Sharing my mourning journey as my family learns to live a new normal after the death of my 19 y.o. son in an auto accident on 10/12/08.

Archive for the ‘lupus’ Category

Calls

Yesterday was a hard day. All day I thought about how much I missed Jordan and giving anything to hear his voice. Some days hit me so hard. I don’t try to figure out what triggers especially hard days of grief, the reasons make themselves apparent. Sometimes grief knocks me over and the triggers are easy to trace. At times it will be a whoppingly inappropriate question coming from someone who should know better, “You have a son in college right?” Other times it is seeing the grief of my husband or children as they struggle with their own pain of loss. Sometimes it is unexpectedly coming across something that belongs to Jordan and being transported to the “before” days. During the Christmas holidays, I absentmindedly picked up an old comforter and as I brought it close I could still smell Jordan’s scent on it. I was brought to my knees. I held it, inhaled and wept.

I’m learning that grief can hit hard with whispers too. Today it seeped in and took hold little by little. The day started off sunny, but as the day grew grayer so did my mood. The gray day was also affecting Kendall. Lindsay had plans for the day, but Kendall was feeling agitated because the lack of plans was making her uneasy. I needed her to know that she could be with herself, and be at home without the need for plans with friends. She struggled to think of something to do and then sank into a chair with an anti-stress, squeeze balI that she was tossing into the air. She dropped it more than she was catching it. She positioned herself in a chair right outside my room as I lay on my bed determined to ignore the sound and prayed for strength and healing.

Lupus was causing physical aches. I had taken a bath and stretched trying to care for my body. I wanted and needed to rest, but I also wanted and needed to be with Kendall. I knew that I had to be present for her. I was aware that lately I had been retreating when not feeling well either physically or emotionally. I didn’t want her to learn that grief was something that always had to be endured alone. I prayed a specific prayer. I asked God to help me to think of a way to be with my child so she knew that she wasn’t suffering alone and to give us both some peace.

I allowed myself to rest, even as the sound of the ball echoed in the hallway. After I rested for a while, I figured out what the two of us could do that wasn’t taxing to me physically but allowed us to be together. When I got up and went into the hallway Kendall was gone. I stopped in the office to look for a Studs Terkel book Merrick could use for his history paper. As I looked for the book I came across another book entitled, “Healing Your Grieving Heart for Kids: 100 Practical Ideas.” I looked at the book trying to remember when I purchased it. As I flipped through it, I realized it was a book Lindsay had borrowed from the library of the family support group we attended last year. I took the book downstairs and found Lindsay and Kendall sitting in the family room reading. Kendall seemed much less agitated than she had earlier. I asked her if she wanted me to give her a manicure while Lindsay was out with her friends. She gave a hint of a smile and said, “Sure.” I then told Lindsay about finding the book. I told her I would mail it back to Willow House. I showed Kendall the book and read a few of the suggestions aloud to Lindsay and her:

28. Play Sports

32. Pack a Memory Box

36. Hug

37. Hold Hands

38. Clean Your Room (This one got a big laugh and the girls demanded to see if I was making it up.)

39. Pray

I gave the book to Kendall and told her to look through it because it has some good ideas. Kendall flipped through the book and started reading things to Lindsay and me. She read:

42. Put up pictures of the person who died

49. Eat Something Weird (try a food you’ve never tried before)

53. Listen to Music

She looked through the book quietly for a little longer and then returned to her previous book. The three of us then sat at the table and had lunch. Kendall was feeling better and so was I.

After Mark left to take Lindsay and run errands, Kendall and I set up our manicure station. I had Kendall soak her hands in a bowl of warm soapy water. I remembered the old Palmolive soap commercial with Madge the manicurist and smiled to myself. Kendall picked two colors that she wanted alternated on her nails. We talked easily about school and our upcoming trip for Spring break. Merrick wandered downstairs while I was painting Kendall’s nails. He readied our dog Nessy to take her for a walk. I told him when he got back it was his turn for a manicure.  He looked at me in mock horror, bringing his hand to his chest. He finally agreed when he realized all I wanted was for him to soak his hands so I could push his cuticles back, no nail polish involved. As he and I sat, he asked me about the Oscars. I told him I didn’t have a best movie pick because I hadn’t seen enough of the movies. He told me his prediction and choice for “Hurt Locker” even though he loved “Avatar.”

After Merrick went back upstairs I felt the weariness of earlier in the day returning. It was such a gloomy day. Rain drizzled and my body ached. I wanted to lie down, but felt that missing Jordan would make resting too much of a struggle. I wanted more than anything to talk to Jordan. To have a conversation with him on the phone while away at school was such an ordinary wish that now could not be granted.

Jordan’s voice is captured in so many ways. He made music. He loved to make beats and would rap/freestyle over them. One that I treasure has him talking to Merrick in the beginning, while music plays in the background. He then starts to freestyle. There are days when I listen to “Jordan’s Rap” over and over and cry. Just being able to hear his voice connects me to him. As I stood at the kitchen sink, I realized that Merrick asking me, “Which movie do you think is going to win the Oscars?” took my grief and covered it with longing for Jordan. Merrick was so excited about watching the Oscars. I shared a bit in his excitement making predictions in certain categories.  All the while, grief was seeping in and my longing to be able to call Jordan was growing stronger. I thought about his cell phone. I haven’t disconnected it yet. I almost did on Friday. I called AT&T but hung up. I wasn’t ready to ask them about getting a recording of Jordan’s voicemail message, or recording his voice on my own. Having to explain the reason I needed the recording is still so heartbreaking and takes so much energy. Plus, there are so many in our family including Lindsay, Kendall and Merrick that still from time to time call his cell phone just to hear his voice.

When Mark came home I expressed how much I wanted to hear Jordan’s voice. I told him,

“It’s Sunday and we call Jordan on Sundays. I want to hear his voice. The Oscars are coming on and we would talk to him and debate our picks.”

Mark told me he had a similar moment in the car when he was listening to the Lakers game on the radio. He missed Jordan and had the same desire to just call him and talk about the game. I stood by the sink and cried. Mark rubbed my arm and just said, “I know.” Grief was creeping in and I had to make room for it and let it happen.

I watched the Oscars with Mark as Merrick bounced in and out of the room to check our reactions to certain categories. Mark and I made a point of changing the channel so as not to see the montage of movie industry artists who died in 2009. Watching the list of those lost brings too much additional pain. I went to bed, willing myself to fall asleep as I hoped that the images of seeing Jordan in the casket and sitting at the memorial service, that were trying to crowd my mind would dissipate. Jordan is gone. I hear his voice on his voicemail message, in his songs, and on the video recordings we have of his life. Grief comes to call in different ways. Today it crept in and followed me around. I’ll never stop missing my boy or wishing to have more time with him.

Early days

Out in the World

Relationships are eternal

Beautiful days hurt. The sky is so clear; the weather is warm but carries the vestiges of fall. So beautiful it’s almost perfect. The kind of day that makes you feel like you should be outside enjoying these last warm days, feeling the sun on your face. I try to get out everyday but I don’t always succeed. Sometimes, I don’t make it farther than my front porch but I know the sun on my face is a healing power. The warmth and light that will help keep depression at bay.

Everyday is not a bad day. There are days when I can leave the house feeling okay. I’ve put on clothes that make me feel good about myself, a little make-up and have a hopeful energy that propels me out the door.  On other days no matter how I feel I have to leave the house because of meetings with the kids’ teachers, going to the grocery store, doctor appointments, etc. Even on some of these days I’ll look put together. Nothing about my appearance suggests that inside there is sorrow bubbling under the surface. I met a friend for lunch on one of my put together days. She commented on my outfit and how nice I looked. My response to her was “smoke and mirrors”. I told her that I learned after battling for years with lupus that if you look okay people assume you are okay. Smoke and mirrors are my protective armor against the pitying looks accompanied by the singsong “How are you” you get in a small community when everyone knows your world has crumbled but some don’t want to get too close to the pain for fear it might be catching. Smoke and mirrors however only help for a little while. There comes a point when the sadness in my eyes and the way my mouth unbeknownst to me is downturned into a pout/grimace override any appearance tricks. I have the look of frailty and vulnerability.

I told a dear friend Tom , who has suffered tremendous loss -yet lives a life of hope that includes joy- about my dilemma. I told him I wish our society still allowed public mourning and was more comfortable with death. Joan Didion in her book,”The Year Of Magical Thinking quotes Geoffrey Gorer who in his 1965 book Death, Grief and Mourning describes our society’s rejection of public mourning and “gives social admiration to the bereaved who hide their grief so fully that no one would guess anything had happened.” This is the world we live in, wearing mourning clothes are no longer in vogue and yet there needs to be some way the world can know when they are dealing with a person fragile from the forces of losing a loved one. There are t-shirts and wristbands for everything else; mourning should get its own special dispensation. I need a way for the world to know on my truly frail days to please be gentle with me I’m grieving and my heart is so heavy. For me gentle means not staring if you know me and aren’t going to say hello, it means patiently allowing me the extra time it sometimes takes to find my wallet or give the correct amount of money because my hands are shaking, not taking offense if I don’t say hello, especially if I have a far off distant look. I’m learning that there is no timeline on grief and that what I ask of the world I have to respectfully ask of myself. Be gentle, don’t rush, someone precious has been lost. Jackie, be good to yourself.