Tonight's picture was taken when Mattie was two months old. At two months, Mattie scared me half to death. He was making gasping sounds. I thought he was having trouble breathing. I was worried, because he would periodically make a wheezing sound. When Peter got home from work, I was so worked up over this sound, that I called Mattie's pediatrician. The pediatrician asked me all sorts of questions and really had no explanation for what I was hearing. She did say if it persisted to take Mattie to the emergency room. Do you want to know what the sound was?????? It was Mattie's first attempt at laughing! At a young age he was a character, and probably thought I was absolutely hysterical to watch as I was working myself up into a anxious fit. Once we figured out it was laughter, I am not sure who laughed more.... Mattie or myself.
Poem of the day: Hugs From Heaven by Charlotte Anselmo
When you feel a gentle breeze
Caress you when you sigh
It's a hug sent from Heaven
From a loved one way up high.
If a soft and tender raindrop
Lands upon your nose
They've added a small kiss
As fragile as a rose.
If a song you hear fills you
With a feeling of sweet love
It's a hug sent from Heaven
From someone special up above.
If you awaken in the morning
To a bluebird's chirping song
It's music sent from Heaven
To cheer you all day long.
If tiny little snowflakes
Land upon your face
It's a hug sent from Heaven
Trimmed with Angel lace.
So keep the joy in your heart
If you're lonely my dear friend
Hugs that are sent from Heaven
A broken heart will mend.
Tonight's poem, "Hugs from Heaven," captures my attention because it rightfully points out how vital nature becomes when grieving. Because I feel desperate to find a way to connect with Mattie, and of course I know I physically can't, I feel compelled to observe the full "Mattie" moon in the night's sky, to experience the gentle breezes that cause Mattie's wind chimes to twinkle, to see the delicate and ethereal fluttering of butterflies, to hear the birds singing, and even watch the forget me nots planted grow. In these beautiful aspects of nature, I see and feel Mattie. I always appreciated my natural surroundings, but now these things are not only esthetically pleasing, but they are spiritually needed.
I stayed home this morning and went through paperwork, and I am working on getting ready for my DC Licensure Board meeting on friday. The DC Licensure Board of Professional Counselors meets monthly. As the chair of the board, I have been absent from this position since July of 2008. Clearly the board could have just replaced me, but they did not. Instead, they have been extremely supportive and have given me as much time as I needed until I felt ready to return. I am not sure I am ready to return on Friday, but I know how much this position has meant to me, and how important it is in guiding the practice of professional counselors in the District of Columbia. At some point in the morning, I took a break and went down to our complex's front desk. At the desk were several packages awaiting us. Many of which came over the weekend. In time for Mattie's birthday.
Peter and I received a beautiful basket of daffodil bulbs from Kristen, Mattie's oncologist and now our friend. Kristen deeply understands our loss, as is evident in her writings each Tuesday. The day of the week that Mattie died. Kristen wanted us to know she was thinking of us on April 4, and wanted us to plant the bulbs, so that each spring, we would be have these beautiful flowers to remember Mattie. I was deeply touched by this gift. The second gift I opened was from Denise, Mattie's social worker at Georgetown University Hospital. Denise sent us a gift that was wrapped in a beautiful circular box, with a lovely silk flower and butterfly on it. Inside the box were seeds to plant in our garden that are butterfly friendly, so we can attract butterflies to our flower boxes. Both gifts today made me smile. They made me smile because I could see Mattie's life touched these two people, and they are looking for ways to help us remember Mattie's beautiful spirit. Here is yet another example of our Georgetown family thinking of us and reaching out to help!
I can't help but find it ironic that Ann gave me a book on butterflies on Mattie's birthday, and Kristen and Denise gave me plants that will inspire butterflies to visit. You should also know that the centerpiece I am working on for Abigail's Holy Communion party is a butterfly flower garden. Seems to me that butterflies are definitely significant in my life, and you can rest assure that with each one I see, I reflect on the fragility of life and the beauty of the little boy who once filled my life. I no longer have his laughter, his hugs, his tears, or his physical being, but it is within the graciousness of these butterflies that I see his spirit captured.
I had lunch today with Ann and Dr. Bob. We talked more about the Foundation and ways to generate revenue. Later in the afternoon, I went with Ann to her son, Michael's, baseball game. I haven't attended a sporting event with a child for several years now. My last experience was when I would take Mattie to his soccer practices and games. Watching boys play, made me think of Mattie. It did not make me sad per se, mainly because I think I was so absorbed in the psychology of the coaches, how they instructed or praised the kids on the team, and of course watching the attendees at the game was entertaining.
Peter and I had dinner tonight with Kathleen (one of Mattie's favorite HEM/ONC nurses) and her husband, Tony. You may recall that Kathleen called Mattie her "monkey boy." Mattie was always using "George," the name of his left leg (thanks to Dr. Bob), to fish around in Kathleen's pockets. One day Kathleen decided to put gak (a slimy green substance) in her pocket, and when Mattie's foot went into her pocket, he got quite a surprise. Needless to say he loved it! Mattie liked Kathleen a lot, and one day he called her into his PICU room. Why? She wasn't his nurse that day, but he wanted to give her a kiss and also show her his Curious George balloon. Mattie bonded with Kathleen and many of his HEM/ONC nurses. If it weren't for this special bond, for the fact that these nurses understood our stresses, and treated us with respect and as part of Mattie's care team, we would never have survived 15 LONG months of grueling treatment. In fact, I think if a HEM/ONC nurse isn't willing to get personally invested in their patients, they most likely won't make it in this profession long. That is a bold statement but most likely accurate. Their hours are extremely long and intense, and in the midst of this, they are observing parents who are frazzled and at their wits end. I believe that the connections they make with their patients further motivates them to do their job, but not just do their job, but do it with dignity and skill. Peter and I enjoyed this opportunity to see Kathleen, since at the end of the month she is moving to Kansas City. She may be moving, but the memory of what she was able to accomplish with Mattie will be alive and fresh in my mind.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so sorry that you had a difficult day yesterday. Perhaps it was made worse because this physician is one who usually seems to understand and empathize with where you are. We come into those situations much more vulnerable than we would be if we expected poor personal treatment. I am glad that you had Ann and Alison to hear you out and that Peter also could be a sympathetic, understanding “ear.” Perhaps someday you will get to teach GWU medical interns about how to treat, talk to and really listen to their patients. I am sure you are working on all the doctors you already deal with and that they are growing and improving their personal skills as a result. One can only hope. As the weather warms up and our gardens bloom I hope that the seeds of serenity I wish for you also begin to bloom. I hold you gently in my thoughts."
The second message is from Mattie's social worker at Georgetown University Hospital. Denise continues to be very supportive of Peter and I, and writes to us on a regular basis. Denise wrote, "I did not want the month to go by without checking in and letting you know that I am always thinking of you both and Mattie. Time is funny how it can seem to go by fast yet slow at the same time. It hardly seems like six months have passed since we lost "our" dear Mattie. I say "our" because the team that cared for him have all pretty much adopted him as our own. Everyone still talks about him and their personal struggle in coping with the loss and missing the both of you, so please know that you are not alone. I find it comforting to look up from my desk and see his bright smile in the pumpkin patch picture or his signature on my little wall of "fame"(patient's whose talents I thought would make them famous one day). Then, there are the reminders of Mattie's days at Georgetown. I had to go to the playroom one day last week and I think it was the first time that I have been in it since Mattie was here. It seemed very different. He really knew how to command an audience and hold court:). I know this walk is difficult for you and it is one no parent wants to take. You may not see it right now, but as I have said before you are giving such a gift of hope to so many others who may be traveling this journey too. I admire your courage to share your pain with the world. That is not an easy thing to do. I do hope it gives you strength and comfort to know that so many people care for you and have come to love you. I still hurt for you and for Mattie and for all those who were and are affected by his lost. Yet, I feel so tremendously blessed to have known him and to have you all be part of the fabric of my life. I have put March for a Miracle on my calendar and hope to attend. I know that Mattie's birthday is coming up on Sunday. I can't imagine how difficult this must be for you. I just want to say, he lived with purpose and touched many lives in a very profound way. He was a blessing to each of us leaving us with some special part of himself. He's your angel and he is watching over you."
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