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.

Posts tagged ‘lupus’

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

Just Beneath the Surface- A Father’s Grief

My husband Mark is the guest blogger for today. So, instead of Always Mom of 4, you’ll be hearing from Always Dad of 4. I’m grateful that he agreed to give the perspective of a grieving father which is not frequently heard.

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Jackie asked me to host blog today, looking to inject a different perspective into the journal of our journey since the loss of Jordan.  I am honored and a bit intimidated in opening up in a forum like this, but I told her I’d give it a shot.

Last night, as I reached up to rub part of my back that is aching but in one of those hard to reach areas, I wrenched my face in obvious discomfort.  Not knowing that I was being watched, I heard a careful whisper from the corner of the room, “Oh no, Dad, is there something wrong with you too?”  The, “too,” part of her question came because Merrick was already sick and her mom had been resting a lot lately dealing with a flare from lupus.

“No baby.  My back is just sore because of the way I was sitting over there on the couch.  Don’t worry, I’m fine.” Always the worrier, she just wanted reassurance that things wouldn’t take an unexpected turn for the worse.  After all, Jordan always called me “the healthy one.”  In the cold of late February and early March we got hit with a series of sniffling noses and achy bodies.  Recently, Merrick had been home for two days, as it turns out sick with strep throat.  Jackie’s lupus  has shown up this time as inflammation of her right Achilles tendon.  Hard for her to get around when that happens.  The girls just recovered from colds and a few days off from school.  I’m fighting off a cold as well, but as all parents do, I reassure the children that I’m ok and here to make sure that things will get back on track.   But sometimes I wonder, will they ever? I can’t give that assurance to our children anymore that “nothing bad will happen.”

I’ve tried to explain to my friends and family that the death of Jordan seems analogous to losing a leg and then being forced to learn in a short amount of time to walk again with a prosthetic. It makes it look to the outside world like I’m a perfectly intact human being, but that is far from the truth. I can stand up straight, but that limb, my Jordan, is still gone. While I can function, go to work everyday and have an outward appearance of being “ok,” the pain and sadness is right under the surface.  It sits quietly with my soul similar to the way Jordan as a young child would keep his hand on my arm when we were sitting close as if to always keep me near. He was my oldest and that hand on my arm was a physical reminder of my stature as a father and caregiver. I would look down at his hand reassuring him, I’m here, you have me.”

I still feel that hand on my arm.  Now the hand is a reminder that just as I’m a father and caregiver, I’m also a grieving dad. I’m learning how to move through life with this new moniker. The first two were expected and eagerly anticipated, the latter an intrusion and shock.  But I continue to push forward.  So to my babies, who know me well and walk with me on this journey, I do at times say, “I’m ok,” and assure them that if I can help, I’ll be here for them and I will do everything I can to make sure that they don’t have to face the unwelcomed shocks alone.  If they come, we’ll keep pushing forward.

Since Jordan died, we all move with a vigilance, trying to ward off unexpected bad news. I say that knowing that keeping the realities of life at bay is impossible, but right now it feels like reassuring my children about the little things, like my achy back is a concrete way to make them feel secure. As a parent, sometimes I feel like I’m desperately trying to keep things on an even keel so as not to give rise to the tsunami of emotions that come along with knowing that our lives can be changed in an instant.  Nothing is guaranteed.

A few weeks ago I was watching one of my favorite movies, “Dances with Wolves.” The girls walked into the room curious about what I was watching and joined me. While trying to enjoy the movie I also took the opportunity to share with them the beautiful filmmaking and historical relevance of the story. During an intense chase scene, when the US Marshalls were descending on the Native American tribe, one of my daughters turned to run upstairs.  I protested saying, “Hey don’t you want to see what happens?”

“No” was her immediate response but I paused the movie to urge her to stay and watch.  I told her that the man and woman wouldn’t be separated forever, but the tribe had to move on and they were splitting apart for a little while.  I made the mistake of saying, “It’s a movie, everything works out ok, but their lives are changed.”

She looked at me saying, “How can you say everything works out ok when my brother didn’t come home from school?  That didn’t work out ok, he’s gone.”  I turned off the movie, called her down to sit with me and just held her as she cried.

All I could say to her was, “You’re right. Things don’t always have a happy ending. But even when they don’t people still continue to move forward.” For all of my family, the fear of sudden loss is just under the surface.  My babies learned at an early age that life, while full of promises, could also offer bitter disappointment and sorrow. As parents Jackie and I choose to continue to move forward telling our children that time will help diminish the pain of sorrow and that Jordan will always be a part of our lives.

 

Mark and Jordan reading the paper

Always Dad of 4

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

 

Worldwide Candle Lighting

December 12th was the Worldwide Candle Lightning ceremony which is sponsored by The Compassionate Friends organization. At 7pm, your local time, they asked that you light a candle for a child that died so that around the world, there will be 24 hours of light in remembrance .I posted their “poster” on my Facebook page asking friends and family to join in the ceremony.

We have a Jordan candle that we bought in 2008 specifically for the candle lighting ceremony. A couple of hours before 7 pm sadness started to seep in and the ceremonial candle lighting felt more onerous than comforting. Mark and I got were out most of the afternoon  running errands and the thought of one light flickering to honor Jordan made me think of the first year we lit the candle.  Mark the girls and I sat numbly and cried, while Merrick stood pacing as the candle flickered. Merrick finally asked to be excused and escaped to his room. Last year was less ceremonial. I lit the candle on my own and when one of the kids asked why, I told them, “It’s for the candle lighting ceremony to honor children who died.” From each of them I received an, “Oh,” as they went about their way.

I didn’t want to light Jordan’s candle if it meant adding to our sadness. Many days Mark or I will light the candle when we are missing Jordan and have no place to focus our longing. The flame gives us peace. We’ve both held  our daughters after they’ve lit Jordan’s candle because they miss him so much. Each time the lit candle was a point of comfort and connection. But on the ceremonial day it started to make me feel like I was slipping deeper into mourning.

Anxiety about lighting the candle started to bother me. I finally told myself, “You don’t have to wait until 7. It’s your house, light it when you’re ready.” I also felt like that one candle wasn’t enough to illuminate the spirit of Jordan. Jordan loved Christmas and as our house slowly takes on the air of the season the spirit of Christmas needed to be intertwined with Jordan’s spirit so I could imagine him singing Christmas carols in his silly falsetto voice and feeling him close. I gathered all the tea light holders that we have and placed them on the mantel of the fireplace and around our family room. Well before 7 I lit them all including Jordan’s candle. Mark came into the house after shoveling snow and said, “Oh it looks nice. You lit the candles already?”

“Yeah, I couldn’t wait until 7 it was making me too sad. I figured it’s 7 o’clock somewhere. Plus, Jordan needed more than one candle.”

“Are you okay?”

“I don’t know. I miss so much. Why isn’t he here?”

“I miss him too. We’re going to be alright.”

I nodded my head and gazed at Jordan’s candle. As I felt sadness filling me I reminded myself, “You’re doing this to honor Jordan. If it makes you too sad, then don’t do it.”

I thought of all the ways I kept myself afloat when I went to doctors’ appointments for lupus. Every time I walked in the door of the hospital I reminded myself, “Remember how you’re feeling right now, no matter what the lab work says you won’t come out feeling sicker than you did when you went in.”

I used the same logic for the Candle Lighting ceremony. “Remember how you’ve felt today. You miss Jordan but today has been okay.”

I intently gazed at Jordan’s candle reminding myself that I’d lit it because I wanted our family to honor his memory not to bring on additional sadness.  The flames flickered and I thought of other children I knew who were gone but forever loved: Dougie, Dawn, Paige, Marcus, Larry Jr., Rory, Max, Hudson, Henry, Heather, Trina, Matt and so many others. After a sweeping look around the room at all the candles burning and a, “I love you Jordan,” I got up and checked on dinner. The candles burned in the background filling the room with light.

Blessings

We didn’t go to the open house at the high school. After all of my hand wringing, guilt and finally fortitude I wasn’t able to go. Mentally and emotionally I was prepared. In the end lupus took over. After a fitful night’s sleep, I woke up yesterday morning with swollen joints and fatigue. I probably could have soldiered through but I talked to Mark and we decided that we would email Merrick’s teachers and set up individual meetings with them. I was in bed early and looked at the clock realizing had I gone, I would still be at the high school. Taking care of myself while Mark supervised dinner and homework turned out to be the best solution.

I didn’t want to push myself too much yesterday and feel even sicker today. My 22nd wedding anniversary is today. I am so honored and proud to have Mark as my partner on our journey. Through health scares, moves and the ultimate loss, the death of our son Jordan, I have never doubted the strength of my marriage. Even in loss and sorrow when we’ve held each other and wept together I’ve been grateful that he is my life partner. I’m glad that I’m feeling better. Today is for celebrating 22 years with a man who brings perspective, comfort and so much laughter into my world.

Mark and I summer of '08

Here is the song played during our first dance at our wedding.

I’m feeling sentimental today and very blessed.

Back To School

When my kids go back to school, it is always an anxious time for me. When I was working quasi part-time (4 days a week) I chalked my anxiety up to the stress of working and keeping track of all the beginning of the year activities like, open houses, parent “meet and greets” and the start of soccer season. It’s been over 10 years since I worked outside of the home and I still react to the beginning of the school year the same way. I know that my angst stems from more than just an overloaded schedule.

The physical energy needed to obtain what everybody needs always brings on distress for me. Heralding the school year with the lunch boxes and school supplies, carpooling and homework assistance typically brings on a lupus flare. In years past, because of being ill from lupus, I missed one open houses. On these occasions, Mark would go without me, taking copious notes knowing what questions I would ask of him about the teachers and the curriculum when he got home.  It didn’t matter how well he handled the task alone. It didn’t matter how quickly my kids got over their disappointment that I wasn’t going to meet their teachers that particular night. I felt guilty that I wasn’t going. My inner critic badgered me with questions like,  “What’s wrong with you?” “Can’t you suck it up for a couple of hours?”  The guilt and self-criticism got worse once I stopped working. “You’re not even working and you still can’t pull it together to go to your kids’ schools.” Even though one of the best remedies for a lupus flare is rest, for me it was hard to come by with such a harsh inner critic at the helm.

With time and help, I’ve learned to quiet but not silence my very intense inner critic. When I feel myself going down the, “You should be able to…” path, I’m quicker now to take care of myself and remember to do what I always urge others to, “Be good to yourself.” Still, I’m wrestling with my “back to school” demons as Open Houses kickoff this week for my kids. At both the middle school and the high school, the open houses are conducted the same way. Parents/Guardians follow their child’s daily, albeit abbreviated, schedule and meet all of their teachers. Going to my daughters’ school, which was also Jordan and Merrick’s middle school isn’t presenting any problems for me. It is going to the high school that has me paralyzed. Mark isn’t sure he’ll be able to go this year and I’m not sure I can go alone.

For Jordan’s freshman year at the high school, Mark went to the first open house by himself. That first year he came home to tell me of all of Jordan’s teachers and his workload. I listened eagerly, liking what I heard and determined not to miss another open house. In the years that followed, Mark and I went to the high school open houses, bumbling along with all the other parents through the 4-story building with its mazes of hallways. It was easy to get turned around because the numbering of rooms follows no logical order. Walking the halls of that massive high school trying to find classrooms has always been difficult for me. I am self-diagnosed as spatially and directionally challenged. Offering me assistance by telling me to travel east or that a building is on the northwest corner sounds like a foreign language. When Mark and I lived in Houston I called him from work during one of our first days there to give me directions to the supermarket. This time was before cell phones or I would have kept him on the line until I reached my destination. Instead I relied on directions written on a scrap of paper. He started his directions with, “When you get to the top of the street, make a left.” I immediately stopped him. I snapped, “Remember who you’re talking to. When I get to the end of the driveway which way do I turn?” I’ve always needed “left”, “right” directions with plenty of landmarks thrown in for cushion. Each time I’m at the high school for a meeting I ask for directions along with the room number and allow myself “getting lost” time.

Last year was our first open house at the high school for Merrick even though he was a junior. He did a mid-year transfer from a private school his sophomore year, so we missed the previous year’s open house. While I’d been as far as the “Welcome Center” to drop off Merrick’s registration forms, the open house was the first time back, walking the halls of the high school since Jordan died. There was trepidation for both Mark and I, wondering how it would feel to bump into teachers we hadn’t seen since Jordan died or even sit in classrooms that he once occupied.  With all of our sorrow and fear, we were determined to go. Our children need to know that we are fully invested in their presents and their futures. I kept telling Mark, “It’s Merrick’s school now too.”

We walked from our home to the high school holding hands while catching each other up on our days. We entered the school and were forced into the crush of other parents angling for a place in line to pick up their child’s schedule. There wouldn’t be much time to reminisce. I was relieved. I wanted my focus to be on Merrick, even though every thought had as its backdrop images of Jordan walking the halls. I was hoping too that we wouldn’t run into any well-meaning friends or acquaintances that would ask with pity filled eyes, “How are you?” Pity is hard to accept. Loves, concern, compassion, even discomfort from others are feelings I understand. Pity makes me angry. For me someone showing pity presupposes knowledge and understanding about how I’m feeling and what the grief I’m enduring. It always feels laced with relief that the loss didn’t happen to them. I had my guard up, staying vigilant and hoping that no one would say anything inappropriate about my loss (“He’s in a better place”) or feel the need to update me on their children’s lives even though I hadn’t asked. Hearing people talk about how much their children loved being away at college and that they were planning to see them for parents’ weekend hurt so much in the first year after Jordan died. I was so traumatized by grief that I rarely did more than stand and nod when people would update me on the college experiences of their children even though I wanted to turn and run.

After Mark and I went to several of Merrick’s classes we started to relax a bit. As we stopped to look at the schedule to see where Merrick’s next class was, an acquaintance with whom we shared several mutual friends stopped us in the hall to say hello.. We’ve known each other since Merrick and her son went to preschool together. She wanted the update on Merrick’s transfer to the high school and asked how our daughters were doing. We talked of how big the girls were getting and yes how time flies given that both of our sons are in high school. We stood smiling and then she said, “You have a son in college too, right?” In the seconds after the questions Mark and I looked at each other wondering which of us would answer. How could she not know about Jordan? I stayed mute knowing that the only other gear I had was rage. Mark calmly said to her, “Jordan was killed in a car accident last October.” Her hand flew to her mouth and she said, “Oh my God, I knew that. I’m so sorry.”

Mark told her not to worry. I stayed silent and focused my attention on her right ear. I didn’t want my eyes to meet hers anymore. She kept talking, nervously saying how dangerous the roads were and how she always tells her son to be careful. I thought but didn’t say, “Yeah that was our mistake. We didn’t tell Jordan to be careful. PLEASE STOP TALKING!” The last thing I heard her say was that she almost got into a car accident earlier that day. She said, “Almost”, I didn’t want to hear the word almost and accident strung together, not when my son is dead. Panic was rising in me and it finally dawned on me that I didn’t have to keep standing there listening to her. I had to get away, so I started moving towards the water fountain. An old neighbor of mine popped into my path, hugging me and asking who Merrick had for his guidance counselor. I looked up to see that my acquaintance had vanished. She no doubt couldn’t find a way out of the conversation either and was relieved to have a quick exit. After briefly speaking with my neighbor, Mark and I looked at each other and exhaled deeply. The bell for the next class was ringing and we both wanted to meet the rest of Merrick’s teachers. As we started to walk towards the next class I gripped Mark’s arm in panic, remembering the one place I didn’t want to happen upon, the newspaper room. Jordan was on the newspaper staff starting his sophomore year. He loved the work and the camaraderie and would often be at school until very late into the night when they were doing layout. Thinking about Jordan’s connection to that room and knowing how fragile I was I whispered in Mark’s ear, “I don’t want to go by the newspaper room. I can’t handle that tonight. That’s too much.” I was shaking my head and trying not to cry. Mark asked one of the student guides in the hall where the newspaper room was. She pointed in the direction and told him how to get there, assuming that was our next destination. Mark thanked her and we set off in the opposite direction. He held my hand and said, “We know where it is. I don’t want to go there either. Now we won’t accidentally go by it.”

Going to the rest of Merrick’s classes I was reeling from the trauma of being asked, “You have a son in college right?” and trying to stave off all the reminders of before Jordan died, that being at the school was bringing up. I wondered as I sat at the desks, “How do my kids do make it through school everyday?” I was fidgety and could barely sit still let alone focus on what the teacher was saying. I am amazed at their strength and resilience. At the end of the evening, Mark and I left the school through the door closest to our home. We took a few steps and then I began to weep. Mark put his arm around me as I said repeatedly, “You have a son in college, right?” and then bitterly answered the question, “No we don’t. We used to, but he’s gone. Our son is dead.” I cried and spewed out a variety of responses to the question we’d been asked until we were in front of our house. Mark and I stood there for a moment catching our breath and preparing to enter our home. As we walked in, Merrick met us in the entry. With eager eyes he asked, “So how was it? What did you think of my teachers?” Without pausing Mark and I both said great and gave him the details of our evening he needed to hear.

I’m keenly aware of my desire to be emotionally present and available for my children. The vigilance I carry for my kids and me to ward off unintentional but still hurtful comments is on high alert. I haven’t decided what I’ll do about Merrick’s open house if Mark can’t come. I’ve thought about contacting Merrick’s teachers to see if there’s an alternate time they’re available to meet. Maybe I’ll still go. It’s not as though I haven’t walked the halls of the high school by myself since Merrick started there; I have, numerous times. It’s still hard. Each time I visit, I whisper the same thing to ready myself, “It’s Merrick’s school too.”

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.

Family Visit

I have always known how fortunate I am to have a family that loves and cares for me. Every time I’ve been sick or had major surgery my mother, mother-in-law and sister have come to care for me. Their presence has allowed me to heal knowing that my family and household are being taken care of in a way that is nurturing and respectful. They are all hands-on caregivers, helping me dress, doing laundry, preparing meals, shuttling kids around, all the things they know I would do if able.

My sister Julie has also come when I’ve needed her simply by my asking. There was a time when we were both in college and I had just broken up with my boyfriend of two years. A dance that I thought I was going to attend with him was coming up and he was bringing his new girlfriend. My pride made me determined to attend the dance, but I needed back up. All of my friends were attending with dates and I didn’t want to be an add-on to their evenings. Julie took the bus from Boston to Providence and came to the dance with me. She understood without explanation why I needed her there. Going to the dance was about proving to myself that I wasn’t going to allow anyone to make me feel that I didn’t deserve to be present. Just having her there allowed me to move past my self-consciousness of feeling alone. It also allowed me to sneak glances at the girlfriend while proving to myself that the world didn’t end because of the break-up. A problem that at the time seemed so monumental. Thank God for youthful ignorance and invincibility.

Julie at age 2 and me at age 4

My past shows me that asking for help is something I do after much consideration. My “self” never allows me to slip too far before I reach out and ask for support. Right after Jordan died, as October and November came and went, Christmas was approaching and I had no idea how I was going to make it through the holiday season. Mark and I both said that if it were just the two of us we’d probably go someplace far from home and come back when the holidays were over. Our children however, looked to us to provide continuity and reassurance that our world would keep going. I knew I had to provide those things, but I didn’t know how I could with grief weighing so heavy within me.

The albatross that most exemplified my unyielding sorrow was my dining room table. It was cluttered with plastic ware and covered containers from the weeks after Jordan died. The dishes needed to be returned to those who had dropped off food at our house. The table also held the guest book from the Memorial Service as well as cards and letters of condolences mixed in with mail Mark and I hadn’t been able to sort through. There were two large poster boards leaning against the wall in the dining room that we’d displayed at the Memorial service. They held pictures of Jordan and messages family and friends wrote on them after the Memorial service. When I would pass through the dining room I would usually avert my eyes not able to take in what the table represented. Occasionally I would sit in one of the chairs and pick up a pile of cards and letters attempting to sort through them. I would sit and stare for a few moments as I felt myself becoming agitated. I would sigh heavily and shake my head as I left the room. I couldn’t do it. I was overwhelmed by all the reminders of loss that occupied the table yet I couldn’t move past the vestiges of the Memorial Service. Clearing off the table meant moving on and accepting that we would have our first Christmas without Jordan. How could Christmas come to our house without Jordan? I was so conflicted. I wanted to be able to walk through my house without averting my head at what to me represented my failure to move on. My cluttered, filled with reminders that my son was gone, dining room table needed to be readied for the holidays and I couldn’t do it. When I asked my sister if she could come for a few days to help me she said simply, “Yes.” She understood without explanation my need for order. She didn’t try to tell me it didn’t matter what the table looked like. She knew me and knew what I needed to ease my mind. I knew she would help me handle the task in the way that would be gentle and spare me as much pain and anguish as possible.

Julie came for three days before Christmas and in that time made a spreadsheet of all the addresses Mark and I needed to send thank-you notes. She found boxes for all the cards and letters that I wanted to keep and put them in a closet where I could easily get to them, but they were out of sight. The day that she left, like someone from a design show she brought up candles and other decorations from my basement and transformed my dining room into a place of beauty. A place I could walk through without trying not to see all the reminders of death that had been in the room. I hugged her tightly when she left saying, “Thank you” but meaning so much more. She took care of me without judgment.

I am again in a place where I feel so close to breaking. My sister asked me the other day how I was doing. I told her I was hanging on by the thinnest thread. With my simmering worry about Merrick being away for 6 weeks, Mark travelling frequently for work and my daughters needing me to help them navigate their grief I feel broken. . Weariness has set in; being caretaker and receptacle for my children’s grief as well as my own has taken all of my energy.

My mother and sister heard the weariness in my voice and their love for me is bringing them for a visit. They’re coming today. They’re coming to as my mother said, “Lay eyes on me and take care of me for a few days.” They made the decision to miss our 52nd annual family reunion, even thought they’ve paid for all the events. I had my moments of guilt. I didn’t want them to miss seeing all of our relatives and my mother presiding over our family meeting. I told Mama I’d be okay even though the conversations she’d had with me in the last few days indicated otherwise. Mama simply said to me, “I’m doing what my instincts tell me to do.” She then asked me was there anything she could bring me? Through tears all I said was, “I just want you to cook for me and take care of me.”  Relief surged through me as I felt the weight of caretaker being eased by my mother and sister.

My mother and sister are coming today to embrace and love my family. My mother will cook all our favorite foods. As I rest in my room with vigilance abating I know I will hear the sounds of my daughters playing endless games of Uno with their aunt and “Oma”. They will laugh louder and longer than they have in a long time. Mama and Julie will sit with me on my front porch and listen without judgment or advice as I unburden myself, letting them in on how grief is working within me as Jordan’s 21st birthday approaches. They are coming to take care of me and I’ve never been more grateful. Just knowing that I can let my guard down for a little while and rest because they are here is my blessing.

Mama and I when I lived in L.A.

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.

Soundtrack

I just left Lindsay and Kendall at school where I watched a fifteen minute presentation of what they’ve learned in their Monday after-school dance class. After the presentation they are off to another school project that won’t end until five. I have an hour to fill. I always call the time between my driving shifts as limbo time. It’s not enough time to go home and get anything done, and too long to sit and wait for them. I decide to head to Walgreen’s to pick up poster board for Lindsay and the spiral notebooks Merrick requested. I then head to Starbucks, book in hand to kill the rest of my time.

I already know dinner will be takeout. I made peace with myself earlier today about that fact. After traveling last week, it always takes me a few days before the fatigue induced by traveling and the effects of  lupus subsides.

So, here I am sitting at Starbucks drinking a tall skim latte, waiting for Lindsay and Kendall to be done. I try to read, but my mind is too restless. Every attempt to blend in with the patrons who are reading, pounding away on laptops or talking with friends is futile. My mind is racing, taking me to thoughts of loss and what now. Being still too long without distractions pulls me into grief and longing for any day before October 12th, 2008. I pull a piece of folded scrap paper from my purse and start to write. I’m realizing how hard it is on this day to sit still without crying or  screaming.I remember reading the book, “Damage” by Josephine Hart over 20 years ago. In the story the main character upon learning of the death of her son, beats and punches her face and body to still the pain in her heart. Of course she learns self-mutilation does not quell grief.

I think of “Damage” and I want to scream out, “Do you people know how hard it is to sit here, drink coffee and read? My son is gone. He died, he’s gone. I need you all to know his name.”  I want to pummel his name into all of their memories. I don’t take any of these actions. I sit, sip my latte and continue to alternately read and write on my scrap paper. I wait for it to be 4:50 so I can pick up the girls.

I realize as I’m writing and my heart is swamped with sadness, my feet are  tapping along to the beat of the jazz-real jazz(as my father would say) music playing in the background. Here I am writing about my grief, how hard it is to suppress tears and screams, and my feet are on another journey, keeping beat to another tune. I look up from my writing and really listen to the song. I smile and hum along. It is a song from the album, “Black Talk,” by Charles Earland.  I’m swept back to childhood and hearing the cut, “I Love You More Today Than Yesterday” wafting from Daddy’s basement stereo system. I close my eyes and remember him whistling and singing along, “I love you more today than yesterday, but only half as much as tomorrow.”

It’s 4:50 time to go. I let my feet lead me out the door, a new song in my head. “I love you more today than yesterday.” Thanks Daddy.