Allusive sleep is a merciless tease each night. A tsunami of fatigue overwhelms from crown to toe. My eyes, bidding goodnight, shutter briefly in oscillating degrees of tightness. With all intent, desire, and desperation, I implore sleep to overtake my restless mind. Yet, no comfort from my pillow or blankets can lull me into this unattainable blissful slumber. When sleep finally has me in its tantalizing grip, it is brief. Every night, I hear the silent 1:00 AM alarm. I lie in a torturous darkness, unsure of whether I should wake Jason. This night is no exception. My fear of being alone abates; security’s shape shifting definition now rests in knowing that Jason is here, even if he is unconscious to my nocturnal world. Tossing my body about the mattress, sheets coiling around my legs and torso, I inevitably surrender to the persistent insomnia. Leaving Jason to have a few more hours in a (hopefully) peaceful dream world, the living room becomes my escape from the combatant sleep. Settling into the ever-welcoming pliability of the couch cushions, annoyingly comforting infomercials dimly light up the darkened space. Everyone smiling, everyone laughing, everyone shouting, everyone with pristinely sculpted bodies, the P90X world is a perfect utopia. I make myself comfortable for a few hours of mock shopping and envy.
Obsessively, I implore Google to tell me about Pena Shokeir, the only inkling given by doctors of what Sophia could have had. Search after search, I beg the Internet to tell me what the doctors could not. When the autopsy results arrived in the mail earlier today, we were left with no more questions answered than before. Listing all of her physical abnormalities, the document manages a mere revival of the crucial day at our level-two ultrasound–the day we learned of all that was amiss. The crudely drawn body outline points out each deformity, each abnormality, each sign of death. Despite such details, her condition remains “inconclusive”. We yearn for answers and get none. With the glow the fitness trainers flickering on the television, my face burns in the incandescence of my computer screen.
This is not helping. I need to let this go.
Rationality is tempting, but not convincing. An insatiable hunger growls from the pit of my soul, demanding to know more about this disorder. Disappointment fills this crater as I dabble with insanity: conducting the same few searches, reading the same few articles, looking at the same few pictures of babies similar to ours over and over again. Message boards yield similarly unsatisfying results. Amongst hundreds of other grieving families, no one is just like us.
Despite my best attempt to continue my nightly ritual in solitude, Jason wakes up. Padding softly from the bedroom, squinting harshly against the blaring brightness of the TV, he joins me on the couch. Grabbing a corner of the blanket, he wraps his legs safely under the soft pink fleece.
Recognizing the detriment in my neurosis-induced computer coma, Jason interjects, “You should put the computer away, Babe. It won’t help you sleep.” Yawning, he reaches to my laptop, gently pushing it closed. Darkness obscures my sullen face, conceals my baggy eyes.
If I were sensible, I would not become this search-engine, Internet-crazed, sleep deprived, grieving mother. I would just be a grieving mother. Yet, this aberrant repetitiveness is comforting and enduring despite Jason’s urgings. Often, I await his departure to sneak a quick read of a message board, or to take in the folded limbs of a premature baby.
“Let’s work on our puzzle,” suggests Jason, his tone sleepy and gentle.
The small square box sitting on the coffee table before us depicts an unattainable paradise: a cozy cottage, soft light beaming from the shuttered windows, brilliantly colored flora lining the cobblestone walk, a bridge leading to the nearby meadow. The calming picture radiates a palpable warmth. Dumping all the pieces, we carefully flip each cardboard fragment, revealing a plethora of hues, patterns, and purposes. Starting with the edges, we trade pieces, searching frantically for the perfect fit. With each light snap of a match, smiles ignite our faces, replenishing our eyes with contentment. We work in near silence, just the soft shuffling of puzzle pieces audible. Even though we chose this puzzle during a recent trip to the store, this endeavor adopted us, pleading to provide a much needed distraction.
“Maybe we should try that support group. I think it meets tomorrow.” Guardedly watching Jason’s reaction, a single tear exposes my apprehension of upsetting this jigsaw-induced peacefulness.
The discharge nurse had told us about the hospital-based group for which we are ideal candidates. I adamantly did not want to go. I was not like those people. We were not like those couples. We did not belong to that group. Six sleepless nights, 12 night time infomercial hours, and a domination of Pena Shokeir in my every thought begets an uncomfortable acceptance. Jason picks up a speckled green puzzle piece, gently nudging it in place. Pushing its way to the forefront of my absurd resistance, I realize we are part of that group.
“That sounds like a good idea.” Lightly touching my hand, he smiles through his own tear, as it threatens to fall down onto a leaf-clad puzzle piece. In an instant it drops, magnifying the colors. Drying the small jagged cardboard with his sleeve, he finds its place in the outline we created, and snaps it in.
2 thoughts on “Distracting Insanity”
First if all, i want to say I am sorry for your losses. Losing a baby is the most difficult thing to deal with.
I found your blog by googling Pena Shokeir. I actually have been googling Pena Shokeir for the past 12 years now. I lost 4 babies to this rare condition. We had hope this year in finding the genetic mutation responsible, but sadly, exome sequencing came back with nothing. We have done every genetic test out there, as well as blood work that could pinpoint something, but all results came back normal.
I have connected with different scientists and doctors over the past 12 years from all over the world. I also have connected with other mothers that have lost a baby to Pena Shokeir.
There is little research out there on this condition. For months, research on this syndrome consumed my life. I am slowly trying to move on though, as difficult as that has been.
Feel free to email me if you need any info or just want to talk.
Thank you for reaching out to me! I am glad you found my blog, as I find the connections I make through my writing to be so valuable in healing and being able to go on with life. I would like to express my sincere empathy for you and your family–I’m sure your losses are devastating.
Sophia was our first baby, and we lost her about 3 1/2 years ago. Since then, we have had two additional miscarriages. After our second loss, doctors said it was probably just a fluke and likely not genetic. Then we lost the third, and now we are unsure of what is going on. We never got confirmation of anything, as any and all tests we have had done always come back “normal” as well. Sadly, our situations sound very similar. I am always very sorry to hear of others who can identify with my experience, as losing a child (or children) is an awful pain and burden to bear.
Thank you again for reading and commenting on my blog. I invite you to read more of my blog, as I am working to finish my memoir-style manuscript soon. The more people I can reach out to, the happier I feel, so if there is anyone else who you feel would benefit from, and enjoy, reading my blog, feel free to pass it along. I write not only for myself, but to help connect others. It surprisingly brings a huge amount of joy from such a horrendous situation we have been put in.
I extend the same offer to you that you made me–if you ever want another person who understands what this all is like to talk or just to listen, I welcome more comments/questions/rants. 🙂