Follow-Up

First off, I am overwhelmed by your on-going encouragement and support! The messages I've received over the last few days - sharing your own stories; sending me words of love, hope, and virtual hugs, mean so much. My heart is full of happiness and my eyes are brimming with tears of gratitude. I am one lucky gal.

That is the lesson I am taking away from my follow-up visit with my retinal specialist at Kellogg yesterday. I really am quite lucky. As Dr. J. reminded me, my vision has come a LONG way from those first dark days. (Pun absolutely intended) My eyes healed in ways that far surpassed his initial assessment and expectations. We knew that I would reach a point where we would no longer see any improvement and that plateau of progress was reached over two years ago. There have been no discernible changes in my vision. The physical trauma my eyes endured has healed completely. The scars and thin spots on my retinas are the only evidence that remains of the disturbance and there is no real way to identify the cause behind those anomalies. Everything else has healed as much as it is going to. 

I wrote about reaching this plateau nearly two years ago, after my last appointment with Dr. J - you can read the post here. It's really tremendous how many of these feelings I have (still/again?) after my appointment yesterday. I'm lucky to be alive. I'm lucky to have progressed this far and have the vision I do have. I am grateful for these things but there is, and maybe always will be, a part of me that will struggle to accept that this is as far as my vision will improve. Seeing the world through damaged eyes will remain my new normal. 

Ultimately I'm okay with that, mostly because I have to be. There isn't much I can do but accept, continue to adapt, and carry on. 

So I'm going to carry on by playing with my ever energetic daughter and catching up with a good friend this evening. At some point we'll raise a glass and toast progress made, accepting reality, and new normals. Cheers.

Hello Again Ann Arbor

Tomorrow I return to the Kellogg Eye Center in Ann Arbor for a progress check on my eyes. I am always cautiously optimistic about these appointments, mostly since Purtscher's is not a degenerative eye disorder; I know it is highly unlikely my vision has gotten worse. However, the majority of my progress and recovery was done in the first year after losing my vision and the knowledge that there is no cure, no treatment for Purtscher's Retinopathy any and improvements after 2 years of vision loss is improbable leaves me with little hope. 

Ultimately I am okay with that. My vision improved so drastically in the first 9 months after the "trauma" that is my daughter's birth, I am thankful every day for my ability to see color, discern shapes and movement, and even identify detail if the situation is just right It's far from where I was, but for the most part I get by.

But the act of being near a hospital which I resided in for weeks sends shivers of grief and memory throughout my body. I am transported to a time where I was so full of hope that my vision loss was indeed a temporary side-effect of my overall poor health and was just another "bump" in my road to recovery. 

It is not a bump. Low vision, legal blindness, visual impairment, whatever you want to call it, is my life. My retinas, much like my abdomen, hold permanent scars of childbirth. 

I am fairly certain that my doctor will confirm what is already known about my vision. I'm not blind - in the sense that I can't see at all, but nor do I have the visual capabilities of a "normally" sighted person. I am somewhere in between. That fuzzy, grey, undefined, space in between. Where I will remain. 

Sledding

Standing on top of the hill, I attempted to secure Emy's hood for the 5th time since leaving the car.  I could barely hold onto our sled, much less hear my daughter's voice over the whipping wind.   

 "What's that Em?" I asked her lifting up the edge of my hat as I leaned in closer. 

"I said, I'm a little bit scared, ARE YOU scared?" 

Trying to gain a sense of our surroundings, I paused before answering and a favorite line from an Ani DiFranco song, popped into my head, "The sky is grey. The sand is grey. And the ocean is grey. I feel right at home in this stunning monochrome, alone in my way."   No ocean or sand in sight, this song, aptly named Grey, described our current environment perfectly. 

The parking lot, the field leading up to the base, the hill itself, were all covered in February snow - whitish, grayish, dull in color but sharp in its icy texture. Deeply packed, oh how I miss the grass, February snow. Above the sky was layered with clouds that were slowly darkening as yet another snowstorm rolled into SE Michigan. Enough sunlight filtered through to cast a hazy glare, strong enough that I longed for my tinted sunglasses that were left lying on my kitchen counter. 

Taking this all in through my damaged eyes that struggle with depth perception and definition in high-contrast environments I regretted the decision to take my three-year old sledding immensely. It looked and felt as if we were about to sled off the edge of the world into a giant sea of grey nothing. Scared? I was downright terrified. 

I looked as directly into her deep brown eyes as I could, took a deep breath, and lied. "Not really, I know it seems scary but sledding is fun. I will keep you safe." 

This is where I am at in motherhood. Lying to help my daughter be brave, to overcome fear so that she can try something new and exhilarating.  There was no way I was going to be able to see where we were going, no way to avoid any potential bumps or ridges as we careened down the hill. I would completely be surrendering control to the moment, and that is something I have to be okay with.  Fear is something I live with every day since I lost my vision. But I refuse to succumb to it in any way that will add to fear or apprehension in my daughter. Courage isn't about not being scared. It's about setting aside the fear long enough to move forward. At least that’s what I tell myself over and over again.

Heart racing I sat down on the pink plastic sled, Emy secured tightly between my legs. 

"Are you ready?" I asked.

 Nodding, she replied, “Hold on tight Mama." 

"Let's do this." 

Pushing off the ground ever so slightly, before lifting my hands and feet into the sled, we began our descent into the great big grey nothing. And it was exhilarating. 

Listen to Grey by Ani DiFranco. 

Getting It Out There

I've been trying to tell our story for 3 years. It comes out in bits and pieces and occasionally these bits form sentences, perhaps even paragraphs on paper. Rarely, these paragraphs turn into blogposts; snapshots of the full story. It's a painful process, dredging up memories and feelings that are far from pleasant. But what I've realized over the last couple of weeks is that it is far more painful keeping them in. 

A few weeks ago I learned of an opportunity to audition for a live-event that shares stories about mothers and/or motherhood. I decided this would be a good opportunity to share my journey with an audience unfamiliar with me or my tale. Attempting to succinctly describe the interconnected events was a challenge. It's a big story and it is hard for me to balance the emotional upheaval and the medical trauma. But try I did . I wrote and shared a piece I am proud of. It is far from exact or perfect. Unfortunately I wasn't chosen to be a part of this particular event, but I still feel as if I achieved something and wanted to share it with you.

Here it is: 

Revising a Vision

By Christy Landefeld

I had visions of motherhood long before I became a mother. Plans and expectations of pregnancy, child-birth, and what kind of mother I’d be. I envisioned being a perfect combination of character traits in mothers I admired. I had visions of multiple children, relatively close in age, so they could experience the joys and agonies of having siblings. I envisioned sleepless nights and lots of diapers. I’d keep teaching, finding a way to balance my career, my family, and myself. Lofty goals? Perhaps. But these were all aspects of how I envisioned motherhood.

That’s the thing about visions. They’re not reality. They’re hopes, ideas, and plans for the best case scenario. And as my husband and I quickly discovered, when we decided to forgo the birth control and start our family, they constantly need to be revised.

In reality I’ve been a mother for less time than I spent activity trying to become one. It took 5 years and cost thousands and thousands of dollars in tests and infertility treatments for us to finally conceive. Once pregnant, scared and weary as we were, my husband and I relished in our dream come true and once again began envisioning the future and looking forward to the birth of our child.

Once again however,  our reality became something we never could have seen coming. In reality my 8th month I began having symptoms of preeclampsia. My blood pressure fluctuated between too high and way too high and was placed on partial bed rest. The idea was the bed rest would allow the baby to reach 38 weeks at which point labor would be induced. Envisioning the moment when we’d finally know the gender of our child and get to hold our little scientific miracle in our arms I was ready to sacrifice my own desires for a natural childbirth for the best interest of the health of our child and myself. Nothing else really mattered.

In reality, I have no memory of my daughter’s arrival. She was born at 37 ½ weeks 4 days before my scheduled induction. I had developed pancreatitis and suffered a placental abrupt ion forcing an emergency cesarean to take place. Due to the severity of my condition my husband was not allowed in the operating room, and I wasn't present when he learned we had a baby girl but she was considered to be in critical condition after being non-responsive for almost 20 minutes. Rather than snuggling as a family in a mother-baby unit, the complications from the delivery led to me waking up in ICU, alone, critically ill and unable to see.  Yes, I literally lost my vision during childbirth.  Selecting a name from our carefully narrowed down list, based on who she looked like or the little personality we’d glean from our first few moments together was no longer an option. I needed to focus on surviving the weekend.  Over the next 36 hours, while doctors and nurses were trying to figure out exactly what had happened and treat my very sick self, I put every ounce of energy I had left into fighting to be the mother I had envisioned – trying to pump in hopes that I’d eventually be able to nurse, asking incessant questions about her continued improvement, encouraging my husband to name her, worrying about being separated from this being I had been waiting for, for so long. 

On Saturday, May 29th, 2010 almost 2 full days since her birth, the nurses in ICU & NICU, agree to let my daughter come visit me, I am still not sure if this breach in protocol was so I could say good-bye or to encourage me to fight.  I was finally able to hold her.  Sicker than I’d ever been and unable to properly discern her tiny newborn features, I knew that she was worth everything that we had gone through. Realizing that I would need to adjust my vision of motherhood yet again, I knew that I would have to continue to fight.  And fight I did.