Hey Lou Writes

The Grey Matters


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My Maple Tree

My womb is an empty harvest
Promising plenty and starving me
Both at once

I saw it as life
Blood and energy and pain
Until I saw it as a wasteland
Lifeless
But there was still blood
And still pain
Always pain

When I place my hands on my belly
My nails claw, gently, hinting
At the violence I’d like to invoke
I’d like to rip it away
Tear it out
Bleed to death
And cry out for her while I die

Until, I remember
The hands that touch me
My own
His
Are gentle and the nails only scrape for pleasure
The tingling inside comes from something within me
From no other life than the one I live
I’m inside of me
No one else is

I am a human sacrifice for all that could have been
I am a hollow tree with limbs trying to reach for her family
Cracking in half or maybe three
I am a rock, the kind with magic inside
That only shows when it’s broken

I am made of ancient sand and dirt and stars
And I hope I become a maple or
A weeping willow
Swaying over a river that tears through the earth
Witnessing the power
Part of the strength that holds the foundation together

I won’t crack when the ice comes
If someone ties me together
Someone will say, “That should be enough”
And still, I’ll threaten to crash
Only with the one I love


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Silence

I haven’t had a lot to say, hence the overall silence this past year on Hey Lou. This blog started more than a decade ago as something I loved — I loved sharing the new insight I had on the world. I loved sharing what I was learning about organic food, eating local, and trying to make the world a better place. I loved the support I had when I went through divorce and started a new chapter here in the midwest. I loved sharing about my life, about the struggles, about my faults, about just about everything. Second marriages, stepmotherhood, running, getting a dog. I even enjoyed (because I believed the ending would be in my favor) sharing about infertility.

But it didn’t end how I wanted. And so I had no words. Nothing.

Only a visceral anger that oozed out in secret, in only my safest places, lest I ruin everything in my life by saying and doing things I didn’t truly mean.

It’s been a shitty, shitty past two years. That’s maybe the most honest thing I’ve ever shared on this blog. I’ve hated my life, I’ve been angry at the life I chose, and I’ve lashed out. I’ve broken things, I’ve had too much to drink too many nights in a row, I’ve smoked a few cigarettes, and I’ve cursed at God. That is the truth, and that is what I’ve been up to during this silence.

I haven’t been able to sit with my thoughts and type anything. I didn’t even attempt it. I stayed a safe distance away from all of that.

Yet, here I am. Now.

I’ve never made a New Year’s Resolution before, and perhaps that’s because I never really “needed” to. However, when 2021 came to an end, I knew I’d have to make some big changes in order to keep my marriage in tact, and more importantly, to save myself.

So here I am, and this time I’m claiming the silence. In fact, I’m calling this my Year of Silence.

Why?

Because I spent the last few years (and ALL of Covid) hiding behind noise. Just ask my husband. Any idle time was spent with headphones stuffed into my ears while I listened to a variety of things: music, podcasts… okay, mostly podcasts. I didn’t take the dog for a walk without something to listen to. Driving? That was the time to turn it WAY up and shut out everything else. I hid in my room a lot. I didn’t like anything I was thinking about and I didn’t like the thought of changing, either. But that’s only sustainable for so long. Errr… actually, it’s never sustainable. And it’s only SURVIVABLE for so long.

I had some wake up calls. Some important conversations. Some truths come to light. Hell, I even had a car crash thrown into the mix that really shook me. (And even though I do not believe in a God who “makes bad things happen”… I sort of think He used that crash to shake me awake, out of my distraction.)

I spent a long time hiding from anything that resembled silence, and in the noise, I couldn’t speak.

Now, I’m claiming silence as mine, and words are finally coming to me.

And I’m sad, sad for all that will never be.

I’m sad that I’ll never watch my stomach grow. I’m sad that I’ll never have fun discussing future names with Israel. I’m so very sad that I’ll never hold a baby in my arms. I’ll never have those gorgeous photos from childbirth – the ones I pictured so vividly – in a tub with Israel in the water with me. I’ll never rock anyone to sleep, or read them my favorite children’s book of all time: The Quiet Book. I’ll never cry on the first day of Kindergarten. I’ll never have grandchildren of my own. I’ll never look into a child’s eyes and see my own staring back at me. And this, this is what I dreamt of. This was it.

And it’ll never be.

So I’m a little bit angry, a little bit sad, and I’m grieving a whole lot.

I don’t have much else to add, except that I’m actively working on being okay. I am working on it daily, and I won’t stop. I have too much to lose. I had to have my eyes reopened to some things.

I see that I have a husband who loves me deeply. I also see that I have three family members who came along with him – three people I cherish and will love forever. I may not be their mother, but we are family. I see that I have a good life, filled with wonderful people who care about me and have made that so so so apparent, especially when things got rough for me. Friends who stopped everything they were doing to pray for me when I found out I had RP. Friends who planned a getaway to somewhere sunny when they knew I was about to implode and disappear like a black hole. Friends who will buy me a beer during my “no spend January” month just so we can chat. Friends who make me laugh, who hug me when they see me, and who treat me like a whole person, not just someone who failed to create another human life.

Turns out, that isn’t what makes someone whole. But I truly thought it was, until very recently.

It’s hard to admit these things, but it feels good to write them down. That’s what I love to do, after all. And that’s something I forgot, too. That I am a writer, and I will always create sentences, paragraphs, words strung together for others to hopefully read. The words come from a deep place, perhaps deeper than my own womb. They create life, at least I hope, for others who might need to hear that they aren’t alone in whatever they are going through.

I’ve been lucky enough to meet several women lately who understand. Who get it. Who have walked their own steps through infertility and came out without their miracle.

My heart aches for me, for them, and for what will never be. It always will. And that’s a part of me now. With every word I ever write again, that ache will be there, with words and life growing around it. The pain will live on forever, though not for future generations, because that ends with me. The new forever I will speak of is my own forever, the one that I have to focus on in order to survive it. Whatever beauty or hope comes next, there is a deep darkness that it had to battle with and ultimately win against… the hopeless parts of me will grow and bloom into a colorful garden with bees buzzing, roots forming, and hope showing up when the sun shines.

I’m so thankful for each and every person who has reached out and shown me love – you know exactly who you are. I wouldn’t have made it without you.

Love, Melinda


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After You Stop

by Melinda Haas

After You Stop 

When you make the choice to stop trying, another part of you dies. 

When you make the choice to stop trying, something deep within you sighs relief. 

When your womb is forever empty, you want to rip it from your body. 

When your womb is forever empty, gentleness must become a way of living. 

When your attempts fail, nothing else seems to matter. 

When your attempts fail, everything else matters a little bit more. 

When you are alone in your yearning, you are an island of resentment, sadness and rage. 

When you are alone in your yearning, you are a rock. 

When surrounded by noise you didn’t create, hands cover ears, eyes squeeze tight, lips seal with a scream inside your chest. 

When surrounded by noise you didn’t create, you must create your own safe places. 

When your arms are empty, they’ve never felt so heavy. 

When your arms are empty, there’s never been this much opportunity. 

When you make the choice to stop trying, another part of you dies. 

When you make the choice to stop trying, something deep within you sighs relief.


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I Ran (…and I Ran… and I Ran…)

Running, like the theme of some really cheesy country songs, is my strongest M.O.

I can run away from something, no problem, forget it happened, move on, pack up a few belongings, and GO.

But this isn’t what I’m talking about today, and that M.O. of my past is no longer available to me. I’m in my forever marriage, I have three kids, two dogs, a MORTGAGE (never did I plan to have one of those God forsaken things), and a career, among other things.

So now, the only way I can run is to actually run: tie on my outrageously expensive trail shoes, braid my hair out of my face, put on the workout “outfit” I used to dread, and put one foot in front of the other.

Running has been a huge theme in the last few years for me. Outrunning my problems, I thought, was preferable to going on a run. And when my husband became an ultra-fan of ultra running, we had some problems. I couldn’t understand any of it. Why torture yourself? Why make something longer than a marathon your goal? Why risk injury, burnout, hours away from home, getting a tick for crying out loud. Why???

I’ve shared before about watching Israel run his first ultra – a 50K at Afton. I had to see it to believe it, and seeing it once was all I needed. The trail running community is kind, supportive, encouraging and overall fantastic. I saw what Israel saw, finally.

I initially thought that running meant trying to leave. Like the metaphorical running that was always my “out,” I thought that running in actuality meant the same thing. Israel got super into running long distance right around the time of my RP diagnosis. So I wrongfully assumed he was running away from me. I was now a burden, and someday he’d have to take care of me. Who wouldn’t run? That’s all I could think each and every time he laced up his shoes and ran.

Fast forward a few years, and suddenly I am running a 25K. Can’t quite tell you how that happened, except that my husband is kind of an infectious enthusiast. I wanted to feel what he was apparently feeling. Last year, though the race was cancelled due to Covid, we went out and I ran a 25K. This year, I did the same thing and the race was ON. I had a number, a start time… the whole deal.

And you guys, I DID IT! I am not above saying that damn, I am proud of myself. A 25K is a big deal for me. Like huge. Like I never thought I could do it, and I never thought I’d kinda sorta enjoy it.

zar, giving me a high five at the second aid station

But I did. I more than enjoyed it. I liked being alone (something new for me), I liked sitting in my own thoughts (another new thing for me), I liked pushing my body (I’ve been referred to as a sea cucumber before so draw your own conclusions) … so this was something life changing.

And you know what? The biggest life changer of all?

I learned that running doesn’t always mean running away from something. Indeed, running can mean running toward something. And that makes all the difference.

I can run toward pain, and it can lead to something beautiful. I can run alone, and survive it. I can run toward a goal I have in mind and be okay if the “getting there” wasn’t pretty. I can run toward a lot of things – a brand new concept for little old me.

I’m not some fantastic runner, either. Don’t get the wrong idea. I’m not competitive, which is a plus, because if I were, I doubt I’d stick with this sport. I was ONLY passed by other runners (meaning, I didn’t pass anyone, not a single person), I run like an elephant and haven’t quite figured out how to be light on my feet, I go slower down the hills than I do up them (which is, from what I understand, not how it usually goes), and my knees felt like giant painful grapefruits when I was done. Yet, I was still so so so so so joyful.

Bonus*** My stepdaughter ran it, too. Someday, I’ll let her share the story however she wants to. What I will say, is that she blazed on ahead of me, into the distance, and was hardly even tired afterwards. Amazing!

I guess I’ll keep running. Toward what……… I’m not actually sure. But I know it’s good.

Love,

Lou (who still prefers to take baths, but running is okay, too)


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This is What Grief Looks Like (I’m Exhausted)

For the fourth year in a row, I won’t be able to announce a pregnancy during the holidays. That was my stupid pipe dream, my light at the end of the tunnel, my thing to hold on to. My dream that I was willing to risk a whole lot for.

Now that dream is over, and I will enter the holidays with a flat stomach, an aching heart, and withered spirit.

I want to keep this post short, and not so sweet. This is what grief looks like, for me. I can hardly write. I can hardly think straight. Most days are survival days – though I am always able to laugh and love and find some moments of quiet joy. The sorrow I’m feeling is so encompassing, it’s hard to adequately express. It’s the deepest pain I’ve ever felt or imagined feeling.

I don’t know if the loud wails or the curled up silence are more indicative of what I’m feeling. Perhaps it will always fluctuate, meeting toward the middle a little more each time I let the pain out.

For now, I am leaning toward distraction in every moment. Fully experiencing the pain of our final failed fertility treatment was more than I could bear. I allowed myself to feel it, and I would have died of exhaustion if I had let it continue to overtake me. So if you see me, you’ll probably see earbuds stuffed into my ears, a podcast playing. Or you’ll see me embroidering, knitting, painting, or organizing some silly drawer that I don’t actually care about. I’ll be doing normal things, too. Taking my stepkids where they need to go, supporting them, and cooking dinner for my family that I love. I’ll survive this, but I’ll never be the same.

I considered throwing HeyLouWrites away altogether. I feel like a phoenix who is still deep within the ashes, not really wanting to rise up again. Just let me be, I want to beg and plead. Right now I don’t want this heartache to be for something. I don’t want a redemption story. I don’t want the death of my lifelong dream of motherhood to have some glowing other side – I want it to be the awful reality that it is.

That might not make sense to you, dear reader. It might make perfect sense. And hopefully one day, I’ll feel slightly differently.

I’m changed forever, and there is now a sore spot in my heart and soul that I know won’t go away. I’ll build around it, I know.

I am someone who loves support and friendship. I have many in my life who have been in my shoes and get it in a way that I am so thankful for. Others have no clue whatsoever. But what I can tell you is that I don’t need anyone ever telling me to hold onto hope. I don’t need advice on how to adopt and then magically get pregnant. I don’t need anyone to tell me how sometimes it takes more than 4 years and a series of treatments to get pregnant and maybe I should try one more time. What I NEED is love and time.

So I did what I know how to do….. I cut off all my hair to symbolize a new chapter. I slept a lot (and still just want to be in bed all day, most days.)

And I’m finally doing what I didn’t know how to do… allowing my husband in and leaning into the warmth of his presence. I’m not letting blame and jealousy have a seat at the table – not anymore. I’m softening my edges and telling myself over and over that I am loved. And I’m believing it.

Love Lou,

Who can still smile


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The Most Realistic Expectations

Here are some Realistic Expectations:

Grow up and get married. Get a job you don’t totally hate. Go to the beach a few times in your life. Someday buy a car that isn’t a total lemon. Have kids. Watch them grow. Become empty-nesters and start traveling. See everything you can. Look into the eyes of your loved one when you’re old and say, “Hey, we had a good life.”

I am fully aware that for most of us, as we age, certain aspects of seemingly realistic expectations become shattered and disappear. We all laugh and say, “I’ve stopped having expectations!” and “I sure never thought I’d be HERE” and “If you’d told me five years ago… I never would have believed it.”

I don’t know many people who lack some version of this narrative.

And right now, I’m living my own version — but the funny part is (joke’s totally on me), I thought I’d already gotten past my hard thing.

I’d already been divorced and THEN thrust into a blended family – a stepmother to THREE at the age of 26! Who could have ever imagined such a thing. The things we went through. The things my (now) husband and I went through individually before we met… boy. We had our tough stuff. Surely we’d made it to the other side and would now reap some benefits of that.

Then 2019 began.

Well, this year has been a doozy. I have been hit with my two worst fears. If you’ve read my blog at all, you know what they are. If you’re new here, let me explain further.

In January of 2019 an eye doctor confirmed something I hadn’t even considered remotely possible until the age of 29 when I started to notice changes in my eyes. A diagnosis of Retinitis Pigmentosa – an inherited eye disease that will lead to eventual blindness. And I’ll most likely be legally blind by the age of 40.

The day I heard those words I came home and cried in my husband’s arms in a whole new way. I wailed and sobbed and began the process of grief for a life I thought I could count on. Meaning, a life where I could see everything, all the time, and generally be able to get around without much help.

Simple, right?

Next came the Other Big Disappointment of the year. We’d already been through a whirlwind of ups and downs and hopes of treatment and different sorts of advice from the clinics and our insurance. And then BAM. It all went away. The hope of it being possible fled from my life with one letter from a nurse after coverage was, in the end, denied.

January and July held my two big disappointments in life. And even just last night, I cried in my husband’s arms yet again. Those wailing sobs of ache for a child I not only imagined loving, but do truly love with every part of me. Yes, it is possible to love a child that never existed.

selfie at the fertility clinic

When my eye diagnosis happened, a good friend of mine sent me a book right away. It is Lysa TerKeurst’s It’s Not Supposed to Be This Way. I read it on and off throughout the year so far and finally picked it back up about three weeks ago. The second half of that book cut me to my core, broke apart everything I had left and gave me some kind of strange hope for the future. Each page held some unique sentence that forced tears to gather in my eyes. But the page that absolutely left me breathless, stunned? Unable to stop the flow of tears in order to keep reading? The page that said:

Usually, the most disappointing realities come from the most realistic expectations.

I’m not sure why this was the sentence that stopped me in my tracks. The one that took a fairly calm Melinda and turned her into a heaping mess in my husband’s arm in a matter of 11 words.

Maybe because the cruelty of our life’s disappointments hit me. It isn’t that most of us were hoping to become billionaires and when that didn’t happen, the process of grief set in. Most of us aren’t hoping to travel to every single country on the planet and when we never make it out of the United States, we are simply devastated and wonder why our lives turned out the way they did. We watch the Olympics, and about 99.99% of the population is in awe, not crying our way through wondering why we can’t do that same gymnastics routine.

No. Most people I know who’ve been through total and utter grief, shock, depression, disappointment and heartache have had realistic expectations pulled out of their grasp. Expectations like giving birth. Like being able to see. Like growing old with their partner. Like not being betrayed. Simple things… nothing extraordinary.

Having these kinds of expectations suddenly turn the ordinary into something extraordinary, though. With every pregnant woman I encounter, I see a miracle – a total and utter miracle. With every person I see who can, well, see… I see freedom I will someday lose. We already keep a flashlight AND a headlamp by the door for me. I can’t take the dogs out in dim lighting without the aid of a light.

For others, I know that my own reality is a miracle. I have a loving, devoted and strong life partner. Not everyone has that. I know this and I am thankful. Not everyone has a beautiful home to return to. For this I am also grateful. Not every blended family has love and joy and laughter like ours does… for this I am SO unbelievably grateful.

Though each of these joys, at least right now, is matched with a pain that sears inside of all of the time. I can’t see a family right now that doesn’t remind me of what I have a 1% chance of having. I can’t see someone without my eye condition without seeing someone who will never have to research white canes. It’s the stage I’m in and another gift I have is accepting the process. I know this level of grief will not last forever, but it sure is hard to go through it.

Back when I thought my divorce was my “big hard thing to get through”… I wasn’t doing as well as I am now. Though this is harder and more difficult and MORE life altering, I am going through it with love on my side. I am going through it without crippling body image issues.

Though I am losing my vision, I can see who I am very clearly. And this time around, for this particular stage of life, I am so so grateful for this.

News comes at us to tell us what we are dealing with. Truth comes from God and then helps us process all we are dealing with. (It’s Not Supposed to Be This Way)

This was another quote I absolutely loved from the book. I heard the news at the eye doctor that day that I had RP. I heard the news from my clinic that our insurance coverage was denied. But the TRUTH is that I am not alone – though in my darkest and most vulnerable moments this is the lie I fight off the most. I am not alone, but very much loved and protected. By God, by my husband, by my family and by my closest friends. I am surrounded by more love and support, joy and laughter, companionship and coziness than any one person deserves.

So here I am, trying to get through the rest of today without any expectations, realistic or outrageous. All I have is faith.

Love, Lou (who is wearing her blue light protecting glasses as she writes because GOTTA PROTECT THOSE RETINAS)


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You Throw, I’ll Roll (why losing my vision isn’t all about loss)

I’ve had some ups and down since January, when I learned I had the inherited eye condition Retinitis Pigmentosa. You can read all about that experience here.

I have to admit that in my worst moments, what comes to mind is

what I’m losing.

On some level I’m losing:

• My ability to see, at some unknown time in the future.

• Eventually, my ability to drive.

• And ultimately, a large part of what one might think of as “independence.”

Along the way there are smaller losses, some of which I’ve already experienced. I haven’t had great night vision since around the age of ten. My eyes simply don’t adjust in the darkness (a problem with the RODS, not necessarily the CONES in my eyes). Through the years, that part has grown worse. I’ve been out on hikes as the sun began to set and I’ve felt a panic, needing to get back to the car (and a husband who could stand to stay out until well after the sun actually disappears.) 

Just this week I had one of those “I’ll remember this forever” moments, filled with the kind of emotion that can only emerge once you’re safely snug in bed with your husband. I didn’t even know I had to cry until I was in his arms.

Have you ever had tears sneak up on you like that? Just a few tears, not the torrent of waterworks that ALSO happen from time to time. Well, that’s what happened to me. And here is why.

It started with a great evening. It also ended with a great evening. One of those nights when everyone and everything smells like summer and the back door is slammed over and over with kids running back and forth to go outside. I cooked dinner and could see the kids playing basketball out the kitchen window. Then everyone ran in, ate dinner quickly, and got back out there. Warmth and sunshine is a commodity in these first weeks of spring. Dishes can wait.

But what happened was nothing more than a simple game of catch with one of my stepkids. We threw a green ball back and forth across the area behind the house. We laughed each time I had a terrible throw (too many to count, honestly) and said, “Nice one!” every time someone caught the ball. As evening crept up, I hadn’t noticed that the light was dimming outside.

It was EARLY evening. Not the part of evening where I feel the need to retreat. Not yet.

With each throw my way, I realized I could no longer see the green ball coming my way. I started ducking rather than catching. After a few throws like this, I said, “Wow, I cannot see that ball.”

And this, my friends, is when kids show you love and miracles and compassion. Simple, every-day moments like these is right where the magic happens.

Without batting an eye, my stepdaughter said, “Why don’t you throw it to me, and I’ll roll it back across the concrete to you.”

It was such a simple solution and one that allowed us to keep playing for a while. My step daughter probably won’t remember it, but I will never forget it.

ee6cec6c-003c-4c53-af97-0109ae04f760

In reality, this diagnosis has actually been a whole lot more about gaining than losing. 

I’m not actually losing much.

I’m gaining a perspective I would have NEVER had otherwise.

I’ve gained straightforward-problem-solving-insight of a ten year old and compassion from three kids- all under the age of 13.

I’ve been proven wrong about all that I thought I needed.

I’ve learned about love, and will think every day about when my husband told me “the blind years will be the best years”, and then continued on to talk about the kind of love most people don’t get to experience, but we will.

Each and every day I am gaining what my blind grandmother calls Meaningful Vision. I can still see, and I can still see what God is doing in my life. My vision is changing and it truly is becoming more meaningful.

Even the ten years or so I have left of “full vision” (if I’m lucky)…. that’s the ten years I have left with stepkids under the age of 18. As you can imagine, I viewed the end of that as a certain kind of freedom – much like parents view “empty nests”, but in a different sort of way that has almost nothing to do with the kids themselves, but everything that comes along with a messy and complicated two-household dynamic. Instead of wishing ANY part of the next ten years away, I now know I have to cherish every second. I’ve been seeing faces differently. I’ve been looking my family members in the eye and telling them I love them and that they are beautiful.

I’m seeing that having the ball rolled back to me actually makes the game just as fun, and a person can always improve on their grounder retrieval.

And not all cries are made equal… sometimes a few tears of realization, while in the arms of your spouse, is enough to process a moment you’ll never forget.

What have you seen lately that you might not have seen without a hardship? It’s worth paying attention to, trust me. <3

Love,

4ee4b50f-0e55-423a-b1f0-6400ce70eec6

Lou (who loves kissing with her eyes CLOSED anyway)


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5 Reasons I’ll Make a Fantastic Blind Woman (laughter in the ruck)

This week I’ve been on the upswing of finding out some hard news: impending blindness on the horizon.

blindness, retinitis pigmentosa, rp, low vision, losing vision

dilated eyes at latest appointment

Though Retinitis Pigmentosa might be the diagnosis, I do know that hard things can become the New Normal and that God uses everything, everything, for good. This has been comforting to remember and as my husband had to grab hold of my face and remind me:

this is not the worst thing that’s ever happened to me.

(both good and bad news! ha) I’ve already conquered many of my personal mountains. I’ve learned to live with things I never thought I could possibly handle. I am stronger than the Melinda of the past. So overall, yes, this is very good news. It’s not the worst thing… both past and present.

And as always, laughter has taken a key role in the ruck (anyone else sick of calling every hard thing a “journey”?). I have found numerous reasons to laugh.

The first being the beautiful, hilarious innocence in which an 8 year old boy took in this news. We gathered the kids around and once again told them, “We have something to tell you.” I slowly and painfully told them about Retinitis Pigmentosa. They’ve met my grandmother, so I started with, “You know how when you met Grandmother Linda, she might have complimented your hair, but she also couldn’t see the entire room?” They all nodded yes… they remembered. I recapped what they’d already been told about RP and then said it: Well, that’s a genetic condition. And turns out, I also have it.

One of the first things my stepson did was make fists out of both hands and line them up in front of his eyes like a tube. “YOU MEAN THIS IS HOW YOU WILL SEE, MELINDA???” he said. He looked all around the room that way, through his makeshift tunnel. “Wow, that would be REALLY HARD!” He added.

zar and me

I could only smile and nod and say, “Yup! You got it! Sure will be!”

The hilarity continued the next day when his friend came over to play. He told his buddy right away, “My stepmom is going to be BLIND!” And both boys did the two-fist-tunnel-vision. Again: I smiled, nodded, and said, “Yup! Sure am!”

The way this kid was able to take in that information and do something no adult in their right mind would ever dare … well, it was comforting in ways I’m still smiling over.

Seriously – I highly recommend telling devastating, life altering news to a second grade boy. Just try it and let me know if their beautiful curiosity, blatant words of reality and thought process gives you any comfort.

There were many other reasons to laugh … I just didn’t know it yet when I sat in the chair and first heard the words “Yes, you have it” spoken out loud.

And here’s why, once I thought about it, I’m actually sort of cut out for this:

  1. I love to be near people. Starting at a very young age, I had very little concept of physical boundaries. I specifically remember, at around age 6, my mother saying very kindly and calmly in a shopping mall, “Melinda, could you please, for a few minutes, just try not bumping into me?” I always walked closely, and rarely in a straight line. When I told my husband this story he said, “Ummm… YEAH. I can relate to your mom.” What??? Yes, he assured me. I still have this tendency. So compared to someone who needs tons and tons of personal space and doesn’t have physical touch right at the top of their Love Language list… this is a plus! I can do that part! I can totally handle having someone right beside me to lead me through a room. Just ask my husband. side by side

2. I am not afraid to ask for help. If I have a struggle, I send the mass text out to my group of prayer warrior friends. If I need to cry, I know who will let me in their door with no questions asked – and I’ll head on over. I speak my failures out loud and I probably tell everyone around me more than they ever cared to know about all the ways I’m imperfect and need help. I’ve never EVER been a “suffer in silence” type… ohhh no. I’d have spontaneously-combusted by now. I know that for me, silence and seclusion are works of the devil (literally). I love my community and I thrive when supported by those I love. So many people have reached out and offered their help. I’ve mostly given the answer of, “You can drive me to the grocery store when I lose my license! That’ll help and it’ll give my poor husband a break!” I say this to laugh, and to remind myself that I’m not blind yet. Not by a long shot. (Shown below: just a small example of the people I’ll be calling up for said ride… including my beautiful step daughter, who will be an adult by then!) (if my progression is anything like I’ve seen in my family… which gives me another decade or so of “normal” things like driving)

friends

3. I have the grit and determination of my grandmother. (And sense of humor, I hope.) Seriously. If you read my last blog, you will see my grandmother’s full message to me about this diagnosis. But here is another small snippet: It’s what we need… strength! And by golly you showed me you’ve got it: that grit, that strength, that attitude, that faith, that can-do that has been handed down to us by our ancestors along with this RP. They had no choice over this RP thing but they DID have choices over how they would handle it. I give thanks for that. She is truly the most beautiful woman. She only has what I call “smile wrinkles” and she has aged gracefully. She does not let blindness win. And neither will I. Being that this RP gene has been traced all the way back to my great-great-great-great-great grandmother… (YES, FIVE “GREATS”)… I think I am in good hands. I think I can do this, too.

Right here is my grandmother and her other half (her eyes)… this is the woman who once sent the whole family a photograph of herself in the driver’s seat of a car with her cane sticking out the window. Laughter ALWAYS wins! grandmother linda and mitch

4. My other senses are huge in my life. Okay, you know that game we’ve all played in elementary school, Would You Rather? Anyone ever ask you the old classic: Which would you rather be, blind or deaf?

I ALWAYS ANSWERED DEAF.

But anyhow…

That’s not what was handed to me in this life. Therefore, my answer from elementary school has changed. I wouldn’t rather have either go away, but I would rather deal with my reality in a healthy way. Therefore, it’s the senses of smell and touch that I’m focusing on here. (And I really do love hearing and tasting as well.) I’m blessed enough to be someone who really does have so many things I love to smell. My husband being the #1 thing. Seriously. God gifted me someone who was 100% made for me, and just one way I know this is because he has never once smelled bad to me. His breath? I’d love to jar it up and take it with me. His smell after a long run? Might as well be wildflowers, and it doesn’t ever make me sneeze so it’s even better. It’s a little weird, but it’s a gift and I won’t ever stop being thankful. (It may look like I’m kissing his cheek here but I’m probably just breathing in as deeply as I can.)smelling

 

5. I have a God who will take care of my path. My favorite song growing up has always been “Thy Word.” Did you ever sing it during Sunday School?

Thy word is a lamp unto my feet and a light unto my path …

Nothing will I fear as long as You are near …

I have a God who has lead me down each path I’ve walked. He led me to a town where I knew ZERO people and made it my home, filled with friends and love and family and experiences. God took a broken heart and made it laugh and smile. God took someone who would always be wondering aimlessly had it not been for guiding me into this very moment of my life, and though I may be blind in this life, I will never be lost. I have a God who promises me that “the light shines in the darkness, the darkness has not overcome it.” (John 1:5)

I have a God who hand picked a family for me, though I never would have guessed in a million years it would be in a small town in Wisconsin.

family photo

So that being said, I think I’ll be okay. In fact, I think I’ll be more than okay. I think I might even thrive in whatever life throws at me, even if it’s “worse” than what was just handed to me. I have a new faith — surprising even to me.

Maybe next I’ll write about all of the reasons I am NOT cut out for this….

like the fact that I am the messiest person I know (I think minimalism and organization is pretty key for the blind)…

or the fact that I can in fact see myself swearing harshly in frustration with each glass I might break because I don’t see it…

or the fact that I love looking at my husband’s face and even before I found out I have RP, I’d always take one last look at him before turning off my lamp at night…

And that even in the face of all of THOSE reasons, still I will trust and still I will pray every day for the strength needed to face a future of uncertainty.

Honestly, what other kind of future is there, anyway?

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Love, Lou (who walked through Whole Foods like this after my eye appointment because my eyes were so dilated, I literally could not take those sunglasses off, even inside.)


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When I Cannot See

I’ve been blind to many things in life.

I’ve been blind to true intentions when my own preconceived notions get in the way.

I’ve been blind to love when it was holding me.

I’ve been blind to God’s goodness when I could only see my own pain.

Now I’m having to ask myself: what will I do when I am actually blind? 

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I once wrote a poem in college called “Where I’m From” (you can read it here). It was an assignment and I felt like I did a pretty good job of describing myself, my life, my family. I ended this particular poem with this line:

I am from a family where blindness means seeing more than anyone else

Why did I write this? Why am I wondering what I will do when I am actually blind? Because a week ago, I found out I have an inherited genetic eye disease called Retinitis Pigmentosa.

You’ve probably never heard of it.

But given the fact that my great grandpa Bob, my grandmother Linda and my uncle Shannon all have this condition, I’ve known about it my whole life. On my dad’s side of the family we call it “RP” for short. We are all aware of etiquette for the blind. I grew up with a grandmother who had to scan my face to see me. I knew to be acutely aware when she was around (though she needs very little help).

RP typically starts with night blindness. It did for me. I haven’t been able to see in the dark since middle school. I’ve got the scars to prove it. I’ve walked straight into doors, I’ve tripped over large objects… sometimes my husband will hold his hand in front of my face after the lamp goes off just to test it, because I’m sure for someone with great vision it’s hard to comprehend the fact that I just cannot see it (the same “game” my twin sister and I played when we shared a room). Nope, still can’t see it! 

Though I had this issue, I never chalked it up to having Retinitis Pigmentosa. That was always safely tucked away in the corner of, I love my blind family members so much and they’ve taught me so much about life, with the caveat of, but thank GOD that isn’t me. 

It’s just my rods that are screwy, thank you very much. My cones are fine. (Did you know that your eyes are made up of rods and cones? Rods for adjusting to light, cones for seeing color, to put it VERY simply.)

Knowing what I know about this condition, blindness has always been my worst fear. I couldn’t even finish the book “Blindness” because I had too many nightmares. If someone in a movie loses their vision, I weep. It’s just something that has always touched me deeply: having family members with RP caused my heart to grow and compassion to be known at a young age  – but with it also grew fear. Because I know what it looks like. I’ve seen it (ironically.)

I know that I am facing a tough road. I know that I am likely to be legally blind by the time I am 40, or if I am very lucky, 50 years old. I know my peripheral vision will gently fade until I am left seeing through very little tunnel vision. This has left me in a state of bouncing between mild panic attack and also a trust in God like I have never experienced.

I’ve now been faced with my two greatest fears in life: infertility and blindness. 

Come at me – ’cause I’m pretty sure I’m now invincible.

Because here is something else I know: I know that my great grandpa Bob might be the happiest human being to have ever walked the earth. I know that my grandmother walks into a room with more light and beauty and grace than any women I’ve ever seen in my life. I know that my uncle has a gentleness to him that I always admired and wanted to lean into.

I know that I will survive this, even though it’s the scariest road I’ve had to imagine walking.

When I sat in the chair at the eye doctor, I was pretty sure I already knew. My vision has been changing and I’ve noticed it. I’ve mentioned it to my husband and my parents in the last year. I’ve missed things in my periphery. The best I can do is describe this sensation as a cloudiness that isn’t cloudy at all… it’s just missing. There are things missing from my vision and my brain is making up for the blind spots. Literally.

So I wasn’t super surprised when I all but failed the peripheral eye test at the doctor. But I did feel a punch to my gut and a rise in adrenaline when the doctor said, “Yes, Melinda, your suspicions were right. There are bone spicules and clumps of pigment in your eye. You definitely have RP.”

I probably sat in that chair for ten years, in the split second it took for me to understand her words. I appreciate her response as I teared up and tried to bravely say, “Okay.” She said, “I’m so sorry. I’ve never had to tell someone this before.”

Probably because only about .028% of the population has it.

Which makes my family pretty rare and pretty special, don’t you think?

Oh! And to top it all off, my dad also has this condition. That’s why I finally honored my suspicion and made the appointment with the eye doctor. He called two weeks ago to let us know that he, too, has RP. He has “late onset”, which is practically unheard of. We don’t know when he will lose his vision, but he was told “Bruce, if you live to be 100, you’ll definitely be blind.” Okay then! My outside-every-day adventurous dad who loves to hunt and be independent is going to lose his vision too.

Needless to say, it’s been one hell of an emotional week.

What will we do when we cannot see?

I’ve wept for my dad. I’ve wept for Bob, Linda and Shannon. I’ve wept for myself and the way I’m having to rethink my future.

I mean, this changes everything. It changes everything for my husband, too. We probably won’t be climbing all of the very highest peaks in the world or living out in the middle of nowhere together when we become “empty-nesters” in ten years. My husband, who I can barely keep up with in the grocery store, who went snow shoeing last night in what felt like -40 degree weather, will have to slow down and help me along. (oh, the guilt.)

But like I said before, the goodness here is not lost on me. I am just a little bit blind to it right now. The goodness of God’s glory is hidden in my periphery momentarily as I soak in this news and this life changing information.

Can I be a badass blind woman? I believe I can.

Will it be harder than I ever thought life could possibly be? Most likely.

Will I find joy in places and ways I never would have discovered without this condition? Most certainly.

Will I have to battle negative thoughts and fear daily, from this point forth? 100% yes.

My very own blind grandmother can still see just a little bit. She is typically the one to find the hummingbird hovering in a nearby tree. She is likely to notice that you got a haircut before anyone else. She takes her time to scan a room and then slowly walks through it. She is the first person to make you laugh. I could listen to her talk for hours because she is the best storyteller on the planet. She is beautiful.

bowl cuts, short stories, ficiton

 

And the day I found out I have RP, she TEXTED ME! (Technology is a friend to the legally blind!) This is what she said:

“I am so proud of you. So so proud. I have never been so shocked as when your dad told me he has RP except today when he called me and told me that you have it, too. I was speechless. I finally said, “and now we move forward.” And he said, “YES!” A big and strong yes. It’s what we need… strength! And by golly you showed me you’ve got it: that grit, that strength, that attitude, that faith, that can-do that has been handed down to us by our ancestors along with this RP. They had no choice over this RP thing but they DID have choices over how they would handle it. I give thanks for that. Thanks that my sons have it and that it has also been passed on to my precious granddaughter…. I love you, you have given me hope and strength. You’re made of the right stuff! You make me proud to be your grandmother! And Grandpa Bob would be even prouder of you than he was, period.” 

I was so blessed by her words. I was comforted that yes, I have grit and strength and attitude and faith that have been handed down to me through blood.

I will write more soon, once more has been processed. I will write about what it was like to tell my stepkids about this (and the hilarious innocence of the way an eight year old boy takes information in). I will likely share more about how this week has been pure survival. I will write how my husband is helping me to be strong in new ways that I never knew were even possible. I will tell you about how my priorities have changed overnight and how I’m seeing what truly matters. I will tell you how I now read the Bible, because every metaphor about God’s path and direction and sight and light is different to me now. I will tell you about how hard I’ve cried (even though you’ve probably already guessed it – a LOT). I will tell you more about how I’m really sort of made for this (yes, it’s true.)

But today, I’ll end this here.

And now we move forward. 

Love,

advice, staying true, writing, young adult, short stories

 

Lou (who thinks this is the cutest photo ever taken: my twin sister, Bob, and me)


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There’s Gonna Be a Darkness (and a thousand little funerals)

I’ve attended a thousand little funerals. It’s called infertility.

This month, I actually stood on the edge of the cemetery in town with my husband and cried tears that were the culmination of 29 years of hope, and then grief of the loss of that hope and dream. We’ve been the recipients of news that brings this kind of overwhelming devastation — I’ll let you use your imagination.

Actually, okay, I’ll tell you. (What a thing to talk about ALL THE TIME.) Sperm. I’ve been through a lot of different phases thinking about those little guys. I’ve been hopeful for sperm. I’ve been sad about sperm. I’ve been angry at sperm. I’ve been grieving over sperm. It’s the source of my emotions. It’s no small thing (although yes, it’s microscopic.)

I never wanted to know this much about them. Never wanted to see them through a microscope – I’m not even remotely into science or biology! I never wanted to experience what I’ve experienced in a doctor’s office.

I can’t explain why God has given me this path. I have three stepchildren. But now, my own biological children just doesn’t seem to be a possibility. God, I just can’t understand that. Feels like a cosmic joke. But then some days I can put the pieces together and see why, or at least begin to understand it.

I have almost no other way to explain this sort of loss: it feels like I’m grieving the death of my child. A child I never even got to hold, or see, or feel. I always imagined a little girl with wild hair that I scooped up into a ponytail, who would run toward me. I pictured little white tights (the kinds with Christmas trees on them, for the Christmas Eve service, of course). I have had vivid dreams of feeling this person in my arms. I have felt at times an overwhelming sense of this human being, so overwhelming that I felt sure of her existence – so sure that I was just waiting to meet her. So standing at that cemetery with my husband, wailing like a woman in the Bible, felt like a true funeral. I have half this person inside of me and she dies each month. All of my dreams die, too.

I never had many aspirations past: I want to be a mom. Not only that, but a mother of FIVE. Yup! You heard me. 

I held all of my hope and joy there.

Then when I became a stepmom to three, I had to change my dream: I have three kids now – guess I’ll only have to birth two of them! 

I could find hope and joy there. After a lot of hard work.

Soon my thoughts changed to: Okay, God, just give me one. One miracle baby, please. At this point, I’d take a monkey, as long as I could call it mine. So please. Haven’t I given up enough? 

And I could no longer find joy there.

So it’s no surprise: I haven’t been much of a joy. Day to day – yes, I laugh and I am friendly and I love being with my friends and I find much love and happiness in being surrounded by my stepkids and my husband and now our dog, Adak. I have a beautiful home and security. I am blessed beyond measure.

But I never had a child, and there is a good chance I never will.

The winter solstice this year, and this new reality, are just a few reasons why Gonna Be A Darkness by the Jayhawks has become my current anthem. I can’t stop listening to it.

This is a song about a funeral.

There’s gonna be roses and your picture in a frame
The women will be cryin’ and the men they will whisper your name
Umbrellas will be open on a hillside of graves
The children will be dressed up and chase each other in the rain

And there’s gonna be a darkness
It may be colder than you guessed
There may not be music, there may not be stairs
There may not be angels fillin’ the air
Your mother may be there
Your father may be there
There may not be voices sent from a throne
To carry you home

Now Heaven may not get you: the Devil may see you first
He’s hittin’ himself in both the beast and the birth
A stranger may have found you where the angels have lulled you to sleep
They swallow you whole like a whale from your head to your feet

And there’s gonna be a darkness
It may be colder than you guessed
There may not be music, there may not be stairs
There may not be angels fillin’ the air
Your mother may be there
Your father may be there
There may not be voices sent from a throne
To carry you home

Where you think there’s a place
Wide open and white
Where you think you’ll be safe
Where you think there’s a light

There’s gonna be a darkness
May be colder than you guessed
There may not be music, there may not be stairs
There may not be angels fillin’ the air
Your mother may be there
Your father may be there
There may not be voices sent from a throne
To carry you home

There may not be music, there may not be stairs
There may not be angels fillin’ the air
Your mother may be there
Your father may be there
There may not be voices sent from a throne
To carry you home

There’s gonna be roses and your picture in a frame
The women will be cryin’ and the men they will whisper your name

For all you out there totally worried about this song and the implication that there is no heaven: just remember, songs are made to be interpreted and to become your own.

For me, this song is about the life that never was. I am the mother. This is my funeral song – my infertility song. There may not be any of those things. But I have cried, I have whispered the name. This song is about the light and life and heaven I thought I’d experience with a child, and how there may not ever be a chance for that.

I follow this Instagram page called “Infertile Board.” Every once in a while I see a post in my feed and it actually makes me laugh. Things like “I’m just a girl sitting in front of a doctor asking him to impregnate me” or “‘This month flew by’ said no infert ever” or “Nothing will bring on a period faster than a pregnancy test.”

I’m now someone who can relate to all of these! My GOODNESS. I still can’t believe that. But I am thankful for the humor. I am thankful for the humor SO much.

The latest one said “Awesome, even Mary wasn’t trying.”

This one didn’t make me laugh – this one was like a reality check. I don’t think the maker of this IG page did anything wrong… but I didn’t think, “Yup, that’s right! Even she got to have a baby! Sheesh!”

No, not at all.

What I thought was: That is completely different. That was the biggest miracle of the entire universe and it is the reason I am going to be okay. Christmas might be about a miraculous conception and birth, but that has never ever been the source of my pain. Ever. (All of the other “miraculous” conceptions, heck yes.)

And here is another truth: the first half of my month was filled with thoughts that I’ve just mentioned. Death, funerals, the pain of grieving the loss of my child, my little girl (I always imagined a girl), sadness and anger in wondering, “why me?”, especially given my circumstance as a stepmother. The first half of this month I lost a bunch of weight, didn’t eat, and cried myself to sleep every night. I felt like a zombie.

Then, God spoke to me directly. And He worked through my friends and family, too.

I started to see something else. I started to see my husband – a man who deserves to be loved UNCONDITIONALLY. I heard God saying, “Don’t you know that I gave you this treasure? Israel is a gift. Love him, Melinda. Love him unconditionally. Find joy in your soul. Be with him. Love him like I love you both.” 

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I had to confess that my dear husband hasn’t seen the best of me. We’ve had a lot of horrific things thrown at us in our first 3 years. More than most. And we’ve had a LOT of fun. But I’ve never just relaxed, lived day to day, and found joy in the most important thing God gave me, which is my marriage.

I also started to see the love of my friends. Friendship is something I hold high. I love my friends. I know I am blessed beyond belief with the friends God has given me. They are wonderful. They are a huge reason I’m here and doing okay. And they showed up for me this month. They texted me, called me, invited me over, held me, checked in on me again, prayed for me, laughed with me, cried with me, and loved me for me : a Melinda who was in the darkness.

Family, too. I talked to my mom almost daily. I connected with my sisters and my incredible God given sisters-in-law. I felt support at every angle, holding me up when I was going to disappear.

I know it was that moment of God talking to me AND the prayers of my friends and family members that gave me the strength I’m feeling today. In the past week or so, I’ve found a new part of my soul. I’ve prayed almost non stop. I felt calm. I heard God saying to me again, “Love this man. Go ahead… you can do this. You need to do this. And I’ve got you.” 

My husband even mused one night in the last few days that he’s never seen me like this. Like what? Like… happy.

Talk about a wake up call.

And you know what else? I’ve had to do some digging. Jody Day’s book “Living the Life Unexpected: 12 Weeks to Your Plan B for a Meaningful and Fulfilling Future Without Children” helped with this big time. What are my other goals, other than just being a mom? I have a few. I am passionate about the environment, about women, about helping people (especially those going through divorce and stepmotherhood).

I realized for the first time that the time will pass either way. I can either be a miserable woman, defining herself with infertility, and crying at the drop of a hat, unable to attend baby showers or smile at the announcement of a pregnancy, withering away inside and holding onto anger. OR I can find delight in my life, love for my husband and stepkids, thankfulness for the beauty I see every day, true joy for my friends who have their own babies, and compassion for those same people, because they, too, have sorrows.

I can live a life like this. And just like in my OTHER favorite song, “Farther Along” by Josh Garrels, I can remember…

“Farther along we’ll know all about it/ Farther along we’ll understand why/ So cheer up my brothers/ Live in the sunshine/ We’ll understand this, all by and by”

One day I will be in heaven and I will understand all of this. In the meantime, I can find joy and thankfulness. God is with me, He is fighting my battles for me and He has not let me suffer. In fact, I look around, and I have won every battle. And when I say “I”, I mean the guardian angels I KNOW I have on extra duty most days.

So this Christmas Eve I am thankful for the fact that another woman was pregnant and wasn’t even trying…. I am thankful that God gave Mary such a task. I am so thankful and find another place of grief in my hart — that bleeds into thankfulness — that Mary’s son died an excruciating death for me. Christmas is about a birth, and Jesus’s birth is about sacrifice.

So there is always darkness, but even on the darkest days, it’s quite clear that things will get brighter. It doesn’t mean things will be easy, but the time will pass and only I can decide which Melinda to be.

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And as always…. it doesn’t hurt to throw on some sunglasses and feel a little badass, too.

Love,

Lou (who is glad December is almost over – because I am excited to see what the next month brings)