Thanks a lot, brownie batter.
June 2014 cannot be over soon enough.
After the last three weeks, I feel like I’ve been hit by a bus. Fair warning: this is about to get real whiny.
First, I got salmonella and experienced all the lovely things that go with that. Next, a peculiar eye infection emerged, followed by debilitating back pain, throbbing pain and swelling in my foot, and an itchy rash on my arms. I sought help from different specialists. This weird combination of symptoms seemed to be a complete mystery to each of them. I missed work, yet again. No one could connect the dots. After a desperate trip to the emergency ward one night, I was diagnosed with Reiter’s Syndrome, a rare form of reactive arthritis that can be triggered in the body after you have an infection… like a food borne illness.
Thanks a lot, brownie batter.
In other words, an autoimmune bomb has been ignited in the lining of my joints and it hurts like hell. Everywhere. (My feet pictured below actually got much more swollen. I'll spare you those images.)
Reactive arthritis is unpredictable. It flares up quickly and can nearly paralyze you. Then it subsides with little fanfare, toying with your sanity. It migrates. It mangles. It leaves you feeling totally out of control. There have been moments when I simply could not walk. And the most alarming thing is that no one can tell you how long it will affect you.
Despite this new condition, I’m confident no physical pain can compare to the devastation that comes with living each day without my son Miles.
Knowing my beautiful baby boy is dead and never coming back is overwhelming. Not knowing WHY such a perfect pregnancy turned into such a nightmare will consume me, if I let it. Grief leaves you feeling pretty beat up. And much like reactive arthritis, not all the scars can be seen.
Few things can hurt me more intensely than the sight of Miles’ tiny casket covered in hydrangeas (once my favorite flower) on the February day we laid him to rest.
I don’t remember much of what was said before or during the private funeral service. I do remember feeling like it wasn’t real. It was as if it was happening to someone else and I was a numb bystander, unsure of what to say just like everyone else. At times, it felt like I was there to console other people instead of the other way around. As we sat in the chapel, I clutched Miles’ bloodstained blanket and knit hat that smelled like lotion, holding them to my face for comfort. Everything was out of my control. All I could do was breathe and attempt to occupy my older son Owen with crackers. Lots of crackers. The poor kid was stress eating before age two!
I’ll never forget the crushing moment when it became clear we were really saying goodbye to Miles.
Following the service, we made the short drive from the chapel to the Garden of Innocence, the place at the edge of the cemetery where just two days prior my husband and I decided we would bury our son. We sat shivering in a tent with Miles’ open grave before us. The pastor said some final words and our family members slowly began to move out of the tent and into the merciful sunlight. This signaled to me that I, too, would have to leave the tent. This meant leaving my baby there… in the cold, cold ground. Forever. It was unthinkable. Yet there I was, having the most gut-wrenching experience of my life with all eyes on me. I lost it. I wailed, and, feeling out of my body, lunged towards the little white box containing my heart. I think it was a desperate attempt to hug Miles one last time. There’s really no other way to describe the scene… It was f*cking awful.
In the days since the funeral, there have been lots of moments, big and small, where the pain of missing Miles stabs me. Every day, grief creeps in and reminds me that he is gone. Even happy times are tinged with loss and broken dreams.
The sadness I experience each day may be less dramatic than that scene at the grave site, but they are no less painful.
Just when I think I’ve built up some strength, grief strikes out of nowhere and rips away the scab that has kept me “OK.”
These invisible injuries occur constantly.
The scab opens when I see giggling kids in commercials for Children’s Hospital.
The scab opens when I stand in line at Walgreen's and find myself confronted by the blissful face of Drew Barrymore as she holds her newborn daughter on the cover of People.
The scab opens when I find myself glaring at a sweet pregnant woman at Target, wanting to shake her and tell her how lucky she is to still have a sense of innocence about babies.
The scab opens when a petulant actress on Orange is the New Black jokingly asks if her baby looks dead on the baby monitor.
The scab opens on holidays or at weddings, when no one mentions my son Miles and I’m reminded that my family will never be whole.
The scab opens when I see someone coo over a healthy baby. Or asks me to please step out of the way so they can coo at the baby.
The scab opens when I get coupons in the mail for formula or baby announcements.
The scab opens when a co-worker fails to acknowledge that I even had a baby, let alone that he died.
The scab opens when the cemetery staff takes down the decorations I had carefully selected and placed at my son’s grave after they promised otherwise.
The scab opens when I get invited to a baby shower.
The scab opens when I learn I was not invited to a baby shower.
The scab opens each day my Father decides not to call or stop by.
Most of these wounds leave me weeping in the bathroom stall or behind the steering wheel when I get a moment alone. Occasionally, they will hit me without warning when I’m in public, leaving me surprised and embarrassed. Other wounds are so small they get internalized bit by bit, only to resurface weeks later during a heated argument or a moment of stress…. Like being sick. Trying to cope with Reiter’s Syndrome certainly has not brought out the best in me.
Will I always deal with this pain? Probably. Will it become less intense? So I’m told.
Am I talking about grief or reactive arthritis?
It is true that everyone is going through something. Even that pregnant woman I silently yelled at in the store has problems. It is totally possible that she may be coping with a freighting diagnosis of her unborn child. I’ll never know.
In the end, we all have to keep moving forward. I just wish it didn’t hurt so damn much to put one foot in front of the other.
P.S. June did have some pretty bright spots involving some special dudes in my life:
-My little brother married the love of his life.
-We celebrated Owen's 2nd birthday.
-And we honored my husband and father-in-law for being the world's best dads.
