Tonight's picture was taken in August of 2009. By that point, we knew that Mattie's cancer diagnosis was terminal. Mattie's last wish was granted.... he wanted a ride-on vehicle. We purchased "Speedy Red" and Mattie was thrilled. Our commons area in Washington, DC was the perfect place to learn to drive! I wasn't sure Mattie would understand the mechanics of driving, so I sat in the passenger seat providing coaching and guidance. But in all reality, Mattie was a natural. He understood the notion of a gas pedal and a brake. How he loved zooming around in our commons area and though Mattie did not get a long amount of time with Speedy Red, it created lasting memories of our last few weeks together.
Quote of the day: Love is like the wind; you can’t see it, but you can feel it. ~ Nicholas Sparks
There are moments in my life that I sometimes have to pause and go back through Mattie's blog. It helps me get a glimpse into my thoughts and feelings at a particular point in time, and I can compare it to where I am now! Given that Monday was the 16th anniversary of Mattie's death, I decided to go back to September 9, 2009 (the day after Mattie died). I included a segment of that blog posting below for you to read.
How I opened up that blog passage, captures how confused I was.... after all, for that entire year I reported to friends and family about how Mattie was doing. I would recount his day, the struggles Mattie was facing, and I would share my worries and fears. But after Mattie died, the blog could have died too! It would have been understandable as my little boy's courageous journey ended. Somehow I had the instinct to keep on writing! Back then, I said I was going to write the blog through Mattie's funeral (which would have meant writing for another month after Mattie died). Kind of ironic, because now 16 years after Mattie died, I am still writing this blog DAILY.
The blog has evolved over all these years from you hearing about Mattie's day and his battle with cancer, to my grief and trauma journey as I face so many forever losses. It is truly remarkable all the things you, as my reader, have experienced with me! I mention this because I think what caught my immediate attention after reading the September 9, 2009 blog posting was the importance of connections, friendships, and sharing inner most thoughts.
Frankly I have NO MEMORY, NONE, of going out to lunch with my friends the day after Mattie died. Truly it is a complete blur! I read the words tonight and tried to picture that day.... I couldn't! The blog did not jog my memory at all. I can't picture what restaurant we had lunch and I most definitely don't recall the meaningful conversations we had! I chalk this up to being totally traumatized and truly back then my body may have been moving but my mind and heart were somewhere else.
Certainly my grief looks different than it did in 2009. In 2009, everything felt so raw. It was like walking around without skin to protect my body. That was how painful it was to navigate in the world without my son. Now 16 years later, the grief and the feelings associated with that loss have gone from being on the surface and raw to something much deeper and more pervasive. The loss of Mattie is equivalent to having grown a third leg. It travels with me where ever I go, it impacts how people view me, how I view myself, and it influences how I perceive the world around me. Any one who says that time heals all wounds is 100% incorrect. Wounds may heal on the surface, but then I may hear a particular word, feeling, memory, experience, or trigger, and guess what.... the grief wound opens right back up. The difference though is with time you get better at accepting and understanding this pain and learning ways to cope with this uneasiness, disappointment, sadness, and the unfairness of life.
Blog Posting from September 9, 2009..........................
As of today, I have to acknowledge the fact that the blog and the nature of the blog has profoundly changed. The blog was originally created to inform you about Mattie's day, his condition, and his treatment. However, over time the blog evolved and in a way gave birth to our family's story that captured the hearts, minds, and souls of a community. A community that I would be lost without, a community that wasn't afraid to walk through our painful days and NIGHTS, and a community that has shown me that with love and compassion wonderful things can happen even in crisis. Today is the first day I am writing, but I am not reporting about Mattie. I have no Mattie reactions, stories, or reflections of his day. This in and of itself is VERY upsetting, but I decided that I would continue the blog through Mattie's funeral, and then assess what I will do after that point. I have no idea what I will be writing about, or how I will be feeling as Mattie's death continues to hit me. However, in the mean time, I am honored that many of you want me to continue to write, and that you are willing to support us through our grieving process.
I had a very hard time going to sleep last night. My body has been profoundly changed from living in a PICU, but also living with a very sick child who was up every two hours at night. One thing was consistent, I woke up crying. I am surrounded by Mattie's things, and at times I almost have the sense that Mattie is with me. I am so USED to caring and meeting Mattie's needs 24/7, that is it VERY hard for me to now relax. I am that stressed out, and that type of intensity, doesn't go away with one night of sleep. I have many months of physical and emotional recovery ahead. I sat in Mattie's room this morning and just looked around and was flooded with all of his creations and toys. It is hard to believe that he is gone. I know he is gone, but I can't accept that he is gone.
As I was getting dressed today, I debated what necklace to wear. For the past 13 months I have been wearing Alison's Hope necklace. I clung to that necklace and it brought me strength and courage on some of my darkest days. Yet today I felt compelled to wear something that reminded me of Mattie. So I pulled out the necklace he made for me at the Lombardi Clinic. I featured a picture of it on the blog recently, it has different glass animal beads on it. Any case, wearing this necklace today reminded me of Mattie and the incredible love we have for each other. Mattie and I were clearly mother and son, but Mattie and I in a way had a deeper and more spiritual connection. We just understood each other, and with his death, I feel like a part of me has died with him. Mattie looked like me, acted like me, and we had similar personalities. So how is it possible to lose such a force and not be affected?
My mom and I went out to lunch today with my friends Ellen (Charlotte's mom) and Christine (Campbell's mom). I never thought I would be doing this after Mattie's death. Instead I pictured myself balled up in a corner or not leaving my bed. That could still happen, and I may have days like this ahead, but today, getting out of the house was necessary. Getting flooded at home with Mattie's memory can be overwhelming! At lunch we had moments of crying, moments of laughter, and moments of deep reflection. One thing we did all agree upon is the need to take more time to nurture our friendships. Mattie has taught us to appreciate life and our connections. Taking the time to see and share feelings with friends is one of life's greatest gifts, and I am happy that I stepped out of comfort zone and am beginning to allow my friends back in. I asked Ellen and Christine about how their children were reacting to Mattie's death. I was deeply touched to hear how upset and sad Charlotte and Campbell were to hear the news. I certainly do not want Mattie's friends to feel upset or uncertain about life or even worry that this could happen to them, but I am happy to see that Mattie's life touched them so much, that they cried and asked profound spiritual questions. For example, why did God allow Mattie to die? An excellent question asked by a seven year old, and one that even I as an adult continue to explore. I thought it was interesting that Campbell asked his mom if she knew how he felt. If she ever lost a close friend when she was seven. We talked about this at lunch, and all of us never lost a friend like this when we were growing up, so in all reality we do not know what is going on in the minds of Mattie's friends, but I am very happy that children are being given the opportunity to talk about Mattie's death and to ask questions. It is our responsibility as parents to be able to talk to our children about death, and when we do not talk about these sensitive topics, they unfortunately do not go away. Children have active minds and when we do not guide them, they will come up with explanations of death on their own, explanations that could be misleading. Thank you Ellen and Christine for a lovely lunch and for giving me two new green friends. The plants are beautiful! I haven't seen plants in my home for over a year, because plants have been replaced by LEGOS (actually plants can grow molds in their soil, which could be dangerous for chemotherapy patients, which is why all plants were removed last summer)! Reconnecting with friends made me feel less isolated, and Christine told me that we are friends regardless and Mattie's death will not change that. You couldn't have said anything better to me today, that was a gift!
One thing is for certain though, I feel no regret about Mattie's treatment and care. I was there EVERY step of the way, took an active role in his treatment, never allowed him to be alone during any part of this process, and was always open and honest with him during this fight. I am now worn out physically and mentally, but it was worth it, because if I had even one doubt about my actions, it would weigh heavily upon me. I have no regrets about our actions, and that alone is peaceful. The one thing I encourage you to do, because I CAN'T do it, is after you read this, stop and pause, find your children and hug them. Never take for granted the time you have with them. I realize life is busy, hectic, and you may feel you can catch up on things the next day. Maybe, but here is the key point. You have your child with you, and that in and of itself is a gift that you shouldn't lose perspective on.
2 comments:
Vicki, my heart is with you. You have been an amazing example of love and courage to me for many years. Following is the post I made on FB yesterday. We are very much sisters of the heart. On Sept 19 it is 15 years that my beautiful daughter is gone. Thank you for
sharing so candidly, the life and turmoil which make you Vicki, the
warrior. Hugs.
Quote of the day: I am hopelessly in love with a memory. An echo from another time, another place. ~ Michel Foucault
This month marks the 15 anniversary of Jillian's death. I can imagine that some may feel that with time and as each year passes these anniversaries get easier. In all honesty I would have this same idea if I were reading my writings rather than living them. We want to believe this or need to believe this! Its what we all HOPE for! Isn't it?! After all if it doesn't get easier, then what? Unfortunately 'the then what' pretty much describes Tom and I!
In the last days of Jillian's life, I was contacted by a social worker at
the hospital. She was giving me some advice about counseling, regarding Jill dying. She said to me..... you might need counseling for yourself but dont do it just because others are saying you need counseling? She was a grief counselor. I heard her loud and clear. She was assessing my functioning and was telling me that people will judge me because they would not understand
what I was up against and wanted me 'fixed.' But there are no quick fixes for my issues, there is NO ONE WAY to grieve. Again reminding me that how I feel is how I feel and it is okay. Then and today. The best scenario for helping someone to process grief. Which is probably why the majority of people land up seeking therapy! As I always say NOT acknowledging a loss (even an anniversary) is ALWAYS, ALWAYS the worst thing you can do for a person who is grieving. I don't care what setting we are talking about,
including a place of work! There are no excuses!
Jillian did not want to die, she fought it so hard and for so long. She
died as she lived, giving it everything she had.......I miss my beautiful
dolly, and I grieve each and every day..
Dear Chris, Jillian and Mattie share an anniversary month. My heart goes out to you on September 19th! Honestly when I read your words, I felt like I could have written them. We share so many similarities of the heart, and I am saddened you know the pain of losing your sweet daughter. You are 100% correct, it doesn't matter how many years go by, it doesn't get easier. But what we both know for sure.... friends and family NOT acknowledging her death and life is hurtful and mortally wounding for you and Tom.
Jill's social worker gave you good advice and ironically it was the same advice Mattie's social worker gave me! I had friends who wanted me to return to my former self, and when that didn't happen, they suggested I needed therapy. It was Mattie's social worker who said.... would you be going to therapy for you or because of these comments!? Naturally the response was because of the comments I received. She normalized this forever loss for me, and I am glad Jill's social worker did the same for you! That was actually a blessing! As our loss is truly comprehendible to many (THANKFULLY!).
Thank you for my warrior distinction! That means so much to me, and I will wear it with pride. As always thank you for reading, for staying in touch, and I wish Jillian was with you! I wish that September 19 was just a regular day, instead of a day in which your world was forever changed! Facing each day without your Jillian and managing this for 15 years makes you a warrior too, as it would be very easy to give up, become angry, and disengaged from the world. Much love.... from your "sister of the heart"
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