Beyond a Year

December 7, 2011 Grace's 1st HEAVENday

As this day of remembering comes to an end I am overflowing with gratitude to all of you who have

eased our hurt by sharing your love and compassion with us. I could hardly keep up with the facebook messages today! Each time we have faced one of these tough days you have been there to hold us up. How do we ever repay that kind of love? THANK YOU from the bottom of our hearts!

I just wanted to share a couple pictures with you....

<-- This is Joy placing her ornament on the tree at the cemetery this afternoon.

The completed tree...

Mae and Joy holding the ornaments

they chose (a rainbow and guitar) -->

Today we looked at pictures and watched a lot of videos. We visited with Gammy and Auntie Susie. Auntie Alisa spent the entire day as we leaned on each other. Joe, our girls, my Mom, Grandpa, Sisters and many cousins met to decorate the tree this afternoon. The kids played there together and even made snow angels. Grandpa brought candy canes for a special treat to enjoy on the way home. We ate chinese food and tacos for our meals today (Gracie's top favorite foods). We looked though Graces treasure chest recalling memories both wonderful and difficult. My parents joined us for supper and then we watched more videos. We thought of heaven and wondered what Grace is doing today.

And we thanked God for each of you.

Beyond Earth

A year ago today I laid with Grace in her room on the hospital bed, cradling her in my arms. It was a difficult night. She was still struggling to breathe, but I think she was already closer to heaven than earth. Joe, Alisa and I said our goodbyes to her stillness at 7:15 the next morning, on December 7th, 2010. By that evening the dates for her home going services had already been arranged and we were arriving back home to a much quieter new world without her in it.

This last 12 months has felt like swimming across a wide river. The current has been so strong, the struggle to keep our heads above water difficult at times and the whole of it has been exhausting. But the sun has still been shining. The warmth of God's love and the encouragement of family and friends has kept us going. Knowing Grace is waiting for us on the other side of the river gives us the courage to keep moving forward.

I have to share a story here. Around this time last year I was praying for my friend to have a baby. She had been such a gift to me through so many difficult times, and I so wanted that blessing for her. Yesterday I spent the the day and night at her home, helping to care for her newborn triplets! They came early, but their due date was December 7th. A miracle of perfect proportions on a day God knew I would need his encouragement. Last night I got to hold their sweet little bodies and marvel at the amazing creation each of them are. 30 tiny toes and 30 long slender fingers. 3 perfect noses and a smile in their sleep. There have been so many moments of "coincidence" like Grace being born to heaven and those babies due to be born on earth on the same date. But my spirit testifies to the truth that those "coincidences" are really evidence of God's active presence in our lives.

Tomorrow will be a day of remembrance at our house. Mae gets to stay home from school. We will be spending some time together looking at pictures and videos, going through Grace's treasure chest of special things, and will be bringing out ornaments to adorn a little Christmas tree at the cemetery. Next year those ornaments will go on our tree at home. Each year we will bring out new ornaments and our collection at home will grow over the years, keeping Grace as part of our Christmas decorating every year. I think she would love this idea! It should also be a tangible way for her sisters to remember her as they pick out an ornament each year that reminds them of her. This year Mae picked out a pastel rainbow and Joy got a pink and purple guitar. They are perfect!

I got an email from a friend of a friend's friend a couple of days ago. She encouraged me by telling me about how Grace's story had effected her family even though we had never met. It's amazing to think of how the life of one little girl of 9 years old has touched so many others in the world. I can't wait to one day fully know the true impact of Grace. Beyond planet earth, impacting lives for eternity.

Beyond Profound Silence

If you read "Beyond Chapter One" you got a glimpse into the 14 months of emotional upheaval our family endured as we were flung into the world of childhood cancer. There were crazy hard days like that first one, and trips to the emergency room in the middle of snowy nights, time in the intensive care unit, admission after admission to the hospital, setback upon setback, and then having to watch her physical strength fade away. The time we fought felt like just a moment and an entire lifetime at once. The unexpected gifts of living with our perspective of a life threatening illness each day in the journey allowed us to hold tightly to moments of hope, and joy while also experiencing deep heartache. Through it all Grace had a sense of peace and acceptance I don't know if I will ever fully understand, except to say that God's presence had to have wrapped itself so snuggly around her that she felt safe in his arms even on those worst of days. God gave her an eternal perspective and many times through her journey we heard tidbits of her hearing God whispers in her ear. She knew she had cancer before she was diagnosed. She lived with joy when the news of relapses came. She waved as she was meeting eternal friends unseen by us in her last days on earth. She didn't want to die... but she knew where she was going.

If you have read this blog at all you know the "end" of Grace's story. The cancer physically took her away from us. We have been left reeling in pain while trying to figure out how to keep living this life that used to be so full of her that her absence is beyond profound silence. How do we keep going? We breathe because God gives us breath. We take another step forward because there is still a road to walk on. We find hope in eternity because we believe God's promise of it in his word is true and Grace's experiences of touching heaven are undeniable.

Yesterday we received a beautiful gift in the mail. Thank you to my CBC friends! It's the likeness of Grace on a Palamino horse flying amongst rainbows. Is it an actual glimpse of heaven? Maybe. Maybe not. The bible does reference amazing colors in heaven though, rainbow like in description, and horses too. In any case it gives me great peace to see my girl with some of the things she loved most here. I wanted to share it with you.

More than anything

in this life I pray

that Grace's story will give people

a longing for heaven

that they cannot explain.

That somehow her spiritual strength and living with joy even though such difficult circumstances will give you encouragement in your daily struggles and hope in an eternity that is yours for the asking. Her story is not over... it has just begun. Beyond Chapter one, beyond her final breath here, is her truest beginning.

Beyond Chapter 1

It's Oct 20, 2011 and as always we are missing Grace. We have learned so much from all of it, we have grown in some ways and been broken in others. It has been two years this day since Grace was diagnosed with Wilm's tumor, a pediatric cancer. Two years since our lives were suddenly flipped upside down into a reality that will forever change us. I told you I wanted to write a book. This is a rough draft for chapter one. I want you to see why today is a tough one to remember, but to move through the pain first you have to find the courage to face it.

Oct 20, 2009

We’d been waiting after the CT scan for well over an hour in the dimly lit radiology reception area. Every other patient had long since left. My daughter, an 8 year old, had missed supper and was hungry and even more frustrated at our long wait. I was getting anxious. The doctor was supposed to have called us there with results an hour ago, so I was surprised to see him appear around the corner in person. I greeted him with a quick smile, then felt a sudden flash of heat spread up and down from my core as I met his eyes. My heart skipped as I felt my chest tighten and my stomach lurch. In that one glance I knew the news would be devastating.

She was sitting on my lap as I forced a “Hi” passed the bolder that had suddenly appeared in my throat. He didn’t bother with pleasantries and for this I was grateful. Kindly he met my gaze. “Annette, we need to talk.” To my daughter, with a smile he said, “Malia, can you wait here for a few minutes, Sweetheart?”

Already my brain was screaming in protest. I did not want to hear what he had to say. I did not want to go through another trauma in life. I did not want her to be in the center of this news. I wanted to take her and run. Fast and far. To escape this moment and leave it disappearing like a shadow in a lighted room. Instead, the voice I spoke with was calm and clear. “OK. Wait here, honey. I’ll be back in a few minutes.”

My legs felt disproportionate to my body as I started to move. It took great effort to transfer Malia off my lap and onto the seat next to me and to make my feet follow the directions my brain gave them to move. She had cried when the IV was placed into her hand for the scan and as I glanced back at her I could see her cradling that hand, IV still in place, close. I silently followed the doctor into a private room while feeling my body beginning to tremor against my will. My heart was pleading with God as we sat down together in a room just big enough for the 2 chairs and a garbage can. The doctor shut the door then sat quietly, trying to gather his thoughts. I suddenly felt as if someone else was sitting in my place, preparing to get this news. I wondered how many people had gotten bad news in this room. Would I know what to say when he told me? Would I scream? How far down the hall would they hear me? Would I scare Malia out in the waiting room with my reaction? No. I resolved to hold it together. The doctors sigh broke off my run on thoughts. It was time.

“It’s not anything we expected to find.” (pause) “I don’t know how to...” (another pause, then sigh).

My thoughts were racing. “Oh, God, please, no. Please.”

Then slowly, “Annette, she has a large mass in her kidney.” As a nurse I know the word mass can mean several things. It’s used until a definitive diagnosis can be made. Sometimes it’s cancer, but she’s only 8. There’s never been any childhood cancer in our families. What else does “mass” sometimes mean? My brain is sluggish. I can’t get it to work. Abscesses, cysts....

“There are also spots in her lungs.” Brain frozen. Black spots on the walls. I realize I am looking at the trash can wondering how soon I will need to use it. My brain starts to work again against my will. Mass... Spots... CANCER! METASTASIZED CANCER!! My head spins. The silence in the room is louder than any sound I have ever heard. Oh, God. Oh, God. A thousand questions bombard my thoughts. There are exclamations, groans and screams in my head, but my mouth stays silent, and no thought is actually completed. They tumble and fall, bouncing around inside my skull without finding a place to land.

“I’m so sorry.” It was all that was left to say.

It feels like forever before my mind finds a statement it can form and reliably speak out loud. “Now what do we do?”

“I’ve already spoken to the oncologist on call at Children’s. She said you can come tonight if you want to and they can do some preliminary lab work and get some baseline data collected, or you can go home and take her there in the morning.”

Oncologist? Oh, God. She’s always been so healthy; so strong. This can’t be real. Despite my racing, disjointed thoughts, I continue to sound calm and rational. “I want to go tonight.” We discuss which campus to go to, and what floor. I used to work at the Minneapolis campus, know my way there, and even know where the “cancer kids” stay. It was never a place I dreamed I would be heading to with my own child, but that was exactly where we would be going.

Back out in the waiting room, I see my girl curled up alone in a big chair in the near dark against a wall. She looks so little and defenseless; a stark contrast to the way I usually think of her. I bite the inside of my lip to keep my composure as I offer her a small smile.

“What’s wrong, Mama?” She’s not so little after all. She knows this is bad.

Talking to myself I say, “Be strong. You don’t know much yet. Maybe they can fix this. Maybe she’ll be fine. Keep it together.” Into the wide eyes of my baby girl I say, “The doctor saw something on your test we need to know more about. We’re going to go to the hospital where mommy used to work. They have special doctors who know more about this kind of thing.”

It was already getting late. “Do we have to sleep overnight there?”

“Yes, baby.”

“Awwwww.” She said in her best whining voice, “Well, can I at least eat something first? I’m staaarrrrving!”

Surprising myself, I laughed a little. It occurred to me that in that moment she was not a “patient”, she was my daughter. And my kid was hungry. “Yep, we can eat first.”

Finding the cafeteria was no chore. I’m an OB/ Pediatric nurse at this community hospital. I know the menu, the kitchen staff and the route from the cafeteria to my 4th floor unit well enough to get there blind. We go through the line and she gets a grilled cheese sandwich... her favorite! She’s pleased as punch. I’m a diabetic and should eat, but am something beyond nauseous so I just get a sprite.

A couple times a year all of the nursing staff on our unit have to go through additional training sessions. I was supposed to have taught one of those classes that evening, but in glancing at the clock I realized my co-worker had to punt for me. I’d missed it. The class would be letting out at any minute.

As always Malia wanted to push the elevator button and grinned as it zipped up to the 4th floor. We had traveled this elevator a hundred times together coming to visit babies or pick up something I needed for work. But today was different. I realized with sudden clarity that nothing that was normal would ever be normal again. I set Malia up with her food in our break room and excused myself to the bathroom. I needed to pee, and throw up, and maybe be hysterical. This cannot be happening. I left Malia and rounding the corner saw a sea of my co-workers (my friends and fellow nurses) heading down the hall towards me. My bladder would have to wait.

Allison was the first to reach me. “Hey! What did they find?” They had all seen us before the scan when I had explained I would be late to class due to the CT. I had told them about her fall off the monkey bars at school a couple weeks before and about the low grade fevers the last couple days. Despite the occasional report of pain in her left side, she had been going to school all week, running and riding her bike around the neighborhood, climbing trees, eating well and just being her usual active self. The doctor had seen her at the clinic that afternoon and because of her recent history of falling, wanted to see if she maybe had a slow internal bleed causing her worsening pain.

My reply to Allison’s question was more direct than the doctors description. He used the words mass, spots, oncologist... I said simply, “She has cancer.”, feeling the burn of tears filling my protesting eyes. Allison pulled me into a startled hug as others gathered around me. I only allowed myself a few tears. I had to be strong. Malia still had to get to the Children’s hospital, and I didn’t want to alarm her. I told them the little I knew. “What can we do?” I didn’t know. I couldn’t think. I just asked them to pray, especially for Malia and for my husband who I knew would have an especially difficult time dealing with this news. Right then and there they laid hands on me, bowed their heads and prayed out loud. An unexpected gathering of support and prayer in a public setting. Exactly what I needed, precisely when I needed it. A first glimpse into the astounding ways God surrounded us throughout the journey to come.

A few more tears and 10 hugs later, it occurred to me that I had to tell my husband, Joe. He was at home with our other two daughters, ages 6 and 1, waiting to hear from me. I sat down at the phone staring blankly at the numbers. I started to dial and hung up. Again. Again. The number I finally finished dialing was my moms. “Hi, Mom. Malia just had a CT scan and she has a tumor in her kidney and there are spots in her lungs. I’m taking her to the oncology floor at Children’s tonight. I haven’t told Joe yet. I don’t know how he is going to take this news and I need you or dad to go tell him in person. I don’t know what to do with the girls”

Even as I said it I knew it was all wrong. This is not a conversation I should be having. I should be able to soften the blow for my mom somehow, but how do you say this gently, without causing internal bleeding to the one’s who love her? I knew it was unfair to give mom such an awful responsibility, to have to be the bearer of such bad news. I just couldn’t tell Joe on the phone. I needed to know someone would be there to hold him when he fell apart. I needed to be with Malia. I didn’t know what else to do.

Allison drove with us to Children’s. It was dark and cool, but not cold. I shook anyway. I felt disconnected and dreamlike on the drive. I kept glancing back at her sitting alone in the backseat looking out the window. Wondering desperately what was going through her head. Afraid to ask. The radio was playing, and Allison and I tried to make light conversation. The city lights were brilliant in the darkness as we approached Minneapolis. My stomach hurt, my head was pounding, my mind was racing, but I was still unable to complete a single thought. Oh, God, help us.

Arriving at the hospital, Malia was unusually quiet. Typically boisterous and headstrong, she was holding my hand and leaning her small frame into my side as we walked down the long colorful hallway toward the admitting desk. Malia pushed the button for 8 and we were met by a sign welcoming us to the oncology/ hematology floor. Another wave of heat ran up from my core. I bit my lip and fought back tears. We were escorted to a room at the end of the hall. Small children with pale faces and darkened eyes peered out at us from white hospital beds. Their bald heads announcing their sentence to serve in this battle they did not sign up for. Their parents holding vigil by their sides. I looked at Malia walking beside me feeling a new wave of nausea. Her brown hair was beautiful. She was already thin. How did we get here? Please, God.

Over the next hours kind nurses and a gentle doctor checked vitals, drew labs, took a medical history and did an exam. They started some IV fluids for her and then found me some Tums and Ibuprofen from their own purses. We wouldn’t know anything definitive for a couple days. They would do more tests in the morning. An echocardiogram, another CT, more labs, and kidney function tests. A biopsy would likely be done in the next couple days and they would put in a port (a central IV line) then we would wait to start treatment until we knew for sure what type of mass she had. The biopsy would be sent to Chicago, to the expert in the field. They would cover all the bases, get her the best possible care. If this is what they thought it was, it usually responded very well to chemotherapy. No one on the medical team said the word cancer for days.

Joe got to the hospital soon after we had arrived and when he walked in the room we exchanged a look of pain that can only be understood by other parents who have lived in this nightmare. He looked better than I expected, strong and supportive. He kissed us, his girls, and settled near Malia saying he loved her.

Malia was so quiet. She agreeably did whatever was asked of her, but focused as intently on the TV as she could while blocking out anything anyone in the room was saying. She was like a horse with blinders on. Sponge Bob was her refuge. She refused to look right or left unless we were intentional about getting her attention to ask a specific question. It was obvious she wanted to run as much as I did. But she sat there with quiet courage and did what she had to do with very few tears. She didn’t ask questions. She fell asleep quickly after we turned down the lights, her breathing becoming deep and regular. Joe and I held each other in the dark, silent tears streaming, trying to each be strong for the other. Both feeling ripped in two. I closed my eyes to try and sleep and would see flashes of her laying in a coffin. I would immediately snap my eyes back open, staring into the dark. Once in awhile I would drift off for a few minutes then would wake finding Joe kneeling by her bed, praying for his little girl. I had no words. I didn’t trust my voice or my thoughts. I tried to shut back off, to sleep. But as I shut my eyes, again she would be in a coffin. Feeling a scream building in my throat I would again force my eyes open to look at her breathing next to me. I would look at her until I no longer could. It was a very long night, and by first light Joe and I were exhausted and left feeling physically sick.

We had no interest in eating breakfast, and no time either. Quickly we were rushing off to do all the tests ordered for the day. Joe went home to sleep a little, to tell his family what was happening and pack me some clothes and other needed things for the hospital stay. At lunch time I checked my purse to see how much money I had to eat on. There was about 3 dollars if I counted the loose change in the bottom. Panic started to set in as I realized for the first time not just how life threatening my daughter’s illness was, but also the huge implications that illness would mean to every other part of our lives. Financially this would be devastating. Medical bills, parking fees, co-pays, gas, meals away from home, childcare for our other kids, and on and on. As it was we weren’t making it from one paycheck to another. There was no money in the bank. I tried to pray, but it was hard to even breathe. What were we going to do? I wondered if I could wait to eat until supper, but checked my blood sugar and realized I had no choice in waiting. I ran down to buy a sandwich and was able to eat about half before having to make a bathroom run to throw it back up. As a diabetic, this was going to be a difficult ride.

After getting back to Malia’s room the phone rang. It was an old friend of my family’s that I hadn’t seen in years. Dan and Toni had heard of the diagnosis that morning through a prayer chain. Dan explained that he was supposed to teach a class that day, but it had been canceled since not enough people had signed up to attend. He got paid either way, and since he wasn’t actually teaching wanted to give us the money. He asked if I could meet him at the front entrance to the hospital that afternoon. I hugged him a couple hours later, holding enough money in my hands to meet our immediate needs for that hospital stay. I wept silently thanking God for his provision and asked for greater faith to trust him along the way.

Two never ending days passed while I did my best to keep Malia distracted from everything around us that was terrifying me. I hung on every word the doctors and nurses said, desperate for information about what was happening. It was killing me having to wait for a plan. Malia watched a lot of TV. We went for walks around the oncology floor, but she remained very quiet and reserved. There was a child across the hall on comfort cares. No one ever told us that, but I used to be a hospice nurse and the signs were obvious. The family looked as wrung out as I did shell shocked. Their tears told their story of heartache even if their english could not.

The night before Malia’s biopsy I kneeled at her bedside like always to pray with her before she went to sleep. I was so tired, so overwhelmed, and so scared. I didn’t know what to pray. “Dear, Jesus. (pause) God, we need you. (I started to cry while trying desperately to hide it).” I peek at Malia who is peeking at me. She rolls her eyes at me dramatically and says “Mooommmm!” as if she can’t believe I’m losing it. It made me laugh and I quickly finished the prayer, tucking her in, kissing her cheek and saying goodnight. I watched her fall asleep in the blue hue light of her IV pump. But sleep did not come for me that night. The next day they would cut her open looking for answers to try and save her. I had seen her CT scan that day. Popcorn white spots covered her lungs and a massive part of her left side was blanketed white. I knew if I closed my eyes the coffin would loom.

I laid back on the hard cold cot and stared at the ceiling listening to distant alarms, beeping IV’s and crying infants and couldn’t help questioning what God was doing and if any of us would survive.

Chapter one only tells a day in the life of cancer, only a glimps into the ways we've been changed through Grace and her life. In the end God is still faithful, and He has not abandoned us in our pain or our loss. As we learn I will write and hopefully bring hope to others struggling on the road of life. Thank you for your prayers.

beyond the missing puzzle piece

I have a lot of unanswered questions running around in my head, my heart, and my spirit. They are fleeting though. I don't have the guts to fully form them. They leave me frightened and angry and bewildered. There is only one place to get the answers I need, but if I'm fully honest I've been hiding from the only One who holds them. Today the message at church was one of seeking to focus on the things that God invests in. There are only 2 things that go with us from this life into the next. Only 2 things that really matter in the end. The Word of God and the people he so desperately loves.

Confession time. I haven't read my bible in a long time. I haven't spent time seeking Him there. Not since she died. Not since I was forced into a goodbye we fought so hard against and prayed so fervently to avoid. Not for 8 months to this day. It's not that I've turned away from God. I love Him in the deepest parts of me. I still worship him, I still find joy in seeing Him in the beauty he created around me. I still pray. But whenever I think of reading His words in the bible I want to run. I won't pretend to understand why exactly, but today in church I could feel the spirit prompting me back.

When I picked it up this afternoon I was about to start in Job. Misery loves company right? Instead I felt drawn to the Psalms. I have always loved David's raw honesty with God. He wasn't one to shy away from strong emotion, and today I feel full of those. What better place to start in the book but at the beginning. What I read may seem ironic to some, coincidental to others, but simply providential to me. Psalm 1: 1-3 says, "Blessed is the man who does not walk in the counsel of the wicked or stand in the way of sinners or sit in the seat of mockers. But his delight is in the law of the Lord, and on his law he meditates day and night. He is like a tree planted by streams of water, which yields fruit in it's season and who's leaf does not whither. Whatever he does prospers." The spirit prompted me to pick up His love letter, then immediately led me to a reassurance that He wants to give me deep roots through the living waters of his word to help me continue to grow even despite my pain. Only God.

It's been an emotional week. We took Grace's camper out on it's maiden voyage to one of her favorite places- Jellystone Park. The girls played joyfully in the water park for 4 days straight- with a little mini golf, arcade games, and time with Yogi bear thrown in. After Joy's second time down a water slide she got off the slide with her little 3 year old arms pumping into the air stating loudly and excitedly "This is the BEST- DAY- EVER!!!" It was a wonderful time overall. Perfect weather, lots of ice cream and not even one stolen picnic basket! But everywhere we went memories of Grace flooded my heart. Here's one of those many memories. The last time we were there with her she was about 5. She loved hanging out with older kids and whenever we were at the pool she would wander into a group of teens happily introducing herself and hanging around uninvited. They would be sweet at first, then look annoyed at this little kid who kept interjecting her opinions into their conversations. I would try to help them out by occupying her and encouraging her to let them be, but as soon as I would stop giving her 100% of my attention, she would rush back over again. The funny thing is that she would always win them over. Eventually they would invite her in and would play with her- actually having fun playing with the overzealous 5 year old! It happened over and over with several separate groups of Teens. Grace had such self confidence. It never occurred to her that someone wouldn't want to hang out with her. She was non-discriminatory about her friends. If you were human, animal, or pokemon- you were in. And she could find a friend and fun anywhere she was.

We got back from camping and went to Mae's soccer game as a family. She is so cute out there... still figuring out how the game works but trying as hard as she could to do her very best. She's so fast, and so proud of her efforts. Oh~ how I love that kiddo. But again, there was memories of Grace out on that field just last summer. Running despite the pain of her feeding tube and exhaustion from the harsh chemo treatments. She was a team player and was determined to play with her team mates unless she was actually confined to the hospital.

The next day on my way home from work I saw signs for our town's Relay For Life. We had planned on participating, but never got organized enough to find out when it was. So we quickly pulled things together and went to the event as a family, meeting up with my sister and her kiddo. Seeing so many people there and all the luminaries representing so many who have had to fight with cancer... it was overwhelming! We walked the track, lit luminary's we made in memory of Grace, and played some games with the girls. As we walked I thought back to the year before. We had been at a friends house on the day of the relay and drove by it on the way home. I wanted to stop with Grace and the girls, but my heart was broken thinking ahead to this year and wondering if we would be walking the track without her... praying for a miracle.

Yesterday the tears kept falling and I finally gave into hiding under my covers trying to escape the deep searing ache. I stayed there longer than I've allowed myself to ever do. I fantasized about never coming out. I did though... and went to see some wonderful friends who did my heart a lot of good.

Today's been 8 months. We spent time in Grace's garden, and Joe's been writing some beautiful poetry. I included one at the end of this blog. We got out of bed, let some tears fall and kept putting one foot in front of the other. Breathing in and out. Hugging Joy and Mae close and tight. We watched Star Wars- one of Grace's favorite movies. Tomorrow is another day that we will try to dance in the rain like Grace always did. We are not always as successful as she was, but she's a really good example to try to follow. Thanks for continuing to pray us through... and also for others who are living with a piece of the puzzle of their heart missing.

Don’t Fade

It isn’t fair that memories fade

I still hold you close in this heart that God made

A warm gentle kiss and a huge gleaming smile

If mischief could run it’d go on for miles

I loved when you came in for some snuggles

In the social department you never did struggle

Everyone was your friend and your heart you did share

They’d call out your name cause they knew that you cared

What a teammate you made, Even sick you played soccer

Wouldn’t let down your team, Each game you would conquer

Your laughter is missed and so are the sillies

Wish I could tease to hear “Oh Dad Really”

But each day that goes by memories just slip away

Please know that I love you right now here today

I have to keep writing so that you Don’t Fade

To just hold you close in this heart that God made

Beyond Words

It's been awhile since I last posted a blog~ again. I love to write, and I want to share, but thinking about sitting down and opening my heart to pain is something I tend to avoid. No big surprise I guess. It's easiest to just try not to think about anything. To leave my heart closed up and shut out the heartache... but it's obviously an impossible task, so maybe it's time to confront it head on.

Many people have encouraged me to write a book about our experiences over the last couple years. I've decided to start the process and see where it leads. Our little family has seen more than our fair share of challenges over the last 10 years or so. Maybe we've learned some things along the way that can help others. Maybe in telling the story we will find some resolution or purpose in what seems on the surface just to be a chaotic wake of tragedy. Maybe God can use this to bring good into someones life or bring them into a relationship with Him. If so, then it will be worth opening up my heart and risking a little. Wish me luck :)

Like most people we have had a really busy summer, and are living the classic mid west itinerary of packing as much as humanly possible into the few decent months of warm weather we get here. We've been to the zoo (one of the girls favorite places on earth!), gone to the beach, and done some camping in Grace's last gift to us. We've been working hard on Grace's garden and just have some finishing touches to put in (mulch & a campfire ring). It looks wonderful and we love spending time just hanging out there as a family. Last week Mae went to camp for the first time. I went with her and was the camp nurse for a few days. Thankfully no one got hurt too badly and I spent most of the time passing medications and patching up skinned knees, elbows and pulling out bee stingers. :) It was fun though. I got to meet a lot of sweet kids and it was such a cool opportunity to see Mae interact with other kids her age without being in her way.

Speaking of Mae, she started soccer practices this week. It's been bittersweet. It makes me ache for Grace. She loved playing soccer (although it was more for the love of her friends than the love of the sport), and I wish I could see her out there running and laughing and playing too. It's so amazing though to see Mae showing confidence, working on fitting in with friends and having fun. She is so excited to play, but I worry a little that she might feel she has to do things (like play soccer) just because Grace did. When getting ready for practice she wanted to wear Grace's soccer socks and her shoes and her soccer tee. I think she just looked up to Grace and is wanting to emulate her but I hope she feels like she is good enough just being the amazing kid SHE is, and not like she needs to try to fill Grace's empty shoes. Pray for this if you think of it. I know losing Grace is affecting the girls in ways we cannot see and I want them to be happy and filled up despite missing their sister. I know we will need extreme wisdom as parents to see the hurt they experience related to their own personal loss and know how to help each of them through it. It's a tall order, and I'm thankful we are not in it alone. Thanks for walking with us down this road.

Joe and I are getting though a day at a time. It's still ridiculously hard. If you know other families who have lost a child too soon, think about sending them a note or giving them some encouragement. This is a pain that is deep and wide and long suffering. They will need your love and understanding for a long time to come. An acquaintance asked me the other day, "So you got through it all OK then?" I was surprised at the visceral reaction I had to the question that was asked rather flippantly. NO! I am NOT through it... and I may never be OK again! I constantly have to filter what people say and see what they mean. I'm sure she wasn't try to be insensitive. How could she possibly know how it feels to experience such profound loss if she hasn't had to in her own personal experience? Maybe she assumed 7 months was enough time to recover and move on? It clearly is not. OK, sorry for the tangent. I'm still working on getting beyond words.

Beyond little earth

For obvious reasons my mind is more consumed with heaven than ever before. What must it be like? What will we see and experience there? I love the bible verse in Romans 1:20. It says, " For since the creation of the world, God's invisible qualities--his eternal power and divine nature--have been clearly seen, being understood from what has been made, so that men are without excuse." What things in your mind leave you breathless when you see them? For me it's the brilliant colors in a rainbow, a sunrise, sunset or the contrasting light and shadows at dusk. ‎The soft sweetness of a baby's lips. The majesty of mountain peaks rising up from a deep valley gorge in between. A vast ocean that stretches so far beyond the shoreline that the horizon gets lost. The stillness and beauty of a woodland dripping with pieces of light through the canopy above. A sky filled with a constantly changing canvas of day and night and stars and sun and clouds. I feel like these wonders are glimpses God gives us into the indescribable perfection of heaven. I find myself more tuned into seeking out and exploring those times in God's creation, seeking to know Him better through the beauty He created.

Yesterday, church friends of Grace's gathered to paint rocks to have put in her memorial garden. They shared memories of her while painting the rocks, and after the meeting they came outside and encountered a rainbow. We saw it too! There's a picture of it below- the view from our living room window. Rainbows. A prism of color that happens at the point where storms and sunlight meet. Where life and God meet. Those kids at church saw the significance of a rainbow after time spent thinking about their friend. So did many others. Several people sent me pictures of rainbows yesterday, saying they remembered.... that thanks to rainbows they always would.

I think I mentioned this book before, but it was given to me to read not long ago and I loved it so much. It's called "Heaven is for Real", by Todd Burpo. Pick it up if you can. It's an easy read, but spoke to my heart in such a profound way because it's about a little boys experiences in heaven. It's not the bible, and for that reason needs to be read with that in mind.... but it was such a beautiful account that brought me such joy thinking about what Grace must be experiencing in her new reality. To be surrounded by our earthly glimpses of God's splendor all the time. Hollywood depicts heaven as white and peaceful. I suspect it is more colorful than anything our minds can fully conceive. The bible supports that too. Streets of gold, a crystal sea, comparing heavenly colors to rainbows, emeralds and sapphires. It's gonna be so good!

I'm off to work on Grace's Garden today getting help from my uncle and hubby to finish off the landscaping part of the project. Soon to plan flowers! I'll post more pictures in the next couple weeks. Enjoy the gifts God has given you today.

Beyond Enough

This blog entry is a bit disjointed but that is how I feel today.

Thank you for those of you praying for little Michael. He joined Grace last night and is exploring heaven today. Keep his family left behind lifted up before the God of all comfort. As they say their last goodbyes on earth and honor the short life he lived here. This world of childhood cancer is so ugly. Too many put in the ground. Too many who have won the battle for now, but at a very high price. Too many families torn up and left with questions only God himself can one day give an answer for. Please, stay on your knees for them.

Grace's garden is expanding. I added a bleeding heart given to us by a friend, and bought a rainbow of Iris' to come up next spring. (Did you know the Greek meaning of iris is actually "rainbow"? Cool tidbit.) We also put in a small water fountain yesterday. When we started it up Mae burst into tears. We couldn't decide if she was weeping or laughing, but when we asked her why she was crying she said, "It's just so beautiful!", while she clung to my leg, tears streaming. She often talks about how much Grace will like the garden. Yesterday she pointed at a cloud above the garden and said, "Maybe she can see it from there?" Bless her sweet soul. Here's a garden preview...

We try to find fun where we can and last week I took Mae and Grace's best friend to their first concert.... a boy band called "Big Time Rush". It was hilarious to see so many girls screaming and clamoring for a closer look at their crushes. I also got to introduce them to their first wave pool that day. Such little things mean so much more than they used to. A sunny day, good health, giggling girls, some music and water. The ingredients to a near perfect day.

Our little Joy is just that. She keeps me laughing in unexpected moments every day. She has the spitfire spark that was in Grace's eyes, but the sweetness of Mae too. She loves to sing and has learned how to change the words to a tune (thanks to daddy), giving a running description of the world through song. Our kids are such a beautiful gift.

I wish I could pull all 3 of my kids and Joe into another family hug. I wish I could dream of Grace. I wish I could complete a single memory of her before jumping to another and another. I wish I could cry more... and less. I wish I didn't feel at the edge of sanity in some moments and feel nothing at all the next. I wish I could stay in moments of joy for whole hours at a time. I wish I could get off this roller coaster. But I can't. I'm reminded the reason we wish for more than this life is because this is not our home. We are made for eternity. This will never be enough and that is a good thing. The longing in our souls gives us incentive to reach higher, love deeper, hold tighter and give freely.

These are my rambling thoughts for today.

Beyond Goodbye

It's been a long time since I posted anything new. Sorry. My heart just hurts so much sometimes it's easier to try and avoid the pain. Our Grace has been gone almost 6 months. Are you kidding me? It could have been yesterday. Most people would think the pain would be better by now, and truthfully in some ways it is and in other ways it's worse. I don't feel like I'm being torn in two every second of every day anymore, but with each day that passes I miss her more deeply. She feels farther away and I feel a little panicky if I let myself go there. I tear up unexpectedly when I catch a glimps of her on someones past face book pictures, or see a picture of a rainbow, or stumble across something of hers under the couch or behind a closet door, or in a bathroom drawer. I always leave those things there. Even though it makes me sad to see them, they are constant reminders that she is still a part of us and always be. I don't want to put any more of her away in a trunk or closet or garage. When I miss her too much I start to worry about her. The worry is like little weeds growing among beautiful flowers planted by God. They try to make their creeping roots deeper and take over the soil of my heart. They want to choke out the good God wants for me and destroy the joy God intends me to experience in life. I have to keep going back to the truth God has laid out in his word... that she is safe, and well, and happy, and healthy. Her body is buried under several feet of dirt in a quiet place where the wind whispers secrets and the sun shines full on her sparkly blue stone, but her spirit is free and living loud with the heavenly hosts. I feel myself relax and find air able to enter my lungs again. I'm beginning to fully realize we will never get over this, and pray for God to walk us though it the rest of our days here on earth.

In the last several weeks we have done many things as a family to remember our girl. We attended a memorial service with too many other families also going though the grief of loosing a child this last year while at Children's. Mae (our 7 year old) cried at the service. She's only cried a few times since Grace died, and I imagine it was good for her to see other brothers and sisters who had lost a sibling this year. To know she's not alone in her feelings and loss either.

We recently made a purchase in memory of Grace for our family. The last benefit blessed us enough to nearly break even financially after a very difficult time during Grace's long illness. Thank you again to all of you who were a part of that event. We felt so loved and even though it was a bitter-sweet day as she had just joined Jesus a few weeks before, it was such a testament to the many lives her life and story touched. Since our financial needs were met by the benefit, we used what was left of her life insurance after paying Grace's final expenses to buy a camper for our family. When Grace had first talked to the Make-a-Wish people she knew what she wanted. A camper. For ALL of us to enjoy and to be able to spend time together. That girl loved everything about camping. The camp fires, the getting hot and dirty then jumping in a cool lake, watching movies when it was raining, running in the woods, climbing trees, and sleeping "outside". The Make-a-Wish people talked her out of a camper and into a Disney trip, which was such a good thing. Had we gotten the camper at that time she never would have gotten to use it. Instead, we went to Disney World and she had the time of her life just 3 short weeks before she took her final earthly breath. So.... recently we honored Grace and bought her camper and took our family out for a trial run on the Memorial Day weekend. It was painful and wonderful. We should paint her name on it... and there will be more pictures of her on the walls in it soon too. We have several camping trips planned for the summer, and each time will thank Grace for such a beautiful gift.

We've been working hard on a garden in our backyard in memory of Grace. The money for all the flowers and shrubs was given to our family from Grace's 4th grade friends mom's specifically for a garden. I continue to stand amazed at peoples generosity and compassionate hearts. It will be beautiful but has been a ton of work and there is much still to do. So far it includes "Happy Return" Day Lillies, a "Superstar" Spiria bush, "Wine and Roses" Wigelia bushes, Miscanthus Flame Oriental Grass and a "Paul's Glory" Hasta. Most of the flowers will be in the pink/ purple/ blue hues as those were Grace's favorite colors... but all the colors of the rainbow will be represented somewhere too! The retaining walls are up and an angel statue is seated in her new garden home. I'll post some pictures here soon. My God-daughter celebrated her 10th birthday today. Grace and her were just a few months apart in age. Being the sweet heart she is, instead of donating her birthday money to the food shelf this year she wanted to give the money from her party to us to buy something for Grace's garden. Such a beautiful gift from a very special girl. Happy Birthday, honey. We love you and there is no doubt that your Mom and Grace had cake together today in honor of your birthday and were very proud of your generous heart.

Thank you to each of you for your continued prayers and for continuing to follow our journey of finding some measure of healing. I ask that you also pray for a little boy named Michael and his family. He is a 5 year old with the same cancer Grace had. Short of a miracle, he is nearing the end of his earthly journey and it just crushes my heart. Pray for his mom and dad and brother too. They will need God's tender love and comfort in the weeks or days to come and for the lifetime of healing following. I know that prayer makes a difference. We felt them during those darkest days walking Grace "home", and I know people from all over the world read this blog. The USA, Estonia, Singapore, Australia, Canada, Austria, United Kingdom, Guatemala, Denmark, India, Netherlands, New Zealand, Germany and others... please join us in lifting this family to heaven as they walk through and go beyond goodbye.

Beyond my circle of friends

I was recently at a retreat with many of the women from my church and was again reminded of the absolute importance of friendships in our lives. Where would we be without them? Our journey with Grace would have played out much differently had we not been supported the way we were. Each person who encouraged us along the way (and who still are) were undeserved and deeply valued.

Some people are easy to love. Some are more challenging. Why the difference? As a general rule I would say the people we encounter in life who are the most difficult to love are often the ones who most need it... the one's with a painful past, difficult circumstances and challenging mountains to climb. Jesus had close friends in his disciples but also went out of his way to spend time with those some may have seen as unlovable. A tax collector, a prostitute, a broke widow, some annoying kids...

On Sunday we rushed out of church to get to my mother-in-laws in order to spend some time with her before heading back to my grandpa's to celebrate mothers day there with my mom. As we drove though a really busy part of town we passed a young woman who was walking on the side of the road. Her hands were covering her face and it looked like she was crying. She was too thin, had piercings, dreadlocks and no belongings. There was no where to pull over where we saw her, and after we had passed her Joe asked if I saw that she was barefoot. I considered pulling over but we were in a hurry and I kept driving. We pulled into a drive through for lunch on the road and as we pulled out again a bible story slammed into my mind.

There was once a man who was also walking along a road. He was mugged, beat up and left for dead. Several people passed him on the road. A spiritual leader, a doctor, those who you would have expected to give a helping hand. But they were all too busy and self motivated to go out of their way. In the end a man who was least expected to stop did, then went way above and beyond what would have been expected of his station.

I had driven by her. As we pulled out of the parking lot I backtracked. I didn't figure there was any way she would still be there. The area where she was walking was so busy! Someone must have stopped to help. No one had. We pulled up behind her and I got out of the van and called to her. She turned around to face me and as I saw her face for the first time I wanted to weep. She looked so lost, so deeply hurt, so alone. I asked if she was OK, and if she wanted a ride somewhere. She managed to nod yes then broke into sobs. I didn't now what else to do so I hugged her. She told me a bit of her story and said she was trying to get to her parent house, but that they had kicked her out awhile ago. "I don't have anywhere else to go". I gave her a ride after asking if it would be a safe place. She opened up about some of the pain in her life on the way. When I asked, she told me she had already walked 2 miles (in bare feet while crying). Hundreds of cars had to have passed her. No one stopped to help. Why? Really? Then again I drove by too....

Even she was surprised that I had stopped. She said "Thank you. There aren't many people who would have pulled over to help out someone like me." Apparently she was right. I gave her my number when we got to the house and told her to call if she needed a place to stay... that we'd figure something out together. I asked if I could pray for her. She shook her head no, and I said that was OK. She started to get out of the car after thanking me again. Then she stopped and looked back in to look at me. "My name is ___". I maybe didn't pray with her in my car but believe me I haven't stopped praying for her since she told me her name. I'm not sure if I helped her as much as she did me.

Our friends are so important... but there are those outside our circle that need love too. I'd challenge you (as God has challenged me) to ask God to help you see those around you with his eyes and his heart. Maybe he wants to use you to encourage someone who needs it, or give hope to someone feeling hopeless. Helping that girl took me all of 15 minutes and a little extra gas. Maybe it was worth more to her than that though. I hope so.

Beyond Purpose

Good Friday feels different to me today in light of our experiences this last year. In December, we watched our daughter die. Day after day we sat next to her and silently pleaded with God to change His mind, to give her back, to take away her suffering. Our grief at her loss is at times overwhelming and can leave us emotionally naked. Last night on facebook I watched a video clip posted by a friend from the movie "Passion of the Christ". For most people I think the events of the day Jesus died are mostly an intellectual experience, something we can try to imagine for the sake of understanding and appreciation but something too big to really get our heads or hearts around. We get stuck in the phrases "died for our sins", "suffered on the cross", and "rose again". We hear it a zillion times and the words lose something in the repetition. As I watched that clip and saw the brutality and hatred taken out on Jesus body I nearly threw up. I shook. My mind spun. That was my best friend they were destroying. That was the one who held me in the darkest moments of this last year who was experiencing the utter loneliness of knowing the face of God turned away from him in that moment. It was my Jesus that chose to ask for forgiveness for the very ones who were inflicting his overwhelming pain. He chose to stay in that mind shattering experience of pain for me. I watched on the video as his mother Mary looked on in anguish. I realized that God only turned away because he had no other choice. How could He not sweep in and rescue Jesus if He continued to watch it all happen. I think He turned away from the cross to look at us. To see our faces and our utter hopelessness without the suffering of His only son. To remember the purpose and the plan of Jesus coming to earth in the first place.

Grief brings me closer to an understanding of Gods sacrifice. To the experience of God's separation from His son and Jesus endurance of extreme suffering. Sometimes we feel that God doesn't understand what we are going through in life. We question why God would allow suffering and pain and loss. But these experiences are something God & His Son understand intimately. I may not always understand His purpose for allowing things to happen the way they do... but I will trust Him. Today I am deeply thankful for Good Friday, for forgiveness of sins, and for the bridge the cross makes to heaven for anyone who receives the sacrificial gift. Because of it, today my daughter is with God's son.

Beyond No's

Joe and I were talking last night about how we wish others could see the way God has been faithful during the trials we have had to face in life. Over and over we have seen His hand at work, even though so often it was during the hardest times. The following is the story of Grace's beginning, and how even then God was gifting us with glimpses of His plan.

We dreamed of Grace long before she came to be. We tried for over a year to conceive, and every month my heart sank when I realized it would be another month before we had another chance. My father in law had cancer at the time and as he got sicker we started spending more time out with them to help out. As he moved into hospice services we moved in with them to help to care for him at night. One night while everyone was sleeping, Canton and I were talking about our wanting a baby. He was so tired and the conversation only lasted a couple minutes. Just before he fell asleep he asked me, “What if God says no? Will you still trust Him?” I couldn’t respond. It was like I had been struck over the head by a fallen tree. What if God’s answer was no? Tears rolled down my face as I watched Canton sleep for another hour. Resounding in my heart through the searing pain, I kept answering over and over in my heart... “Yes, I will trust Him. I will always trust Him.”

Canton died just a couple days later. That conversation was the last we ever had. At his reviewal, Joe's cousin approached me asking if I was pregnant. Of course the question was jarring and left me feeling a little overweight. Amy said she had a very vivid dream in which I was playing with a little girl with brown hair who was laughing. She said she knew that it was my little girl. I thought, well maybe God is testing me. Or maybe He is giving me hope for the future. I wiped a tear away and said, “No, I’m not pregnant.” A couple hours later Joe’s sister approached giving me a big hug. “Hi, Annette. I just had to tell you about a dream I had the other night. She went on to tell me that in her dream I had a daughter with brown curly hair who was playing with another little girl who she felt was her daughter (although she did not have children yet either). Are you pregnant?” “No", I said, "but I’m a little freaked out!” I went on to tell Susie about the dream her cousin had just shared.

On the way home I was telling Joe about the strange questions and conversations at the reviewal. “Well, could you be pregnant?” Thinking back, I was a little late, but with the current circumstances of stress in my life wasn’t surprised about that. Besides we’d only been home once in the last month and a half to “do laundry”. After actively trying to get pregnant for a year, it seemed unlikely that the one time we weren’t trying I had gotten pregnant.

The funeral the next day was a wonderful testament to the amazing man Canton was, and the life of service to God he had led. We went to bed that night utterly exhausted... physically, emotionally and spiritually. The next day I couldn’t get the conversations at the reviewal out of my head, so I snuck off to the store for a test. I snuck it back in and couldn’t get into the bathroom fast enough. It was positive. I think I read and reread the package insert 5 times. Positive. Pregnant.

My sister, Alisa was living with us at the time and I got to share the news with both my husband and sister at the same time. My heart soared and I said a little thank you to Canton, for helping me realize that even if God had said no, I knew my answer back would have still been yes.

In the end, our journey with Grace brought us full circle, and back to the original question. When she was diagnosed with cancer and the treatment did not work and our prayers for healing came back as a no... again the question resounded. "What if God says no? Will you still trust him?" Through the pain wrenching at our hearts, we looked back over the evidence of God's presence in the journey of life and there was no other answer but the one that kept repeating in our hearts, "Yes I will trust Him. I will always trust Him".

I'm reading back though the caring bridge journal entries and there was so much I left out. But I will tell the stories as long as you'll listen. There is so much still to learn from it all.

Beyond Winter

The sunshine and warmth of the last few days have melted the stubborn remnants of snow in our yard and the ice on a nearby lake is even giving way to sparking ripples of moving water. After such an emotionally and physically exhausting and never-ending winter, with spring comes a feeling of new beginnings and hope renewed. We've already been barbecuing most of our meals and have taken the girls to the park several times. I pruned the bushes to make room for new growth and cleaned up the straw from our manger scene in the front yard. The trees are budding and our grass is almost green. Ah, spring.

We plan to create a memorial garden in our backyard soon. I have an idea in my head of what I hope to do and am excited to get started on the landscaping we have to do before we can put the flowers and bushes in. There's something healing in doing something physical with pain. With creating a thing of beauty to replace the ugliness of the memories around cancer and loss. I think this garden will be a start. It will be wonderful to have a place to go to reflect and remember Grace and the lessons we learned in the short time she was ours to hold. But wish us luck. It's a big project.

Even with the beauty of spring, I'll admit it's still hard to move forward. I feel kind of guilty for not sinking into a deep dark hole... one that very realistically wants to suck me in. I've heard of mom's who after losing a child become deeply depressed, hopeless and in need of some serious medication. Part of me thinks "Wow. They must love their child more than me. I laughed at a nonsensical joke my 3 year old told me this morning and enjoyed the warmth of the sun on my face this afternoon. My heart soared as I heard a song on the radio and couldn't help but raise my voice with it praising God for his love and mercy." Knowing where Grace is right now makes the ability to move forward possible.... and only that knowledge. I just finished reading a book called "Heaven is for Real" by Todd Burpo. It's about a boy who almost died just before he turned 4, then later started sharing with his parents about his experiences in heaven. In his childlike way he shares about sitting on Jesus lap, meeting family members who were there and many other things. I've never doubted the existence of heaven but this book really made me think more about what it must be like for Grace right now. She is alive! Not in the grave we put flowers on a few days ago. Not in the still cold two dimensional photos hanging on our walls. She is laughing and playing in the very presence of God. I can miss her, and I do so much it hurts. But to waste the rest of my life by allowing darkness to hide me? Grace would be so mad at us throwing away such a God given gift. Moving forward is the only direction we can go.

I recently came across these pictures from Grace's baptism. It brought me back to the wonder of watching her faith develop. She asked Jesus to be her Savior and Lord just before she turned 7. It was cool because for a couple months you could tell she was thinking about God and how He really fit in to her life. For awhile she said she didn't believe he was real, but she kept asking questions and we just tried to answer as simply and truthfully as we could. I never wanted to push her to believe... it had to be driven by God himself. Then one night before bed she told me she knew God was real and that she loved him. We talked about how God could be a part of her by asking Jesus into her heart. She said she really wanted that so we prayed together. When she was 8 she started asking us when she could be baptized. We'd never really talked about baptism with her before. I honestly thought she was too young to get it, but she kept bringing it up. None of her friends at church were doing it, so it wasn't peer pressure. It was the holy spirit in her prompting her to show the world her love for Jesus. So in September 2009 she followed her heart into Forest Lake and our pastor baptized her. She was so proud on that day.

It was only a month later when we learned she had stage 4 cancer and our world was flipped upside down. Grace told us the night before we went to that fateful doctor appointment that her "cancer hurt". She already knew. The holy spirit was whispering in her ear, preparing her for what was to come. You know, through everything she rarely complained. She found joy in everyday things and loved life. One day in the hospital she was sweating and feeling shaky while getting a really nasty chemotherapy. Instead of worrying about it (which I was at the time) she thought it would be cool to see what she could get to stick to her bald head. She managed a piece of paper, a plastic spoon and several other things sitting on her bedside table. The gift of the holy spirit gave her the ability to trust and deal with her reality. The faith of a child is such an amazing thing to see. There is no "junior" holy spirit, or "junior" faith. Kids get the real thing... in fact I think they understand the love of God more fully than we do. No wonder Jesus has a special place in his heart for kids.

Beyond a Suit of Armor

Sorry I haven't written in awhile. I work through things while writing that I don't seem to manage in any other way, but the process hurts andsometimes it's easier to just avoid the pain. I was ready to write about a week ago, but then our computer crashed. Good news is we didn't lose any pictures or videos. My free advise for the day... back up your digital pictures! Onething I realized this last week after a conversation with a teacher at school is that in my closing the caring bridge site many of you did lose pictures. Caring bridge was where you went to "see" Grace. So today I'll post a couple pictures with the blog so you can see and remember her whenever you want to.

Yesterday I got to work in tears. My friends at work seemed surprised at them. Confession time... anytime I get in the car alone I cry. So does Joe. There is something about being alone without distraction that makes a chink in the armor we so carefully try to keep on at all times. Armor of protection containing the hemorrhaging wound in our chest where Grace used to be. If I see you out and about we will exchange the customary "Hi... How are you's?", and I will say fine and smile. But that is not the truth. If I answer that question honestly the armor will crack and I will start to bleed. The tears that fall will have nothing holding them back and you will be left gaping in isle 3 wishing you had never asked the question. This hurt is deeper and more consuming than I ever could have imagined. Sometimes I get angry that the world just keeps rotating, that people keep rushing by in an effort to go... where? Shouldn't the world have stopped spinning the day Grace took her last breath? She's only been gone 115 days...

I wake up without her here. I go to bed after only being able to see the pictures containing her image. The house is missing her noise, her breath, her hugs, and laughter. I know she is having the time of her life... but I will never be the same.

Of course time moves forward and the world keeps spinning. My husband, and 2 beautiful girls will continue to need me to be present here and not give in to the all consuming hurt. I will laugh and find joy in things. My life is not over, and I will move forward. In sharing this today, I don't want anyone to feel like they have to tip toe around me to keep me from falling apart. Truth is (in a public setting anyway) the armor is usually pretty strong. I know several people who have lost children lately and I think it helps those who love them to understand a glimps of what they are going through... the profound loss they experience. It does not go away in 115 days, or 2 years or a lifetime. I will only be whole again when all of us are holding each other in a heavenly family hug. Until then I will be working hard on keeping my armor intact.

beyond painful memory

I feel a bubbling up of something in my heart, but can't quite check it's pulse. I'm yearning for more in life... can feel it reaching out with fury and wonder. Maybe these times of yearning are a response to whispers from heaven, messages to our very soul urging us to dig deeper and find a more fulfilling existence. To catch hold of God's purpose for each of our lives... that purpose which will leave a lasting impression on the world we will someday leave behind.

I want to create, to dance, to paint, to run, to hold, and to write...

The whispers have been speaking to me of seeking out God's beauty and his love in the world around me. To living each moment to it's fullest potential. To find joy in the everyday experiences we've been given. A friend who read my last blog entry (beyond busy), gave me a book called "one thousand gifts", in which the author describes her journey in learning a similar life lesson. I have a lot of the book left to go, but it is speaking to my heart and I feel God has brought me on the same road of discovery.

It's been 3 months since Grace died. Three months since I laid beside her in bed, cradling her head and kissing her cheek. Three months since I startled awake in her room. Knowing before I put my ear to her chest that she was gone even though she was still pink and warm. Three months of seeing her too still body lying on the bed, life and pink and warmth draining away beneath my hands. Each memory of it bringing an ache I cannot describe or even fully comprehend. Joe struggles with the memories of the final weeks of her life. Reliving the horror of watching her struggle to find breath, to suppress the torrential coughing. I remember, but for some reason don't live there. Instead, I am plagued by her final moment, although peaceful... the realization that she was lost to us. That our arms will be empty of her until we see each other again on the other side. That last day I was relieved that her struggle was over, but I can't get the picture of her on that bed... so still... so silent... out of my head.

The whispers of heaven to my soul... the yearnings of my heart for purpose... the seeking out of joy in each moment, so intermixed with grief and pain. I realize that when I think of death now, my first thought is of seeing Grace and having her introduce me to Jesus in the flesh. Fully alive, dancing and loud. The amazement of that moment gets me though any fear of one day dying. In the meantime, this earth journey continues as I look into the baby blues of Mae and Joy. The security found in Joe's arms. The peace I find in the art of a woman called Joy hanging on my living room wall. The beauty in the uniqueness of each snowflake creation falling outside the window today. The soul stirrings to look intentionally for the good and pure around me. So much to learn... but I am seeking and finding God's gifts of beauty beyond the pain on this journey.

Beyond busy

I didn't realize how much of life I have always taken for granted. People say things like stop and smell the roses... but come on. Who has that kind of time, energy or focus? Grace's life has been teaching me that each day on this earth is a gift given by God Almighty to be completely savored. We miss out on so much as we run through life, passing it all by.

I get inpatient with my kids. I have places to go... things to do! I tell them to get in the car and they wander past the door and gleefully jump in the snow, look at a rock stuck in the ice, or scrape picture patterns into the windows made by crystals. It makes me crazy (and late) but I am starting to realize they may be onto something...

I drove to Red Wing, MN to meet up with two of my closest friends from high school a few days ago. It was snowing (again), and at first I was annoyed and even a little worried. The roads were slippery and I was following map quest (not always a pleasant experience). I had the radio playing and about 45 minutes into the drive my soul started to settle into worship. It was then that I realized the snow falling around me was beautiful as the sun would peak out from time to time literally making the air and rolling hills around me glitter and dance with brilliant white sparkles. There were trees far off on the horizon separating earth and sky which otherwise would have appeared one in the same. The road would ebb and weave and because of the weather I rarely saw another car... I had the world to myself, the only one enjoying the show. I drove under a series of large oak trees leaning over the road. Each one a stark contrast to the brilliant white all around. Each branch an intricate design of lines and interwoven patterns. The trees seemed to be reaching out over the road instead of growing upward, as if they were trying to provide protection for those beneath. I hardly realized I was slowing down or looking up, and was surprised when my hand hit the ceiling of the car. I was so intrigued I had forgotten I was driving and actually expected to touch the branches far above me. The shock of the abrupt stop brought me back to reality and away from the trees and the tear that had formed in my eye. I laughed at myself but in the same moment thanked God for the reminder that each breath in this world He created can hold beauty if we chose to really see it.

Romans 1:19-20a "For since the beginning of the world, Gods invisible qualities- his eternal power and divine nature- have been clearly seen, being understood from what has been made..." When is the last time you stopped to really smell a rose, see the reaching arms of a strong oak on a winter day, feel the warm sweetness of your child's kiss on your cheek, taste the tingling of a fresh strawberry on your tongue, or to hear an unseen bird sing you a song? There are fingerprints of God's love for us everywhere. Life means more when I realize I can chose to truly live fully in each moment. Join me in exploring the world with new eyes today.