Beyond Autism

I was watching the news tonight and heard they are looking at changing the definition of autism to be more specific. Right now the spectrum for diagnosis is pretty wide, and because the incidence of autism in kids seems to keep rising, there is concern about funding support for all the kids who currently qualify or will qualify for services in the future.

As a mom of 2 kids on the autism spectrum this peaked my attention. Malia (5 years old at the time) and Madi (2 1/ years old) were both diagnosed with forms of Autism on the same day in 2006. Next to hearing Malia had cancer, it was one of my worst days ever.

Malia has always been a challenge in terms of parenting. She was one of the most active kids I've ever known. She was incredibly smart, yet so often when her behavior was negative I had the distinct feeling she couldn't help her responses, and sometimes it seemed like she really didn't understand why she was even in trouble. There were holes in her language skills, and often we couldn't follow her logic at all. It was like were were both talking to each other, but were having completely different conversations. Her testing was extensive. In the end they said she had PDD (Pervasive Developmental Disorder). It's a high functioning form of autism, where kids process information differently than most kids but have the ability to compensate for many of those processing problems. My guess is these are the kids that would have more difficulty qualifying for services under the new diagnostic criteria. Malia really needed some extra help for awhile. She graduated from special education by the end of 2nd grade because she had come so far, but I doubt she would have done as well without the special support she got with those programs.

Madi was always my soft and sweetly sensitive girl. She was tender hearted and cried easily, but otherwise was happy. She would eat what we gave her (although she always made a huge mess with her food), she didn't care when we said it was time to be done eating either. She played with whatever toys were around... her favorite games including spinning in circles, watching her image in the mirror, lining up toys across the room, and putting toys into a container in order to dump them out all over the floor. She didn't say much (and she didn't have to! Malia always spoke for her when we asked her a question!) By the time she was 2 1/2 I finally realized how little she was actually saying. I counted her words. She had 5 of them. Mama, dada, bye, bed, and Nana. I then realized she never asked us for anything. Never pointed to tell us she wanted something. Never pulled our hand to show us something she found funny. She screamed if Malia took something she was playing with, but never asked for help or could tell us what was wrong. She would come up bleeding, not realizing she had hurt herself. Then she lost the word Mama. It just disappeared. I took her in for an evaluation. She was diagnosed with classic autism, and as they did more testing we came to understand how much of the world she didn't. She didn't understand English. Couldn't follow simple directions, couldn't identify an everyday object like a spoon or cup. She was lost inside herself and living in a world that she could not make any sense of. It was a devastating realization. Desperate and in denial we got a second opinion from Children's. They agreed that she was autistic, and it took just moments of evaluation to concur. I kept wondering how I could have missed it for so long. I agonized over what we could do to help her.

Madi immediately started in special education preschool, speech therapy to begin learning building blocks for speech, and physical therapy to help her coordination and build her muscle tone. Occupational therapy tried to teach her how to use a spoon and fork. I cried for several months. we weren't seeing any change after the interventions we were doing started looking for additional options. At that time there was little public information about autism. Since then it's become a cultural buzz word and thankfully there is much more known about the challenges these kids face. It took some digging at the time though. The information was overwhelming. There were dietary options, different therapy modalities, OT, PT, Speech, etc. I spent endless hours trying to find the best fit for us, and decided ABA Therapy was the best approach for Madi. It was a radical decision requiring a lot of effort. 6 days a week, 6 hours a day for more than 3 years therapists came into our home to work with Madi one on one. When they weren't there we were working with her to reinforce what she was learning in therapy.

Here's the basic premise of ABA. One of the first things Mae learned was to identify a spoon. She would sit at a little table and a spoon would be put on the table in front of her. The therapist would say "spoon". The spoon would be removed and replaced stating "spoon". This would be repeated several more times. Next the spoon would be placed on the table and the therapist would say "Touch spoon". (Madi would do nothing). The therapist would take Madi's hand in theirs and guide it to the spoon. When she put her hand down again, the therapist would say "Touch spoon". (Again Madi would just sit) and her hand would be guided to touch the spoon. This process would be repeated until Madi would start to make a motion toward the spoon with her hand independently when given the instruction to "touch spoon". By the time she would start to move her hand though she would get lost and didn't know what to do next, so the therapist would direct her hand to the spoon and repeat. As she was able to do more, the prompts were removed until she could complete the direction to touch spoon. It took her 3 days to be able to follow that one command. (with breaks every 10 minutes or so and a break for lunch, snack etc). I was happy to see progress though until day 4. The therapist sat down on the floor and sat Madi across from her. She took out the same spoon as the day before and placed it in front of Madi. She instructed "Touch spoon". Mae stared blankly and didn't move. The therapist got her attention, repeated the command and directed her hand to the spoon. It took 3 hours for her to complete the command independently. The next day the therapist placed a fork alongside the spoon. "Touch spoon" she said. Madi looked completely confused. She couldn't find the spoon when the fork was beside it. Another 6 hour day working on all of the lessons from the week. You see our brains are extraordinary. Each part does different things, but normally the areas of our brains work so seamlessly together we don't realize each part of our processes are separate parts working together. Madi had to learn everything separately then learn to put it together. She had to learn what a spoon looked like at a table, on the floor and next to another object. Later she had to learn that when she said the word spoon herself that it was associated with the object she knew as spoon when someone else said it. Yep- it was that complicated. It was such hard work for her. It was heartbreaking for us to see her work so hard and get so frustrated and to see such painfully slow progress. But she did make progress. In a little over a week she could consistently touch a spoon when instructed. Next she learned fork, while continuing to work on spoon. That took a little less than a week to master. Next came bowl, and cup. In a month she could touch anything at the table if I instructed her to. She was able to learn, and as she learned more the pathways in her brain moved faster and with less effort. Within a year she could learn to identify a new object in a day, and retained the information she learned more reliably. She had to be taught spacial relations. What does behind mean, or in front of. She was 3 before I realized she did not know the names of the rooms in our house. We spent a week on helping her find an object in the bedroom, bathroom, and kitchen. Imagine having to teach your child every little thing. They are not able to assimilate anything from their own environment. That was our life with Madi until she was almost 6 years old. By then she had come so far that we began to see she was learning things the way other kids do, just from observation and imitation. She was starting to communicate verbally. She could tell us when she was crying if it was because she was hurt, or mad or sad. It felt like a miracle, and in some ways it was. Her lead therapist said she had never seen another child go from Madi's original state to where she was in such a "short period of time".

We stopped ABA at the beginning of the summer Madi was starting kindergarten. She was 6 with a June birthday, and Malia proudly helped her on the bus and to her classroom that first day of school. Madi still had special education and speech support, but was in a normal classroom without a para and was thriving. Malia watched out for her little sister at school and it was such a blessing to see the two of them race off the bus together each day. Life felt almost normal for 2 months. It was that October that Malia was diagnosed with cancer and our life shifted from fighting to overcome Madi's disability to fighting for Malia's very life.

I am so proud of my Madi. This year she has aced most of her spelling tests, and excels in math. She still struggles with some language comprehension, and for this reason peer relationships are more challenging for her as she gets older, but she is also gaining proficiency in language every day. Tonight at the supper table she prayed and thanked God for the beautiful day and that someday we can see Grace again in heaven. At one time we agonized over Madi's future, now we can see it for all the possibilities it can hold. She will likely never be "normal" (is anyone, really?), but she is and will always be amazing. I can't wait to see where God brings her. Beyond autism, she is who God created her to be... and she is our beautiful blessing.

Beyond the Ability to See

I was watching Ellen on TV a few days ago. I love her. She is so stinking funny. She is generous and entertaining. She appreciates great music and makes people smile. On the show I watched as she surprised an unsuspecting family from the audience struggling financially with $30,000 worth of amazing gifts. The family wept, the audience cheered, jumping up and down, truly celebrating the moment with the deserving family. I felt myself caught up in the excitement too and while smiling ear to ear saw my hubby across the room with the same look on his face.

Then it hit me, like a bolder being thrown from the moon onto my head. We celebrate our stuff. We glory in our jobs and our homes, cars, and toys. We work hard to pay for our vacations and technology. We cheer loudly when people are gifted with things beyond their wildest dreams. For the family on Ellen. For a woman who wins the lottery. A young couple winning a car on a game show. A man who is reunited with a beloved car he had as a teen. It makes us happy to see people get the things they really want.

But what if what we really want we’ve lost sight of altogether? What if it’s beyond our ability to see over the things that have accumulated around us?

I miss Grace. More than anything I can describe. The experience of grief is like a volcano. It burns hot and is boiling, spitting, and moving beneath the surface of my external body which appears from the outside to be stable. At unexpected times grief bursts out, spilling over me along with the tears of longing. It hurts. It burns me and reshapes who I am as the molten lava cools. I can’t predict it any more than I can control it. I want it to be over. I want it to stop.

Someone told me recently she knew someone who “went crazy” after her son had died. Without hope I can understand how easily that could happen. But I do not mourn like those with no hope. That is what gets me from one day to the next in the midst of the burning pain of loosing her. On the other side of this life there is another. I am as confident of this as the truth of waters ability to be frozen into ice. It looks and feels different, but it goes on. It takes another form.

Heaven is a promise. That promise holds my little girl, my best friend, and many others who I love so very much. I’ve been reading everything I can get my hands on lately about heaven. It’s safe to say that my heart wanders there often. Dreaming of what the promise of heaven holds, not in terms of a dreamland of self-fulfillment, but of the fulfillment of God’s perfect plan. To be everything God created me to be but fell so short of here on earth. To indulge not in the glories of heaven but in the maker of it all. To experience the greatest reunion of them all.

The family on Ellen will love the stuff they got. It will make them happy for awhile and may help relieve some of their financial strain for a time. But like every thing in this world, it will all eventually break and fade and end up in a junkyard somewhere. The people in the story aren’t junk though. They are beautiful creatures made in the very image of God. They are pursued with passion by Jesus Christ. He bought them on a cross to give them the gift they truly desire. Whether they know it or not (and I pray they already do), heaven is the only gift that keeps on giving, and it’s only a gift Jesus has the ability to give away. It is his alone to hold. The same love that kept him on a cross is the same love that offers heaven’s promise to us today. Acceptance of the gift is required. The price has been paid but there is still a choice to be made. If you haven’t ever accepted the gift Jesus offers, say a prayer today. It isn’t given to perfect people, it’s given to humans. None of us is good enough to get in on our own. More than anything else in the world what I want is to have you there with me. I will jump and cheer and high five everyone I know to hear you got what you really wanted.

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