June 3

Unthinkable that we’ve weathered four June 3rds, that Nora has been gone for TWICE as long as she was here with us. Time has unapologetically ticked on without her. A substantial part of me is still stuck in 2014, refusing to adhere to any clocks or calendars. The rest of me has no choice.

Every year it’s a struggle, for obvious reasons — we MISS her. It’s painful to remember those last days and hours we had with Nora. It’s also a struggle trying to find the “perfect way” to honor Nora’s last day with us. We’re not big planners or organizers. Something big and public is completely overwhelming, yet something low key seems inadequate. What do we do?!

And then as if God had already pre-arranged everything, beautiful opportunities have presented themselves to us on our sacred June 3rd. Our first June 3rd, it was a ceremony at Xavier University to honor and remember organ donors. (Nora was a cartilage and tissue donor). This year, for the third year in a row, we were invited to Camp Lionheart through Starshine of Cincinnati Children’s Hospital. It is specifically for families who have experienced the loss of a child/sibling. It always falls in June, often on June 3rd.

So here we are in community with a dear collection of families who are also forced on through time without their sweet children. There’s no need to try and explain the weight of the sorrow that we carry around with us every single day. It’s not strange or awkward to bring up our children and talk about them with one another. We have met some fascinating people here all with their own unique stories and experiences, but with whom we share this common bond.

We all sleep in cabins scattered throughout the camp. Creaky bunk beds, rudimentary showers, and the basic necessities. We gather together in the dining hall for our meals, and then there are organized activities throughout the day — swimming, zip lining, hiking, arts and crafts, fire pits and camp songs that are led by the animated camp leaders. It is truly the awesome “camp experience” in every sense of the word! All this — just handed to us on THIS particular weekend as a soothing balm to our wounded hearts. We’re so very, very thankful for Starshine / Cincinnati Children’s Hospital and all that they do to nurture families like ours who have endured the unimaginable.

Here are some photos from the weekend:

William & Greta

Norns Doll on a hike

Greta & I building a rock tower

Our dear friends the Reimers and the Lundstroms

We also paid a visit to the cemetery this evening:

Little sweat bee 💗🐝

And now these three remain: faith, hope and love. But the greatest of these is love. (1 Corinthians 13:13)

May 18

Today started out with the typical routine of getting the kids up, ready and driven to school. I went about my day, oblivious to its significance until I opened up Timehop. It was as if I had been mindlessly jogging along when suddenly I was clothes-lined at the neck, knocked down, choked. Nora is always, always so close in thought, but I hate to think of her in the place that she was 4 years ago today.

Today is the day that we casually strolled in to the ER at Children’s expecting for Nora to get some IV fluids and then we’d be on our way back home. In the terrible, awful blink of an eye, the true gravity of the situation was revealed.  One minute we were checking in at the desk, the next we were in the shock and trauma bay. I kept getting glimpses of her sweet skin through the mob of doctors and nurses surrounding her. A very controlled and professional dire urgency assumed the room, but for me standing in the corner about to lose my mind, being literally held up by my husband. I always knew back in that dusty corner of my mind that our time with Nora was limited, but I never dreamt it would end like this. And then it didn’t end. She was stabilized. She survived the surgery to correct her stomach that had somehow flipped and cinched off the blood supply. Gastric Volvulous, as it was medically termed. And all the while, where the FUCK was my maternal instinct warning that something was terribly wrong?? How could I have let her go through the night like that?? I was (still often am) tortured with guilt. “There’s no way you could have known,” the doctor with the soothing voice explained, “This type of thing is such a fluke, especially in children. This is something that usually happens to little old ladies.” Little old ladies, huh? This sweet baby girl with such knowing wisdom in her eyes, well beyond her years. This baby who didn’t care much for cartoons or baby shows, but who loved to watch Matlock and Texas Walker Ranger with her afghan across her knees. This Lady Baby with the old soul.  Her stomach flipped. Yeah, okay, God.

May 18, 2014 was the beginning of the end. It wasn’t Nora’s heart or her lungs that we kept such special watch on. It was something that was completely under our radar, and I suspect that God planned it that way. While I was pregnant with her, we prayed, begged and pleaded to be able to have just SOME time with her, “Even if it’s just a couple of hours, God!” Instead we were lavished with 18,633 hours, exceedingly more than we had asked for.

“I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11 NIV)

Birthday 6

My heart is heavy as Nora’s birthday approaches. It’s so hard to imagine what she would be like as a 6-year-old. I last knew her, held her and loved her as a chunky little 2-year-old. Instead of putting together a collection of little girl party favors and wrapping up special presents for her, I am on a beautiful walk by myself here in Georgetown, Texas. We are all down here for the Big Kids’ Spring Break. Gavin & Greta are off having fun with their cousins while I grab a moment of solitude on this gorgeous day. From a seemingly endless winter back home, this WARM, picturesque walk along the San Gabriel River is a gift.

Yet, each step takes me further and further down the path I’ve been on since she left us. The magnitude of the grief has never really gone away. I’ve just adjusted to the massiveness of it. I am somehow strengthened by it whether I want to be or not. I have no choice. It is a part of me.

The perfect imprint of a leaf in an aged slab of concrete catches my eye.

How very like Nora. She too has been gone for many seasons, yet she left such a lasting impression on this world — in ways I never could have imagined. Perhaps it was the softening of our hearts, or her adorable illustration of how important EVERY life is. Or maybe it was just her sweet, sweet disposition, endearing her to everyone who set eyes on her. I love the quote: “Tis better to have loved and lost than never to have loved at all.” Evidence of her love lingers here with me. Maybe I read too much into these things, but I like to think they’re little glimpses of heaven; reminders that each day is a step closer ~

Three ducks suddenly paddle up alongside me, swimming with me as I walk.

Reminiscent of the print of those three ducks featured in the hallway of Children’s Hospital after we held her for the very last time.

and the hearts are such physical reminders of the abundance of love that once was, still is and will always be. Only love remains.

The brief lives of the beautiful, fragrant wildflowers ~

We’re back home in the cold now, but so thankful for the brief respite in the company of our sweet family. Thank you Jill & Chris for a wonderful visit and for all the delicious meals you lavished us with! We arrived home late last night, walking off the plane and up the jetway as the clock rolled over to midnight, April 17, 2018.

Aerial view of Cincinnati

How have all these years passed?! It was incredibly hard waking up this morning, not only because I had gone to bed just 4 hours earlier, but because it was all still so fresh in my mind. The alarm sounded this morning to get the kids up and out of bed, ready for school. Six years ago that same alarm went off to get us off to the hospital in time for my scheduled induction. There were two very intense outcomes before me that morning six years ago. I had no idea which one, but I had to get out of bed anyway, because time never stops for anyone. The strong sense peace was completely unnatural and I marveled at it almost laughingly. After about 10 or so hours of uneventful labor, the sweetest cry that I ever did hear filled the room. She was alive!!! And then she was on my chest gazing up at me with the most lovely blue eyes. We imagine that Nora was saying (in her voice), “Ummm. Scuze me… um… are you my mom n dyad? My names Nora.”

Ohhh for heaven’s sake, I was completely smitten with her!!!!! She got “smashed” with kisses.

There were some very frightening moments immediately after that, but her sweet little body finally figured out this new world she was in. She was stable and we got to bring her home a couple days later. It was the very beginning of two extraordinary years!

Happy birthday, my sweet baby. I hope you are having the grandest of parties in heaven – maybe a bubbly hot tub party with all of your chubby baby friends. I wish I was there to squeeze you in your “babing suit”!

You won’t have to ask because they’ll already know how you like to hear your favorite song sung multiple times. We’ll be down here celebrating you and the day that you fluttered down into this world leaving your mark on all who knew you and read about you. Happy birthday, sweet baby Norns. I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.

Scenes from today:

Butterfly Effect

I set off on a solo kayak excursion Friday afternoon, on a quest for some pretty rocks at the tip of Government Island. However, the water from the big lake was aggressive and volatile.  Billowing swells and white caps warned me not to go any further with my lack of experience. I paddled back along the edge of Government’s shore back to kinder waters.

A sandy section of beach beckoned me in for a rest. Once on shore I breathed in the beautiful sunlit pine, and gazed in awe at a cluster of wild daisies set against the backdrop of crystal blue water.

I stood there attempting to capture it in photos, hopeful that maybe just one shot would do it justice. As I glanced down at my feet in the sand, a fleck of orange caught my eye. Clinging to a pine sapling, dangerously close to the lapping waves was a beautiful monarch butterfly. I moved slowly closer and discovered that his upper right wing was badly torn and tangled under his lower wing, rendering him flightless. To have once soared the crisp blue skies, there he sat awaiting certain death.

I carefully removed him from the tiny branch, as he flapped his broken wings in vain. I placed him in a sturdy pine tree on higher ground. It was all I could do… (?) Or was it? A quick consult with Google revealed a complicated, but feasible solution. There was hope! I poured out the rest of my coffee, gave my trusty Yeti a quick rinse in the lake and dried it out with my bathing suit coverup. It served as the perfect transport carrier for the butterfly as I paddled full force against the wind back to the cottage. I made it back in about 20 minutes. The beautiful monarch “chilled out” in the fridge for 10 minutes while I ran off to the store to acquire toothpicks, super glue and baby powder. The cooler temperature and the darkness lowers their metabolism and puts them in a restive state. I was nervous and skeptical. This was my first surgery without any training whatsoever. All I had to go by were the detailed instructions typed out on livemonarch.com. But I had to at least TRY!! Gavin & Greta offered their assistance in the laundry room that we had converted into the Butterfly OR. Towel and surgical tools set out on the ironing board, we were ready for the patient.

Greta held the procedural restraints in place (tweezers) while Gavin was in charge of the surgical lamp (my phone flashlight). Ever so extremely carefully I positioned the veins of the wing parts together and adhered them with dabs of super glue on toothpicks. I held them in place at length, careful not to involve any other of the wings with the glue. The 5 second dry time as promised on the glue packaging was much to be desired. 🙄 After the glue had finally set at the crucial points, I set about repairing the small hole that remained in the middle of the wing. Livemonarch.com suggested using a small bit of sturdy paper. I cut out a small spot of very lightweight cardboard and glued it beneath the wing, successfully patching the hole. After it had all dried, I did as instructed and coated the fracture lines with a light dusting of baby powder using a Q-tip. At long last we were ready to bring the patient back outside.<
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e offered him a napkin soaked in sugar water while he flexed his patched up wing in the  sunlight. I had resigned myself to having done the very best I could. I wasn’t hanging too much hope that this poor butterfly would successfully fly away, but he DID!!! A quick flutter of his wings, and he lifted up into the air and settled up into a nearby cedar.

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e sat there for a couple of hours perhaps wondering what the heck had just happened, wondering how he was suddenly able to fly again. And then of course the moment I wasn’t looking, he flew off into the sky for good. I’m so thankful that I found him and that information was available to fix him. #butterflyeffect #thelittlethings

North

I’m sitting here wrapped up in a warm fuzzy blanket all by myself with a fancy Sam Adams Rebel Grapefruit IPA that someone left in the fridge, listening to Boston and looking out at the freezing cold channeled waters of Lake Huron.

It was a beautiful warm day, but it is starting to get chilly again as the sun gets lower in the sky. I’ve been up here in the Les Cheneaux Islands of the Upper Peninsula, Michigan since Monday evening after an 8 and a half hour drive. I have come up here to start writing my book that perhaps, maybe, might get published someday. The rest of my family has taken this opportunity to go visit William’s family down in Texas. This is the longest and the furthest I’ve been away from my husband and children since I’ve been married. While I certainly love and appreciate my introvert’s heavenly solitude when I can get it, it’s been quiet and even just a little bit lonely at times. This place is usually so bustling with activity and laughter when I’m here. It was strange at first to adjust to the quietness! I’m excited to see my hubzbind and my kids next week and I hope they’re all having fun without me! It turns out that ten days is a long time!

I’ve had very productive days of writing and being active. It’s so easy to go for 5 mile walks when there is just endless beauty to look at. The mostly flat terrain and cooler climate is also a huge bonus! It has been bittersweet to reminisce about the walks we had gone on with Nora along much of the same route. A lump welled up in my throat as I approached the intersection I had been at with Nora when an elderly couple approached the stop sign in their car.

They smiled so big and craned to look into the stroller at the sweet sleeping baby. There was no pity in their eyes at the sight of the portable oxygen tank dangling from her stroller. In that moment I was just simply a mom on a walk with her baby. That scene did not contain any extra 18th chromosome, no anxiety, no prognises, and no grim statistics. For just in that moment, everything was perfect. I remember tearing up, and stopping to kiss Nora as the sound of their tires crackled along the gravel in the distance, taking that moment with them.

I’ve gone on walks, I’ve gone on bike rides on my sweet Oma’s old bike, and I’ve taken the kayak out a couple of times, Norns Doll always with me.

Yes, I’m that weird lady seen around with the doll peeking out of the back of her drawstring pack pack. I don’t even care.

On Wednesday, my birthday, I kayaked from Island 8 over to Government Island. There are no houses on Government, just a collection of trails and more serene beauty. Once I was on the island I had it in my mind that I wanted to cut across to the other side instead of going the way that I was used to.  I started off on what appeared to be a trail, but it gradually faded. Fortunately I had worn my creek boots. The next thing I knew, I was sloshing through mossy marshes, climbing over fallen trees, literally squeezing in between pine trees, trying to untangle my hair from their branches, wiping spider webs off my face and getting scratched to hell and back. “This is not fun anymore,” I commented to the curious little chickadee in the tree.

Imagine this ALL around, except even worse. I didn’t get pictures of the bad parts!

I started to get a little bit nervous and eventually got my phone out. I had been tracking my hike predicament on Map My Run and I was none too happy to see the big red trail making a horseshoe shape. I was basically heading in a circle, and not the straight line I had imagined. It felt like I was turning around to go back the way I came when I set myself back in the direction I was supposed to be heading. I hadn’t realized how easy it was to get disoriented in that type of environment, but yeah! Isn’t this just like life, I thought to myself, specifically our time with Nora. We received her diagnosis and from that point on, we lost the trail. We thought we were heading in one direction, only to get thrown completely off. There were moments of panic as we tried to regain our bearings. There were times of struggle, terrible discomfort and fatigue as we unknowingly walked in circles. We tripped and we fell several times along the way, but we would get back up, dust ourselves off and continue on. We greatly appreciated the clearings when they popped up, but just as soon as we grew comfortable with the lack of obstacles – there we were again trying to snap branches out of the way, sustaining more scratches and bruises. We got to spend so much time in the lush and beautiful meadow — much longer than anyone ever would have guessed. But then we were thrust back into the tangle of forest again. It was interesting that even in the scary, painful parts — if we would just stand still for a second and stop fighting our way, there was still beauty. There were beautiful carpets of moss, sprouts of wildflowers never before seen by anyone else, tiny pine saplings bursting forth from the lush soil, and the skittish little birds that warbled up in the high branches. We missed all of that when we were so focused on getting to the other side.

Eventually I could hear the sound of the water and saw the sparkle of sunlight dancing off of it through the trees. A few more hurdles, leaps and scratches, I was finally there. Hot, sweaty, bedraggled, with twigs in my crazy hair and covered in cobwebs, but I was there!!


I stood there for a moment and looked out at the expanse of the Great Lake, Huron. It was beautiful and the breeze felt so good, waves lapping at the shore.

AAAAAhhhh!!!! I rested for a moment before continuing on along the southern shore of the island. I was familiar with the rest of the way, but took careful steps over the rocky terrain so as not to twist my ankle. No Service popped up at the top of my phone — not that there was anyone close by to come and rescue me, but I could have at least updated my Facebook status about it and my friends could have felt sorry for me! (LOL) The rest of my hike was uneventful. I stopped to absorb the beauty from to time along the way back to my kayak.


There is this really cool tree that has this crazy curved branch that just begs to be sat on. I couldn’t resist and set the timer on my camera. Hurry!! 10 seconds to jump up there in big clumsy boots… and GO!

I literally went out on a limb for my birthday!

It’s funny to look at that tree. If someone were to draw a picture of it, you would look at the drawing and think, “Well that’s not right. Tree branches don’t look like that.” But here is proof that they can and do!

Since it was my birthday, I accepted the invitation to have dinner with my Uncle Roger and Aunt Mary Ann, and Pat and Terry L. later that evening. They were also up here at their beautiful places for a visit. I had joked that I was just going to be by myself on my birthday blowing out a candle on my sad sandwich that I would then eat aaaalllll alone. LOL. That seriously would not have bothered me, but it was actually very nice to be in their company. We had delicious homemade pizza and salad, and then (“eenen“) they sang Nora’s favorite song to me with a fabulous chocolate cake! It was the perfect ending for my birthday — a day that can’t help but be tinged with sorrow, as it is also the anniversary of Nora’s funeral. However, I got some incredible happy birthday wishes from heaven throughout the day, and a gorgeous sunset on the drive home.

Zoom in closely to see the 3 birds! I followed their path of flight and discovered the rainbow that had been placed in the sky behind me!

Thursday I finally got into the groove of writing. I had been writing lots, but nothing flowed. I found that my words streamed so much more smoothly from my pen than they did from the keyboard. I had even tried writing on my Grandmother’s old manual typewriter that I had brought up here.

After about 7 lines and yanks of the return carriage, I had to give up. Oh. My. Goodness, how spoiled we are with our neat, smooth-stroke, ergonomically designed computer keyboards and ability to backstroke, edit and revise on our word processing programs that will even correct our grammar and spelling without so much as a second thought!!!! My pitiful, weak finger muscles could NOT HANG, especially my poor scrawny little pinkies who were expected to exert about 10 lbs of force with each shift stroke. And we don’t have to growl at any ink ribbons that keep dislodging every time we hit the shift key. We are seriously, seriously so spoiled with this!!! So yeah, that did not work so well, but my pen and notebook have been great and are easy to travel / kayak with. The typewriter will just be here as nostalgic ambiance.

Today I kayaked over to my Uncle Greg and Aunt Paula’s house over on the mainland. They weren’t there, but I figured they wouldn’t mind if I parked my kayak there for a bit.

From there I walked down to Fox Lane where the cottage that once belonged to my Great-Grandma Bohmer sits. I had planned on just peeking by for a quick visit to reminisce. But there was no one there, and the urge to sit down at the familiar old picnic table was too much to resist! I hope no one minds! I opened up the digital albums I had archived on Google Drive and scanned through all of the old photos that were taken in that very place.

Many of them dated all the way back to 1951 which is when Grandma Bohmer purchased the cottage. I was astounded by how much was still the same — a treasured time capsule of not only my own childhood, but also of my Mom’s and her brother’s childhoods. There were pictures of us as babies through different eras on that very porch where I currently sat all these years later in 2017.

And then I came along, hungry for hotdogs! ~

I gasped with wide-eyed wonder to discover the picture of Uncle Joe & Aunt Nora, my Grandma Bohmer’s older sister sitting in the very spot that I had sat as a little girl and was now sitting today at that very moment.

I took some current day pictures for comparison and then sat there with my pen and my notebook and wrote for 3 hours. Writing came so easy. I imagined that all of these old souls were still sitting around this table, sharing this beautiful moment in time with me as if though they’d never left at all, infinitely connected by our strands of DNA across all time and dimensions.

I mean, even the chairs on the left are positioned the same exact way!! I did not pose them!

June 3

Over these past couple of weeks I took on the daunting task of organizing Nora’s closet. After she had died we placed everything organized as best as we could in the closet of the room that was supposed to have been her bedroom, but never was. Putting her things away was in no way an attempt to get her out of our minds. It was all just too painful to look at. It was as if a deep gouge had been scratched into a record, interrupting the beautiful song that had been playing. Terrible static ensued and then those last few notes kept playing over and over and over and over again. All of Nora’s things sat dutifully in place ready to be of service, waiting for the song to continue just as it always had. And now it was abruptly over. My way of turning off the record player was to put most of everything away. The heavy pall of silence that fell over our home was of no solace either. It was a stark reminder of all that was lost.

I was taking on the task of the closet not to get rid of anything, but to make some semblance of it. I had gone in there so many times trying to find something and accomplished nothing other than making an even bigger mess of her things and of my emotions. I had prepared myself for much of what was behind those sliding white doors – her toys, her books, some of her clothes, burp rags, blankets, wash clothes, hooded little towels, her Bumbo and her beloved nest. I took it all out of the closet piece by piece. Then there were the things I had forgotten about or didn’t expect to see. These were the things that just completely annihilated me. A dried pack of wipies with one wipe standing at attention, ready for duty (“doody”), and then the boogie sucker with her boogies still in it. No one ever imagines that they’d be standing there weeping bitterly over dried snot, but there I was — my lungs constricting in lengthy jagged bursts, tears streaming down my red cheeks. The spot of blood on an IV bandaid. HER blood. The pink teddy bear that played a recording of her fetal heartbeat. These are all just THINGS, I reminded myself. Myself snapped back, “All JUST things?? All of these stupid, insignificant things?? How is it that they are all still here and she is not? How is it that the f#$%ing batteries in her toys and her birthday cards are still alive and singing, while the most important ‘thing’ is dead? These THINGS are ALL that we have left tangible.” I continued to weep. I took breaks from time to time, to go outside and gaze up at the sky, or to pound my fists into the carpet in a rage of tears. I appreciated the day of thunderstorms. It was comforting to have the weather match my own tumultuous climate. I organized it all, put it in labeled bins and boxes. The padded and ribboned box from the hospital that contained the rose that I had brought from home. Although now dried up, it had looked so pretty behind her ear for that moment in time…


And then the last pair of pajamas she ever wore with the emergent cut down the middle. There had been no time to even remove her pajamas that horrible day in May. The box of mementos from her birth – the tag from her bassinet “NORA”, our hospital bracelets. I marveled at how tiny her little wrist once was as I slipped her bracelet over my thumb.

I smiled as I thought about the fat rotund little wrists that she had when she left us. She has come such a long way. I even saved her first teeny tiny nail clippings, taped to a piece of dark paper. I saved those, but I couldn’t save HER.
After I had neatly labeled everything and put it all back into the closet, I went through the boxes and boxes of cards, notes and letters that we had collected since January of 2012. I saved and treasure each and every one of them. I sorted them out in categories: pregnancy, birth congratulations, holidays and birthdays, and then the cards of condolences. I sat in tearful awe over all of the lives Nora had touched before she was even born and continues to do so now 3 years after her death. If I could stack them all up, I would have about 2 feet of cards. I cried tears of gratitude over the drawings from kids and read through each and every card and letter. Nora had captured the hearts of so many people, young and old. It didn’t matter whether you had met her here in person or if you only knew her through pictures. You cheered us on, encouraged us, prayed for us, and then in the end you helped carry this debilitating burden of grief. Nora wasn’t just MY Lady Baby. She belonged to all of us, bringing with her a message of faith, hope and unconditional love, pointing us all toward heaven. She was everybody’s sweetheart.

I think about and remember my sweet Lady Baby every single moment of every single day, but today is especially painful as I remember how we had to say goodbye to her during the fresh early morning hours of this day. I give so much thanks for the precious gift that we all were given. Sweet Nora, what a privilege to know and love you.

On Monday I leave for the Upper Peninsula of Michigan. I’ll be there for 10 days all by myself (!!!! #introvertdreamcometrue) with my laptop, my pens, notebooks, sketch pads, my paints, my Grandmother’s typewriter and a great big story to write. The book. I’m going to try to be “off the grid” as much as possible with maybe some updates on Instagram (@aleisaak). Thank you all for being a part of this epic journey along with us. Thank you for all of your texts, phone calls, messages, posts and comments throughout the day today. You made my heart smile.

Moon Bath

The thrust of warm water hisses through the pipes. My chilled skin welcomes the initial sting as its warmth surrounds me. I lean back on the bath pillow, clasping my broken heart, pretending for just a moment that you’re still here. I Imagine that someone is about to bring me your fat naked little body. That at any moment you’ll be immersed with me, an excited smile on your face. Weightless, warm, cherished and loved, I’d stroke water through your fuzzy hair, kiss your cheeks, squeeze your naked baby bum and sing to you how much I love you. The water continues to splash out from the faucet, coalescing with my tears. Only your faded mermaid sticker smiles back at me. Your bath towel and the precious imprint of where your sweet head used to lie. No kicky, squealing baby to place on it, covered in 1,070 days’ worth of dust. The moon and Jupiter peek in through a gap in the curtain — reflecting the sun’s light over great expanse to this little spot in the world where I used to hold you and love you. The bath is lonely and sad without you, but just like the sun, no time and no distance can diminish the intensity of my love for you.