Archives for 2015

Thursday Ten: Almost Older edition

1. My birthday is tomorrow and I am having a very hard time with it and that seems to be the way of the world but I don’t recall a birthday being quite this rough since 35 and 35 well, that was pretty brutal. This is no milestone year but it’s been a year that has tested me and I’m not sure how I feel about 39 yet, but 38 has been a bitch.

2. I’ve also been sick now for over a week and that has done nothing to improve my surly mood. The cough comes and goes and so does the runny nose and fever face. NO IT IS NOT A HOT FLASH.

3. Who’s already starting to look for matching Christmas pajamas? WE ARE. The girls and their cousins have worn matching jammies for the past few Christmas mornings and I LOVE IT – so, October 15. Shopping for Christmas pajamas.

4. ArtPrize has come and gone in Grand Rapids. Honestly? I love it for a week but much beyond that, I just want everyone to get out of my way and go home. I don’t even know what pieces won this year – but I know that there were very few pieces that made an impact on me this year – unlike last year’s winner – which took my breath away from the moment I saw it. This piece, below, was one that I really loved this year.
Maya 7624 | Seungmo Park

5. My netflix binges lately have been HGTV inspired – which is mostly because since giving up cable, all I really miss is HGTV and Food Network. So, we’ve all the episodes of all the Genevieve Gorder shows we can find. And I’m about to start in on Fixer Upper… with a bit of Throw Down with Bobby Flay on the side to change things up. I don’t even really miss live television, but I will if I ever get all caught up on the good stuff.

6. Dude. I just helped my eight grader with math homework.

7. I’m not saying she’s going to get the right answer.

8. I’m really trying very hard to keep my chin up lately. I have a big stack of library books to read. Reading helps – sometimes it’s nice to be in an imaginary world.

9. The girls and I had family pictures done a few weeks ago – I can’t wait to see them. It’s weird to be on the other side of the lens, and I’m… kind of terrified a bit to be on the other side of the lens.

10. Ah. Tomorrow is a new day. An older day. Sigh.

Thursday Ten: Fancy Butter edition

1. I buy fancy butter. In our house, that’s the name for the brick of European salted butter that we’re all convinced just tastes better. It’s better on toasted bagels and pretty much rules the world.

2. The kids are BACK! IN! SCHOOL! Glory be. Never thought the day would come. And so far, so good.

3. Trying really hard to find the joy in life because I’ve been such a grumpelstiltsken lately. I found myself getting so frazzled by things lately and I hate that feeling. The feeling of overwhelm is not one that I cope well with – and so I’m trying to tell myself to just mosey on through life and get through it little by little. Yeah, obstacles suck… but if they didn’t, they’d call them something else. Like… waffles. I don’t know.

4. Been thinking a lot about the state of the health care system in the United States. It’s broken and I have no idea what the right answer is to make it not broken – but you know – yeesh. I’ve heard enough horror stories in just the past few days of people having to damn near beg their insurance companies to actually DO WHAT THEY ARE THERE TO DO. Y’all, that ain’t right.

5. Last night it was cool enough to sleep. Bliss.

6. There is a major construction detour in my town and it’s irritating the snot out of me. I think of how frazzled I get at work when I think I’ve messed up and I wonder about the dude who grossly underestimated the time it would take to do this project and I hope the fact that he’s inconvenienced everyone’s lives for MONTHS ON END has caused him to lose some sleep.

7. Sooooooo. Who’s ready for this election to be over already?

8. Everybody wants to be viral and while I love some of the messages, for the love of potatoes, I’m tired of videos of people standing in their underwear in public asking people to draw hearts on them. It was moving the first time. The second, third, fourth… not so much. It ceases to be effective when other people rehash someone’s idea over and over so it’s no longer something that feels authentic, but more so, “Well, it worked for the other girl, so maybe everyone will like it if I do it too!” Just. Be you, do your own thing, have your own idea.

9. I’m not saying that skinny people shouldn’t be standing in their underwear in public. Or that not so skinny people shouldn’t be standing in their underwear in public. I’m saying BE ORIGINAL for goodness sakes. Put the markers away. Do the hokey pokey for body acceptance. (Or don’t – because that would be stealing my idea.)

10. One of these days, I’m really going to follow through on that “getting more sleep” thing.

A letter to my daughters on the bigness of feelings

To my darling daughters –

Being a mom is one of the most rewarding and most challenging jobs I have ever experienced. I have been through hell and back in various jobs along the way in my life. In high school, I worked for a banquet hall and there would days I would spend hours on end in a walk in cooler making salads dressed in artificially colored green ranch dressing. I have worked for wretched people. I have spent hours on a trade show floor, touting the benefits of various automotive parts. None of that has been as great a blessing or as big a struggle as motherhood.

This is not a post about that really.

It’s about how sometimes I know I should say something and I don’t know how to say it. It’s about how I have all these words in my head all the time, words I try to share with you, words I hope are sinking in – but I have no guarantee that the words are. I have no guarantee that you are remembering. That these words have taken root and are as much a part of you as your marrow, your cells, your you.

Recently, a teenager in our community committed suicide. A terrible thing made even more terrible because it was someone that you knew, Princess, someone that you spent time with in gymnastics. This was already so awful, and it was made even more awful because for the first time, this awful thing wasn’t entirely outside our orbit. This required that you be faced with the mourning and the explanations and the aftermath of what happens when someone who was there suddenly is not there.

It’s devastating to me to think of anyone feeling the kind of pain she must have been feeling in order to take her life and I realize that I must be so blessed to be unfamiliar with the kind of sadness and hurt that leads to the kind of thinking that results in suicide.

This is not a letter to pass judgment.

I think of what her parents must be feeling and my heart, it breaks in half. I wonder what they’re thinking, what they’re feeling. They must be recounting these last weeks, months, wondering what they did or did not see.

You, my children – you are my world. And I want to take this moment to make sure you know that I am always here. I am on your team and I am your biggest cheerleader, and I am your strongest supporter. There is nothing you could tell me that could ever make me turn my back on you. There is no emotion too big that we cannot tackle it together. There is no sadness so great that I would not be there for you with open arms. There is no problem so big that we can’t figure it out together.

Suicide is a permanent action for temporary feelings.

And that comes from that naive place – that place that has never known pain like that, that place that hasn’t felt mired in despair – I cannot know what drives someone to take their own life because I’ve never been there.

But I guarantee you, I will always be there for you. Please know that you can come to me if you feel hurt, or sad, or if you feel despair. If you feel depressed or alone, please know that you’re not alone, and I will do what I can to find help and to find answers.

And please know that this extends not just to you – but to your friends. If you see your friends hurting and you don’t know what to do, please come to me. Please talk to me. Don’t shoulder this on your own. You don’t have to have all the answers, you don’t have to carry the weight alone. If a friend is hurting, if they talk about despair, if they are making plans to do anything to harm themselves or others, please know that I will do everything in my power to help you help your friend.

Growing up is hard, I know. But we can get through this all together.

I promise you. Never forget that I am here for you. Never forget that you are loved. And never forget that you are not alone – and that together we are stronger than each of us alone.

I love you very much, and I’m so very lucky to be your momma.





This week is Suicide Prevention Week and September 10 is Suicide Prevention Day. The National Suicide Prevention Lifeline is: 1 (800) 273-TALK (8255)

Please. If you need help, know that there are people you can talk to, people that can help.


Thursday Ten: All Summered Out edition

1. After three out of town trips this month, I’ve gotta say, I’m really tuckered out, and ready for summer to be over. I love to travel and have enjoyed myself – but I’m ready to spend some real time at home. I’ve been away three weekends this month and I feel like I’m drowning in all that hasn’t gotten done around my house.  This weekend I think I’ve gotta write myself a massive honey-do list and try to make some progress.

2. Making progress would be easier if things would QUIT BREAKING around my house. I’ve replaced my washing machine and tomorrow, my new refrigerator is due to arrive. When I got my oil changed yesterday, I was told I needed new tires like ASAP, and so basically I’m looking up at the sky saying, “Hey UNIVERSE – what the h-e-double-hockey-sticks is this really all about because dang!” I’m feeling a little overwhelmed by it all.

3. Especially because I JUST WANT TO RIP OUT THE STUPID 15 YEAR OLD CARPET AND REPLACE IT. It’s ugly, matted and just gross. But, y’know, no money tree.

4. This past weekend, the family got together and went up north to Mackinaw City. This is the Mackinac Bridge.
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5. The thing about expecting a new fridge is you have to clean out your old one. Do you know how much salad dressing I threw away? Tons. Like seven half-used bottles that had expired. And barbecue sauce? I threw out two bottles of barbecue sauce – AND I DON’T EVEN USE THE STUFF (so you know it’s been in there a long time).

6. Just a few days left of the latest 365 project – cannot believe it’s been nearly another year. Time just keeps on keeping on.

7. And two weeks until school starts. I think the girls are ready for fifth grade and eight grade. This summer flew by faster than most – but every year I get to the point where I think year round schools are actually a really great idea. Now, two weeks before school starts, we’re at that point.

8. I got the results of my genetic testing and I would think I’d feel a bit something more – but instead it was fairly anticlimactic – because you know, it’s all well and good to know the cause but there aren’t any cures yet and my retinas are still stupid.

9. A taste of fall weather this week and while I know that most people are all, “WHERE IS SUMMER?!” and I’m like, “Oh! I don’t need to turn on the heater or the AC and I can wear jeans and not sweat a whole bunch.” In short: It’s bliss. BRING ON SEPTEMBER.

10. The thing about a three vacation month is that you never entirely catch up on sleep. I think I shall be exhausted until October, at this rate. I’m so tired I can still drink caffeine at 10 p.m. and still zonk right out. Zzzzzzz.

I only embrace the Mitten if it’s holding a wine glass

Folks in Michigan, much like folks in other states I’m guessing – tend to really love it here. Pure Michigan. Mitten shaped necklaces. Cutting boards shaped like the state (with or without the upper peninsula). And maybe it’s because I wasn’t born and bred here, maybe because moving here as a teen took me away from some crucial developmental period where people learn to love this state but… well… I just… don’t.

In the winter it’s too cold, in the summer it’s too hot. The snow is too snowy. The drivers are too left lane-y. It’s humid. The roads are full of potholes and are brutal on my car’s alignment. The list goes on. It may be home, but for the most part, it ain’t where my heart is.
With one exception.
When I was  younger, my grandparents had a cottage near Traverse City – but I didn’t spend much time there. My brother and I would visit occasionally during the summers when we were younger – shows at Interlochen, miniature golf, to Pizza Hut with my grandmother, and stopping at local stands on the side of the road to buy real maple syrup. Splashing in the lake, watching chipmunks… It was a visit with grandma.
Traverse City was a different place for me when I went up north for the first time after my grandmother passed away. We gathered for her memorial celebration and I realized after my days there that for the first time in a long while, I felt an absence of stress. The heaviness that rests on my shoulders wasn’t there.
Again, a few years later, joining some friends at the edge of the water on the bay. Talking well into dark as the water lapped around our beach chairs. That peace.

And so now, I am overjoyed that we find reason to get up north far more frequently that I ever have in my life. There’s a connection I feel with this town that I have not felt anywhere else in Michigan.

When I’m here, I think, Perhaps I can see myself staying in Michigan.

(I can guarantee you, no place else in this state makes me feel that way.)

And it’s not just the perfect blue sky or the water.


If I’m being honest, I’m not entirely sure what it is about Traverse City that makes me love it so much.

(Wow, this is beginning to feel like a sponsored post. It’s not. I’m just a fangirl.)

I could happily just ride along the coast of Traverse City all day – from one peninsula to another – but fortunately? I don’t have to. There are plenty of wineries to stop by along the way.

And so we did.

L. Mawby. Sparkling wines. I love everything about Mawby – from their yummy bubbly to the cherry jalapeño cream cheese and crackers they serve with it. I tried something a little different this time – a wine called Redd. Redd, as you might imagine had more properties of a red wine – and given my tendency towards headaches after red wine, I tend to skip it.

Fortunately, Chris traded me – his Leland for my Redd.

Lovely, well made and fun.

And from there we ventured over to Old Mission Peninsula.

Bonobo Winery is fairly new – just opened this summer – but the view is pretty darn amazing and the wines are all “known to incite passion” (or so says the description…of every single wine). We were a bit hungry by the time we hit Bonobo – and decided to try out their small plates menu. Delicious olives with feta cheese and marcona almonds – amazing. (The small plates menu was curated by Mario Batali which probably explains it – so on point. I had wanted a savory snack and I never knew that what I really needed was olives. And almonds. And cheese.)

We ended the day at 2 Lads – our fave winery. We recently joined their wine club – their rose’ is a favorite of ours (It’s also sold out which is a tremendous bummer because it is so good, so smooth and perfect for pairing with darn near anything when the weather is ten thousand degrees like it’s been). Saturday night we ate phenomenal food (are you seeing a theme here?), drank spectacular wine (ditto) and shared in the company of each other as well as the company of others who’d also traveled from all over the state (and in some cases, from out of state).

It was a privilege to hear the winemaker talk of wines they were pouring and how they are made. Neither one of us is a fan of Chardonnay and yet bought a bottle to take home (it was that good). And Chris got to drink my Cab Franc. Lucky guy, that I don’t drink red.

It’s not just the water.

It’s not just the sky.

It’s not just the peace.

It’s not just the wine.

It’s not just the good company.

It’s not just a greasy breakfast before heading out to taste wine.

It’s not just feeling sand in my toes.

It’s not just the lighthouses.

It’s not just driving with the windows down and feeling the breeze from the water.

It’s all of that. Every bit of it. And somehow Traverse City feels like the kinda place that could feel like home.


Cheers, Traverse City. Thank you for another lovely weekend.

A Letter To My Pumpkin on Her 10th Birthday

Dear Pumpkin,

Ten years ago this morning I can tell you exactly what was on television: baseball and syndicated episodes of Mork & Mindy. I’m not sure how on earth there was baseball on television – we arrived at the hospital sometime around 4 a.m. and you were born before 6 a.m. – but there was baseball. Somehow. This morning, there will be no baseball or Mork & Mindy, but there will be birthday gifts early in the morning – surprises you don’t know are coming, and tonight we’ll order Chinese food and celebrate your birthday with dumplings.

Today you are ten. Double digits. Halfway to 20.

Where on earth does the time go?

You still love dogs – more than most things, actually – and along the way you have had things that have interested you, things that you clung to but nothing nothing nothing like your love of dogs. I know it, your friends know it, your family knows it – so much dog stuff – right down to the wrapping paper on the gifts from grandma.

Your dinosaur phase never lasted so long.

You are my tender heart, my sensitive soul. You wear your heart, your emotions, they are all on display for everyone to see. And I both love that about you, and worry about it at the same time. I know that there are times I don’t understand, or times when I am not as patient as I could be, but I try, always to be gentle with your sweet heart because I know how strongly you feel everything.

You recently started taking piano which I think is very special – last week you texted me and said, “I don’t think I want to do this anymore.” The next day, you texted me after your lesson and you said to me, “I changed my mind.” I’m excited to see where this takes you. It doesn’t have to be a thing you do, but I’m glad that you’re trying it because I think music is good for kids (hey, it’s good for grownups too). I love that you’re trying something new and that you’re giving it a shot even when it was frustrating – because there are moments where life is frustrating and you have to work your way through the challenges sometimes in order to build your strength and get better.

Look, I don’t care if that thing you love is piano or if it’s something entirely different (I love that you love dogs, that you write, that you’re so creative) – I just want you to find ways to build joy into your life, to find new things and try new things, and to take the opportunities that you encounter.

This year, you’ll be going into fifth grade – our last year before middle school. I cannot believe this is our last year of elementary school. We celebrated your birthday over the weekend and you had friends come over and spend the night and you girls stayed up giggling and running around until 11:30 and oh, how exhausted we were yesterday – but I am happy to see you and your friendships and the people you surround yourself with. We had pizza and brownie sundaes and when you played Truth or Dare with your friends, you prank called your sister’s phone as if you were placing an order at the Wendy’s drive through.

Last week, you and your sister started writing a song about being sisters and I swear I felt my heart just explode into a bunch of tiny beautiful sparkly pieces because I know you argue sometimes but other times, it’s so very clear how much love you have for each other, how much love you have for your sister. It makes me insanely happy.

You won’t take the last piece of cake in case someone else wants it. You’re kind, generous and always thinking of others.

Your favorite color is turquoise.

You write imaginative stories and not just imaginative stories, but you create these well thought out concepts in your head about what you’re going to do and how and that’s pretty impressive.

You have a way of sensing when others are hurting and you are at the ready with a hug – it’s one of those things – I worry about your sensitivity sometimes, and yet one of the true benefits of it is that you can read the emotions of people around you and you respond with kindness and with love. You are tender hearted, but you show tenderness in return and that is a true blessing.

I love you so very much. You will probably always march to the beat of your own drummer – and while other people may not always truly appreciate the amazing and wonderful things that make you who you are, I will always love the wonder and the joy you bring into my days, just by being you. You being you is perfect.

Happy birthday, sweet Pumpkin. I love you so very much and I’m so lucky to be your mom.




Thursday Ten: Not So Silently Seething edition

1. Annoyance levels are running high, y’all. Between schmucky people being schmucky, work loads being heavy, allergies being stupid. people on Facebook being ignorant, well… Pfffffft. Not sure why it’s so complicated, getting people to act nice but y’all: Just. Act. Nice.

2. My toaster is broken and heating toaster waffles isn’t the same. It’s not very efficient either. How the heck did my toaster break?

3. I don’t care what YOU do, but you’ll never convince me to spiral up some zucchini and actually refer to it as noodles. It’s not noodles. It’s vegetables. Leave my carbs alone.

4. We’ve been on a roll trying a new restaurant every month. This month was Grand Rapids Brewing Company. Our visit coincided with the GR Grandwich competition so Chris and I both ordered the Peach Pitt – but since we were at a brewing company (and I don’t beer much!), I got a lemon thyme margarita. The sandwich? Yum. The margarita? Mine are better.
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5. We are smack in the middle of July. Summer is half over. And 2015 is more than half over. Time spins quickly. Too. Quickly.

6. I have started a blog for my retinitis pigmentosa whosie whatsit because it just seemed that all of my feelings related to it tend to be all icky and emotional and even though I’m still me – I have a hard time with bringing all of that here. Writing all that here. Perhaps it’s silly to look at this place as a haven when I’ve been through some other ugly stuff over the past nine and a half years (yeah) that I’ve been blogging – but… you know. That’s how it is.

7. We took an adventure this past weekend and went to see The Minions at a drive-in theater! I haven’t been to a drive in since I was a kid – I remember going with my family to see “Airplane!”. It was a fun adventure to put blankets out under the stars and watch a movie outside (the girls and I eventually went to sit in the car – the sound was better via the radio and the seats were comfier!).

8. I’ve never understood anxiety about dentists. Our family dentist is hilarious and calls each of us “homegirl.” Related: the girls have to go to the dentist today.

9. I realize that the fear is legit – I’m sure some of you who are scared of dentists aren’t scared of your eye doctors, so I feel ya.

10. There’s been so much rain this summer (boo) but more perfect weather days than any summer I can recall and at least one of those is a very good thing.

Thursday Ten: It’s Been Awhile Edition

1. I haven’t posted much lately – and it’s not because I have nothing to say – it’s never because I have nothing to say. I have tons to say. I just don’t know how to say it. And sometimes I feel a bit negative. Okay, a lot of times I feel a lot negative. I’m sure that’s normal but it’s not the happiest feeling in the world and it’s hard to write about and y’know, it is what it is.

2. And so somehow we’re almost in the middle of July and how the heck did that happen? This summer is flying and before I know it, we’ll be stuck in February under three feet of snow.

3. The girls are with their dad this week – it’s always hard to adjust to the times when they’re not here. Miss them like crazy. The workweek has been absolutely bonkers so I’ve been going in early and trying to make a dent in my project list – which helps, but… I’ll be glad when they come home. It’s an adjustment – the summer schedule. I guess the good news about it being halfway through July almost is that in a month and a half, the normal schedule will be back.

4. I have hit the realization lately that I’m really bad at some of this being-a-grownup stuff. Stuff like budgeting for home renovations. I keep saying to myself, “UGH I want to get rid of this living room carpet.” If I had just started saving when I first started having that thought, I bet I’d have saved enough to actually do the freaking project. Here’s to actually setting up savings accounts and planning for all the things i want to do – things like hardwood flooring and Spain.

5. They’re FINALLY going to open a Trader Joe’s in Grand Rapids this fall and I’m kind of pretty much excited. What’s your favorite thing at TJ? (They’re also apparently opening a Chik-Fil-A and while Chris is excited, I tried it on a recent trip to Ohio and found it thoroughly underwhelming. So there’s that.)

6. After a week of “Watch Me (Whip/Nae Nae)”, I’m wondering just how many gymnastics floor routines this season will feature the Whip. Apparently two, so far.

7. My eyebrows are in dire need of waxing.

8. For the past two days, I have had my air conditioning off and my windows open and it’s just absolute bliss. I know people are ticked because this doesn’t feel like summer, and it’s too cold for pools – to which I say TOO BAD FOR YOU! THIS IS MY BRIEF BIT OF HEAVEN.

9. Things I’ve bought this week that I love: The Skinnytaste Cookbook: Light on Calories, Big on Flavor and Joy Williams – VENUS. Neither of these is a paid or sponsored review – these are things I saw and wanted and purchased with my own moohlah. I haven’t made anything out of the cookbook yet – but there are so many great looking recipes (lots of yummy latin-inspired recipes so I’m stoked!). And Joy Williams – I know there’s quite a few bloggers doing reviews of her stuff, but I decided on my own to purchase her album because I have loved her voice and The Civil Wars and I have basically been humming the whole album for days. Good stuff.

10. The good thing about Thursday is that it’s almost Friday. Have a good one, y’all.


Thursday Ten: I don’t want to have to use my AC edition

1. The humidity. Oh the humidity. I’ve had to break down and turn my AC on. It’s not the heat is the UGH UGH UGH. Actually, it’s both. When I can, I leave it off but honestly, I’m more concerned with the pup getting too warm during the day. It’s only June 11, though and I’m already kind of freaking out about my electric bill if I’m using the AC already.

2. Spring and fall. Spring and fall. Those are my seasons. You know, the short seasons that last about five days each.

3. I finally used Apple Pay for the first time which was oddly exhilarating and far too easy and did you know you can Apple Pay RIGHT THROUGH THE SEPHORA APP? And the Starbucks app? And wheeeee, I just ordered some new Clinique Black Honey Almost Lipstick because best. color. ever. (And Apple Pay.)

4. For nearly 24 hours, my Fitbit wasn’t working and I died a little bit inside. I’m addicted. Also, I’m absolutely positive I walked 18,000 steps that day and I guess we’ll never know. (It’s working now. Oddly, I was registering an almost complete charge but I gave it a whirl and left it on the charger for a few hours and then it was working again. Hallelujah)

5. You guys are nice people. You are.

6. This is not going to be a retina blog. Because I can’t have this place be a retina blog. Oh, and because I started a retina blog somewhere else. Gotta compartmentalize sometimes.

7. School’s out for the summer and with that comes the summer schedule with the girls spending half the time with me and half the time with their dad. It’s always a tough adjustment. I’m used to having my people around and it’s a bummer when they’re not.
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8. I miss my daughters.

9. I still tell myself every night to go to bed earlier and then I still never do.

10. I admit. I’m grasping at straws for ten things this week. I mean, how on earth could I top my broken retinas?

Mangos and grief and looking for normal

I just sliced a mango, so juicy that as I held the fruit steady, its juice ran from my cutting board. So ripe, I put the knife down and pulled chunks of the fruit apart, tossing them into a ceramic bowl. When I finished, I grabbed a mango chunk from the bowl, popped it into my mouth – refreshing and sweet. I washed and dried my hands, then poured the mango from the bowl into a plastic zip top bag and threw it into my freezer.

I eat a lot of mango lately.

Mango. Papaya. Avocado.

I’ve never been a smoothie person and now I make smoothies all the time because vitamins. I need vitamins. Nutrients. Goodness.

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Mangos are rich in vitamin A. Avocado contains lutein. Also, supposedly it helps turn the carotenoids of the mango into active Vitamin A.

I don’t know if it really helps anything, but at this point, I also figure… what could it hurt?

I was recently diagnosed with a degenerative retina disease. I was probably born with it – it’s a hereditary disease that no one in my family seems to have. We’ve traced back – we can’t think of anyone else who has it, but to be honest, i don’t really know how far back we went. It’s autosomal recessive which is a fancy way of saying, I received one copy of a mutated gene from my dad, and one from my mom – they were both carriers so they each had a good gene and a bad one… and I got the messed up ones (yay me). It means that there’s probably been generations of carriers of this gene, but they just didn’t have the dumb luck of genetics.

Retinitis pigmentosa.

I had never heard of it before this year.

The diagnosis has hit me a bit like a ton of bricks and on some days I feel totally normal and I don’t think of my eyes at all and on some days, I find myself sitting on the floor of my mudroom crying because I don’t know what the future holds, and all I can see is a future of worst case scenario.

The reality is my night vision and peripheral vision will progressively worsen.

To what extent, no one can say for sure. But I know what the worst case scenario is and in my scared moments, in my vulnerable moments that is the place where my mind goes. To the worst place.

I shut my eyes sometimes and I imagine a world where the scenery is gone and if I let myself stay in that place my heart will break in half and it takes awhile to unthink those things and so I try sometimes to just pretend that everything is okay.

I am trying very hard to be hopeful and I am told and I have read that there are tremendous advances being made in medical research. I am told that there will be treatments in my lifetime; I’ve even been told that there could be cures in ten years.

And so.

That’s what I need to remember.

And that’s what I need people to remind me: to have hope when I don’t feel hope, and to believe that everything will work out the way it’s supposed to be.

I know that they say that things happen for a reason, and I’m not necessarily inclined to believe in that cliche – because for me, the reason is just dumb luck. Genetics. Nothing that anyone could do anything about.

And all I can do is wait.

Look for my new normal.

Feel sad when I feel sad. Feel angry when I feel angry. Ignore it all and bury it deep when it’s too much to deal with.

And in those moments when I feel empowered, in those moments where I tell myself that this will not defeat me, this will not define me, and I am stronger than all of this and I will get through this. I will make a difference.

I wish there were more empowered moments and less grieving moments.

I eat a lot of mangos lately. More avocados than ever in my life.



To tell Congress to support vision research, click here. There is so much amazing research being done; research that can maybe help me someday. It needs funding. Contacting your state’s folks really couldn’t be easier, click through – I guarantee it will take less than two minutes. If you’re able, consider a donation to the Foundation Fighting Blindness to support research and programs to fight blindness.