Wednesday, September 30, 2009

Wednesday, September 30, 2009

This picture features Mattie's favorite form of transportation. Riding on Daddy's back. Mattie is about a year old here and loved to go on walks with us. Prior to the back pack, it was impossible to walk around with Mattie. He disliked how his stroller and his baby carrier confined him! Once he found the backpack he was in love with it. Peter could go just about anywhere with Mattie (food shopping, crowded malls, climbs to the top of lighthouses), so long as Mattie was in the backpack and on top of the world.

Reflection of the day (Thanks Charlie!): Death is not the enemy by Joshua Loeb Liebman

I often feel that death is not the enemy of life, but its friend; for it is the knowledge that our years are limited which makes them so precious. It is the truth that time is but lent to us which makes us, at our best, look upon our years as a trust handed into our temporary keeping. We are like children privileged to spend a day in a great park, a park filled with many gardens and playgrounds, and azure-tinted lakes and boats sailing upon tranquil waves. True, the day allotted to each of us is not the same in length, in light, in beauty. Some children of earth are privileged to spend a long and sun lit day in the garden of the earth. For others, the day is shorter, cloudier, and dusk descends more quickly as in a winter’s tale. But whether our life is a long summery day or a shorter wintry afternoon, we know that inevitably there are storms and squalls which overcast even the bluest heaven and there are sunlit rays which pierce the darkest autumn sky. The day we are privileged to spend in the great park of life is not the same for all human beings; but there is enough beauty and joy and gaiety in the hours, if we but treasure them. Then for each of us the moment comes when the great nurse, death, takes us by the hand and quietly says, “It is time to go home. Night is coming. It is your bedtime, child of earth. Come, you’re tired. Lie down at last in the quiet nursery of nature and sleep. Sleep well. The day is gone. Stars shine in the canopy of eternity.”

Peter and I had a busy day today. We had a meeting with our Mattie helpers at the Georgetown Visitation School, where Mattie’s reception will be held. We want to thank Olivia, Alison, and Tamra for giving up their morning and devoting their skills and energy to this event. These are extraordinary women, and I am honored to have them in our lives. I am even more in awe of their willingness to help us plan this special event, but then again, through Mattie, I found a beautiful, gentler, and kinder world of people than I had previously thought was even imaginable. Mattie has given me a gift of a lifetime…. the beauty of friends, friends who seem to drop things on a dime to help plan a funeral, to listen to us, and to respect our wishes. I don’t consider myself blessed at all, in fact there are days I feel absolutely cursed in life. However, having special women in my life does make me pause and realize despite my inner turmoil, there are aspects of good in the world that just can’t be ignored. After all, these women helped us for 13 months and in all reality they should be tired, but somehow they aren’t. They keep coming back, and their support is unrelenting! I am tired, I am shutting down at times, but I am together enough to realize the beauty of those around me. Seeing these women in action simply gives me hope!

We had a productive meeting at Visitation today. We did a walk through of the space and even met with the caterer, who is an ABSOLUTE delight. Susan Gage runs a big catering business in the Washington, DC area, but is compelled to help us because of Mattie’s story. I instantly bonded with Susan on the phone, and felt that she got the situation, and me, and I am happy that she has agreed to work with us following our budget. It is my hope that our attendees find the event as meaningful as we intend it to be!

After our reception site visit, we then had a meeting with Holy Trinity. The fellow we met with today had a change of tune from yesterday! I saw empathy and flexibility! Typically the church only allows two outside speakers at the funeral, we are having five. I feel it is important for all of you to hear from Mattie’s doctors, SSSAS and RCC directors, and Peter and I. I am happy that this will actually happen. If I accomplish nothing else, I am happy that I got my point across yesterday on the phone. When you are dealing with a family who lost a child, a great deal of understanding and compassion are needed. I don’t care to hear about your busy schedule and all the other things you are trying to juggle. To me they are inconsequential. Lose a child, lose your world, have no direction and purpose and then maybe you can have a half of a clue as to how we are feeling!

Peter and I went out to lunch today at Mattie’s favorite restaurant. The restaurant has a fishpond in front of it, and Mattie used to love to look and feed the fish! We stopped at the pond to reflect, and I even pointed out Mattie’s favorite fish! It is the biggest one in the pond! We talked about Mattie at lunch and we both had moments today when the reality of this horrible situation just hit us. These are not good moments, they are frightening moments, moments when the reality is so horrific that you ask how could all of this have happened and how on earth do you go on!? This is NOT a simple question to answer, and for the first time in my life I realize as a mental health professional that some problems are just NOT fixable. Some pain will last a lifetime, and sometimes you have to handle this pain in your own way and time.
Later today, I met with Mary, Mattie’s technology teacher. Mary is a delightful, bright, and compassionate person who we have gotten to know quite well over this year. Mary sat with me as we looked through baby videos and pictures, and we consider ourselves fortunate to have Mary creating this Mattie video for us. I am excited to see what Mary designs, and I can’t thank her enough for sharing once again her talents and expertise with my family. She is giving us a gift that will last a lifetime, and for this I am very grateful!

As I sit with Mary and Sully this evening, and as I watch Sully (Ann’s dad) slowly fade from his active and lively existence, it makes you pause and realize just how fragile life is. This is a concept I totally did not understand (or took for granted) before Mattie’s death. This is a concept I wish I still did not understand SO well. Nonetheless both Peter and I commented today that death and dying is something that no longer frightens us. We get it well. We have lived it, breathed it, have our child die in our arms and felt it in such a profound way, and because we have, I think it gives us a greater understanding of how family members feel as they go through this life altering process.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Unfortunately, what you and Peter experienced with the church is far too frequent with helping organizations.Somehow people move from trying to assist to "gatekeepers", putting themselves between the person seekingassistance and the organization. While some validation can be required, many make it much too difficult forperfectly valid requests to go through. I am glad to know that you did not allow this situation to stop you from settingup the ceremony the way you feel it should be. On the subject of the bracelet, once again, I agree that Mattie is sendinghis message to you; this time right in front of you so that you will not doubt and think, maybe I did that but forgot as waspossible with the car seat. It also seems to fit his sense of humor and personality to do something like that. I hope the planningfor the service goes smoothly and that you find some comfort in doing it."

The second message is from my sister in law, Lisa. Lisa wrote, "Just a quick note to let you know we're thinking of you. I feel like all I do is think, think, think about Mattie and you two, and wonder how you're doing, and worry. I've been composing a long email in my mind, usually when I'm shuttling from one practice to another, and don't know why I can't sit down and write it. You write every day, Vicki, and I can't manage to string a paragraph together. The long and the short is that somehow, somewhere in all of this, there has to be something. Something good? Don't know that I'd say that, but several people -- our priest during the sermon on Sunday, my neighbor with whom I go running, have spoken of balance and purpose: maybe something this horrible is necessary in order for people to wake up and feel and engage and commit. (Yet reading tonight's blog and the piece about the man at Holy Trinity makes me question that...) I think what both were saying reflects what you've undoubtedly heard all year -- sometimes people need tragedy in order to realize their role in making change in the world around them. That sure doesn't make you feel okay about giving Mattie up for that cause, I'd bet. Nor should you. All year I've struggled to identify the gifts with this horror. While some are clear - friendships defined and strengthened; being welcomed into the family of others who fight cancer; the awareness of community; the beauty in even the most miserable, stressful parenting moments; getting to know your amazing nurses, doctors, and support staff -- others elude me. But many times a day, I'm reminded of your most generous gift to all of us: appreciate every moment. Life turns on a dime, and we need to parent with love and recognition that these kids are truly miracles to us. Time and again throughout the year you admonished us to hug our kids - so, so true. It matters. As well, you've taught us that relentless advocacy matters. Reading the commentaries from doctors and nurses and all the others at Georgetown sheds light on just how much of an impact you three had -- and continue to have -- there. Every patient going forward thanks you for all the questions you asked, tests and policies you questioned, the refusal to leave Mattie alone at any point, your commitment to aggressive treatment, your Mama and Papa Bear protective instincts. Hopefully future families will benefit from enhanced communication, better coordination of treatment and medicines, and an acceptance that excellent patient care includes the whole patient - his disease AND the rest of him -- and his family."