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Tuesday, June 19, 2012

Small Changes = Big Consequences

As many of you know, I had my annual appointment with Dr. J. at the Kellogg Eye Institute last week. This was a routine visit, with the exception that I was scheduled for a visual field test that would map the "blind" spots I have in my retinas. By mapping these spots, Dr. J. and his team were able to give an assessment of how much my damaged retinas impact my visual field. In conjunction with the exam that determines my ability to perceive distance they could determine if I meet the legal visual requirements to be a licensed driver in the state of Michigan.
Scary? Yes. Physically painless? Yes.
The test was very cool. I went into a dark room and stuck my head into a giant inverted white cone. In the center of the cone was a small black dot. They put an eye patch over the eye not being tested and I was instructed to push a button on a clicker they handed me once a blinking white light came into view. The blinking light sometimes came in from the edges, sometimes from the center, and sometimes it would just appear randomly. Throughout the entire test I felt like a Jeopardy contestant and was SO consumed with my speed and accuracy of pushing that damn clicker I sometimes forgot that I was supposed to be looking for a white light. Luckily for me, my technician was patient and experienced. When I cursed in frustration that I felt as if I had forgotten to study for ACTs, she laughed, patted my shoulder, and said, "You're doing great. Just like the ACTs, you can always take this test again." The staff at Kellogg rocks.
Once we completed the test on both eyes, she put dilating drops into my eyes and sent me into the next room to wait for Dr. J.  Having my eyes dilated never bothered me pre-vision-loss. Now, I can't STAND it. When your sight is limited, you are acutely aware of every nuance of vision you have. As the drops took effect, I could feel my vision decreasing. One minute I was reading a book on my iPad, the next I couldn't make out the words no matter what size I increased the font to. Every time this happens, I realize how thankful I am that I do not have an eye condition that will progressively deteriorate over time. Having my vision be the worst it (should) ever be two years ago and slowly return to the less than stellar point it is now, is comforting.
After about 20 minutes of not-so patient waiting, Dr. J. called me back. He had a print out of my field of vision test and showed me the mapping of my blind spots. It was very cool and not really surprising to me at all that my left eye had a larger obstruction than my right eye, and in both eyes the damage to my retinas is just below and left of the center of vision. What did surprise me though was that in neither eye, my field of vision was compromised to cause me to "fail" the test. My blind spots aren't really blind spots at all. They simply blur my visual field in those areas, but the overall percentage of my visual field is not greatly affected. When I asked Dr. J. what that meant exactly he summed it up succinctly and calmly - "You meet the legal visual requirements to qualify for a driver's license in the state of Michigan."
Say what?
I can drive????
I was not at all prepared for the news that legally I could begin driving again and pushed Dr. J. to elaborate by asking him if I should drive. Being the professional he is, he wouldn't directly answer my question, choosing instead to list all the factors  that the two tests Michigan require can't determine - my confidence as a driver, the way glare & light affect my vision, my reaction time, etc. . . When I was sufficiently freaked out and mystified as to why anyone is ever allowed to get a driver's license he reminded me that just because I can, doesn't mean I have to or even should.  His advice - Try it out, take it slow. Stick to fair-weather, daytime driving, on surface streets and see how it goes. If you've adapted to a life where driving isn't necessary then why drive?
"Why drive? I live in the suburbs of Metro-Detroit. It's not like I have a whole lot of public transportation options to choose from." My response may have been a little snarky but the sentiment rang true. But his question has left me reeling. Why drive? I have many, many reasons why and maybe many more why not. But I'll save those for another post.
His last point before he left the room was that I've far surpassed his expectations of recovery but we've plateaued. My left eye hasn't shown improvement in over a year and my right eye hasn't changed significantly since last November. There is really no reason for me to continue to see him every year. He recommended my next appointment should be in May of 2014. Two years from now.
I thought I hit my emotional roller coaster threshold with the notion of driving again, but what really sent me into a tailspin was the reality that this was it. How I see right now, today, is as good as it's going to get. I've come a long way from where I was two years ago, but we've hit the ceiling and there is nowhere else to go.
While I did say (just a few paragraphs ago in fact) how lucky I am to not have an eye-disorder that progressively gets worse, I neglected to mention how much hope I had that one day my vision would return to what it was prior to May 27, 2010. Deep down, I always thought that since I had progressed so much that one day my eyes would heal themselves completely. That the constant adapting and adjusting of the last two years were just temporary, a long-drawn out nightmare to test my endurance, and that when I had proven I could rise to the challenge, I'd find I didn't have to anymore. I'd be cured. Ridiculous and illogical I know, but that's what hope often is.
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I wish I had great inspiring words to wrap this post up. Most of it I'd written three weeks ago and I let it sit; hoping that some distance would give me some perspective and a fabulous ending. It didn't. I still haven't driven. I'm terrified of it and I will explore the fear of having my license restored in an upcoming post. Mostly I've been trying to focus on the positive, allowing myself the moments to grieve the loss of my vision, and then reminding myself how much I have to be grateful for.

Thursday, May 31, 2012

Bedtime Hell

I knew I was in trouble the minute I picked her up from daycare. Emy took one look at me and let out a heartbreaking wail, "No Mama, no! Buggy ride! Bugggggggggyyyyyyyy riiiiiidddde!" Needless to say, she was not happy to see me. I had interrupted her plan to go on a walk with her teacher and the few   remaining kids.
Thankfully, this was her teachers' first time witnessing the sheer hysteria and stubbornness that my little darling can exude in the midst of a meltdown. Anyone who has raised a toddler, or even come across one in a shopping mall can picture what toddler temper tantrums look like - flailing, kicking, screaming, huge crocodile tears, refusal to be comforted - they're not pretty. Between babysitting, friend's kids, working in a grocery store, day camp, and teaching I'm no stranger to the meltdown.
However, I was completely unprepared for what it feels like when it is your child who is reacting so violently, you are certain she has been taking acting lessons from a young Linda Blair.
What I am noticing about Emy's tantrums is, while (THANKFULLY) they are not frequent, once one occurs, it is very hard for her to react normally to any other adversity for the remainder of the day. So after her cosmic display of disapproval at daycare yesterday, the remainder of the evening was a roller coaster of difficulty.
We both needed a reboot in the form of an early bedtime. I attempted to have her ready for bed by 7:15. Josh's arrival home in the midst of our preparations sent these good intentions out the window. The time Emy and Josh spend together in the evening is so important for the both of them and fills Emy with so much joy that I felt like a giant grouch trying to cut it short in order to get my (at the moment, not-so) crabby daughter to bed early.
8 o'clock rolls around and bedtime routine completed Emy and I head into her room for books and songs. The moment I kissed her goodnight is the exact moment she transformed from overtire toddler to "Somebody Call an Exorcist" nightmare. Hysterical crying, running to her bedroom door, pounding on the walls, ear-shattering screams, heart wrenching cries and sweetly articulated pleas for "One more book?" " Emy potty" and of course, "Daddy!"
As hard as I tried I couldn't keep it together. Upset, frustrated, and exhausted, I know I only made the situation worse by not remaining calm. As the hours (yes - HOURS!) passed, Josh and I had reached the bottom of  our bag of negotiation tactics - and the end of our patience, I completely lost it.
"THIS ISN'T WORKING! AND DON'T SAY IT'LL BE OKAY, BECAUSE IT WON'T!" hollered  in the general direction of my husband and in full vision of my daughter. After being a reprimand by Josh, I stormed downstairs to the basement for my own time out.
This whole event sent my perfectionist self into a shame-spiral of inadequacy. Emy hasn't "fought" going to bed in several weeks. Sure she'll procrastinate and try and sweet talk her way into staying up later, but she hasn't fought us. And she never fights Josh. Just me. What is it with daughters and fighting their mothers? (I am SO sorry Mom. I take it all back.)
15 or so minutes later Emy and Josh calmly walk downstairs and request my presence. It's bedtime - for all of us. One book, one song, and entwined we all fell asleep in our king-sized bed. Reboot.

How do YOU handle tantrums? Your own or your child's? Which is worse?

Monday, May 28, 2012

Is this What Healing Feels Like?

It's impossible for me to get through Emy's birthday weekend without the memories of two years flooding back and knocking me all sorts of sideways. Last year I was a mess. Filled with regret, insecurities, raw, emotional wounds that had barely scabbed over, only to be ripped wide open with the jagged edges of what-if scenarios. This year, not so much.
By no means has the past week been easy. Between annual doctor appointments sending me into PTSD spirals of lunacy and an almost manic devotion to cleaning, organizing, and planning a party I have driven myself into a frenzied state of anxiety and exhaustion. But this year feels different. It is still shocking to me that 2 years have gone by since that fateful day. How is that possible? The events that have transpired since May 27, 2010 seem infinitely further away and yet the emotional memories attached are still so raw that it can't possible have happened 731 days ago.
Regardless of how much time has actually passed or how it feels, my daughter is very much 2. She is creative, independent, opinionated, and very quick to tell you when things aren't going the way she intended. She is funny, fearless, and feisty. I only cried a couple of times and it was from happiness. She has taught me many lessons over the past year - lessons of patience, humor, willpower, when to stand my ground, and when to give in, but the biggest lesson I've learned from being her mom is the lesson of gratitude. When it boils down to it, I am so lucky be her mama, to learn from her, and watch her discover the wonders of our world. Especially, to see that at such a young age she has already learned that family exists outside of Mama & Daddy. We have so many amazingly strong and supportive people in our life and it was incredible to observe her interacting with these people this weekend. This is a kid who knows who loves her.
We may have spent a day celebrating Emy and my dad's birthday, but for me the celebration was about so much more than that. It was a celebration of love and our family (blood & otherwise).  Large, dysfunctional, and crazy as we may be, we have only gotten stronger and more unified over the last year. It will take a lifetime of backyard barbeques and celebrations to come close to expressing the gratitude I feel in my heart.

Small Improvements part deux (Written May 20, 2012)

Tomorrow I go back to see Dr J. at the Kellogg Eye Institute in Ann Arbor. This appointment has the potential to be monumental. It also has the potential to be disappointingly routine. Honestly, I can't say what I hope for more.
Tomorrow afternoon I will take a Visual Field test. Having never undergone this "test" before, I have no idea what to expect. I do however know, that it is one of a series of eye exams that will determine my effectiveness as a driver. A DRIVER.
Interesting fact, while I am still be all accounts a licensed driver in the state of Michigan. I have not been behind the wheel of a car since the morning of May 27, 2010. Nor will I, unless a doctor gives me permission. Because whether or not the State of MI realizes it, I am legally blind. Therefore, it is illegal for me to operate heavy machinery under any circumstances. At least I am pretty sure I still am. I guess I will find out tomorrow.
The thought of driving again both thrills and terrifies me. The intoxicating idea of freedom is very strong and must be contained at all costs. I can not get my hopes up. I honestly do not think I can handle the disappointment waiting for me if I expect to hear positive results. .
Yes, I said waiting for me. And, no, it's not because I am a pessimist. It's because I have to go into my appointment having ZERO expect ions. Dr. J has already told me the worst news he ever could, how could hearing that of course I am not able to drive, be worse? It's simple. Because, until I hear those words I still have hope. Hope, unrealistic, hope.

Saturday, May 19, 2012

Look for Emy on a Future Episode of Hoarders

After 5 days of  illnessI decided clean sheets were a must have. This is what I found in, under, and around my darling's bed.  

Contents include:
  • 1 white rabbit (borrowed from Grammy & Papa's house)
  • 1 gray elephant pillow pet
  • 1 Giant Doggy
  • 1 musical sheep
  • 1 Twilight Ladybug (Laycob)  
  • 1 "Chaucer Bear" 
  • 1 Panda Bear ("Pana, Pana, what u see?")
  •  1 giant Elmo 
  • 1 baby Elmo 
  •  1 baby doll (the other 3 were taken out this morning to sleep on the windowseat along with 3 blankies) 
  • 1 paper plate rabbit ("I paint bunny!") 
  • 1 pink plastic pot with "my Unch!" - includes a red car, doctor's toy, two cupcakes, a purple fish, and a baby bottle 
  • 1 top to a water bottle
  • 3 crayons
  • 2  photo albums
  • 37 books  including Emy's new favorite bedtime story Baby Names Your Child Can Live With
I wish I could blame my lack of sight for allowing my child to sleep with the entire contents of a toy box and a library, but alas vision has nothing to do with it. I recognize and respect her need for comfort. While my list of items that I surround myself at night has dwindled, I too, wake up in the midst of random items and pillows. Holy crap, she's just like me.

Wednesday, May 16, 2012

Being Blind Sucks When Your Kid Has a Rash

Being legally blind and having low-vision there is a lot I can see. I can see color, movement, a fair distance in the right sunlight. But no matter how hard I squint or focus my attention I simply can't respond to the question I am being asked by my favorite nurse at my daughter's pediatrician's office. "What does the rash look like?"
"Um. . . It's red. Reddish, no. . . . Maybe pink?"
"Are they dots, line, or solid patches?"
Silence. (I am beginning to have flashbacks of the ACT's. Maybe if I answer C, I'll have a higher success rate. That is a thing, right?)
"Hmm . . ."
"Is it bumpy to the touch?"
"Not really?"
After about 3 minutes of this my lovely (and tremendously patient) nurse tells me the same advice she told my husband when he called 3 hours ago. "Give it until morning. Treat the fever. It's most likely a virus and it has to run its course."

Ok. Fair enough. But I can't let it go until morning. There is something wrong with my daughter and not only can't I fix, I can't even DESCRIBE it. This is a feeling of helplessness that I don't think I will every adjust to. I understand completely that kids get sick and as a mother (and not a doctor) I am not always going to be able to fix it. That's where I am readily willing to seek out the advice of professionals. However, if you can't see the problem, how can you even begin to seek out assistance?

Sunday, May 13, 2012

Inspiring?

After reading this incredibly flattering and inspiring article this morning, I am left with a myriad of emotions. However, the most prevailing thought is. "Who is this woman? I'd really like to meet her." It doesn't seem possible that the article was describing me and my family.  
There are still so many days where I still feel as if I am in survival mode. Just going through the motions and blindly completing the tasks of motherhood and teaching. Trying desperately to recreate a sense of normalcy and stability for my family, all the while questioning how and why did this happen and how the hell will I get through it?
Those are the dark days. Those are the days where my self-doubt, anxiety, post-partum depression, post-traumatic stress, general craziness get the best of me.
But there are other days where I am so head over heels in love with my Emy girl and the amazingly feisty and sweet personality she has. Days where my husband does some little thing that reminds me why he really is my rock. Or I am awestruck by the insightful, genuine, moments of brillance that my fourth-graders demonstrate or am bowled over by a friend or family members unwavering generosity. These are the days that I can't help but be thankful that this is my life. Vision loss or health issues be damned. I am one lucky girl.
Today is one of those days.
Happy Mother's Day to all the Mamas who inspire me day after day to keep fighting and reminding me that in some way we are all going at motherhood blindly. Thank you, especially to my mama, who "gifted" me with unrelenting stubbornness and a fighting spirit. Who knew how much it would come in handy? Well, you probably did. You're all-knowing like that.

Thank you for reminding me that inspiration can be anywhere. Even within myself.

Wednesday, May 2, 2012

Anxious Ramblings

I sit down to write and I fall apart. There is so much inside of me that needs to get out. Worries, anxiety, memories, hope - and yet every time I attempt to put words to the chaos I feel inside my throat constricts, my stomach clenches, sweat begins to trickle down my neck, my eyes well up, and I feel frozen. In a word, I panic. I've spent the last two years reconstructing myself, blindly  replacing the remnants of shattered dreams back into some resemblance of reality. Why is it not done? When is this journey going to be complete?

Monday, February 20, 2012

Grief

Every now and then it hits me. The clichés are endless - it’s like a truck; it's like a ton of bricks; it’s like someone, suddenly pulled the rug out from underneath my feet. BLAH, BLAH, BLAH. The clichés don't even come close to describing the feeling accurately.
 Grief. Loss. Fear. Inexplicable sadness. I try and try to put these emotions into words and I just can't. There is not enough air in the room, not enough space for your feelings in your heart or your head. There are not enough words in your vocabulary to do it justice.
I can identify the triggers. That part is easy. It's the friend telling me she's pregnant. It is an episode of House or Grey's Anatomy where I know ALL of the crazy medical terminology because they were used to describe me once. It is an article about anxiety. It's a sleepless night. It's the smell of hospital clean.  It's pretending to see what someone is describing to me day in and day out. The triggers are innumerable and endless. They're always there and yet I never know when they are coming.
Loss is a universal connector.  The vast, endless, sorrow that sucks the air out of the room binds every human on this planet together. As alienating as it can be, grief has no prejudice. There is no rhyme or reason as to why this happened to me. Why I got sick, why I lost my sight, it is all a mystery that I could wallow in over and contemplate for days or years on end. But regardless, it happened. I am dealing. I am grieving, adjusting, and handling it the best I can. There is no right way to get over this. There is no wrong way either.
I seek solace in the lack of rules. The creation of my new normal is somehow freeing. Knowing that there are others who have lived to tell the tales of life changing instantly and irreversibly and hearing their struggles never fails to bring me out of the solitude of grief and feel connected.
That is why I started this blog. To build connections. My story may not be your story, but we all have one to tell. Thank you for sharing in mine.

Scattered Brain Syndrome

Call it ADD, call it severe procrastination, call it creativity, or what have you; I have a scattered brain. I have no trouble coming up with plans, ideas, or inspiration and I completely suck at making time to follow through with anything that doesn't have to get done. This is not news to anyone who knows me even a little. But it does explain why I have 20+ unfinished posts on this blog and only 3 published ones since last fall. Yikes.
So here is my plan. I am going to crank out one or two (maybe more) posts this evening in hopes of feeling somewhat accomplished. The topics may not seem as timely as I would've hoped, but what can be timelier than getting it done?
Post #1 = complete.

Sunday, January 8, 2012

New Year, Same Me?

New Year’s resolutions have always been tricky for me. Being a perfectionist, albeit a recovering one, I am constantly attempting to improve myself. Every January, every Monday. Hell, every day, is a clean slate. The chance to start anew. It is the year, the week, the day I will finally________________.
 What exactly? I am not entirely sure.
 From losing weight, to calling my grandmother more often, to reading more nonfiction, drinking less wine, being nicer to my husband, I am constantly committing and recommitting to make a change.
Here in lies the problem. My husband says I like "shiny things." This is his way of saying that I am prone to getting super excited and getting REALLY into something, for about two weeks. Then my attention wanes and it's on to the next big self-improvement plan.
He's not wrong. I am a fan of innovation. I like trying new things. I like discovering new bands, new restaurants, meeting new people, exploring new hobbies, or whatever. But there is a lot to be said about persistence and consistency. Being reliable, finding a routine and a rhythm that works for me and my family; those are ultimately my New Year's resolutions for 2012. I have had enough change in the last 2 years to last me a while, so this year I am resolving to not move onto something else when it's no longer new, fun, or interesting. I am committing to continually work on previous goals and resolutions. And yes, they include losing weight, to calling my grandmother more often, to reading more nonfiction, drinking less wine, being nicer to my husband.