, I no longer find the parent who endlessly advocates for their child to be exhausting. You shared that you are spending time thinking about how to remember Mattie. I clearly never met your beautiful son, but I want you to know he has changed me possibly more than anyone....and I think only for the positive. I think will see Mattie in everyone because of your family's impact. He is living in all of us and we are forever changed because we learned about being gracefully brave and loving through you. My deepest sympathy for your entire family."

The fourth message is from a fellow SSSAS mom who I have had the good fortune of getting to know this year. Kathryn wrote, "I am so desperately sorry that the end of Mattie's valiant and truly inspirational battle is coming to an end. You have been everything to him and have done everything humanly possible to help him throughout his fight to a dignified death. He is an amazing presence and light and has changed all of us forever, even those who met him only through your blog. He will always live in your heart, soul and the very marrow of your bones. Yours is a bond that death does not have the power to break, even as it ends the wonderful contact of daily life. Mattie is a glorious shining star and we will join you in doing everything possible to keep his star glowing and fight for others on his behalf against this horrific disease. The idea that vital, lively, gifted, glorious Mattie is being taken from you is more than anyone can or should have to bear and yet you are while focusing on his comfort. You and Mattie have made a powerful impact on the lives of all those who have come in contact with Mattie and you from the wonderful doctors and staff at Georgetown PICU to your RCC and SSSAS families to your work associates and all who have read your blog. As i said before we are not the same people we were before meeting you. It is a change similar to the one cancer wrought in my own life. The priorities that really matter become center stage- compassion for others and enjoyment of life's small blessings like warmth of the sun on our faces. I believe I told you earlier that I call them "Mattie moments" in honor of your wonderful son. I offer my continued support, prayers and anything else you might need in this time of tortuous loss. We love and grieve for and with you."

The final message is from a fellow RCC mom and friend. Grace wrote, "Words simply can't express how sad we are right now. It's difficult to understand why God saddled you and Peter with such a difficult and devastating journey. Perhaps it's because you are so strong. I think history will indicate no other parents who fought so completely, so valiantly for the life of their child. And it's this strength that will carry you through the difficult road ahead--that and team Mattie, and all who care for you. Your focus will be different, but your tenacity will be the same, and great things will come as a result of it. You've mentioned doubts in having a meaning and purpose in life after Mattie moves on. Please know that you will. You will go on with great purpose--it may not be clear now, but I promise, it will become clear, and we will help you find it. We're not going anywhere. You have helped us find meaning in life, now it's our turn to help you. And know that you will always be a mother. I'll never forget when John said to me one day, "Mommy, I love you, but I like Vicki the best." You have been a mother to us all. I can speak first hand from being on the receiving end of your kind, caring gestures, gestures only a true, caring mom is capable of. "