Friday, December 18, 2009

Friday, December 18, 2009

Tonight's picture, like last night's, was taken in December 2007 at the US Botanical Gardens in Washington, DC. Behind Mattie you can see a miniature version of the US Capitol. This structure is made completely from plant and tree parts. Visiting the gardens was something Mattie enjoyed doing during the holiday season. As we have one more week until Christmas, my goal is to share a Christmas themed photo of Mattie with our readers each night.

Poem of the day: What a Grieving Mother Really Thinks by Kelly Cummings

Hello, Old Friend,

Oh, yes, you know

I lost my child a while ago.

No, no please

Don’t look away

And change the subject

It’s okay.

You see, at first I couldn’t feel,

It took so long, but now it’s real.

I hurt so much inside you see

I need to talk,

Come sit with me?

You see, I was numb for so very long,

And people said, “My, she is so strong.”

They did not know I couldn’t feel,

My broken heart made all unreal.

But then one day, as I awoke

I clutched my chest, began to choke,

Such a scream, such a wail,

Broke from me…My child! My child!

The horror of reality.

But everyone has moved on, you see,

everyone except for me.

Now, when I need friends most of all,

Between us there now stands a wall.

My pain is more than they can bear,

When I mention my child,

I see their blank stare.

“But I thought you were over it,”

Their eyes seem to say,

No, no, I can’t listen to this, not today.

So I smile and pretend, and say, “Oh, I’m okay.”

But inside I am crying, as I turn away.

And so my old friend, I shall paint on a smile,

As I have from the start,

You never knowing all the while,

All I’ve just said to you in my heart.

I was e-mailing my friend and colleague, Nancy, last night. She mentioned in her e-mail that she is so impressed with our support system. She reflected on the fact that in many cases, most friends move on weeks after a loss, expecting that things will return to normal for the bereaved. In my case, I am fortune that people haven't "moved on" or have expected me to "move on" either. I am not sure why we are so lucky, but I am very grateful. Maybe because I write each day about our thoughts and feelings, maybe because Mattie's life touched a corner of your heart, making it impossible to forget him or our situation, or perhaps for those of you who have lost someone dear in your lives, you can relate on a very real and heartfelt level to what I am expressing. In any case, I wanted to make sure our readers understood that the sentiments reflected in tonight's poem, do not necessarily speak to how I am feeling about the support I am receiving. I value the e-mails and cards, and I am a blessed person to have Ann and Karen in my life. These women e-mail and text message me at all hours of the day. In fact, after being SO angry from the support group last night, I was text messaging Ann until 1am. This may sound cute, this may sound touching, but the messages I receive from Ann and Karen most days help me get out of bed and function. These messages are vital to my day to day existence. It is important to understand that I may look okay and put together, but that is not representative of how I am actually feeling!

For both Peter and I, we constantly have people who come up to us and give us feedback about how good we look. I am not sure how others expect us to physically present ourselves. However, because I take a shower, put on clean clothes, and wear makeup, I assure you this isn't an indication of how I am internally feeling. Keep in mind that I tried, with the emphasis of TRIED, to look physically put together each day that I lived in the PICU. Therefore, what I am getting at is, when interacting with someone who is grieving, don't judge us by our cover. Also most likely if we say we are fine, we aren't really fine at all! Tonight's poem evoked these feelings within me, and I felt the need to share them.

I met Brandon (Mattie's big buddy) and his mom, Toni, at the Georgetown University Hospital today for lunch. Coming on campus wasn't as traumatic as the first visit. Each successive time it becomes easier, yet I have not made it up to the PICU floor. I know I am not ready for that, yet I would love to see all the nurses. I had a wonderful lunch with Brandon and Toni. I am happy to report that Brandon has NO EVIDENCE OF DISEASE, and he is one year out of treatment, and just completed his first semester of college. Brandon holds a special place in my heart because Mattie gravitated to him and considered him his "best friend" at Georgetown. While at lunch, several of our Georgetown friends stopped by to say hello. I first met up with Ashley while ordering our food. Ashley is a PICU nurse, and originally from Massachusetts. She is a Boston College graduate as well, and between that and the Red Sox, my family always had a lot to talk to her about. She is as beautiful as she is competent, and Mattie really liked Ashley. One night, and I use the term night loosely, maybe 1am, Mattie pressed his call button in his PICU room. On the intercom, he specifically asked for Ashley to come to his room. When she arrived, she did not even make it into the room, because Mattie had a remote controlled jeep that greeted her in the hallway. Attached to the jeep was a blown up rubber glove, which looked like a turkey. The message written on the rubber turkey read, "I love you Ashley." Needless to say, Ashley's heart melted, and somehow this inspired Mattie to make more turkey balloons, and then he invited all the nurses into his room for a 2am special visit. I took a picture of Mattie on the left, surrounded by his turkey balloons that night! I remember that night like it was yesterday, especially the energy Mattie produced and invoked in others. It was lovely to see Ashley, and to reconnect with her. We reflected on the turkey balloon story that I am sharing with you, and it brought a smile to our faces.

After seeing Ashley, I then was greeted by Denise, Mattie's social worker. As the afternoon went by, Linda (Mattie's incredible childlife specialist) and Jenny (Mattie's amazing art therapist) stopped by to see me. Denise told them I was on campus. As my readers know, Linda and Jenny mean a great deal to me. These women kept me sane, during some very insane, stressful, and mind numbing days in the hospital. Mattie loved them, but so do we. I shall never forget their kindness, skills, and love for my family. Linda contacted several HEM/ONC nurses and let them know I was on campus, and within minutes, I met up with some incredible ladies. I got to see Katie (AKA Dorothy - named for her beautiful red shoes which Mattie loved so much), CR (who is now back from her peace corp trip!), Catherine (our case manager), Miki (a fabulous HEM/ONC nurse who reads Mattie's blog each day, and recently sent me a beautiful orchid plant), and Tricia (an amazing HEM/ONC nurse, who helped me in incredible ways).

Sometimes I wonder if these nurses think about us in the same way we think about them. I answered my own question today. The answer is a resounding YES! These are remarkable women, and it is clear that Mattie will never be forgotten by them. In fact, Catherine, Mattie's case manager told me today, that she can't walk on the PICU floor without hearing Mattie's voice and feeling his presence. That made me smile. Tricia and Miki told me that not a day goes by where they are not thinking of me, and praying that we get through this. In fact, Tricia told me she had to take a break from reading the blog for a while, because Mattie touched and impacted her life that deeply. Tricia started crying, and I was right along with her. Tricia saw Mattie during some of his worst and best times, but in the end he did love her, and he told her as much. I will never forget that day, Mattie came back to the PICU after playing in the childlife room for an hour or so. As I was wheeling him back to his room, Mattie screamed out for Tricia through the PICU hallway. Tricia came running over, and none of us knew what he was going to say. After he got her attention, he then said to her, "you know I love you!" I don't think any of us forgot that special moment, especially Tricia.

Tricia has three wonderful children, who I got to know about from living in the PICU. However, like most full time moms, there is rarely time to go out to dinner with just your husband. Tricia was saying that when they do have a night out, they sometimes feel lost because they are not dealing with issues related to their children. This is a feeling ANY parent can relate to, and this feeling really doesn't need any further explanation. Somehow though I began talking without realizing it. I told everyone that this is now the feeling Peter and I have every minute of every day. This feeling of being lost and directionless. Except for us it doesn't last a couple of hours while we go out to dinner, instead it is for a lifetime. Mattie filled our world and our time. As a couple we united forces to raise and invest in Mattie. Now that Mattie is gone, we are struggling to redefine ourselves individually and as a couple. I could clearly see that my analogy got my point across quite effectively.

As I mentioned earlier this week, Peter and I actually have a social calendar. We have gone out almost every night this week. Tonight, we met up with friends of Peter's. I had never gone out to dinner before with John and Jeanine, but they picked a wonderful restaurant in DC called Beck Brasserie, and we had a nice time chatting and sharing a memorable food experience.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Much of what I've read about grief sounds like what you are describing. The closing off from celebrations, the intensity of some feelings and the suppression or dulling of others, all sound like what I've read. Elizabeth Edwards writes, how for many days after her son Wade died she tried to find a way to make it not so, to have him be alive. She writes that she finally realized that the only way to survive was to go on and to accept that there was no way to go back (to before his death) no matter how much she wished to do so. It took her a couple of years to realize that her world had changed and she could not change it back and she had to go on no matter how much she wanted it to be different. I think that is true, but that it takes time to get to that point. It doesn't make the loss any less; nothing could make Mattie's loss any less, but there comes a point when you realize you have to go on without him since the power to change death back to life is not ours. As for the group, give it a chance and remember that you are not there to be a counselor, you are there as a grieving parent and anger is a grieving emotion. At some point you will be further along the path than you are now and perhaps you can help someone else but right now, you can't and you have to accept that for what it is. Hopefully, one or more people or the facilitators from the group can support you where you are now and that goes for Peter as well. Even more today than usual, I hold you gently in my thoughts and I will dedicate the peace of my practice to you."