Friday, July 23, 2010Tonight's picture was taken on July 23, 2008. I know some of you may be quite familiar with this picture since I have posted it before. Peter and I were basically shell shocked on that day, the day we learned that Mattie had osteosarcoma. I took Mattie to the pediatrician on July 23, 2008, because he was complaining that his right arm hurt from tennis camp. His range of motion was affected, and he couldn't lift his arm up over his head. I assumed he injured himself in camp. I realized it was something somewhat significant because of the pain and his limited mobility, but I had no idea the x-ray was going to show a huge tumor in Mattie's right arm. I should be thankful the pediatrician's office was thorough, or at least was willing to placate me and have an x-ray taken. Mattie had no other major symptoms like a fever or swelling. Or at least NOT the kind of swelling a pediatrician would be skilled enough to flag. To an oncologist, the swelling in Mattie's arm was quite apparent.
Poem of the day: Visiting by Charlie Brown
I keep moving
I keep breathing
But somehow I think
Life goes on without me.
Sometimes I am a sleepwalker
Marching through, untouched
By the daily rhythm that
Other people hear.
Instead I am tuned into
My son's sight and sounds,
And how he felt
And that is all inside.
So when you see me
Far away in thought
I haven't gone far
Just within.
I've gone visiting
The one I can no longer visit
Except in memory
Join me?
July 23 is a hard and complicated day for us. I remember July 23, 2008, like it were yesterday. On that day, I innocently took Mattie to the pediatrician, expecting to hear that he sprained his arm somehow. While the pediatrician was examining him, she told me that at the very least Mattie may need physical therapy to help him regain his mobility. When she told me that, I was taken aback and had issues with that assessment. When I heard the reality of the situation, I wished that I could go back to the initial diagnosis that included just physical therapy. Cancer has a way of putting other things into perspective quickly. I recall helping Mattie jump up on the x-ray machine, so that the technician could scan his arm. I watched the whole process behind a glass window. I was beginning to get annoyed internally with the technician because he kept taking more and more pictures. Being naive, I just thought he did not take accurate pictures, and the issue was with the tech and NOT with Mattie. From that moment on, I learned a great deal about radiology techs, and then with my 15 month cancer battle at Georgetown University Hospital, I became VERY astute at reading their reactions and demeanor throughout the filming process. I wish I did not have ever had to receive such an education.
I recall in August of 2009, when we learned Mattie's cancer spread everywhere, that I read the tech person's thoughts and feelings beautifully on that day! I had Mattie get a sonogram because I was concerned of his reported stomach pain. Naturally no one thought it was possible that so soon after treatment Mattie would relapse. He had only completed treatment six weeks prior! While Mattie was getting the sonogram, the tech asked me why Mattie was originally admitted to the hospital. I knew that was the kiss of death. He saw something in the sonogram, which prompted the question. So I knew the cancer was back before hearing the actual news.
Peter and I set out on our road trip to Bethany Beach at around 10:30am. We hit some traffic, but it was an adventure for us. The funny part about this is Peter asked me if the roads looked familiar to me, considering I traveled them with Ann a few weeks ago. Naturally Peter knew the answer would be NO! I am directionally challenged and the roads to the Eastern Shore are lined with trees and farms. I need landmarks! Without landmarks, I am hopelessly lost. I recognized places along the way that Ann stopped at during our previous trip. Peter just laughed because I recall directions based on gas station locations, restaurants, and stores. A real city girl, I suppose. On my car journey, I kept Ann posted on the landmarks I was passing, which reminded me of our previous trip! Our friends Carolyn and Mary also kept track of us today, and both of them were hoping that I would find a way to relax as the day progressed. Relaxing, I admit, no longer comes easily to me. I blame that on living in a hyper alert state for so many months.
Peter and I stopped at a farmer's stand along our journey into Bethany Beach. Tonight, I cooked fresh fish, corn, and had an amazing tomato salad. Food tastes very different when it is this fresh, in fact I do not think I ever tasted corn as tender and sweet as what came from this farm today. Peter and I are enjoying our time at Ellen's house and before dinner we went out looking for bunnies. Ellen reminded me that bunnies come out in her neighborhood around 6pm. It was hot as blazes out, but we still went for a walk. I am happy to say we saw one bunny along our journey, and then we sat along the beach and watched the people and the waves. Peter and I had fun watching one particular family, because we were trying to figure out who was related to who, and the dynamics between each of the members. This may not sound relaxing to some of you, but I enjoy observing people, and I also loved watching this little girl learn to fly a kite.
While we were having dinner outside, in maybe 98 degree temperatures, Peter told me to turn around. What was over my shoulders, up in the sky? But a beautiful Mattie Moon! I have had my moments today, and just when you don't expect me to, I will cry. As Peter can attest to over lunch! We weren't even talking about Mattie, I simply just started crying. Peter asked me to take a break while writing the blog tonight, and we sat outside staring at the moon. Peter tells me there will be a full moon on my birthday, and as Peter says, "Mattie will be shining brightly on that night for his mama!"
I received a beautiful e-mail today from Lana, one of Mattie's preschool teachers. Lana was and continues to be very supportive of Peter and I. Lana's son is in the Navy, and when she read in last night's blog that the VP-26 tridents were raising money for Mattie this year, she stopped in her tracks. This turns out to be the same squadron her son is in! In fact, her son and Palen's (Whitney's sister) husband are friends! I continue to be in awe of how small our world is, or at least how Mattie is connecting us with so many people in our lives. The irony is the VP-26 tridents were supportive of us when Mattie was sick. They sent Mattie a signed Blue Angels poster and even gave us Navy patches! It seems noteworthy that this squadron continues to support us even after Mattie is gone.
As we head into Saturday, Ann and her family are driving to Bethany Beach to spend Saturday with us. Ann and her daughter, Abbie, and I are going to cook dinner together and celebrate my birthday. Though they are only staying one night with us, I am very appreciative of the fact that they are making the trip to be with us. Ann and I have known each other technically since 2005, when Mattie entered preschool. However, our deep friendship was created on that ominous diagnosis day of July 23, 2008. Cancer united us together, and though Mattie is no longer physically with us, I credit him for bringing Ann and I together. Mattie loved Ann, he loved her energy and he loved her creative hands on projects. I shall never forget the times Mattie had with Ann, and those moments will remain in my mind and heart forever.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "First, I am so glad you got out of jury duty. It is difficult enough to stay focused on a court case but with grief riding shotgun and the number of triggers available to set things off, it is not a positive picture right now. I know you and that you would give it all you have if you were selected, but I am glad you don't have to do it right now. The news about the Officers Spouses Club selecting Mattie's Miracle Foundation as the charity they want to raise funds for is amazing. That's fantastic. Once again, ripples in the pond and no way of telling where they will end. Along with the funds (always welcome), comes the opportunity to educate a whole new group of people who in turn, have access to others. I suspect that it will eventually make its way to someone who Needs to know about the foundation and Mattie's story. It is really nice of Ellen to afford you the opportunity to get away with Peter; I hope that you have a safe, easy and uneventful ride out to the beach and that you find the experience to be relaxing. I know Charlotte misses Mattie and I am sure she is happy that you continue to be in touch with her. I bet she will treasure that snow globe; what a lovely gift to bring to her. It was another challenging day in conference, particularly for those, who like me, are military linked as the whole day was centered around military grief and survivors. As always I learned a lot and shed some tears. As we finish up our conference tomorrow I will be thinking of you and Peter; the closing ceremonies for these conferences are always special and Mattie is always in the forefront of my thoughts when I am asked to bring to mind someone who I care about who has died and who we might wish to dedicate our ceremony to. As always, I hold you gently in my thoughts."
The second message is from our friend and Mattie's preschool teacher, Lana. I appreciated Lana sharing the thoughts below from Henry's mom. I relate to what Henry's mom has written, and in a way in helps to know that Peter and I are not alone in our thoughts and feelings. Lana wrote, "I've been thinking of you a lot recently. First I do have to share my "small world" story...I was reading last night's blog entry and thought hmmm, isn't VP-26 Sean's (my son) squadron?? So, I just texted my daughter in law and yes it is!! How crazy is that!! In fact I'm trying to figure out if the patches Sean gave me for Mattie were from VP-26? I told Jen that they have to make sure they attend the auction and donate!!
Now ...why and how you've been on my mind. For one I happened onto a blog, that I have occasionally read and knew of because the author has written on parenting issues. Last week, I discovered that her 18 year old son had died of a beating and drug overdose. A horrible event that was painful to read, but I thought of you with some of her feelings of losing a child...
So here we are in Mid-July. Henry is no longer battling for his life in the hospital; he’s gone. The memorial services and condolence cards have faded away. The surreal, fuzzy first days of having a child die have now passed. Life has begun getting back to normal for everyone who loved Henry, and for the many people who supported our family and took such amazing care of us during Henry’s hospitalization and in the immediate days after his death. Now, nearly two months after he left us, Henry isn’t the only or even the first thing people talk about when they talk to me. They are – as they should – getting back to normal.
I understand all of this and appreciate it. Life goes on. It has to. Henry has siblings who need to move forward, and Jon and I have responsibilities and jobs and a new baby who needs our full attention.
And yet…and yet…
For me, there is no sense of moving on. Instead, there is often a sense of everything and everyone moving on without me, ahead of me or around me, while I stand in place with empty arms that long to hold my son. I am his mother. I have been his mother since I was 23 years old, I don’t know how to be anything else. Henry is the first thing I think about when I open my eyes in the morning and the last thing I think about when I drift off to sleep each night.
The day he died, when his father and I held him close as he struggled to let go. I did my best to assure him that it was okay to go, but every fiber of my being longed to scream “No, sweetheart, don’t go! Please stay. I need you and I love you. Please don’t go!”
I haven’t yet been able to go through the things he left behind, which are mostly all packed up since he had moved out of our house. There are boxes and bags to open some day, full of books and t-shirts that will smell just like Henry. I also haven’t yet been able to bring his ashes home. I don’t know when I will be able to face that. A family member is keeping them for his father and me until we feel ready.
Others will move on and remember Henry with a sense of peace and closure. As for me, his mama, the wound remains acutely fresh – my child just died. I walk around with a hole in my heart. I feel many years older and even when I’m smiling or talking about something trivial, my heart is swollen with grief that I suspect will never really go away.
This mother has also had much support from her "online" community. As I read your entries each day, I always stop and reflect on losing one of my children...and I just cannot imagine it...the pain is just more than I can fathom. I think because my kids have recently gone through many new "life stages" (Erin's semester abroad, Evan purchasing a condo and getting engaged, Sean and Jen talking of starting a family) and I think of you and Peter and my heart just breaks. You are and have always been awesome parents and now you continue to educate, support and advocate for ALL children and families. Mattie's spirit lives on through you two each and every day. Please know how many of us are so grateful to you. Here's wishing you a wonderful, peaceful weekend at the beach....by any ocean is my favorite place in the world!"
Poem of the day: Visiting by Charlie Brown
I keep moving
I keep breathing
But somehow I think
Life goes on without me.
Sometimes I am a sleepwalker
Marching through, untouched
By the daily rhythm that
Other people hear.
Instead I am tuned into
My son's sight and sounds,
And how he felt
And that is all inside.
So when you see me
Far away in thought
I haven't gone far
Just within.
I've gone visiting
The one I can no longer visit
Except in memory
Join me?
July 23 is a hard and complicated day for us. I remember July 23, 2008, like it were yesterday. On that day, I innocently took Mattie to the pediatrician, expecting to hear that he sprained his arm somehow. While the pediatrician was examining him, she told me that at the very least Mattie may need physical therapy to help him regain his mobility. When she told me that, I was taken aback and had issues with that assessment. When I heard the reality of the situation, I wished that I could go back to the initial diagnosis that included just physical therapy. Cancer has a way of putting other things into perspective quickly. I recall helping Mattie jump up on the x-ray machine, so that the technician could scan his arm. I watched the whole process behind a glass window. I was beginning to get annoyed internally with the technician because he kept taking more and more pictures. Being naive, I just thought he did not take accurate pictures, and the issue was with the tech and NOT with Mattie. From that moment on, I learned a great deal about radiology techs, and then with my 15 month cancer battle at Georgetown University Hospital, I became VERY astute at reading their reactions and demeanor throughout the filming process. I wish I did not have ever had to receive such an education.
I recall in August of 2009, when we learned Mattie's cancer spread everywhere, that I read the tech person's thoughts and feelings beautifully on that day! I had Mattie get a sonogram because I was concerned of his reported stomach pain. Naturally no one thought it was possible that so soon after treatment Mattie would relapse. He had only completed treatment six weeks prior! While Mattie was getting the sonogram, the tech asked me why Mattie was originally admitted to the hospital. I knew that was the kiss of death. He saw something in the sonogram, which prompted the question. So I knew the cancer was back before hearing the actual news.
Peter and I set out on our road trip to Bethany Beach at around 10:30am. We hit some traffic, but it was an adventure for us. The funny part about this is Peter asked me if the roads looked familiar to me, considering I traveled them with Ann a few weeks ago. Naturally Peter knew the answer would be NO! I am directionally challenged and the roads to the Eastern Shore are lined with trees and farms. I need landmarks! Without landmarks, I am hopelessly lost. I recognized places along the way that Ann stopped at during our previous trip. Peter just laughed because I recall directions based on gas station locations, restaurants, and stores. A real city girl, I suppose. On my car journey, I kept Ann posted on the landmarks I was passing, which reminded me of our previous trip! Our friends Carolyn and Mary also kept track of us today, and both of them were hoping that I would find a way to relax as the day progressed. Relaxing, I admit, no longer comes easily to me. I blame that on living in a hyper alert state for so many months.
Peter and I stopped at a farmer's stand along our journey into Bethany Beach. Tonight, I cooked fresh fish, corn, and had an amazing tomato salad. Food tastes very different when it is this fresh, in fact I do not think I ever tasted corn as tender and sweet as what came from this farm today. Peter and I are enjoying our time at Ellen's house and before dinner we went out looking for bunnies. Ellen reminded me that bunnies come out in her neighborhood around 6pm. It was hot as blazes out, but we still went for a walk. I am happy to say we saw one bunny along our journey, and then we sat along the beach and watched the people and the waves. Peter and I had fun watching one particular family, because we were trying to figure out who was related to who, and the dynamics between each of the members. This may not sound relaxing to some of you, but I enjoy observing people, and I also loved watching this little girl learn to fly a kite.
While we were having dinner outside, in maybe 98 degree temperatures, Peter told me to turn around. What was over my shoulders, up in the sky? But a beautiful Mattie Moon! I have had my moments today, and just when you don't expect me to, I will cry. As Peter can attest to over lunch! We weren't even talking about Mattie, I simply just started crying. Peter asked me to take a break while writing the blog tonight, and we sat outside staring at the moon. Peter tells me there will be a full moon on my birthday, and as Peter says, "Mattie will be shining brightly on that night for his mama!"
I received a beautiful e-mail today from Lana, one of Mattie's preschool teachers. Lana was and continues to be very supportive of Peter and I. Lana's son is in the Navy, and when she read in last night's blog that the VP-26 tridents were raising money for Mattie this year, she stopped in her tracks. This turns out to be the same squadron her son is in! In fact, her son and Palen's (Whitney's sister) husband are friends! I continue to be in awe of how small our world is, or at least how Mattie is connecting us with so many people in our lives. The irony is the VP-26 tridents were supportive of us when Mattie was sick. They sent Mattie a signed Blue Angels poster and even gave us Navy patches! It seems noteworthy that this squadron continues to support us even after Mattie is gone.
As we head into Saturday, Ann and her family are driving to Bethany Beach to spend Saturday with us. Ann and her daughter, Abbie, and I are going to cook dinner together and celebrate my birthday. Though they are only staying one night with us, I am very appreciative of the fact that they are making the trip to be with us. Ann and I have known each other technically since 2005, when Mattie entered preschool. However, our deep friendship was created on that ominous diagnosis day of July 23, 2008. Cancer united us together, and though Mattie is no longer physically with us, I credit him for bringing Ann and I together. Mattie loved Ann, he loved her energy and he loved her creative hands on projects. I shall never forget the times Mattie had with Ann, and those moments will remain in my mind and heart forever.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "First, I am so glad you got out of jury duty. It is difficult enough to stay focused on a court case but with grief riding shotgun and the number of triggers available to set things off, it is not a positive picture right now. I know you and that you would give it all you have if you were selected, but I am glad you don't have to do it right now. The news about the Officers Spouses Club selecting Mattie's Miracle Foundation as the charity they want to raise funds for is amazing. That's fantastic. Once again, ripples in the pond and no way of telling where they will end. Along with the funds (always welcome), comes the opportunity to educate a whole new group of people who in turn, have access to others. I suspect that it will eventually make its way to someone who Needs to know about the foundation and Mattie's story. It is really nice of Ellen to afford you the opportunity to get away with Peter; I hope that you have a safe, easy and uneventful ride out to the beach and that you find the experience to be relaxing. I know Charlotte misses Mattie and I am sure she is happy that you continue to be in touch with her. I bet she will treasure that snow globe; what a lovely gift to bring to her. It was another challenging day in conference, particularly for those, who like me, are military linked as the whole day was centered around military grief and survivors. As always I learned a lot and shed some tears. As we finish up our conference tomorrow I will be thinking of you and Peter; the closing ceremonies for these conferences are always special and Mattie is always in the forefront of my thoughts when I am asked to bring to mind someone who I care about who has died and who we might wish to dedicate our ceremony to. As always, I hold you gently in my thoughts."
The second message is from our friend and Mattie's preschool teacher, Lana. I appreciated Lana sharing the thoughts below from Henry's mom. I relate to what Henry's mom has written, and in a way in helps to know that Peter and I are not alone in our thoughts and feelings. Lana wrote, "I've been thinking of you a lot recently. First I do have to share my "small world" story...I was reading last night's blog entry and thought hmmm, isn't VP-26 Sean's (my son) squadron?? So, I just texted my daughter in law and yes it is!! How crazy is that!! In fact I'm trying to figure out if the patches Sean gave me for Mattie were from VP-26? I told Jen that they have to make sure they attend the auction and donate!!
Now ...why and how you've been on my mind. For one I happened onto a blog, that I have occasionally read and knew of because the author has written on parenting issues. Last week, I discovered that her 18 year old son had died of a beating and drug overdose. A horrible event that was painful to read, but I thought of you with some of her feelings of losing a child...
So here we are in Mid-July. Henry is no longer battling for his life in the hospital; he’s gone. The memorial services and condolence cards have faded away. The surreal, fuzzy first days of having a child die have now passed. Life has begun getting back to normal for everyone who loved Henry, and for the many people who supported our family and took such amazing care of us during Henry’s hospitalization and in the immediate days after his death. Now, nearly two months after he left us, Henry isn’t the only or even the first thing people talk about when they talk to me. They are – as they should – getting back to normal.
I understand all of this and appreciate it. Life goes on. It has to. Henry has siblings who need to move forward, and Jon and I have responsibilities and jobs and a new baby who needs our full attention.
And yet…and yet…
For me, there is no sense of moving on. Instead, there is often a sense of everything and everyone moving on without me, ahead of me or around me, while I stand in place with empty arms that long to hold my son. I am his mother. I have been his mother since I was 23 years old, I don’t know how to be anything else. Henry is the first thing I think about when I open my eyes in the morning and the last thing I think about when I drift off to sleep each night.
The day he died, when his father and I held him close as he struggled to let go. I did my best to assure him that it was okay to go, but every fiber of my being longed to scream “No, sweetheart, don’t go! Please stay. I need you and I love you. Please don’t go!”
I haven’t yet been able to go through the things he left behind, which are mostly all packed up since he had moved out of our house. There are boxes and bags to open some day, full of books and t-shirts that will smell just like Henry. I also haven’t yet been able to bring his ashes home. I don’t know when I will be able to face that. A family member is keeping them for his father and me until we feel ready.
Others will move on and remember Henry with a sense of peace and closure. As for me, his mama, the wound remains acutely fresh – my child just died. I walk around with a hole in my heart. I feel many years older and even when I’m smiling or talking about something trivial, my heart is swollen with grief that I suspect will never really go away.
This mother has also had much support from her "online" community. As I read your entries each day, I always stop and reflect on losing one of my children...and I just cannot imagine it...the pain is just more than I can fathom. I think because my kids have recently gone through many new "life stages" (Erin's semester abroad, Evan purchasing a condo and getting engaged, Sean and Jen talking of starting a family) and I think of you and Peter and my heart just breaks. You are and have always been awesome parents and now you continue to educate, support and advocate for ALL children and families. Mattie's spirit lives on through you two each and every day. Please know how many of us are so grateful to you. Here's wishing you a wonderful, peaceful weekend at the beach....by any ocean is my favorite place in the world!"
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