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 ‘chronic illness’ Category

To Be A Sweet Offering

I’ve been reading a lot of poetry lately. The truth is I always read poetry.  For me it is a form of meditation. Yesterday I read for the first time the poem, “Self-Portrait” by David Whyte. One stanza leapt out at me:

I want to know if you are prepared to live in the world with its harsh need to change you. If you can look back with firm eyes saying this is where I stand.

The last few weeks have been challenging for me and my family. The challenge and the pain got an unexpected new dose yesterday with some very troubling family news. I ask for your prayers.

I heard a song last night called, “Encourage Yourself.” One of the lines of the song is, ‎”Sometimes you have to speak victory during the test.”

Mark and I talked last night about the bombardment of pain and bad news that has come our way in rapid fashion. I told him, “Weariness is setting in. I wake up every night at least once where my thought is Jordan is dead and I have to learn to keep going. I’m working hard to live life with a positive outlook.”

“I know, we both are. We’ll make it. We have each other, always.”

“Things are happening so fast. We don’t get a chance to catch our breath, to process what’s happening before something else happens. I don’t want to live my life always on guard. I want to live life with a positive outlook. Life can’t feel like a chore, something to be endured.”

Even in the midst of worry and sorrow there is a piece of my heart that tugs at my soul saying, “Hold on, Spring is coming.” It beckons me but in a voice oh so faint. I’m holding on, wanting to be a sweet offering to my family, friends, the universe and me.

Here is an excerpt from, \”Let It Be Me\,” a post I wrote back in 2010.

I work so hard to stay sane and not slip too far into darkness and depression. Jordan’s life held virtue, humor, caring and so much light. Each day I make a choice to keep going for my family and for me. The future can’t be predicted. I can’t mystically shelter my children from all harm. The shock of loss has slowed my acceptance of the fact that complete protection is an illusion-even if it is fueled by the fiercest love. My vigilance towards my children is still strong. But a parallel vigilance is burgeoning. It still whispers, “let it be me” but the meaning has shifted. Let it be me who remembers all aspects of my son’s too short life. Let it be me that honors in my own way the zeal Jordan had for life. Let it be me that loves life and hopes for joy to come in the morning.

Spring is coming

An Early Valentine To My Village

Picture taken at a local park Valentine's Day 2010

Today when I went to pick the mail up off the floor from underneath the drop slot, I saw a pouch with paw protectors. I smiled remembering that Lindsay and Kendall told me to expect them as one of our fellow neighbors /dog walkers, was going to leave them for Nessie. Apparently they were too small for her dog. She eyed the rubber booties Nessie wore and thought we might like the canvas rubber soled type better. Before owning our dog I didn’t even know some dogs wore booties. Our small pawed, cold hating dog wears them out of necessity. When I saw the pouch lying with the mail it reminded me of how kind and good hearted the people of my community are. Her random act of kindness reminded me of all I have to be thankful for because of the people in my community. Today, even though its 9 degrees and the wind is blowing, the sky is blue and the sun warms my seat on the couch by the window. It feels like a good day to express gratitude and to give a valentine to the village I love.

From the moment we moved in, Mark and I loved our new community. We felt after several job transfers, we’d found the place we wanted to stay. We chose this community over 16 years ago because we wanted a home and a neighborhood that would be the secure base from which our children would learn and make lasting ties. We liked the notion of living in a village, rich with history, which our town is. It has been ideal for us because it has great public schools, is close to downtown and has the nostalgic neighborhood feel, with kids safely playing outside reminiscent of Mark’s and my childhoods. In every way it felt right when we moved here and continues to do so. We moved here with our two young sons and all we saw was a bright future in a friendly environment. Our new neighbors welcomed us warmly with gifts of food and made themselves available to answer questions about the local school Jordan would attend for first grade.

Jordan walked to school with other kids from the block and when Merrick started school he and Jordan walked together. When it came time for middle school for the boys, the bus stop was less than a block away. Lindsay and Kendall hit the friend jackpot on our street. There were five children within a year of their ages that lived on the same side of the street as us. The kids played from yard- to -yard and house- to- house. There was no need for “play dates.” They made friends at school and on the block and their friends’ parents became the friends of Mark and me.

No community is perfect, but ours has proven to be a good fit. The people here have shown themselves to be kind, creative and trustworthy. Block parties are common during the summer, and every Fourth of July our village has a fireworks display at the local high school. People come with lawn chairs or blankets and together we sit and “ooh” and “aah” at the pyrotechnics. Volunteers come around and gather monetary donations to help defray the cost of the event.

One Fourth of July about 5 years ago we got a personal sense of the spirit of the people who make up our village.  During the Webkinz stuffed animal craze (Is it still a craze?) I accidentally dropped Lindsay’s webkinz as we walked back to our car after the fireworks. I didn’t realize until we got home that Zach the beagle wasn’t with us. Lindsay slept with this stuffed animal every night so she was very distraught. I promised her if we didn’t find it in the next few days I’d get her a new one. Until then she found comfort with one of her other stuffed animals. A couple of days later as we drove home from running errands I waited at a stop sign and happened to look up at the brick fence of the home on the corner near the high school. There sat Lindsay’s stuffed animal waiting for its rightful owner. I got out of the car, handed it to Lindsay and after finding his telltale rip she assured me this was her webkinz. I thought then, “This is the only place I know where a kid’s toy would still be here to be claimed.”

When our world was upended On October 12th 2008 with the unimaginable loss of Jordan, our friends and neighbors took action. As we sat numb with grief and in shock, we appreciated that our village is also a place where news spreads quickly and people want to know how to help. It is a place where the then superintendent of the elementary schools, who I know through school board committee work came to my home and said the words few can say at such a devastating time, “I know how you feel.” She sat with me holding my hand telling me the tragic loss of her daughter in a car accident. She did all this on what would have been her daughters 35th birthday. I will always be awed by her compassion and grace.

My family has been enveloped in a quilt of caring, with threads of care that have touched us so profoundly. We experienced firsthand how friends and neighbors gather together and figure out what you need when you’re in the haze of grief and can’t find words. They give without being asked. They pray for you, they hug you; they drop off brownies, books, and flowers on your porch-just in case you’re resting- but all the while wanting you to know that they’re thinking of you.

We have been fed physically and spiritually. In the months after Jordan’s death, meals were dropped off at our home and an account was set up at a local restaurant that provided delivery of meals for 6 months. In the first year, cards arrived almost daily with notes of prayer inside. Cards came from Jordan’s piano teacher, many of his former teachers and the librarian at the high school, and so many from the parents of his friends. All of them expressed their condolences but also shared their special memories of Jordan, which I cherish to this day.

I’ve learned a lot about friendship since Jordan died. Even as my friends experienced their own personal ordeals and worked through grief and losses they found time for my family and me. Friends like Terrie, Lori, Lisa and Michele made a pact with each other to check-in with me just to, “hear my voice,” or “lay eyes on me” if they hadn’t heard from me in more than a few days. And my friends Amy and Jeanne who call me every Saturday morning to ask without judgment or pressure if I’m attending our exercise class. If my answer is “yes” they pick me up and have provided a buffer as I try to gently reenter the world outside of grief.

The neighbors and friends in my village showed the heights of  compassion and loyalty on the day of Jordan’s memorial service. The memorial service was the same day as my daughters’ soccer game. The game was rescheduled because it conflicted with the time of the memorial service and so many families were attending the service that there wouldn’t have been enough girls to field either team.  At the memorial service we walked in to see a church that seats over 700 people filled to capacity. That day we met the parents of some of Jordan’s friends who were there as proxy for their children. Even though they didn’t know Jordan personally their children told them how special Jordan was and is to them.

My village has taught me so much about grace in action. The lessons have come through the many kindnesses of my friends and neighbors. No one ever expects to experience a devastating loss like the death of a child. On many days when grief brings me to my knees, what sees me through, is the compassion and generosity of my family, neighbors and friends. Today I offer this post as my valentine to my village. Thank you for shouldering some of our burden and finding ways to ease our pain.

Our family at Jordan's tree dedication ceremony. The tree was dedicated by Lindsay's and Kendall's Girl Scout Troop.

The Snowy Day and a Friendly Intervention

 

I was outside with the kids on their snow day as they attempted to turn a 5 ft snowdrift located right in front of the garage into a sledding hill, while Mark used the snow blower to clear our driveway and sidewalks. Merrick’s first comment when he came outside was, “Hey Mom, this is the kind of day Jordan and I dreamed about. A snow day like this where we could build tunnels and snow forts, a day just like this.”

I stood watching him for a second imagining what he was imagining and found that my only reply was, “uh huh.” I thought about saying, well your sisters would love to build a fort with you, but I’m so glad I didn’t. When I thought about how saying that would sound, it reminded me of one of those well-meaning comments like, “At least you have the other children to keep you busy.” Merrick had a specific image in mind and the people in it were he and Jordan.

The kids and Mark ended up staying outside much longer than I did. After shoveling part of the deck and snapping pictures of the blizzard aftermath, I was ready to come inside. The cold was making it’s way to my fingertips always a sign that lupus was at work. After pulling off my boots and hanging up my coat, I assigned myself to chuck wagon duty.  I found a container of turkey hash in the freezer that my parents made when they were here for Christmas. It would be the perfect warm-up meal and give me something to do so I didn’t feel like I was wimping out by not being outside.

The hash was going to take a while to warm so I found some leftover spaghetti in the fridge and heated that up for myself even though I was tempted to wait by the aroma of the turkey, potatoes and onions. I could hear Lindsay and Kendall playing and the steady sound of the snow blower so I knew it would be awhile before everyone came in. Everyone. Kendall said earlier in the day when she realized her dad was staying home too, “We’re all here together.” Her words wandered through my head as I ate and then I just laid my fork down and put my head in my hands. I sat at the table and tears filled my voice as I said aloud, “I miss you Jordan. I want to call you and talk to you today.” I invited all the lurking sadness to sit with me awhile without fear of being shooed away.

Sitting and crying I knew I couldn’t have what I wanted. I wanted to send Jordan pictures of his siblings trying to sled down the 5 ft snowdrift in front of the garage and of his dad snow blowing the driveway so bundled, that all you could see was his nose. Jordan knew how much his dad hated the cold. I wanted to call him and make sure he was prepared for the storm coming his way and that he was safe and warm and dry.

While I sat, I allowed myself to imagine what Jordan would be doing, something I haven’t been able to do very often anymore. With eyes closed, I saw him studying and hanging out in the hallway of his dorm talking to friends. The images came so readily and then just as quickly they dissipated.  I got up and cleared my lunch dishes and resigned myself to a wistful day.

I wandered over to the couch and sat down with my laptop.  I looked at my emails to find that Jordan’s friend Kathryn had emailed me with, “just checking in,” as the subject line. She told me about her classes and how she’d been thinking of the family and me. I wrote her back immediately telling her she was the warmth and sunshine I needed at just the right time. My melancholy was getting mixed with a little joy. After I emailed Kathryn I decided to email Jordan’s friend Matt. Kathryn told me that she’d spoken with him a few days before. In my email to her I closed by saying, “I’m so glad two of Jordan’s favorite people are becoming such good friends.”

I didn’t get to see Matt over the holidays and it felt like the right time to reach out to him, so I extended the check-in started by Kathryn. After asking about his classes and after graduation plans, on an impulse I sent him hometown pictures of all the snow and one of Merrick in an, “American Gothic,” pose, shovel in hand.

When I closed my laptop after writing the emails I noticed the difference in how I felt. I said a silent thank you to Jordan for sending his friends to me, so that missing him hurt a little less.

Jordan’s Snow Days

Christmas in Ohio 1990 Jordan's first snow. Mark is shovelling in the background.

Still loving playing in the snow as a teenager

 

Unexpected Gifts, Good Sleep and Exercise

Today I went back to my exercise class for the first time since early fall. A foot injury prevented me from going before and it felt so good to exercise and dance and see familiar faces happy I’d returned. The last few days have given me renewed energy and I’m so grateful.

Every 4 weeks I receive one of the drugs for my lupus by IV infusion.  The appointment is something that I’ve worked into my routine knowing that when I arrive I’ll be weighed, have my vital signs taken and then have an IV inserted. While the medication drips I’ll read, sleep or talk to my nurse until it’s time for the 15 minute vital signs check. This past week’s appointment had an added bonus. As I rose to leave my nurse stopped me, handing me a box. “I’m sorry I missed you last month but here’s a gift for you. I like my patients to know how special they are to me.”

I sat feeling surprised and special saying, “thank you,” before I even opened the box. “Can I open it now?”

“Of course you can. I hope you like it.”

I opened the box to find a beautiful scarf woven with all the colors I love. “It’s beautiful. I’m going to put it on right now.”

“You really like it? I’m so glad.”

I hugged her goodbye and walked out into the cold, loving my new scarf and grateful that on that day, I left my appointment so much better than when I came.

My beautiful new scarf

*

For the first time in months I’ve been able to rest, really rest where I fall asleep and wake up refreshed. I even took a nap on Thursday and Friday. I’m stunned that restlessness and a worried mind have quieted enough for me to fall asleep without having to work too hard. But last evening when I woke up I was cold and feeling sadness seeping in. Jordan, I miss you. I don’t know how to not to miss you so much.

I went downstairs joining Mark and the kids who’d already started eating dinner. After dinner I got out my laptop and checked email. I honed in on an email from one of Jordan’s friends. She told me that she’d been dreaming of Jordan all week, waking up to a tear soaked pillow. She went on to say that she finally had a dream last night where they were off on an adventure as though they were amateur spies. It was the first time she didn’t wake crying. She ended her note saying, “Whenever I’m having a hard time with classes or friends I find myself asking how Jordan would handle it. He was a great student and an even better friend.

I miss him a lot.”

I took a breath then reread her note. Not an hour before I opened her email, I’d asked Jordan how it was possible to keep going while missing him so much. Then, there was this note from one of his friends who’d never written me before to tell me how much Jordan is still a part of her life. The reverberations of loss don’t stop with my family or me. I wrote her back acknowledging how hard tough dreams about Jordan can be, but how wonderful the special dreams are. I ended my note to her telling her to please keep in touch and letting her know, “We can miss him together.” I showed Mark the email and my response and then showed him a line from one of my blog posts:

Jordan’s spirit is in the coincidences of his name appearing or being overheard when I miss him most. He is in the emails and notes from his friends reaching out to me when I ache for him.

I think Jordan was again reminding me of his presence. His friend reached out to me and I can reach out to her and to others. All of us who love and miss Jordan can ease our pain and sorrow, even if it’s just a little bit by knowing that we can miss him together.

Reading Jordan’s Gratitude List

I am participating in an online workshop given by my dear friend Tom Zuba called, “Living With the Holidays.” The workshop started on November 1st and the exercise yesterday was to:

Consider gathering a few items that connect you to the person (people) you love that have died.  Find a space for them.  In your bedroom.  In your home office.  Somewhere in your house.  It can be a place you pass often…or it can be an out-of-the way place in your house.  A destination, if you will.  A place you consciously have to decide to go to.

I thought a great deal about what items connected me to Jordan. I have pictures of him that I love and chose a few of them. I knew I wanted one of his shirts that still faintly holds his scent. His Ipod is something that I love scrolling through reading the titles of  and listening to the vast and varied  music, so that is in my “Connectedness” collection. I wanted a book because of Jordan’s love of reading, but couldn’t figure out which one to choose. Last night I sat down in the chair on our 2nd floor landing, something I rarely do, looked down and saw a book with an encircled half-moon and stars on the cover. It is one of Jordan’s journals from his youth. I flipped through it seeing his early attempts at rap, the beginnings of short stories and a gratitude list.

I sat reading and rereading  Jordan’s gratitude list, touching the page and smiling at his undeniable penmanship.  I remember when he wrote the list. I owned a copy of “Simple Abundance,”  by Sarah Ban Breathnach that I’d purchased right after it came out in 1996. I hadn’t followed it prescriptively but I liked the notion of focusing on gratitude.

One night when Jordan was in junior high and Merrick was in 3rd or 4th grade, the three of us  sat at our kitchen table and talked about gratitude. I don’t recall what prompted the conversation but we talked about the aspects of your life, not just things, that you are grateful for. I told them about gratitude journals and getting into the practice of writing down what you are grateful for before you go to sleep. I was going to make my gratitude list, before I went to sleep and challenged them to do the same. They were both reluctant, “Why do we have to write it down? Can’t we just think about it?”  I assured them that it was their list and they didn’t have to read it aloud or share it with anyone. The power was in taking time to reflect and to commit to writing those things you may take for granted but that bring peace and joy to your life.

I felt an instant connection to Jordan when I read his gratitude list. Even as I wonder how I can live in a world that took Jordan away, reading his list made me realize he is still bringing me peace and joy. In moments when I am so battered from the aches, tears, and sleeplessness that come from missing him, he reminds me about gratitude.

Here is Jordan’s List:

The List (Things I am grateful for)

  1. My friends and family
  2. My health
  3. The good neighborhood I live in
  4. My being able to eat every night
  5. My knowledge
  6. My good school
  7. My home
  8. Being able to concentrate at school
  9. People who care about me
  10. The luxuries I have that others don’t

Jordan drew a line after number 10 and then added the following:

11. My sisters

12. No homework

13. My bed

14. Sleep

I found Jordan’s journal as I faced another sleepless night wondering how long I would hurt so much. Having to accept, not just know, but come to full agreement with my heart and soul that my child is dead is the hardest thing I’ve ever faced. It is a journey of recalculating what truth means, of acknowledging how much pain I hold inside me and it is about wanting to feel better even when it means saying goodbye to my boy again and again.

I read Jordan’s words last night and added my own to the list.

I am so grateful to be Jordan’s mother and still have the opportunity to learn from him.

A New System

Since Jordan’s celebration on Saturday, I’ve had the eerie, awkward feeling of “now what?” Now what do I do to keep  Jordan close to me? Planning the event and being able to talk so freely with others about Jordan without feeling self-conscious was a relief. A fear that I’ve had since Jordan died is that he would be forgotten. Being with family and friends, receiving cards or calls around Jordan’s birthday was comforting and reassuring.

Intellectually I know that I’m not the only one that misses my son. Still, on days when I sit quietly and others are rightfully back to their daily lives, my mama heart surges and wants the world to know “Jordan was here!” I’ve been having surreal Mama moments over the last few days. I’m feeling myself winding down from the emotional intensity I felt during the beginning of August with the girls’ birthdays and Jordan’s 21st birthday and celebration. I’m also aware that I always feel a wistfulness. I’m starting to realize this wistfulness is a new part of me. I will always miss my son. The intensity of the longing ebbs and flows but it is living inside of me. I’m not going to fight this new system coursing through my body. It is making its place next to my veins, arteries and major life organs. It is a major life system. My knowledge of anatomy didn’t prepare me for the physical changes that grief would bring. I can’t fully describe the physicality of longing but I feel the change within me. I feel it the same way I feel my breath, my heartbeat, and every ache and pain.

I never thought I’d say this, but I’m grateful that I have lupus. It has given me a guide to chronic conditions, and allowed me to accept the chronic nature of certain aspects of grief. I spent the first 15 years of having lupus in denial. Every time I went for long periods without a flare, I deemed myself cured. Then when debilitating fatigue, swollen joints and fevers would return I was always shocked and angry. I spent so much energy fighting my illness which only made it worse. It wasn’t until I decided that I would take care of myself as best I could and live with lupus instead of fighting against it, that I start to live a healthier, whole life.

Grief feels a bit like lupus to me. I can’t pretend that because I’ve had several days (sometimes longer) of feeling functional and hopeful that I’m done with the soul shaking, debilitating parts of grief. My experience to date lets me know otherwise. Grief does not follow a linear path. There are minefields that bring me to my knees no matter how functional and at peace I felt before. If I try to deny that sorrow will return with varying degrees of force, I hurt more than if I allow myself to feel what I’m feeling and know that just like flares from lupus, I’ll get through my flares of grief. I’m wistfully learning to accept my new normal.

Let It Be Me

Being diagnosed with lupus(www.lupus.org) at the age of 23 turned my “carefree 20’s” into a time of tests, lifestyle changes and medications. It was also however, a time of graduate school, love, marriage and my sons. My husband Mark knew of my illness well before we were engaged. In my attempt at full disclosure to whom he was marrying, I made sure he understood that I had an illness that I and now he would have to deal with for the rest of our lives. His only response to me was to quote a line from an Anita Baker song(\”Just Because\”) and tell me “it was a welcome sacrifice.” He loved me and anything that happened would be “our” problem.

Health issues have always been a part of my adult life. I’ve had numerous surgeries including the most traumatic one when I lived in Houston, TX. In 1995 I was told that an MRI showed a tumor on my spinal cord. My doctor at the time came into the exam room, looked at me and quietly said, “It’s not good news.” During the week between diagnosis and surgery the doctors had no doubt that the MRI scan showed an astrocytoma- a cancerous tumor with a typical life expectancy of 5-7 years.

In the week before my surgery I obsessively added and re-added those 5-7 years to my 32 years of age. My counting was always done in terms of how old my boys would be when I died. I counted and recounted determined to live long enough so that my then 5 and almost 3-year old boys would have their own memories of me. If I couldn’t live to raise them I wanted them to at least be able to recall special moments we had together; to remember what it felt like to have me as their mother. I poured all of my prayer and positive energy into a full recovery. I wanted Mark and I to raise our sons together. The surgery was successful and showed that the surgeons initial diagnosis was incorrect. The tumor was benign. I’d been given my life back.

In 1999 after the birth of my twin daughters, complications arose and I awoke from general anesthesia to hear Mark whispering in my ear that the doctors had to perform emergency surgery to stop the bleeding that started during delivery. In a soothing but shaky voice he told me that I’d suffered tremendous blood loss. He quietly said, “We almost lost you.” I listened to his words and my first question to him was, “Are the babies alright?” He assured me our daughters were premature but doing well. I drifted back to sleep relieved that my children were okay. I was grateful to be alive for all of my children.

Every time I had doctor’s appointments or hospital stays I was keenly aware of the sick children that were there. Any moments of self-pity I had were erased as soon as I saw a sick child. I would silently pray for the child and their family and then be grateful that I was the one enduring the unknown with painful tests and hospital stays. If it had to be someone in my family that was sick, I wanted it to be me. I felt that I had an unspoken pact with God that any suffering to befall my family should come to me.

I never shared my feelings about my pact with anyone. I held it close as my way of keeping my children from harm. Like most parents I wanted my children protected and free from as much danger and pain as possible. Even those times when I was faced with death, I knew should anything happen to me, I had no doubt that Mark would love and care for our children. My silent pact boiled down to its essence simply put was, “let it be me. “

I know how foolish, superstitious and naïve I was to believe that I could have a contract with God that included an immunity clause for my children.  It was still the deal that I wanted. I was to be the sponge that dealt with pain, my children would be spared. Intellectually I knew every time I whispered,” I glad it’s me and not the kids,” that I was operating under an illusion of control. There are no deals with God and he doesn’t offer immunity clauses. The fierceness of my Mother Love however, prevailed over logic and reason. Time and time again I truly believed that I was cocooning my children from harm. “Let it be me.”

Then the illusion that was my pact shattered. Our phone rings late at night and two police officers come to our door telling us the words no parent wants to hear. Our son was dead. Jordan was killed in a car accident. He was gone and all of the notions I had about my accumulated pain and suffering being the buffer that would provide my family some immunity from further tragedy was nullified. Even in my haze of shock and grief I felt so stupid. There are no bargains or immunity clauses. All I had to do was look around to see all the tragedy in the world to know that my family is not exempt because I made a one-sided deal with God.

My son is gone. Since Jordan’s death I struggle not to veer to the extreme and feel that my children will never truly be safe.  I still have my moments, my days when the thought heaviest on my mind is, “Let it be me.” I work so hard to stay sane and not slip too far into darkness and depression. Jordan’s life held virtue, humor, caring and so much light. Each day I make a choice to keep going for my family and for me. The future can’t be predicted. I can’t mystically shelter my children from all harm. The shock of loss has slowed my acceptance of the fact that complete protection is an illusion-even if it is fueled by the fiercest love. My vigilance towards my children is still strong. But a parallel vigilance is burgeoning. It still whispers, “let it be me” but the meaning has shifted. Let it be me who remembers all aspects of my son’s too short life. Let it be me that honors in my own way the zeal Jordan had for life. Let it be me that loves life and hopes for joy to come in the morning.