Tonight's picture was taken on Christmas Eve of 2008. This was a big night for Mattie. Why? Two reasons. First Dr. Bob (Mattie's surgeon) made a house call and removed the cast on Mattie's left arm. A cast that was placed on his arm after his second limb salvaging surgery. That night, Bob gave Mattie the go ahead to start using his other arm. In fact, both of Mattie's arms functioned quite well after his surgeries, he had limited mobility in the sense that he couldn't lift his arms over his head, but he could use them effectively to play, hold things, and eat. That alone was miraculous. The second big surprise was a personal visit from Santa. Santa was played by Ann's cousin, Ed, and I recall that night vividly.
Quote of the day: Believing where we can not prove. ~ Alfred Lord Tennyson
It is hard to believe that today was Christmas. It did not feel like a holiday, or perhaps I just did not want to acknowledge the day. Despite my feelings, I had several people reach out to me today to let me know they were thinking of us. Peter and I received a text message this morning from Dr. Aziza Shad. Dr. Shad is the director of the pediatric oncology department at Georgetown University Hospital, some of you may recall that she was also the doctor on call the week Mattie died. Dr. Shad sent me several messages today. She wanted us to know that she was thinking of us, she acknowledged how hard the day was going to be for us, and though I consider Aziza to be a very passionate and hopeful physician, she also is honest. She echoed my feelings that the loss of Mattie is not something that will ever go away and that over time it will get more challenging and complex. I appreciate her candor and openness about grief, because trite pleasantries I find useless and most certainly untrue.
As time moves on, others around me do expect me to move on. They expect me to adjust to my "new reality" and find a way to carry on and thrive. Some times such sentiments make me angry and some times such sentiments make me feel as if the problem lies within me. Then thankfully I receive a message like Aziza's and I quickly understand that Peter and I are living in a world that most people can't and perhaps shouldn't understand. I can imagine hearing my lament is difficult for those close to me, but I assure you that telling parents who lost a child to move on or that they need someone to professionally listen to them is NOT helpful. It borders on insensitive and it also makes me (I don't speak for all parents grieving the loss of child) further upset. Upset because from my perspective you have no idea what I live with each day, and the fact that I remain standing, functioning, and on a good day with a mission to help others, is amazing.
I received a text message from my friend Alison today who said that she wished a Merry Christmas to "our favorite angel." I wasn't expecting this term, so when I read it, I smiled. I smiled because in the midst of a happy day for her, Alison was telling me that she remembered Mattie.
Our second Christmas without Mattie was challenging. Peter woke up not feeling well and was running an 101 fever for most of the day. Therefore, he really needed to rest and have down time. While Peter was resting, my mom and I went out for a 3.39 mile walk. It seemed to go by fast since we talked about many things along the way. My mom told me that last night as she and my dad were going to bed, they heard a loud sound in their room. As if something had fallen. They looked around and noticed that Mattie's picture (Mattie in the pumpkin patch) had toppled over. The picture sat in a picture frame on a bureau. No one was near the bureau to provide an explanation for the frame falling. My mom took that as some sort of sign that Mattie was here and with us on Christmas Eve. Who knows if that is true, but we have no other explanation for this occurrence.
As we walked I explained some of my anger and feelings to my mom. I constantly try to look for explanations for Mattie's death, as well as try to understand why this happened to us. My mom is a combination of logic and reasoning as well as feeling. So she typically has a way of responding to me in a manner that I can appreciate as it relates to Mattie's death. Her response was that there is no explanation and trying to find one will only proceed to make me more upset. As she continued talking, I couldn't address the subject anymore because I was crying.
Later in the day, I received an article from my friend, Charlie. I posted the article below. It is short, but was written by a mom who lost a child. After reading the article, I told Charlie that I could relate to everything this woman was saying. Her point about being more emotionally "needy" after the loss of a child captured my attention. Mainly because I agree with her sentiment and see this within myself.
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The Death of a Child - You Don't Get Over It by Sheryl Letzgus McGinnis
When someone loses a child, others don't know what to say or do, even close family members struggle with this dilemma. So they take the Occam's Razor approach, - do whatever is the simplest, and quite often that is to do nothing.
People often choose to say nothing, not out of disrespect or because they don't care. I believe they do care but just don't know what to say to us. Many people are afraid to broach the subject of our child's death, because they think it will make us sad. We are already sad! Nothing you can say or do will make us sadder.
By ignoring our child though, by not mentioning his/her name it is as though he or she never existed. This hurts! If you knew my child, a nice remembrance of him or her would be so appreciated. What mother does not want to talk about her child? Just because a child is deceased does not mean that we don't want to talk about them or hear their name or be told nice stories about them by their friends or other loved ones.
We think of our deceased child constantly. He/she lives on in our hearts and minds. While we're looking at you and exchanging pleasantries, you can be sure that our child's memory is only a heartbeat away. So please mention our child to us. If you have a funny anecdote to share, by all means please do. Perhaps it's something we hadn't heard of before. Don't hold back. If our child did a kindness for you, please tell us. It goes without saying of course that we wouldn't want to hear anything negative about our child but something nice will make us feel so good.
Please don't tell us that our child is better off, that he's in heaven. We want our child here with us. We know that you mean well but we feel that our child's place is here with us.
Please don't compare our child's death to another's death. The fact remains that our child is gone. No matter how he/she died, they're gone. That is the bottom line. Just offer a simple heartfelt condolence if you didn't know him/her.
Please don't try to comfort us with words of admonition - "There now, don't cry." We'd rather not cry but sometimes it can't be helped so please allow us to give in to our tears. Tears can be healing. They may make you uncomfortable, but they are a necessary indulgence for us.
Please understand that we will never be the same person that you once knew. Some of us are stronger than others and can deal with the heartache better. Some of us are very good at putting on The Mask and concealing our pain from you. We will laugh again and even enjoy life again but we will never be the same person. How could we be? A significant part of our heart is missing.
Please don't tell us it's been X amount of weeks or months or even years and that we should be over it by now. This is not like coming down with the flu or contracting measles or chicken pox. This is something that is never gotten over. Yes, we will learn to cope but we will never be over it. Again, how could we be? There is no official time limit on mourning.
If you know my child's birthday or remember the anniversary of his/her death, a phone call would be appreciated to let me know you're thinking of me. We're a bit needier than we used to be. Grief does that to a person.
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I attended a Christmas luncheon with my parents today. Their friends invited us and I find it touching that these friends have embraced my parents as part of their family. I had heard about these friends over the years, and today I finally got a chance to meet them and their family. However, we were all saddened that Peter couldn't join us, though I kept checking in on him by phone.
Despite our feelings about the holidays, Peter and I hope that our readers and supporters had a beautiful Christmas with family and friends. My friend Charlie sent me the link below to this very moving video, and based on the religious significance of the day, I felt it was appropriate to post it.
Magnificent -- I Believe: www.andiesisle.com/creation/magnificent.html
1 comment:
"Upset because from my perspective you have no idea what I live with each day, and the fact that I remain standing, functioning, and on a good day with a mission to help others, is amazing."
Also amazing that once again your words transcribed exactly the thoughts in my head, and put them into black and white! The article written by the other mother was also so descriptive of my own thoughts and needs. I'm considering re-posting it on Keaton's Caringbridge site, but some of my acquaintances seem to think I am targeting them whenever I try to show that there is a common bond in the way a lot of us moms feel and react after the life altering loss of our child. When you mentioned in a previous blog about your "toxic" feelings being able to harm a friendship, it so resonated with my own experiences, lately.
Thank you for your support and validation of my sometimes misunderstood by those around me, feelings. Having someone I can connect with that actually does understand has helped me hang on, and try to keep in check the anger and resentment that sometimes radiates from within, as those around me, (who I know think they are being helpful), give yet another suggestion for how I should be handling my grief, or how I could be able to move on, etc.
And yes, I know all the "professional" advice for grief therapy, all the relevant counseling tips, and am hopeful that some of it is actually relevant and meaningful to some who need and can use it. I really do not want anyone to have to be stuck in this same dark place where I dwell.
But all I want is to move back, not to move on,even though I know my desire is absolutely futile, and of course not a constructive way of handling this life.
Yet, I continue to move, further from my Keaton with each passing hour, like Anna Nalick's song "Breathe" lyrics say....
"'Cause you can't jump the track,we're like cars on a cable
And life's like an hourglass, glued to the table
No one can find the rewind button girl,
So cradle your head in your hands"
Hoping Peter feels better, and your headaches are improving. I agree with your mom about the "sign" of Mattie's presence with you. I look constantly for those signs, myself. Enjoy your walks with your mom...those are really special.
Karen, Mother of Keaton for Always
www.caringbridge.org/visit/keatonlee
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