Beyond First's & Stones

With my full time contribution to the economy, I don't get to go on many field trips with my kids. Yesterday was the first of very few times I have been able to be a part of Madi's special outing.  We went to the zoo.  Lions and tigers and bears... Oh, my!

It was such a gift to me to see Madi interacting with other kids.  With her autism, I see her deficits in communication at home, but rarely get to see her with groups of kids her own age.  Once again she surprised me at her ability to compensate for the areas where she struggles.  We had such a great time together.  She was right there with the other kids laughing and skipping and begging for treats.  :) Hanging out with Madi is like falling in love.  She makes my heart smile and my stomach flutter.

Yet in the midst of the joy yesterday held, I was thankful for my sunglasses that hid the tears that often threatened to fall.  The last time I was at that zoo it was with Joe, Malia, Madi and Marissa. Malia had just finished up a difficult hospital stay and had a hard time getting around.  But she still pushed herself to get though all the indoor exhibits and the beautiful memories of having my three girls together washed over me.  When our little group of 6 kids walked past the tropical area yesterday my chest tightened as I remembered how Malia had lost her balance on a steep part of that trail and fell.  Her leg braces protected her shins, but her knee was hurt and I hated the pain she had in her face.  This was a girl who never fell.  She was embarrassed and frustrated.  Just a bump, but on top of everything she was going through it broke my heart.

That's the thing about grief.  Malia has been gone from my sight for almost 18 months and I am still not beyond the "firsts".  I thought that once we cleared a year of life without her there would be fewer firsts to move past, but they are still continuously around me.  The first zoo visit, the first water park day, the first amusement park day.  I often find myself in the middle of doing something and think, the last time we did this she was here.  Then again, some of the seconds weren't any easier than the firsts were.  I was a mess on Mother's Day this year, but don't remember last year being as difficult.   I'm trying to allow myself to be OK with whatever emotions I feel at any given time.  I can't control them much anyway, so I hope that by riding the wave instead of pushing against it, I can ride it a little further into healing.   I am thankful for summer sunshine to warm my face and sunglasses to hide behind though.

Because my family seems to be surrounded by medical oddities, we now have another one to navigate through.  We've been doing annual abdominal ultrasounds on our girls because of Malia's cancer history.  There can be a higher risk for siblings and there are no early warning signs for Wilm's Tumor (the childhood kidney cancer that Malia Grace had).  They last had ultrasounds done in March.  The doctor called with the good news that the girls had no signs of Wilm's and the bad news that Marissa (my 4 year old) had a gallstone.  What?  How random is that?  Reading through the risk factors for gall bladder problems, my 4 year old does not fit into a single category.  Our pediatrician referred us to a pediatric GI specialist from Children's who has now referred us to the surgical group.  She needs to have her gall badder removed in order to avoid on-going problems.  I have to admit I've been struggling with questions like, "WHY, Lord?  Can't we have a break?  Can't you spread out the pain for awhile?"  Poor Madi was very worried when she found out Marissa needs to have surgery at Children's.  It took some serious convincing to assure her that Rissa will be fine, and will only need to stay in the hospital a couple days... and that she does not have cancer... and that this was not going to happen to her.   Our kids have been through so much emotionally and it's difficult to believe that we are already being asked to do another hard thing in life.

Satan would love for me to be angry.  But God has already brought us through so much, if anything my faith in his ability to care for us is stronger than ever.  I have been reminded of God's grace in that although we've been told Mariisa has to have surgery, it will be a temporary pain.  Since we found the stone before she had symptoms she will not need to endure weeks of nausea, abdominal pain, infection and misery while the doctors figured out what was wrong.  We were also spared the worry of thinking she had cancer when her stomach started hurting so badly.  I was amazed at how strong Marissa was at the doctors office.  She did whatever was asked of her and when they drew some blood work, she sat on my lap and watched without even flinching.  They missed her vein on the first try and had to dig around without luck so I thought the second time she would cry and fight it (as a pediatric nurse I can tell you 99% of kids do).  She just held out her other arm and said thank you when the tech was done.  She has some of her oldest sister in her for sure.  Like Malia, Marissa is full of grace.  She will do just fine with her surgery.

Malia's garden is already blooming it's heart out and it's beauty brings peace in a crazy world.  God has reminded me there over and over of His love for us and His love for Malia.  He is ever present in the tough stuff of life and has sent so many friends to love us with His arms along the way.  Thank you for your continued prayers and encouragement.  Know that we are eternally grateful for every one of them.


Life isn't about waiting for the storm to pass... It's learning to Dance in the Rain!

Beyond Memories

Grief is a messy thing. It’s unpredictable, uncontainable and has it’s own unique timeline. I gave up on wearing mascara a long time ago. :)

It’s been 14 months since Malia was in my arms. It feels like a lifetime ago. I swear it was yesterday. Time is a tangle as I realize she has been gone as long as she was sick. A few months ago I started having frequent and very realistic flashbacks to difficult times during Malia’s illness and death. They were beyond memories; it was like I was actually there in her hospital room again watching the chemo drip in while she wretched, or sitting with sweating palms while talking with a doctor about the latest complication, or the sight of her blood mixed with the strong smell of alcohol antiseptic. Even though there was evidence of God’s presence and comfort during those times, it was still traumatic to have to bear witness to. To watch my little girl go through so much and then to have to let her go was the most difficult thing I hope to ever endure. My councling sessions have helped some, and the flashbacks are more like memories now... less overwhelming and easier to redirect.

Joe and I also joined a grief group which has been very helpful. Truth is I really didn’t want to do the group thing, but it’s been good. It’s helping me to understand my grieving is “normal” even if at times I feel like I must be going crazy.

In this last session we looked at the “Why’s” of grief. Why did Malia have to die? Why did God allow it to happen? Why did she have to suffer? Why not me instead of her? There are so many questions in grief we will likely never have concrete answers to on this side of heaven, but I think by understanding a little about the character of God we can learn to have faith that what seems like a mess from our perspective, really has a sense of order and purpose beyond our human understanding.

There is an illustration that I think represents this so well. Anyone who has ever done needle work will get this. The person working on a cross stitch project works from the front. As they build on each stitch, a picture begins to form. It has order, design and if done right looks beautiful. But have you ever seen one of those things from the back? It’s a mess! There are knots and loose strings, and nothing seems to make any sense. God is creating our picture. He sees the front side of our existence, and what he sees is beautiful. Our problem is that often we only get a view from the back. We look at our life and tell God he doesn’t have a clue what he’s doing. That he couldn’t possibly be in control of such disorder. We need to have faith that there is another side. That God, in his great love for us, is designing a far more intricate and beautiful life than we can even imagine.

Hebrews 11:1 Now faith is being sure of what we hope for and certain of what we do not see.

I still wonder why, but knowing that God’s plan is beyond my ability to understand, my faith says I can trust him anyway. God sent Jesus to die for me. Since He himself experienced the separation I now feel, I can be assured He knows the pain I feel in missing her. He gets it, and he’s helping me through it. I am trying to move my question of “Why” to “How”? God, How can you use this to help people see your love for them? How can I take the pain and turn it into something positive? How can I grow from this and help others in the process?

Thank you to all of you who read this blog and listen to my heart. Here's praying that God allows you to see a glimpse of the other side of your picture today.

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.