Wednesday, November 18, 2009

Wednesday, November 18, 2009

Tonight's picture was taken by Mattie's first preschool teacher, Margaret. I happen to love this picture because it captured Mattie watching a science experiment in the middle of the PICU hallway. The experiment was being conducted by members of the Georgetown University Chemistry Club. The experiment involved taking a rose (you can see Mattie is holding a rose and smelling it), dipping it for a couple of seconds in dry ice, and then immediately tapping the frozen rose on the floor. This would cause the frozen rose to shatter into thousands of pieces. Mattie and the other kids were fascinated by this process. This picture was taken after Mattie's first limb salvaging surgery, and despite his pain, he bravely found his way out of his room and into the hallway.

Poem of the day: EMAIL FROM HEAVEN by Laurie J. Crist


Night had fallen and it was time for bed,
As usual I couldn't sleep, so I prayed instead.
Dear God, I said, I miss my son
But as always, dear God, thy will be done.
I said the words but still I wept,
Then tears were done and finally I slept.
Deep in slumber I began to dream;
It was so real as night visions can seem.
I saw a line standing at Heaven's gate
And a sign that said: Here you must wait.
"Wait for what?" they all cried in dismay.
"We were good; we deserve to go this way!"
But St. Peter waved a hand and smiled at the crowd,
Please settle down, don't shout, not so loud.
And then he explained, before they filed through
That they had a small task he needed them to do.
One by one in a line you may now come along
And register for our website, Heaven.com.
Please give me the screen name of your choice;
Your email address will be @angelsrejoice.
In my dream I awoke and turned on my computer
One email subject said: Your heaven.com tutor.
I opened it up and read my email in wonder;
Surely this must be a joke or a blunder
For there in mail it clearly was stated
That for a reply my son now eagerly waited.
It told me just how I could write my sweet boy;
Now down my face ran a mother's tears of joy
So I answered my mail and then got one in reply:
Dear Mom, it said, I'm sorry I never said goodbye.
But you know that I love you and I always will.
I wish that I could be with all of you still.
But this place is so beautiful, and so serene.
Hard to explain but I know you know what I mean.
And, Mom, I know that in forty or fifty years
You'll be here with me, so Mom, please, no tears.
In the meanwhile, send me an email now and then.
Let me know all the news and how everyone's been.
Until you are here and we are together once again,
Your son in God's light, bless you, Mom, and amen.
I awoke then and knew that I had been sleeping.
My wet pillow made it clear that I had been weeping.
But how I smiled to think if only it could be true,
To hear from my son, and others who had passed, too.
But somehow I feel that my son used this way
To let me know he was fine, and that, everyday,
He is there with the Lord and the angels above.
He sees me from there and he feels all my love.
And although I miss him and will always feel sad,
Somehow a part of me also feels glad.
For I am sure now that he visited me in a dream;
It would be so like him to go to that extreme!
Knowing his mom spends so much time online -
How like him to use a computer as a sign!
So he has the last laugh and someday I can say,
Oh, my son, how you managed to brighten my day!
Wouldn't it be wonderful if this only were true?
That heaven had email and even IMs, too?
But still we can do it the old-fashioned way:
Get on our knees, bow our heads and then pray.


I had the opportunity to visit the Lombardi Clinic today at the Georgetown University Hospital. This is the clinic where Mattie did his outpatient MTP-PE treatments, where he had his doctor's visits, and of course where he would start out every visit before being admitted to the Hospital for treatment. Some things do not change, namely parking. It was hard to park when Mattie was undergoing treatment, and the parking situation today seemed even worse than ever before. Outside the Lombardi Clinic entrance, I met up with two of Mattie's HEM/ONC nurses, Katie (aka, Dorothy from the Wizard of Oz, because Mattie liked Katie's red shoes), and Erin (Mattie and Erin had a deal, with each hug he would give her, she would supply him with large syringes to squirt water). Both Katie and Erin were not wearing their hospital scrubs, so in essence they came in today just to see me, and to spend time in the clinic with me while I was beading. That alone is such a lovely, heartfelt, and generous statement. Since I know the long hours they work, the fact that they would come in on a day off, meant a lot to me. Through our conversation, I learned that Katie no longer works in the PICU. She left her job, and is now going to work full time in the Lombardi Clinic. This is a loss to the HEM/ONC patients in the PICU, but Katie is very much needed in Clinic. The atmosphere in clinic is VERY different from the inpatient floor. There is a level of clinical coldness, insensitivity, and it is hard to connect with the nurses in Clinic. It is my hope with Katie's presence, things will change since she has such a warm and caring demeanor. As for Erin, Erin too is no longer working in the PICU. She is now working with general pediatric patients, who are housed in the transplant unit. Not having Erin in the PICU also seems like a loss to me. Erin was the first nurse to teach me how to change Mattie's central line dressings, and was also incredibly supportive of us, especially during times when we clearly needed it. Which seemed often!

I also had the opportunity to see Jey today. Many of you know that Jey was Mattie's favorite CT tech, and he also considered himself Mattie's big brother at the hospital. Jey gave me a big hug today and told me he thinks of Peter and I each day. He took his hospital scrub off his head to reveal to me that he shaved his hair off in Mattie's honor. What can I say! Mattie would have been very excited over this gesture. Jey told me that he has applied to switch jobs within the hospital, from CT tech to security. I can't help but truly believe that many of the people who worked with Mattie were deeply, deeply affected by his death. So much so that working in their usual job is not only uncomfortable but difficult for them. Jey said he no longer gives 100% of himself to the children he works with. He felt guilty saying this, but as I told him, it made sense to me. He is protecting himself right now because he is grieving the loss of Mattie. Somehow giving other children this level of attention could make him emotioanlly vulnerable again or perhaps it even feels disrespectful to connect on this intense level right now after losing Mattie. In either case, I told Jey that he has nothing to feel guilty about. He is just being human, having real feelings, and I am deeply touched to see how Mattie's presence is still remembered and felt in those who cared for him. I also briefly saw Denise, Mattie's social worker. She joined us at the bead table, but unfortunately she was needed by other families, so she was unable to stay with us long. Denise has been incredibly supportive of Peter and I, and sends us e-mails which I find very helpful and meaningful. Linda also came by to say hi, but today there was a big delivery of toys to the PICU, so Linda had her hands full. The Hospital received many big deliveries last year over the holidays. I remember this fondly, because Mattie would get so excited. He enjoyed helping Linda open the boxes of toys, sort items, and earmark things he naturally wanted for himself. It is hard to believe that he is no longer around to open a present or LIVE his life like a typical child.

Deborah, the bead lady, was nice enough to come into Clinic to meet with me today. I brought her the necklace and bracelet that Mattie made me which needed repairs. Deborah helped me with both items, and she also gave me the time to create another piece that I have been wanting to make for the longest time. Katie and Erin (Mattie's nurses) were sitting with Deborah and I, and they created their own bracelets while we were talking. Deborah was talking about how she is now going back to school and changing professions, which led to the conversation of life plans. She explained that she likes to live her life according to a plan. I concurred with her, but then I said sometimes life doesn't go according to plan, and then what? How do you handle that? What if it not only doesn't go according to plan, but it goes haywire and you lose a child in the process? Deborah was honest in her response, which I appreciated. She said that she doesn't know how she could live her life if she lost a child. That this is something she can't even imagine. That was the perfect response, because that is exactly how I feel.

I stayed about two hours at the Hospital. However, when I was leaving, I felt an empty feeling come over me. I think I was hoping by visiting the Hospital today I would somehow feel closer to Mattie (as I walked many of his paths today) or that I would feel like I was part of something. Connected to a community, connected like I used to be. What I learned instead is that I feel as if I no longer fit in anywhere. The healthy world for the most part hasn't gone through 13+ months living in a PICU only to experience the devastation of losing a son and therefore, I do not feel like I can re-enter this world fully. But what surprised me is I no longer am part of the cancer culture either. I do not have a sick child to care for, nothing to tie me to the Clinic or the PICU for that matter. This was a revelation today that was a little harder to accept. I can equate this to moving to a new house/community. When you move, everything is foreign to you. You clearly do not fit in yet within your new neighborhood, school, or workplace. However, with every new situation, you grow and change in your new environment. Then when you try to revisit your former home or neighborhood, you quickly realize you do NOT fit in there anymore. You have changed, your outlook or priorities are different. Your former world hasn't evolved with you, and then you feel like you are in a quandary because you aren't comfortable in your old or new world. I have moved around several times in my life, so I understand this transitional feeling well. However, now this feeling is on a much grander scale, because I am not simply talking about not fitting into the physical world around me, but it is more of an existential crisis, where I wonder if I am so profoundly different that I can't be happy anywhere or relate to others in general.

This evening I was invited out to dinner with Jerry and Nancy. Jerry and Nancy were the dynamic musical volunteer team at Georgetown University Hospital. Mattie loved them, and played many "name that tune" games, and even won a prize for his ability to guess the tunes. What Mattie never knew though was that Jerry and I always rigged the contest. I would e-mail Jerry a list of guarenteed songs that Mattie knew ahead of time. We all had a great time watching Mattie smile, become animated when he identified a song, and then of course would beam if he actually won a prize. One time, Mattie was so energetic, he had everyone, and I mean everyone doing exercises in his room to the music. We had nurses joining in, as well as Nancy and myself. That was a night to remember! Nancy and Jerry helped jog my memory tonight. I had a lovely dinner, and spent the entire time reflecting on Mattie's amazing, but too short life. Jerry told me that I created a legacy already. My legacy was giving birth to Mattie, a boy who touched lives profoundly in only seven years. That brought a smile to my face. Jerry and Nancy signify the happier times we had at Georgetown. Because when Jerry and Nancy were allowed into Mattie's room, that meant he was having a good night. They saw Mattie's humorous, fun, and spirited side, which they reflected on tonight with me. Hearing these stories about Mattie is so important to me, because my current recollection is Mattie dying and in tremendous pain. Sometimes it is hard now for me to step outside my social comfort zone now, but I am happy I ventured out tonight with Jerry and Nancy.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It is very difficult these days with Christmas everywhere. My mother passed away in the month of Dec and I know what it is like to be surrounded by all the holiday music, decorations and festivities and not feel at all festive. And Christmas is not my holiday although I always looked forward to attending the parties when I was in the military and seeing everyone dressed up and having a good time. I went to the ones I could not avoid and I wore more somber clothing and a mourner's ribbon all through the season so that I could point to it and have some relief (take a break or leave when I needed to). Perhaps this is something that would be helpful to you or perhaps you need to avoid the parties altogether. Do what is right and what works for you. I am so glad you have Mary and Ann to turn to, they clearly understand where you are coming from and can support you so that you don't have to be isolated and alone.I hope the trip to Lombardi Clinic is fruitful, be prepared to cry as restringing the beads will be very emotional. Perhaps you can make some sort of memory necklace/bracelet or chain as I did; I found it very cathartic for me and I am still carrying it around with me (in my purse) and I look at it daily. Today, I hope you find some comfort in working and visiting with the Lombardi personnel who also appreciated Mattie's place in our world."