Sunday, May 29, 2011

A Birthday Letter

May 27, 2011
My Sweet Emy Joy,

I am in complete shock at how quickly time has gone.  Not too long ago, you were a distant dream that your father and I thought would always be just out of our reach. Now you have completely hijacked our house and our lives and we couldn't be happier. Don't ever doubt for a minute you weren't wanted. You were loved and cherished from the second we learned our dream had become a reality. Plus, you are way cooler than either of us could have imagined.

I am grateful that you won’t remember this year. There are definitely parts I wish I could forget, but you are not involved in a single one of those moments.  We've spent an awful lot of time apart. Even when we were able to be together in those first few months, I was so sick that it was impossible for me to care for you.
Luckily, I think this has affected me WAY more than you. You spent your time with people who adore you, and took such good care of you, especially, your daddy. Have you realized yet how incredible a man your dad is? I never worry about you when you're with him. If there is anyone on this planet who loves you more than I do, it is him. He would do anything to make either one of us happy. Plus, he makes the best popcorn. Just two of the many reasons why he rocks.

For the longest time, I worried about whether or not you and I would bond.  I was certain we'd never feel comfortable around one another. I never could hold you just right in those first few months. You sensed my fear and frustration and would holler, until I’d hand you over to a more competent set of arms. Silly to think about that now, huh? As I got stronger and more confident our bond strengthened too. We're thick as thieves these days. Our days are full of snuggles, games, giggles, hugs, kisses; moments I treasure and wouldn’t trade for ANYTHING.

You are so busy. Exploring, observing, testing - you are a little scientist. Everything you see, touch, or hear is part of your experiment. My absolute favorite moment of every day is that "AHA!" moment when all the pieces fit together. You look at me, with the widest grin, just beaming with pride because you know you've figured something out. I couldn't be prouder.

You love books, music, and animals - real or otherwise. You are a magic combination of wild and gentle. You are an amazing sleeper (THANK YOU!!) and such a charmer. You greet everybody with a big old smile, a wave, and a chipper, “Hi!” I hope you always stay this social. There are amazing people in the world that you might never otherwise get a chance to meet.
You have the best fake cough I have ever heard. From a simple throat clearing to a dry hack, you can mimic them all. I could listen to your fake coughs, maniacal laughter, and every other sweet sound you utter all day.
You hate having your nose wiped, or being waylaid in anyway, so not surprisingly you hate to be told no. Your fierce independence, stubbornness, and opinionated spirit will take you far. I marvel at your personality and silently curse all the power struggles the future holds for us.

There are moments of every day, where I want to freeze time because it couldn't possibly get any better. There is no way you could get any cuter, or sweeter, or funnier. But you do. Every day. And every day gets even better than the one before and I love you more than I ever dreamed possible.

I know you won't always find me funny and entertaining, but I hope that you'll always find solace in my arms. When you snuggle close, head on my shoulder, thumb in your mouth, I am afraid my heart will burst with happiness. You keep me in the moment and I am so thankful to you for teaching me how to slow down, enjoy, and focus on what’s important. Honestly, when you pat my shoulder or bite my nose what else could possible matter? You're it, Baby. You're it.
Happy Birthday Emeline Joy.


Friday, May 27, 2011

Small Improvements

When the doctors first realized my vision had been severely altered I was reassured multiple times that my vision would return fully, in 3-6 weeks, or when the fluids behind my eyes receded. None of these proclamations came from ophthalmologists these were uttered by the surgeon, internist, and various residents who were responsible for my care. Of my body. Not my eyes. Although I should have known better, I believed them.

And my vision did improve. But as the fluid had receded and my eye pressures returned to normal, and six, then eight, weeks passed, and my vision didn't go back to "normal," I knew I was in trouble.

During my fourth and final hospital stay I requested a consult with a retinal specialist. I was at U of M after all. The Kellogg Eye Center is renowned and I would be a fool to pass up the opportunity to get another opinion while in such close proximity. I was referred to one of the few doctors in Michigan who not only heard of Purtscher's Retinopathy, but had researched, AND published papers on its correlation with childbirth. Unfortunately, experts such as Dr. J. don't usually have large gaps in their schedules waiting for potential patients to schedule an appointment. There was good news however, after meeting with one of Dr. J's interns and a fellow, strings had been pulled and I had an appointment. In six weeks.

At the time, this was an eternity. It had already been 8 weeks since I lost my vision, if something could be done to cure my eyes it had to be done now. How was I supposed to function for the next 6 weeks knowing that help might be out there, but it was "impossible" to arrange an appointment sooner? (How I managed is a whole other story.)
He was worth the wait. As I've mentioned before, Dr. J was the first doctor to speak candidly about my condition. His honesty, supported by empathy was grounding. Ever since our first appointment, I've learned to be grateful for every improvement, not matter how small, that occurs. And improve I have. 

The changes in my vision have developed slowly, but when I look back on this year it is remarkable how far I have come. Over the last 365 days I have gone from seeing shadows, with streaks of light, to light and dark, to large shapes, to colors, (I was so happy to see color again!) to minor detail, to letters, to words, to more distinct detail. My vision is such that if you aren't paying close attention you may not even realize that I am legally blind, unless of course we are in a low-lit restaurant, then it becomes pretty obvious, especially when I am required to read a menu.

I saw Dr. J for the third time since August of 2010 on Thursday, May 26, 2010. 364 days from the day my vision changed. As always, Dr. J and his staff were patient, kind, and got right to the point. Just the way I like my medical professionals. Carefully choosing his words after my exam, Dr. J said that in the nine months since I became his patient, my vision has improved beyond his initial expectations. He also said, without the slightest bit of irony, "That we can expect changes, until we no longer can." Translation: as long as my eyes keep healing and getting stronger, then there is no reason to expect that they won't continue to do so. There isn't a time limit on progress. Being that there is nothing to do to speed up any recovery, time is the only thing that will determine where my vision will end up. A year ago, this would have driven me crazy. "What do you mean, you don't know?!?" I can imagine myself shrieking. Now, I am thankful for the lack of ceiling and the tether to reality. I wake each morning thinking that this is as good as it is going to get and eternally grateful that I can see the wide grin and smirking eyes on Emy's face. I am prepared to see the way I see right now, forever. I like knowing that I can hope and dream, but I am relieved that I no longer expect change. My vision has exceeded my own expectations too, and any improvement from here on out is a bonus. I'll take it. Either way.

Tuesday, May 24, 2011

A Little Vitamin D

It is not the least bit surprising to me that I've had a Vitamin D deficiency over the last year. After all, I spent an entire season indoors. More than a season; for close to 5 months my skin rarely saw the sun. I began to feel strong enough and confident enough to venture outdoors regularly just in time for one of the snowiest Michigan winters I can remember. My new vision impairment and icy conditions caused me to spend yet another season largely indoors.

As if this is news to anyone who was in Southeast Michigan last weekend. The weather was idyllic. It was if I personally contacted Mother Nature and requested my preferred weather conditions: sunny, high 70's, low humidity, gentle breeze. Perfection.

Every opportunity possible I spent it outside. Weeding, planting flowers, spreading mulch, introducing Emy to the pure joy of reading in the grass under the trees, hour long walks with Emy in the stroller around our neighborhood, hour long walks with Emy pushing the stroller up and down the driveway, I relished every moment outdoors.

All the Vitamin D and exercise did me good. As I crawled into bed Sunday night, mildly sunburned and physically sore from all of the gardening, I felt peace. Michigan summers are the greatest and I can't wait to spend this one outdoors. 

Saturday, May 21, 2011

Permission to Blog?

I have completed exactly 1 post since I have been home from Kalamazoo. ONE. In over a month. Pathetic.  I have half a dozen partially finished posts typed up and probably a dozen snippets on topics jotted down. Excuses of why these haven't reached posting status are many, but ultimately there is only one. They are not completed, therefore NOT fit for anyone’s eyes but my own.
Every day I talk about writing. How I want to, need to, have to finish that piece. But I haven’t made it a priority. Many friends, family, acquaintances, friends of friends have mentioned this blog that my head has been spinning (and slowly inflating) from the generous and heartwarming words of encouragement and praise. That, this little hobby of mine has sparked anyone’s interest is remarkable. I just needed an outlet to process the events of the last year in the best way I know how - through writing.
A friend asked me why I chose to write a blog as opposed to a journal. It's a fair question. She has known me a long time and has witnessed firsthand the devastation the last five years has inflicted on my life, as well as the attempts made (time and time again) to emerge from the rubble as unscathed as possible. Through these attempts I haven't always been the most forthcoming about how I felt. I’m kind of known for the statement, “Well, it's hard, but what are you going to do?” It’s always been very difficult for me to allow myself to be viewed as vulnerable, incompetent, and unsuccessful in any way. Unless copious amounts of alcohol have been consumed, then I'll spill my innermost fears to just about anyone who demonstrates the slightest bit of interest - like making eye contact. Vodka always equals too much information when I’m part of the equation.
This false armor I created was dismantled completely last summer. Perhaps it was the humiliation of being incapacitated in a hospital bed, with extreme bacteria attacking my digestive system. Perhaps it was that no matter how I portrayed myself I couldn't hide the fact that I couldn't take care of my daughter. Maybe, I was simply tired of partially hiding the parts of my life that define who I am today. Whatever the reason, I made a conscious decision to not be ashamed.
Not one of the so-called kinks the universe has thrown in the spokes of my life plan is or should have EVER been a cause for shame. Infertility, depression, anxiety, communication issues, pancreatitis, vision-loss, prolonged illness, mommy-guilt, more depression, more anxiety; all of these are completely valid (and uncontrollable) causes for the current identity crisis I find myself partaking in. The one controllable factor is how I handle it all. I'll be the first to admit that some days I don't handle it well. Some days, it takes so much effort to get out of bed that I am left wondering why I bothered. Other days, like today, I totally have this blind, crazy, momma thing down. Yes, I am being facetious but seriously, I feel as if I have it all under control. I am happy, competent, and confident.
This brings me to the point of today's post. As a result of making the decision to be honest and forthcoming about the events and experiences that have made me, me, I am giving myself permission to be honest and forthcoming in my writing. Writing has become a necessity to me. Just like the meds I take every day to keep my body from going haywire again, I need to make time to write so I don't go haywire as often as I could. This involves giving myself the permission to post incomplete pieces or rough paragraphs. Those of you who are familiar with the perfectionist side of me knows this is not an easy task. To realize that this is a blog, not an essay that will be graded is HUGE. Lil Miss Perfectionist is shuddering at the thought that a misplaced comma or a misinterpreted thought might squeak its way into your brain. "OMG! What might you think?” she is shouting. Not to mention, “I just used the acronym OMG, what am I 14?"  I will do my best to quiet her with promises of revisions at a later date. You all can help by being just as supportive as you have been thus far. By reading, following, or commenting on this blog, and my ramblings, you repeatedly tell her, “Shhh. . . it’s okay.” Which is so important because polished or not, I’ve been dancing around my reality long enough and I have a LOT to say.

Tuesday, May 3, 2011

Everything is Different, Yet Nothing has Changed

It is amazing to think that just less than three weeks ago I was residing in Kalamazoo. My experiences at MCBTC seem like they happened to someone else is some other lifetime. Most likely the biggest reason for that is I am no longer the same person I was prior to arriving at the Center. Nor am the same person I was almost (gasp!) a year ago, when all the craziness went down. In fact, there have been so many versions of myself during the last 18 months that I have no idea who I truly am today or will be tomorrow. 
One thing that I do know is there is a drastic difference between the person who entered the MCBTC on February 27, 2010 and the one who sits at this crummy laptop currently. In a lot of ways I am more equipped to handle the daily challenges my low-vision brings but in several other ways I am even more impatient with my situation.  

My first few days at home were spent in a state of delirium. I had left Kalamazoo feeing that vision-impairment be damned, I could do anything. I spent a ridiculous amount of time planning all the activities that I wanted to do now that it was spring, and I was home and healthy, Together Emy and I would attend story hour at the library, join a multitude of classes like, sign language, swim, and maybe even a play-group/Gymboree to meet other moms and babies. I would be sure to carve out time for myself to maintain my sanity - I'd go to the Y regularly, take a yoga class, find a ceramics class, look into going back to school - yada, yada, yada. My mind swirled with the possibilities. Then reality hit. And it hit hard. 

Regardless of the level of independence I feel I am capable of. I am still very limited by my location. There are ZERO options of fordable transportation in the Waterford area. There are no buses, Para-transit, community groups, or even senior centers that will assist me even with running errands locally. There are cab companies but none of them seem willing to negotiate a regular-customer rate and consistently paying their exorbitant rates is just asinine. I do have friends and family who are more than willing to cart me and Emy around which is amazing and generous but the feelings of dependence and guilt are often difficult pills to swallow. 
Te reality is that I left the MCBTC feeling as if something deep within my soul was repaired. I felt healthy and strong in a way that I haven't in a very, very long time. It's awfully frustrating to feel so changed internally and arrive at the realization that situationally nothing has changed. 

 I feel awful complaining about this because there is so much positivity to focus on about the status of my emotional, physical, and visual health. Additionally, I am well aware that any parent who stays at home with their child feels lonely and isolated from time to time - (why do you think Facebook and Mommy Blogs are so popular?) but the inherent difference is that most people have the option of loading their kid up and going to run errands, see friends, have lunch out, or whatever., when they just can't take their house/yard anymore. That spur of the moment action is unavailable to me. 

 I am terrified that this feeling of BEING STUCK will never subside.