Friday, December 23, 2016

Merry Christmas, Mr. Friend...

A few days ago, I had the most extraordinary visit with my dear neighbor, Mr. Friend. I don't know if he thought it was extraordinary. But it knocked me right out of the ordinary, and I haven't stopped thinking about it since.

It was my first visit to see Mr. Friend since his older brother, age 96, passed away after a long illness with a lot of suffering. Now, our Mr. Friend is the last surviving sibling of a group of ten. His siblings were very close growing up and throughout their lives. He seems to be handling this well, but I told him that it makes me think of my own group of eleven kids. One of the things they love about being in a big family is the idea that they will never have to be alone in life unless they want to be. There will always be someone to call, to help, to live with, to rely on in an emergency. Really thinking it through to the time that one of our children might be 93-years-old and all alone out of all our immediate family made me get all teary, and made him get all teary, and then we shared a hug and cried a little more before wiping our eyes, smiling, and going on to a more cheerful subject... Christmas!

Me: "So, are you going to be going out anywhere on Christmas?"
Mr. Friend: "Well... I certainly hope not! My niece wants me to go with her to her family. But, driving all that way south of the cities on bad roads and in snow storms...  they keep bugging me about it and think it would be good for me!"
Me, smiling: "That's because we all love you. Everyone wants you to come over."
Mr. Friend: "Yes, well. But, Christmas is just for kids anyway. All that...'what gift for him'... 'what gift for her'...  even for the adults! All that money! And parents telling lies all the time to make their kids behave... it's just not right. All that Santa stuff, I mean. "
Me, laughing: "Well, OK. I'll just call you Scrooge and NOT tell you we were hoping you might come over for dinner the day after Christmas, that's when we are doing our dinner. It was OK at Thanksgiving, wasn't it?"
Mr. Friend, laughing: "Well, I guess that's ok. It was good to catch up. But, I don't like going out any more in the bad weather."

(We sat quietly together for a little bit.)

Mr. Friend, talking again: "What I don't understand is why we give presents at Christmas to our own families and make a big fuss. They didn't have anything like Christmas at all when Jesus was alive or his disciples either. Someone told me that. Is there something in the Bible about people giving presents to Jesus? I thought I remembered that and that would be ok, to give presents to Jesus."

Me, surprised: "Well, yes! Don't you know that part? I'm not sure that's why we give gifts to each other, but yes...  Wise men from the East... traveling far...following the star... bringing gifts of gold, frankincense, and myrrh to the new baby King. The great King of the Jews they knew had been born because they saw his star when it rose in the East?

(Me thinking to myself, wow... how DID they know so much about that, believe it enough to travel to Israel?? They saw a star and knew a King had been born in Israel??)

Mr. Friend: "Yes, I think I remember something about that, but I didn't know if that was a real part or part of the made-up part of the story. You know how people are always making stories bigger and bigger, and I know they make up parts on the TV when they show it on TV. Do you think any of that really happened? Or do you think people just made it up."
Me: "I do! I think it is the Truest Story that's ever been told! I really do. I mean that with all my heart... I think the parts that are in the Bible are the real story."

We talked a little bit on a historical level about there being no doubt that Jesus was a real person, and that we know when he lived, and that it's supported not only from inside the Bible, but from other known history as well. He guessed that was right. He believes the Bible, he just thinks a lot of people mess up what is in the Bible and what isn't – an opinion I certainly share.

Mr. Friend; "Well, Ok, then. What part of the Christmas story is in the Bible then?"

And so, hardly believing it could be true that this 93-year-old Swedish farmer didn't really know the Christmas story, I tried to organize my thoughts so I could tell this True Story in the right way, even if I did have to tell it from memory and figure out where to begin.

I told him about part of the story being in the Gospel of Luke. And part of the story being in the Gospel of Matthew. And an important thing about this True Story is that it doesn't start Once Upon a Time like a fairy tale. It starts at a very specific time, with real Emperors and real Kings and other known people mentioned in written histories and old documents. And both Luke and Matthew tell us a lot about Jesus's family... his family goes back to King David (have you heard of King David? Sort of? Ok)... and even back further to Abraham, and Noah, and Adam. It even lists some of the mothers in the genealogy, which is unusual. The genealogies tell us that the human family of Jesus was very real, he has a real history and he came to us here in a real place and a real time. And it's a time in history you can figure out because of Roman history and how good they were at keeping records.

Me: "Is this all making sense?"

Mr. Friend shrugs, but sits up close to listen and makes a "go on" motion with his hand.

"Ok. Well, that's one reason Jesus ended up in Bethlehem anyway, because the Romans were taking a census and were making people travel all over the place to make sure they got counted properly. Mary and Joseph travelled to Bethlehem together, because of the census. Well, wait.. I don't think Mary really had to be there, Joseph had to go back to his original hometown. But maybe Joseph didn't want to leave her at home, or maybe she didn't want to be left at home... you know, because of the scandal of her being pregnant before they were married. But really, she did have to be there... because of the prophecies about where the Messiah was going to be born. They weren't thinking about the prophesies, it's just that there really are dozens, maybe hundreds of prophesies about Jesus in the old testament and some of the interesting things about the Christmas story happened just the way the prophesies said it would happen. Some of the prophesies are mentioned specifically in the Gospels when they are telling this story."

Mr. Friend, very interested: "Well. I wondered how he ended up in such an out of the way place!"

Me, trying again to organize my thoughts: "Right. So right when he was born, in Bethlehem... angels, a lot of angels, appeared to some shepherds who were nearby in some fields with their sheep, at night time. And the angel of the Lord told them the good news about the baby's birth, a Savior who is Christ the Lord, and they told the shepherds to go and find the baby lying in a manger - and they went to find him right away and did find him - just like the angels had said... they found Mary and Joseph and a baby lying in a manger. This is the part you always see in Nativity scenes."

He nods. I still can't believe he doesn't already know this story by heart. I'm wondering what I'm leaving out.

Me:"Ok, so the part you are asking about is actually in the other book, in Matthew's book. He tells the story about wise men who see a star and somehow know that a child has been born who will be King of the Jews. They travel a long distance to find this King, and they assume that the King of the Jews will be in Jerusalem, so they go to the palace in Jerusalem and ask to see the child... and the interesting thing is... they want to worship the child! They somehow know that this child is not just a normal baby. They seem to know this child is the long awaited Messiah that the Jewish people have been waiting for..."

(I'm getting sort of choked up telling this story at this point. It is an amazing experience telling this story to someone who really hasn't heard it before! Telling it like it is real news! It's pretty amazing news and an incredible story!)

Me, continuing: "But, here is the bad part. There is no new baby king in Jerusalem, and the king the wise men went to see was a very wicked king. He was very concerned about this news and seemed to believe it was true right away. He found out from his advisors where the Christ was to be born, where he would be, according to the scriptures. They told him it would be in Bethlehem, where Jesus really was... and then the wicked king told the wise men to go find the baby and come back and tell him where the baby could be found. The wicked king told the wise men he wanted to worship the baby, too. But he was really lying about that. He actually wanted to destroy the baby, so his own kingship wouldn't be threatened. "

Mr. Friend, eyes wide... shocked!

Me, tears in my eyes: "I know! He was a very wicked man. So the wise men DO find baby Jesus and they do bring him presents of gold, frankincense, and myrrh. Royal gifts, for a King, not just for a baby. Well, he probably wasn't a little tiny baby anymore - this was some time after his birth, I think. I've heard that his star appeared when he was born, and that is why the wicked king asked what time the star appeared - so he could do this next thing. I don't even want to tell you, because it is really, really bad. Anyway, the wise men are warned in a dream from God not to go back to the wicked king and they don't go back, but the bad king does the next part anyway. The wicked king sent soldiers to Bethlehem and told them to kill all the baby boys up to the age of 2 years old... (I'm holding back tears and Mr. Friend is on the edge of his seat)  - and they did it. They really did kill those baby boys.

(The horror of this is really hitting me. Mr. Friend can't believe it. He obviously has never heard of this before).

Mr. Friend: "But Jesus!? What?"

Me, remembering the next part. "No, no, he's ok. He got away. God sent a dream to Joseph to tell him to take the boy, his mother , and himself and go away to Egypt. He had dreams from God before and they had all come true, and so, I think the Bible says they left -  right that night of the dream... they got up and left and so they weren't there when the soldiers came."

Mr. Friend, looking relieved but still listening for all he's worth.

Me: "Well, you know we were talking about the gifts that people brought to Jesus? There is a tradition that Joseph used the gold to finance their travel to Egypt, but I don't know if that part is true. There is another tradition about the frankincense that I don't remember. And I think that the myrrh was possibly used during his burial, when he was crucified, before he rose from the dead. That part is tradition. The gifts aren't mentioned again in the Bible that I know of. Anyway - they stayed in Egypt until Joseph had another dream that it was safe to go back home, that's the real Bible story again. The evil king had died. But they didn't go back to Bethlehem, they went back to a town called Nazareth,  where Joseph and Mary lived before going to Bethlehem. And that actually fulfilled another prophesy, because the Old Testament tells that the Christ shall be called a Nazarene. It really is neat how many things about the birth of Jesus can be found in the prophesies. It helps us believe that it is true."

By the end of this - we both had tears in our eyes again, and he said. "Well, I really hope it's all true. I mean all of it. I think about it every day. I have a lot of questions as soon as I see Jesus."

I asked him if I could pray for him.

Mr. Friend: "Well, what do I have to do?"

Me: "Nothing. You just have to hold my hands and don't worry if you can't hear me very well with my head bowed down. God can hear me."

Mr. Friend, held out his hands.

After that we were both sort of crying again. It was a very tearful visit! Nothing like any other visit of all our visits in the past 13 years. We went on to talk about a lot of things that he was wondering about. Some questions I could answer. Some questions I couldn't answer. All questions that Jesus can answer. Lord, please answer all his questions!!

And then we went on to talking about cell phones! Because he had been wondering about that as well.

Did I think he could learn to use one?

Yes.

So I showed him how easy it is to make a call to my "Favorites". I showed him how to check the weather. I had to teach him what kind of touch to use on the touch screen. Just touch the App lightly. The what? The App. What's an App? Well, think about it like a special TV channel. Each one does it's own specific thing. One is a clock. One is the weather. One is a compass. One is for games. This one is for photos and this one is a camera! Yes, a camera.

And we took Mr. Friend's first selfie.

And he agreed to at least think about coming over for dinner, because it doesn't hurt to think about things.

I certainly left his home thinking about things.

It was an extraordinary visit.

                                                     ~Sara~




Tuesday, October 18, 2016

Autumn Gift





















Pink sky, blue sky behind the western trees.  

The soft grass wets our feet.

A surprising path of summer green,
            for all the world’s a patchwork sewn in autumn colors.

Fields are barest brown, or rustling faded corn.

Leaves have drifted down and down and down.  

Maple, apple, birch, and ash with skirts of single colors, rich and bright.
            There’s been no wind to send them on their way.

Oaks are red this year, deep red. Their leaves yet fly up high.  

Regal pines are robed in darkest green.

My youngest child,
            gift and gift again,
                        tugs at my hand to stop.

Her playful eyes meet mine,
            finger at her lips to hush and listen.

The breeze has stopped to rest, and clouds are still.

One cricket dares to sing.

Kneeling to hold her close, I feel her breathe the evening air.
            I whisper out Thanksgiving.

She laughs and turns to run again.

                                 ~Sara~



Tuesday, February 23, 2016

Unexpected thaw






















Unexpected thaw

The frozen giants were surprised to hear the dripping water.
        The gentle sounds creep into sylvan dreams.
     
The spluttering rivulets.
              
The burble of little streams cutting through the ice along the road.

Squirrels swoop up their tails to dance across the softening snow, 
     stopping in dramatic pose to sniff the sweetness on the air. 
            On tiptoes, they leap, avoiding puddles in their daily path.

The trickles barely graze the woody minds. 
     Like distant sounds of breakfast way downstairs on Sunday morning. 
           Dozing, while joyful sun is dancing through the window. 
                The cozy warmth and brightness keep eyelids closed.

That bright sun bathes the frozen, sleeping giants with a rosy-orange glow.  
        Warmth begins to seep into the heartwood; 
                 bark expands as sap begins to flow.  

Content, the giants murmur in their sleep.

Birds swoop out to meet the southern wind.
      Wild melody bursts out in empty landscape,  
           the bird himself surprised to hear the sound.  
                  
                      Followed by a hush, solemn and still.  
       
       After a moment far longer than an echo, 
             the song is heard repeated far away.

All the while, the water droplets drip, the drips turn into rivulets, 
          the rivulets begin to widen into pools and puddles all around.

A SPLASH as children run after the dog. 
          Splash and stomp and soak the boots clean through.

The laugher bounces here and there, then fades.

The trees begin to itch to stretch their spines, 
          extend their limbs, 
                and crack their bony knuckles. 

But wait, the frozen giants try to think…  it can't be time for Spring?

Just let me sleep a little more. 
         I’ll get up soon. 
                  I promise.

                                         ~Sara~   



            He sends out his command to the earth;
                        his word runs swiftly.
            He gives snow like wool;
                        he scatters frost like ashes.
            He hurls down his crystals of ice like crumbs;
                        who can stand before his cold?
            He sends out his word, and melts them;
                        he makes his wind blow and the waters flow.

                                                            ~Psalm 147:15-18





Saturday, August 15, 2015

Blurry Beauty

Three years ago today - on August 15th, 2012 - three-month-old baby Hannah was diagnosed with Infant Leukemia and we were all plunged into the deep waters of a previously unimaginable trial. Every member of our household has been affected in profound ways. 

Our oldest daughter, Grace, now a Senior in college, wrote a powerful piece about her experience that was published this past spring in the Bethel University literary journal Coeval.  Reading it reminds me of the darkest days surrounding Hannah's initial diagnosis, when any attempt to look forward was shrouded in a dense fog of fear and uncertainty. And it expresses the joy we experience in having Hannah with us now, happy and whole. And it also points to the brightest Hope, regardless of our current joys or trials. 

Grace has given me permission to share it with all of you who have prayed and loved us so well through the past three years - such a long time to remain faithful through another family's journey. Each and every one of you is a gift to all of us! I hope to write more about our overwhelming thankfulness for all of you as we celebrate three years of survival since Hannah's diagnosis -- and also a year off of treatment in just a few more days. In the meantime, it means a lot to me to be able to share Grace's words with you, and I think many of you will appreciate remembering and pondering these things together, as we celebrate three years of miraculous life for Hannah.

Here it is, originally written in the Fall of 2014:



Blurry Beauty
by Grace Shull

            I don’t like waiting. This past August I ordered a pair of Chuck Taylors from an online shoe catalogue. They were to be my first Chucks, and I was eager to pull my hot pink high-tops from the long, narrow box in which I knew they would arrive. Estimated shipping time was about four days. I checked the tracking website frequently, following the shoes’ slow progress from Kentucky to Minnesota. It was highly unsatisfying. Movement showed up only a few times a day. I was forced to go on with my life in between my checks. Go out to feed the ducks. Check package. Wash my hair. Check package. Look at Face - check package - book. Check package. Check package. Check package.
           
            A little over two years ago, in the same month I bought the sneakers, my family received some shattering news.
            I remember where we were when my dad took the call from the doctor’s office. One of my sisters and I were in the living room with him, the afternoon light coming through the big glass window behind one of the couches. Our pediatrician explained to my dad what my mom, sitting in a small white exam room and hugging her youngest daughter against the shock, couldn’t possibly relay over the phone. I could see the fear in my dad’s face as he sat there and listened, his hazel eyes flicking back and forth as he tried painfully to grasp the doctor’s words. My stomach grew heavy as I began to understand, from my dad’s half of the conversation, how serious things were.
            He explained to us, after getting off the phone, that they had taken my baby sister’s blood and counted her white blood cells. They believed she had more than 200,000 cells per microliter of blood, which was extremely high. The most likely reason for this, the pediatrician had told him, was that Hannah had leukemia.
            Pain squeezed my chest, and I gasped, tears jumping to my eyes. No. It couldn’t be. Not my little sister. She was only three months old. She couldn’t have cancer. There had to be another explanation. They’d miscounted her cells. Something else, something weird and harmless, was messing with her blood.
            “God,” I prayed, “please let it be something else.”

            I said I hated waiting. I do. The part that really gets to me is the fact that I, as a human being, must experience time as a linear progression from one point to the next. Yes, I understand that this is necessary, given our creaturely limits. I know I’m not big enough to contain and comprehend all eternity at once. I get that. Sometimes one moment at a time is almost too much to handle. Still, following a timeline is hard. I want to jump ahead for a peek at what’s next, but I’m stuck here. It’s a little like flipping through a photo album, where every moment has its own snapshot, but you can’t look ahead. You can look back all you want, if you thumb through the pages of memory. Sometimes it takes multiple tries to see everything that’s there in those old photos.

            My mom and dad went with my sister to the hospital and began to watch and wait, hour after anxious hour. They tested her blood again, and the diagnosis was confirmed. Hannah had acute leukemia. The first blood count had been off - it had been much too low. When her blood was counted by the children’s hospital’s more sophisticated equipment, we learned that her true white count was over one million. A normal count is considered 5-15,000.
            Fear gripped my heart again when I was told that the enormous amount of white blood cells slogging through her veins put her at immediate risk of a stroke. It was crucial to get rid of some of the leukemic cells. They hooked her up to a big machine that pulled her blood out and pumped it back in, filtering out as many white cells as it could. They did this twice.
            I stayed at home with my nine other siblings, experiencing most of this from a distance. We began to pray together, pleading for Hannah’s life. My mom had rarely spent even a night away from home in the past eighteen years, so it was strange as we began to run the house without her. Several days went by, and she and Hannah remained in intensive care. The doctors managed to reduce the number of white cells in Hannah’s blood. The immediate danger subsided a little. She wasn’t dying now. We began to exhale some of the fear that had lodged inside. A prognosis was given: she was given about a 50-50 chance. The medical plan began to be explained: if Hannah’s cancer cells responded to chemo, we were about to enter into a grueling two years of treatment. An ache eased in to replace the original sting.
            Two years.
            Breathe.
            One. Moment. At. A. Time.
            Two years.
            That’s a long time to wait.

            Another thing about waiting is that it’s usually not a sedentary experience. Maybe princesses locked in towers with nothing to do but brush their hair and look out the window can manage it, but I have rarely found waiting to be a passive activity. This is a big bummer, and a big blessing. If I had my way, I’d rather not do anything until I get what I want. But that’s not how things work. In the meantime, life must be lived. Time may crawl when I’m doing the laundry, running errands, eating dinner, but if I stop trying, stop moving, stop forcing my feet to slide off the bed every morning, time will drag like the trailing skirt of a widow’s dress. Crying is good. Collapsing onto my fading flowered quilt in exhaustion and telling God I can’t take another step is perfectly fine. But I then have to let Him hold me up and help me hobble forward. Giving up is not an option, because there is always hope.

            A moment in life is like a single photograph. When I’m inside that moment, when it’s a hard one, and the pain has buried itself behind my ribs, it’s difficult to see everything that’s going on. It’s difficult to focus on the glimmers of light and snatches of laughter because the darkness feels so real, so cold and empty and black, like a spot under the ocean that catches a bit of sunlight only on the clearest days. In moments like these, the fear and grief cut in so deep that I’m trying to see through tears. Usually the image is blurry.
            Blurry photos are hard to make out. The colors blend and I can’t tell exactly what’s happening. Gestures and expressions that surely mean something are just a smudge of motion. There are probably some smiles there, but they’re hard to hold onto.
            Life is a photo album with an end I can’t yet see. When my eyes dry a bit and my hands grow a little quieter, sometimes I rifle back through the old pages. And I begin to see patterns. Some of the pictures look clearer than they used to, even a few of the painful ones. When my brain unfogs for a minute, I can see that there is some beauty here, maybe even in the dark photo I’m in right now. I can’t seem to find it, but maybe - just maybe - it’s there. And I turn back to the current page and try to look around more carefully.

            Two years. A long time. Chemo was hard. Danger was never far away. Fatal infections were often possible. Relapse was never out of the question.
            Two years. A lot can happen. A lot did. A lot of things, including a lot of really bad things, also didn’t.
            Two years is a long time to wait. And we waited. We ate, struggled, laughed, cried, fought, floundered, and prayed our way through the waiting. The darkness was real. But God, the unconquerable Light, was there, too.

            Hannah is still alive. She is a beautiful, wonderful miracle. Her light brown hair is getting shaggy. My mom doesn’t want to cut it. If you put the hairbands in just the right spots, you can almost pull all her hair into three short pigtails. It’s not yet long enough for just one.
            She’s the only one of eleven kids without blue eyes. They’re “sea foam green,” as we like to call them. Sometimes they look almost gray. They sparkle when she laughs, which she does often. She is unique. She is special. We love her to pieces.

            It’s actually difficult not to take her current health for granted. Even after those two long years, it’s hard to remember to pray that she will continue to do well, that she won’t relapse. We think all her cancer cells were killed, but it only takes one. God forbid that there are any left.

            Hannah is still here with us, but there is another family at our church who just lost their father to cancer. I know their prayers for his life were no less fervent. I know their faith was no weaker than my own frail confidence in our faithful Savior. I know that God loves them just as much as He loves us.
            But He let their father die.
            It is still hard for me to look at that photo. It’s hard to see how there is possibly light in it. While a cancer patient’s still alive, there’s always at least that small sliver of hope that they can make it. But once a person dies, what hope remains? What is there possibly left worth waiting for?
            To find the hope in this photo requires looking at some other photos, too. And they’re actually photos that haven’t been taken yet.
            Did I say we can’t look ahead in the photo album? Sorry, I guess I wasn’t clear. We might not be able to see our own future photos, but there’s a “cheat sheet” album God’s given His children to grab whenever they’re confused.
            It’s called the Bible. It has some old photos - some really old ones - and some so bright and colorful that the printer inks of this world can’t even begin to mimic their vibrancy. The Promise Photos. There’s a huge wedding party in one of them. I’ve seen a dazzling golden city in another. In one of my favorites, there is a King, with snow-white hair and scars in His wrists, standing with lots and lots of joy-filled people around Him. The label under the photo says, “Death shall be no more.” Our friends’ father is in that picture - perfectly healthy and happy. There are thousands of people there.
            It’s these sorts of photos I have to look at, over and over again, when the pictures in our albums are too dark and fuzzy for me to understand. It was these that kept my heart from flying apart in those two years.

            So, the Chuck Taylors? Waiting so eagerly for them must be silly compared to the heavy waiting our friends must be pushing through, right? Of course the shoes are not nearly as important. But God is the King of all joys, both great and small. He gave Eve to Adam, and He also gave them daisies. He gave my family many joys in those two years of waiting. Light came in sparkles and in sunbeams, piercing through the darkness. Shoes can be rays of light sometimes, and so can laughing little sisters.
            The Chucks did come, and wearing them makes me smile. So does Hannah. “Soo,” she calls my pink sneakers.
            “They’re shoes, Hannah.”
            “Soo!”
            Yes.
            And I laugh.

Wednesday, August 20, 2014

Sometimes, the driveway declares the glory of God...

***
Our older four children are away on a trip, so this week, driving the weekly trash to the corner fell to me. And since the oldest three boys home were helping me with the task, I couldn't leave the youngest four alone in the house. We all piled into the van. Adventure ensued as the kids, gloriously free from seat belts on our own long driveway, huddled in the back to make sure the two bungee-corded, wheeled-trash-bins continued to follow the van down to the corner. A minute later, the boys jumped out, set the bins neatly on the side of the road and hopped back in, laughing, and proud of their work. 

It's been good for them to be the "older kids" this week. 

A glorious evening. 

We decided to drive a hundred yards further to visit our 91-year-old neighbor for a few minutes. The long way round to turn the van back to home. 

Our neighbor and I watched the kids play tag, and run shouting around the house, as beams of slanting sun shot long shadows at their feet. Moments like this I always turn to smile at our neighbor and try to imagine him running barefoot in the grass at dusk as well. He was ninth of ten growing up in that house after all. 

On the way back home, I drove, blinded by the sun, back to the west then turned right to go up our long gravel driveway. Trees, and weeds, and all manner of wild have grown up along the left side of the drive and I was struck by the darkness of the path. Here and there a beam of light would break through and shine a patch of shining light upon the ground. But largely, night had claimed the drive. If anything, the few beams of light only intensified the darkness.

I slowed before continuing back home, and thought... "Too bad we have to take this path, with all that sun still filling up the fields." 

Immediately, I thought of the past two years. 

We had to take that path. It was the only road. And although the sun still shone as bright as ever in the fields, sometimes the glimpses of light we saw only accentuated the darkness and the length of the road, curving on ahead to points unknown. And now, once having gotten used to the dimness of the path, it's a little hard to believe we have the freedom to get out again and walk back out into the field and feel the heat of sun, and have even a minute to breathe again. We're shy and uncertain, even in the gentle evening light. 

I had someone send me a note the first year, urging me to write again, besides the CaringBridge reports. A kind note intended to encourage me. But, I just couldn't. I remembered all the promises of God, believed them more than ever in my bones, knew He was Good and True and Eternally Shining like the sun. Like the sun that shines the same whether we are blinded with glory facing West, or resting in the sunny field, or trudging down a dim uncertain road. But it's hard to speak that Praise out loud, or write it down, when hidden in the shade. 

Sometimes, even a driveway declares the glory of God.

                                                                                ~Sara~

The heavens declare the glory of God,
     and the sky above proclaims his handiwork.
Day to day pours out speech,
     and night to night reveals knowledge.
There is no speech, nor are there words,
     whose voice is not heard.
                 ~Psalm 19:1-3~





Saturday, December 28, 2013

Infant Leukemia

Hello,

If you are google searching for the terms "infant leukemia" and have come to this page because your child has just been diagnosed with leukemia, my heart goes out to you. Our baby Hannah was diagnosed in August of 2012 with infant Acute Lymphoblastic Leukemia with the MLL-r translocation t(11;19). She was 3 months old at that time (105 days old), critically ill with a white cell count over a million, marrow was 94 percent blasts, peripheral blood was 99 percent blasts… and we all faced a terrifying, very uncertain future. She is currently doing well at nearly 20 months and she has nine more months of treatment if all goes well.

I know that in the beginning, I searched the internet looking for HOPE, research, stories of other babies with leukemia, and connections to other families who were fighting infant leukemia. If you are one of those families, I wrote this post for you. I especially have been looking for a way to let parents know about the support group on Facebook for Infant Leukemia parents.

The Infant Leukemia Support Group is a private group for parents/guardians of infants diagnosed with infant leukemia (Acute Lymphoblastic Leukemia, Acute Myeloid Leukemia, MLL-r, MLL-g, mixed lineage, T-Cell, and other rare forms) and it is a good place to connect with other families. Through this group, families are often more connected and informed about how other babies with infant leukemia are currently doing (including side effects and advice for dealing with day to day issues common to babies on treatment) than some oncology groups, who may only have one baby on an infant leukemia protocol. With only 200 babies diagnosed each year with all these types of leukemia counted together, it can be hard to find each other.

The Infant Leukemia Support Group page can be found here: https://www.facebook.com/groups/infantleukemia/

Hannah's ongoing story can be found on her CaringBridge site which is http://www.caringbridge.org/visit/hannahireneshull. I update there frequently. Hannah's home hospital is Minneapolis Children's and she is on protocol COG AALL0631. Her current treatment plan is "chemo only" and does not include plans for a stem cell transplant except in case of relapse.

Please feel free to contact us as well.

sara.junkdrawer@gmail.com

Blessings to you!
Sara (and Kevin) Shull


This picture was taken a year after diagnosis, August 18, 2013 -  a year into treatment.


Baby Hannah on August 15, 2012. We were told there was a good chance she would not survive the first 48 hours. There is hope! 




Tuesday, August 20, 2013

In hope, believe that peace will come again.


Face to the sea, with sun upon my back.
     I lean into the wind… steady, strong, and chill.
          The stinging spray rouses my numb soul.

I stand, just stand, and look.

Water so vast, so deep.
      Who can grasp the volume of the depths?  
           It scares me… just a bit… to think of all that weight.

Waves crash hard against the shore.
    
        Again.
           
                  Again.
               
                          Again.

Foam escapes, rushing up to grasp at freedom from the pull.
          One gasp of breath and drawn back down
                    to join the clear gray green.

The rhythmic peace,
        untiring sound,
               lulls against the danger of that strength.

Sand and rocks upon the shore,
       as far as I can see.
I crouch to choose among the pebbles.

I’m small as sand beside those waves that crash the shore.

         Yet, I know the joy of the chosen.
                I know this, though all around may seem but cold and fog.

Keep me safe, O my God. Let me not be lost along the shore.
            Forgotten, kicked, and sifted by the sea.
     May I be as one plucked up and held tight in your hand.
            A treasure for a purpose yet unseen.

And, so I stand, a witness to the wild dance of the shore.

The roar of wind and waves demands I listen.
           My weary soul obeys the call to rest.
     The setting sun, a warm wrap on my shoulders.
           The glow of home to come shines in the dusk.

Be still.

Breath deep.

In hope, believe that peace will come again. 

                     ~Sara~
Treasure from the Junk Drawer
hopingingod.blogspot.com
copyright © Sara Shull
•All text and poetry by Sara
•Art illustrations by Sara
•Photos by Sara or the Shull kids
~~~~All rights reserved~~~~

Bible verses:
The Holy Bible, English Standard Version (ESV)