Tuesday, November 10, 2009

Tuesday, November 10, 2009 -- Mattie died 9 weeks ago today.

Tonight's picture was taken in January 2009 and features Mattie sitting in his wheelchair in the PICU. Mattie assembled a very complex 3-D pirate ship puzzle, and was proudly displaying his accomplishment. Notice the Christmas bell he put around the sail of the ship. Got to love Mattie's sense of humor. Mattie became an expert builder while in the Hospital. He could put together anything, and what I admired about him is he had a logical mind, that understood how things worked and how things could be put together.

Poem of the day: Don't Cry I'm in God's Keeping by Rhonda Braswell

God saw that he was getting tired
And the cure was not to be,
So He put His arms around him
And whispered, "Come with Me.
"With tearful eyes we watched him suffer
And saw him fade away.
Although we loved him dearly,
We could not make him stay.
A golden heart stopped beating,
Busy little hands to rest.
God broke our hearts to prove to us,
He only takes the best.
It's lonesome here without you
We miss you so each day,
Our lives aren't the same
Since you went away.
When days are sad and lonely,
And everything goes wrong,
We seem to hear you whisper,
"Cheer up and carry on.
"Each time we see your picture,
You seem to smile and say,
"Don't cry, I'm in God's keeping,
We'll meet again someday."


I had the opportunity to spend a good portion of my day today with Ann and her children. Her children had a half a day of school today, and when they got home, Ann's son and his friends prepared for a Lego League competition that they are participating in this weekend. As I sat there watching this today, I couldn't help but think that my Lego master was missing from this equation. I really believe, and I realize I may be biased, that Mattie had very advanced Lego skills for his age. He could follow Lego kit instructions, but then he also had the patience, fortitude, and skill to also create his own complex designs. While at Ann's house, her daughter Abigail was cleaning her room. The next thing I knew, she came to show me her school yearbook, when she was in Kindergarten. This was self-initiated on her part. Why did she want to show me the yearbook? Because Mattie had signed it and she wanted me to see this. When she showed it to me, I was stunned, and yet at the same time, was deeply moved that she remembered he signed her book, and that she wanted to show it to me. Ann's other daughter, Katie, also showed me a Scooby Doo DVD that she came across while looking for something else. She said that she was saddened that she found this now, meaning that she knew Mattie loved Scooby Doo and most likely would have liked to see this movie. Clearly Ann's girls know that I am Mattie's mom, but I find it particularly touching that in their own way they want to keep Mattie's memory alive by acknowledging things in their everyday world. I am also fascinated by the fact that they are not afraid or awkward to acknowledge Mattie's presence in their lives.

This afternoon, on my way home, as I was only about a block from our complex, I got into a car accident. A taxi hit my car, but fortunately I was moving very slowly through an intersection, and I wasn't hurt, nor was there much damage to either of our cars. Nonetheless, the whole thing upset me and all I could reflect upon was the simple fact that I have been driving since I was 15 and a half years old, and never once got into an accident. But today, only a block from my home, I had to face another reality, which is you can be the safest driver possible, and yet there are things simply out of your control. Seems to be my theme this year. Living life out of one's control. When perceived control of your world is stripped from your life, it is a highly unsettling and hopeless feeling. After I was hit, I really wasn't sure what to do. I was stuck in the middle of the intersection, so I called Peter and then called Ann. I really felt ill equip to make an intelligent decision, which is unlike me. So I chalked this up to being stunned that I was hit by a car.

Tonight, Peter and I had the opportunity to meet up with Dr. Kristen Snyder for dinner. Kristen was Mattie's oncologist. Kristen is a special person and doctor to us, and it means a great deal to us that she wants to remain a part of our lives. We spoke with Kristen for three hours tonight on a host of different topics, but one thing was for certain, three hours went by very quickly. Our relationship has been built with a solid foundation, respect. I was very touched to hear that Kristen reads Mattie's blog each day, as does her mother, and a close colleague of hers. I asked Kristen if she read the blog while she was Mattie's doctor and her response was, no. When I asked her why, her response to me was very meaningful. She basically said she wanted to allow me the freedom to express whatever I wanted to on the blog, without having me worry she was reading it. In addition, she also felt that our important interactions in which information was exchanged should happen face to face and if I wanted her to know something, she knew I would tell her, and likewise, if she had a question, she would just ask me (rather than reading about a thought or feeling I had on the blog), so in essence she really helped to establish a very authentic and open relationship between us, and this sincerity and honesty means a great deal to me. In my perspective the medical profession would be a lot better off if it had more physicians with Kristen's level of integrity and commitment to patients. I am very aware that other families who lost their child to cancer may not want to meet up with their child's doctor or even return back to the hospital where treatment was sought. I feel the complete opposite. Visiting Georgetown on Sunday and seeing Kristen tonight are very much part of the healing process. In fact, I think having this void in my life for the passed two months has been quite difficult for me, and in a way having this reconnection again has been only beneficial for me.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I read Monday's blog this morning. I am so sorry you and Mary ended up with that social worker- Haven's training staff teaches us never to say, "you'll get over it" or "it will get better with time." We as counselors don't know how you will feel one or two or ten years from now. And there is no "right way to grieve" the death of a loved one. When you decide to clear out some of his or her things is up to you; what you do with them is also up to you. The only people who seem to think they know the right way to do things are those who have not walked the path of grief for someone very close or who have forgotten how very difficult it is. I've read a half dozen books now by parents who have had a child die and what I read so often is this: there is shock and disbelief regardless of how the child died. There is a wish to go back to how it was before the death even if that was not a positive time (the child was ill but he or she was here!); there is often a moment before fully wakening when you are still half asleep that is often peaceful and then then the realization that your child is gone "crashes" on you. I've read this feeling as being "steamrolled" or so heavy as to make it hard to breathe. Anyone who thinks it is easy to face the day starting out like that is living in a fantasy world. However, I can also share that most of them said "you survive and go on, you make a life and you find meaning in doing something." Missing the person never stops, you may cry at anniversaries, holidays and days that have no special meaning but just because you saw or heard something that brought back memories. However, even to get to that point takes time, takes years, not days, not months so be patient with yourself. I hold you gently in my thoughts today and everyday."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I just finished reading yesterday's blog. How did you ever stand that social worker's behavior? Of course, you didn't! You are so right that 'clinicians' like this need to know where they belong and not delve into areas where they are more of a hindrance than a help. I just remembered that she was there because she was a grief counselor from Hospice. I think she missed the training sessions for a person facing a recent loss.This gave me pause because I still struggle with the loss of my Dad and now have been so busy handling my Mom's estate that I seem to be on automatic pilot often. I have been noticing that I don't cry very much and that is disturbing to me as I used to cry at the drop of a hat when sad. Your visit with Olivia and Ann was what you needed yesterday. It gave you a few moments to just be you and that is the most healing. I don't like being busy and doing what others think I should do so I understand that you need to do this on your own terms and in your own way. Your Mom's story was so beautiful as is the orchid. Another example of our loved one still speaking to us even when they aren't in front of us. I so believe that this is another example of faith. It isn't holding on to the pain. It is holding on to the love and desire to connect with those we have loved and lost.I have a friend, Janet, whose daughter died over 25 years ago from a car accident. Renee was 18. It still hurts when we talk about her and we do, to this day. You are Mattie's Mom and always will be. I know that this isn't a new concept, others have said it, yet, I think that you can't hear it often enough. He is with you and these poems that everyone has sent are a gentle reminder of the love, warmth, and pain of your loss.I send hugs and admiration to you today and wish you a simple, relaxing day."