Monday, October 19, 2015

Beyond Autumn

Autumn in Minnesota is magical.  A sea of steady summer greens transforming seemingly overnight into glowing shades of yellow, red, brown, crimson and orange.  Wild green grasses burst into deeply textured gold. Then as the blistering heat of late summer weather changes to a blustery cool, the whipping wind throws all those colors into the air creating a dance of encircling beauty that stirs emotion up from the deepest parts of me.  It often feels like the wind swirling around me, through my hair and and over the hills is my very own breath being stolen right out of my lungs and tossed about.  Searching eyes cannot ever hold on tight enough to the color and texture they see and as the dark comes on more suddenly each day the memory of color is lifted away and I am always left wanting for more. 

But for all the magic, the rapture of fall is briefly bittersweet.  The kaleidoscope scene fades all too quickly to a dull brown and faded gold.  The wind dies down and trees so recently alive with color and movement stand starkly still, reaching up into the empty Halloween sky looking naked and lonely. 

Today, October 20th is diagnosis day.  In our lives with Malia, it marks the beginning of the end of our time here on earth with her.  That makes it a painfully dreaded autumn day.  I’ve always struggled some with seasonal depression, but since this day in 2009 it’s like a chasm opens up in the very ground before me and the blowing October wind threatens to push me in.  But not this year.  Even if I have to shovel truckloads of dirt into that crack every day, I plan to stay out of the hole.  But it’s no wonder that autumn is hard.  It’s when the world turned upside down for us, and was also the season a year later when we were told the goodbyes to our firstborn would be inevitable.

My favorite coping mechanism the last few years has been avoidance.  I can only handle short bursts of grief, so I’ve gotten good at shutting down my emotions and distracting myself with something- with anything else.  But this week I decided I'm past due to face it head on and read through all of Malia’s caring bridge journal entries that I wrote from this day in 2009 through our earthly goodbyes in December 2010.  It took me about 9 hours to get through and it was the first time I had read them in their entirety since I wrote them.  I was surprised how many things about that time I had already forgotten (or gotten a little out of order in my head), and equally curious about how many things I had left out of those entries... but reading through it now with some time and healing in between, I found it really helpful to my heart.  

WOW was it it ever a CRAZY hard 14 months!  Just physically speaking, in that period of time Malia had 24 CT scans, 6 surgeries (1-her port placement, 2-an open biopsy, 3-removal of her left kidney along with her football sized tumor, 4-removal of a tumor in her lung- and with it a chest tube placement, 5-removal of a tumor from her bladder- along with a nephrostomy tube placement, and 6-her G/J feeding tube placement), almost 4 total weeks worth of radiation, 12 months of progressively hard Chemotherapy (with all the nausea, mouth sores, etc that goes with it), 6 emergency room visits, one intensive care unit stay due to sepsis, multiple kidney function tests, echocardiograms X-rays and other monitoring tests, a bowel obstruction, a stem cell collection procedure lasting 2 days, pericarditis and a pneumothorax, about 6 months in the hospital all together, and more than 80 clinic visits.  I had completely forgotten that she spent her 9th birthday in the hospital with gastroenteritis!  But in that period of time she also played soccer in the fall missing only 1 game due to a hospital stay. She ran through the sprinkler, swam in her pool, went to the apple orchard, rode her bike and scooter, watched movies and made lots of new friends in the hospital and clinic, went to school whenever she could, took 2 weekend stay-cations thanks to The Pinky Swear Foundation, got to go to a Twins Game and to the Water Park of America thanks to Hope Kids, went to a Vikings Game thanks to our friend who shared her season tickets, went to a Timberwolves game thanks to a donation to the Children’s hospital, and we got to spend an amazing week at Disney World thanks to Make-a-Wish.  She also played a lot with her best friend Shelby, and with her sisters at home whenever she was blessed enough to have a few days off between hospital stays.  She did art projects, threw marshmallows, was a constant source of entertainment to everyone around her (even on her sickest days), did dance offs in our living room and continued to find JOY in life every single day.  Most days, whether we woke up in our own beds or looking at hospital walls, her first question would be, “What are we going to do for fun today, mom?”.  Her next question would be, “How soon can that happen?”.  She never had time to burn... unless she was burning marshmallows- she loved a good campfire!

But in reading through all those caring bridge entries, what struck me most was the faithfulness of God in meeting our needs time and time again... the physical ones, the emotional ones, the spiritual ones and even the financial ones.  He just kept showing up.  Now with as much as Malia went through it might be easy to dismiss God and think he let us down.  I mean after all she suffered a lot... and in the end she died.  How can a loving God be a part of that?  How could he allow that to happen?  

Well, Malia loved Jesus when she was little.  We told her she should and because she trusted us she did.  But as a 6 year old she was wise beyond her years and started questioning us about a lot of things... including God.  Was he real?  Why couldn’t she see him or hear him if he was?  Where did we come from?  Why do people get sick and die?  How can we know if heaven is real?  After about 6 months of asking spiritual questions and not always being sure of the answers we gave her she announced that she didn’t believe God was real.  I said, OK.  But I believe he is real, and if he is then you can talk to him, right?  So why don’t you ask him if he’s real and see what happens?  Within a couple of weeks she asked me to pray with her wanting to ask Jesus into her heart.  What exactly transpired between those weeks I’m unsure of, but once she believed there was never again any doubt for her.  She told us over a year later that she wanted to be baptized.  We thought she was still too young to really get it, but she insisted and in September of 2009 she did what God had asked of her.

A month later and the night BEFORE she was diagnosed with cancer on this day in October 2009 she told us her cancer hurt.  How could she have known?  She never asked us why any of the things she was going through were happening to her.  She never held herself a pitty party.  She was thankful for each day and could always find joy and fun in everything.  Each time there was news of a relapse she seemed to already expect it.  She had a peace about her illness and a continual joy in life that had no earthly explanation.  When she was asked once what she was most thankful for she said, that Jesus died for her so she could go to heaven. We watched her waving and greeting people for hours as her body was letting go of this life, and we feel sure she was getting glimpses of that heaven she believed in.  God was with her.  For those of us who witnessed her battle with cancer, and watched her live in it, there was no doubt about it.  We believe she went from a linear life to an eternal LIFE; we just can’t see her from where we stand. But a day will come when she will come into view again.  And when she does, the reasons for all she went through will become clear to me I think.  God has a different perspective than us.... an eternal one vs our linear one... and I know he has used the pain in our lives to bless others in theirs. As for our part of the journey he has blessed us with an abundance of hope, peace in the pain and many many friends who help multiply our joy and share our sorrows.

So today we choose to celebrate the crazy life altering years we were given with the spunky, sweet and sometimes sassy girl that forever changed who we are and how we do life.  She taught us to look for the good in things, and to have fun in the hard.  She gave us the gift of laughter and will always be remembered for her smile and abundant life. Autumn’s chasm of grief may threaten to swallow me up, but the joy of the Lord will be my strength and I too will chose to find joy in the journey.  I have had the most wonderful example in Malia of how to do just that.

                                                              October 2010

Wednesday, May 13, 2015

Beyond a door

Therapy time. :)  I haven’t written a blog post here since Malia’s “Heaven Day” in December.  I need to write more posts about sunny, wonderful days when I feel light and full and joyful... trust me, most days hold a lot of those feelings. I will tell you about them soon.  But today I need to share my heart and ask you to hold my hand and walk down a path with me in my mind.  Of remembering... and of moving forward into something good.

I went to Children’s today to visit a friend who’s daughter is on the hematology/oncology floor undergoing treatment.  I’ve been down to the hospital several times since Malia met Jesus.  A few times for appointments for things with the other girls, a few times to visit friends who’s kids were there, and once to drop off a whole lotta ice cream!  Today, like every other time I’ve gone down there, my heart began to race and my hands started to sweat and I had to fight the urge to turn around and go home, or to go past the exit and wander distractedly around the Mall of America instead.  

The thing is, it’s not that I hate it there or that it holds only painful memories.  In fact, I had a zillion wonderful moments with Malia there. There was construction under way the whole time Malia was going through treatments, so we watched port-a potties fly by our 8th floor window on their way to the top of- or on the way down from- the building on more than one occasion.  It would always be startling to see it come into view against the bright blue sky, then give us the giggles for an hour. We’d imagine what might happen if a strong wind blew and tipped it over around the 6th floor.  Euuwww!!!!  

From the clinic window we would watch an outside construction elevator go up and down.  It had a plastic pink flamingo attached to the outside of it and local birds would perch next to it looking confused while riding up and down along with it.  We’d make bets on how many trips the local bird would make before figuring out it’s new best buddy wasn’t just the strong silent type.  

Malia loved stuffed animals and the nurses always had to dig to find her in her bed which was so overflowing with "friends" sometimes that there wasn't much room left for her.  She even hung small ones on her IV pole so they could come out for walks in the hallways with us, or out for adventures to the play room for activities planned by the child life department.  
We would become comedic karate masters and pretend to kick open doors with automatic sensors, then make over the top cheesy chinese noises (complements of Auntie Alisa) and funny faces on the way into the clinic.  We played foosball, Wii games, and danced like wounded robots or crazy chickens until our sides hurt from laughing.  We plotted how to trick the night nurses and watched her favorite shows until she could quote the lines- Dogs 101, River Monsters, iCarly, and Pokemon. I followed her around as she went out with her IV in search of new friends to play with around the inpatient unit, and when she visited those friends during appointments in the outpatient clinic. We laughed a lot, we loved really large... and then there were all the moments in between those one’s with smiles.  Emergent admissions through the ER in the middle of the night, fevers, mouth sores, tachycardia, surgery after surgery, test after test, daily trips to the clinic for chemotherapy or long hospital stays, chest tube, catheters, ICU, NG suction, nephrostomy tube, stem cell collection, tube feedings, the dreaded CT’s and radiation treatments, the bouts with nausea, fatigue, sweating and pain, palliative care, painful conversations with doctors... 

When I walk through that Children’s door it’s with a crazy complicated mess of emotions... of great GRATITUDE to every single person who eased the journey through their compassion and care, from family to friends to the staff that cared for Malia like she was their own child... of great JOY for all the good memories we made in the midst of those walls... and overwhelming... WHAT?  I don’t even have a word for it.  Some crazy combination of sadness, isolation, fear, anxiety, grief... each of them hold a piece of it, but when added together are bigger than the sum of them.  Even now that emotion follows me like a shadow, stretching out behind me as a reminder of all that has happened.  Most days the intensity of it is tucked pretty far away, but today, as I drove into the parking ramp 4 1/2 years later the memories of those 14 months flood every part of my heart.  The beautiful ones, the funny ones, the hard ones and the horrible-no-good-very-bad-day ones. The elevators hold memories, the parking ramp, the welcome desk, waiting rooms, bathrooms, the hallways, the silly egg shaped statues on the lawn, the smiles of the staff, the worried creases in the corner of the other parents eyes, the gift shop, the signs directing visitors to surgery, radiology, the cafeteria, the clinic, the smells, sounds and feel of the place. The. Every. Little. Thing.

So why put myself through going at all?  Well, because it feels familiar I guess.  Sometimes the pain is comforting in a twisted way.  It means that what we went though mattered.  That Malia was real, and because she was the memories hurt, because her life is still important to me.  I miss her with everything that I am.  And I walk through those doors because there is a whole floor full of families right now, today, that are experiencing all of the emotion that comes with childhood cancer. If I can somehow support and encourage someone who is where I was you better believe I’m gonna do what I can.  Even though we went though the fire, and even though her outcome is not what we prayed for... God was present and good through all of it. In the end, although it still isn’t easy (it will never be easy)... I can look into the difficulty these families are facing and in all honesty tell them it will be ok.  That they’re not alone.  They are surrounded by the best of the best in childhood oncology treatment, people who will care for and love their child no matter what.   That there are a lot of folks who care enough to help them in practical ways, including organizations and people who give generously like the Pinky Swear Foundation which we have come to value so greatly.  That God will carry them when it’s too hard to walk or even to stand... that he holds each today and every tomorrow.  That he makes broken things beautiful and in that there is great hope.

I want to give back... I need to.  DOING something with our pain makes it easier to bear. To walk into Children’s feeling the way I do and then to walk out and do nothing about it isn’t an option. I will never be able to repay anyone for all that we were blessed with through people the last several years. But I can pay forward a little kindness and a lot of grace.  That’s why I made myself walk through the hospital doors this afternoon, and is what ice cream for breakfast day is really all about, and is why I care about doing what I can to make a small dent in the financial hit these families take during treatment. For a couple months each year I bake hundreds of cupcakes to raise money to help kids fighting right now.  If you want to help by buying some- stay tuned on facebook!  There will be several opportunities in the coming months.  (And thanks to my friends from work who have already been buying a bunch!)  If you’re watching your waistline and/or just want to make a donation to help, you can do that to the Pinky Swear Foundation through Madi & Marissa’s fundraising page. They (Malia’s sisters) are racing in a kids triathlon in an effort to help other kids going through what their sister did. They miss their sister so much and it helps them to DO something too. They are helping with cupcake making, and will have some lemonade stands this summer.  We are even playing with the idea of an ice cream social fundraiser.  Ha- I see a theme...  here’s the link for donations.

Thanks for hanging in there with us and continuing to grant me the grace to share my heart. Passion often comes out of our deepest pain, but if it leads us into a place of helping others maybe there is purpose in it all.  Love and hugs to all of you!  

Sunday, December 7, 2014

Beyond Control

I woke up this morning with tears on my pillow.  My face wet.  My heart heavy with grief.   All night my mind wrestled with the memories around the final weeks of Malia’s life.  The   struggle to find breath, the horrible coughing fits, the stillness of her sleeping beneath bright pink sheets on the hospital bed in her bedroom.  I remember my pleading with God change from asking him to save her to asking him to please, oh God, just please take her home.  The intensive depth of emotional, spiritual and even physical grief was more than I thought I could bear.  That last week of her life, I rested on a mattress on the floor in her room.  The room still smelled like paint.  She had been asking to paint it for a long time, but it was just 2 weeks or so before that week of sleeping on the floor that we had finally gotten it done.  To Malia’s specifications it was painted in pale blue walls with bright white clouds painted on the ceiling in shapes that made her smile, including a heart, a horse, a butterfly...  A field of wildflowers was painted on the lower half of the room and a bright rainbow had been painted over her bed by her own hand, her friend Shelby by her side with a brush of her own.  Laying on the floor the morning of December 7th, 2010 the sunlight had began filling the room, the faint paint smell lingered.  Joe had come in the darkness just a couple hours before and lay next to me.  We knew we were just waiting.  We were exhausted.  I hadn’t slept much at all in a couple of weeks.  I didn’t want to close my eyes and miss the last breath she took, but they’d been open so long and that last night I had dozed from time to time, sneaking peeks at her every little bit and making sure she was still there.  Then with Joe’s arm wrapped around me I had fallen into a deeper sleep than I had been in for a very long time when I woke with an abrupt start.  I knew it the moment I opened my eyes.  Her body was empty of her somehow.  She still looked the same, but I knew she wasn’t.  I crawled to her side and my heart knew even before my mind would acknowledge it, that when I laid my head on her chest that there was no more heart beating there.  My first emotion was thankfulness.  She was free.  Her body was still warm.  She had just gone home at that very moment when I woke.  Did she wake me?  Give me a kiss on her way to her true home?  Or maybe the wing of an angel had brushed me on the way out.  Maybe God had whispered in my ear.  But I was thankful that I knew the moment she left.  I don’t remember much about the rest of the day.  I was walking in a fog.  Beyond overwhelmed with grief and with exhaustion.  Joe and I knelt together holding each other for awhile and then I woke my sister Alisa who was sleeping on the couch just on the other side of the wall from where Malia’s body lay on her bed.  We each took some time with her then called our parents and made the call to the funeral home.  We went to my moms and held our other two beautiful, confused and heartbroken girls.  We went to the funeral home and picked out her pink coffin, her purple, pink and blue flower arrangements, and other things I’m sure.  

4 years.  It doesn’t seem possible.  Grief is not a linear thing.  I thought the first couple years would be hard- they were.  Crazy hard.  But then I expected things would get easier.  They have- more or less.  But this week.... God, I don’t know what has happened.  Maybe I had some walls up protecting my heart that have finally come crumbling down.  Maybe I need to swim like mad through these tears to find a new level of healing.  Maybe I’m just not as strong as I wish I was.  But I have been so fortunate to have family and friends who give me so much grace.  To allow the tears after 4 years and accept them as easily as they did the week we said goodbye.  That know there are no words to take the pain- even though I know they would take it in an instant if they could.  I’m horrible at accepting comfort from others.  Eye contact or physical touch from people who love me when I’m hurting dissolves the protective bubble I’ve so carefully constructed around myself.  I hate to look weak.  To feel beyond control.  I’m a first born caretaker, who doesn’t do well having to be taken care of.  I’m sorry if I’ve pulled away from any of you.  I want you to know that each and every expression of support and love through the years has been absolutely needed and valued.  We are blessed to be surrounded by such amazing people in our lives.  Again, today I feel thankful.  For earthly support, for heaven’s very presence of a God who loves us and who is rejoicing with Malia today.  For us today is a day of profound sadness.  For Malia it is a day of ultimate celebration.  It’s the day she was born to heaven.  It’s the day she met Jesus and experienced for the first time the fullness of the Glory of God.  The day she danced with angels, and was hugged into heaven by our family and friends who are already there.  I cannot wait for that day to come for me.  Yet, God isn’t finished with me yet.  Malia’s life served a purpose here, and mine is serving one too.  So I will continue to breath even when each one hurts.  I will find ways to bring God glory even in brokenness.   I will do the best I can to find joy (and I do) wherever I am in life.  Pain lasts for a night, but joy comes in the morning.  We miss you, Malia.  Our joy makes the broken bearable because we are confident that you are eternally in the place you belong.  But we will always miss you until we join you there.  

Monday, September 1, 2014

Beyond September

Fall is here.  The days seem suddenly and shockingly shorter.  The air has shifted and a cool hint is already starting to take flight in the Minnesota breeze. Autumn has overtaken the beaches full of giggling swimming children, the BBQ meals eaten late on long summer days, and the shrieking chorus of frogs and crickets which have settled into a hushed evening hum.  

As school starts tomorrow and my 2 healthy, happily excited kids pile on the school bus, I will smile and think of how proud I am to be their mom.  I’ll say a prayer for a smooth transition back to school.  For great friends and helpful teachers.  But even in the excitement of the morning I will likely shed tears as I remember my oldest daughter, who isn’t getting on a bus because childhood cancer became a part of our reality.  She would have been going into 8th grade this year.  Did you know that on average every Elementary school in the United States will have 1 child who is currently fighting or has had cancer already?  That works out to about 1 in 300 children. Stay with these stats for a second- they represent real children. About 20% of the kids diagnosed with cancer, like our daughter, will die.  Of the 80% or so kids who survive their cancer, 2/3 of them will have to deal with significant long term effects of their treatments... including things like infertility, heart disease, kidney problems, joint damage or even secondary cancers & relapses.  Childhood cancers, and their treatments, are ruthless.

If you haven’t already heard- September is childhood cancer awareness month.  
Of course this is close to my heart... it’s forever a part of who we are.  Like it or not, even if it’s hard to think about and makes us sad, angry, or guilty- it’s a real part of the world we live in.  No one should get cancer.  Ever.  It’s beyond horrible and awful... a desperately hard and painful experience.  It shouldn’t happen at all and it really, really shouldn’t happen to our kids.  

You’d think there would be a huge outpouring of support for these kids and intolerance of the statistics representing these amazing little lives.  In our personal experience there has been overwhelming support for our family from friends and family (which I will be FOREVER and always grateful for), but in the general public and in the government I don’t see the support for  childhood cancer I would expect. People are not demanding better resources, research or support for these kids.  Shockingly only 4% of allotted cancer research dollars from the National Cancer Institute goes to find cures for all childhood cancers combined.  That’s it.  The littlest people with the biggest part of our hearts get the smallest piece of the pie.  I know that everyone is someone’s kid at any age, but these littles truly break me.  

I know.  I know.  Awareness campaigns make me a little crazy, too.  Everyone everywhere seems to be shouting awareness from the top of the world about whatever  has hurt them in a personal way.  I’m admittedly no different.  I don’t want to irritate people, or make people sad or get anybody to feel sorry for us.  But... Oh! My! God!  I can’t stand knowing how many Mom’s and Dad’s, Sisters, Brothers, grandparents, aunts, uncles cousins and friends are watching their kids suffer so much and sometimes having to watch them die so horribly.  There are so many of them and they desperately need prayer, support, encouragement and hope.  

If you have a passion for a cause already- don’t feel bad about not putting your resources, time or talents into mine.  I’m not asking for money.  You don’t have to dump anything on your head.  :)  But if this topic touches you, there are many ways to get involved and do something that will make a difference.  Awareness is great- action is even better.

Find a local children’s cancer organization to get involved in.  It could involve volunteering for helping at an event- and can be so much fun!  Try contacting the child life specialist at a local children’s hospital to see if they need volunteers or provide a pizza party for the kids on the oncology unit. Collect snacks to donate to the oncology unit for families who have long hospital stays with their kids.  Maybe you do have enough money to donate to childhood cancer research or into helping families fighting today.  There are many established and wonderful organizations (mostly started by families who have been personally effected by the monster called cancer) that could use your help in a variety of ways.  Here’s a great and fun idea... how about eating ice cream for breakfast with us on Feb 18th to encourage kids and their families world wide affected by cancer?  If you know someone personally, just sending an e-mail, card or small gift would mean so much.  It doesn’t have to cost anything to make a huge impact.  Use your imagination.  Kids are great at that- ask a child in your own life to help you brainstorm some ideas for helping other kids.  

Thanks for listening... for saying a prayer... for being aware... and for making a difference.  And a huge thank you to everyone who has given our own family support love and encouragement over the last few years.  We wouldn’t have been able to survive the emotional, spiritual and financial floods without you.  Your prayers kept our heads above water.  Our prayers are asking God to do the same for the next family given the devastating news, “Your child has cancer.”.

Thursday, July 10, 2014

Beyond Crisis

This afternoon we had a lemonade stand to raise money for kids fighting cancer but this morning I was having flashbacks to Malia’s diagnosis day.  EVERY.  SINGLE.  DAY. I miss her... even 3 1/2 years after saying goodbye.  And when I miss her I remember the battle she fought so well, and I think of the families fighting right now.  They live in a state of constant vigilance- waiting for the next crisis which can come at any time.  

We met some friends while living in the world of pediatric cancer that had a daughter in the fight (with a 3 YEAR treatment plan)  who is now is done with treatment and doing well.  Then her brother was diagnosed with cancer less than a year after she was done with treatment and he got an unexpected trip in an ambulance yesterday.  Praise God he is now stable, but I remember that feeling of crisis so well... in fact even though we don’t have a child with cancer anymore (thank God Malia is HEATHY and STRONG in heaven right now), cancer still is part of our thoughts often.  

Madi woke up with abdominal pain this morning, and the look of pain and fear in her eyes was so familiar.  I had to talk myself down... it’s not cancer... it’s just a normal kid thing... she’s fine... and I had almost convinced myself until we got to the doctors office and the flashbacks started- the same place we went when Grace had abdominal pain... when I had been trying to convince myself she was just fine too.  Good news, the doctor is confident Madi is fine, but I’m a mom who’s lived through childhood cancer and I will never be the same.  I worry more than I should and I pray often for protection for my girls against little tiny freaked out cells in their bodies dividing more than they’re supposed to.  

Madi worries more than she should too.  She asks a lot of questions about cancer in kids.  She wants to help families like ours and is participating in a triathlon on August 2nd to raise money to help these families in the middle of the most frightening time of their lives.  This week I made cupcakes and Mae made signs and for 4 hours this evening she stood on the corner of our street and asked people to buy some lemonade and help kids like her sister.  She (with some help from her little sister Marissa and the neighbor boys) raised $296.00, and she feels so good about being a part of the support for these families.  Thank you so much to those of you who came out and gave so generously and shared your lives with us.  

There are way too many kids in the fight and if you wanted to come out for the fundraiser and couldn’t, would you consider a donation?  I hate asking for money.... I mean I HATE fundraising.  But here’s the thing- the Pinky Swear foundation is one that I know makes a difference because they helped us (and are still helping us by by offering support and giving us a way to pay it forward).  If you are in a position to help, I’ve included a link below to donate directly through The Pinky Swear Foundation in support of Madi and her triathlon.  The donation is tax deductible and will do wonderful things for local  kids.  They help cover mounting bills, create opportunities for families to spend quality time together during rough treatments, and give support at times it’s most needed.  Thanks in advance and please continue to pray for us.  We hide the tears well, but they are still present.  Life will never be the same, but it feels good to give. 

Wednesday, February 12, 2014

Beyond a 13th Birthday

It’s been FORVER since I’ve posted anything here so it seemed time for an update.  My Malia Grace is celebrating her 13th birthday in heaven this next Tuesday, February 18th. As a family we wanted to do something to commemorate the day.  Birthdays, anniversaries of diagnosis, entering hospice, and of the day she entered heaven are all crazy hard, crazy strange days.  The first couple years after her passing it seemed wrong to let the days just slip by quietly, but we struggled how to celebrate when our hearts were broken into a million pieces.  Last year we solved the dilemma for her birthday. Malia LOVED ice cream and we had made an amazing family memory at the end of her earthly life eating ice cream for breakfast together while on her Make-A-Wish trip in Florida.  So we built on that memory and invited about 50 of our closest family and friends to join us in a virtual birthday party on Facebook.  They took pictures of themselves eating ice cream for breakfast and then posted the pictures on my Facebook page.  In the creative style of Malia’s spirit people sent pictures from Malls, drive-thru's, kitchen tables, couches and cars.  They took pictures of their cats getting a sweet lick or two.  They were silly and crazy and smiling and laughing in every single picture, and as I sat in front of our computer screen at home the tears fell.  I wept for the loss of our time with Malia.  I wept for the joy of knowing her celebration in heaven was outdoing ours by a long shot. I wept because I felt so very deeply loved though all of those pictures.  It got our family through the day with a lot of laughter mixed with those tears and gave us something to look forward to all day as the pictures kept coming in. All day my other two daughters would say, “Let’s check the computer again, Mom!”. Afterwards my sister made a collage in the shape of a heart out of all those pictures. It’s now a treasured memory tucked away in the deepest part of my heart. 

So this year we thought, Hey! Let’s open it up for all of our friends to participate if they chose to. So I sent the invite to my entire friends list on Facebook. Malia’s uncle Scott is a big thinker with a creative flare and gigantic heart. Half jokingly he posted that Malia’s birthday was a National Holiday and invited everyone he knew to join the “ice cream for breakfast” party.  My sister thought a National holiday was a great idea and a great way to bring awareness and support to childhood cancer warriors and the families that love them.  She made a poster to plaster all over Facebook... and it has taken on a life of it’s own.  In just 24 hours that poster has been shared over 1,200 times and one site alone has over 600 “likes” on the post, another over 300 “likes” and it’s growing exponentially.  It has already gone viral into more than 6 countries!  So... now it’s an “International ice cream for breakfast” party!  

For those close to us- it’s still about celebrating Malia’s birthday, but in grand Malia style it’s become so much bigger than our little family.  There are now people literally around the world who are going to join us in eating ice cream to honor, cheer on and remember all the childhood cancer warriors they know.  I see the gratefulness of parents and grandparents on line who feel loved and supported in that fight or in their grief, and it is mind blowing. It means so much to them to be remembered.  To be acknowledged.  To feel loved.  Who knew ice cream could do all that? After last year- I did.  And I’m thinking it’s a pretty great birthday present for Malia if she knew the impact of her birthday party gone wild.  She would think this is AWESOME!

There is a Facebook page dedicated just to this party called  YOU are invited!

(So here's an update on this story a YEAR LATER about eat ice cream for breakfast day in 2015 -on Malia's 14th birthday).  Here's the official stats from 2015

Website: 5,000 separate people came and checked it out!
Facebook: on our page alone the total reach was 147,057 separate people with 20,994 people who liked, shared or commented on a post directly from or on our page. Plus 3,841 new likes of folks who will join the movement next year! This doesn't account for anyone who posted their picture somewhere else (like on their own page or on a news article) without hashtags.
Hashtag Stats (from facebook, twitter & Instagram): Posts containing‪#‎eaticecreamforbreakfast‬ were seen by 872,319 separate people & posts containing ‪#‎icecreamforbreakfast‬ were seen by 3,918,242 separate people!  That's nearly 4 MILLION PEOPLE!!!!  AHHHHHH!!!!!

God has been doing some incredible things with Malia’s story.  I had the opportunity to speak at a Women’s Christmas Breakfast in December.  It was undeniable that I was supposed to do it, but it was an act of faith to follow-through.  The date I spoke was Malia’s Heaven day- just 3 years and 2 hours after the time she joined her Jesus. I didn’t know if I was ready to get through it without breaking down.... especially on THAT day.... especially while fighting a horrible cold... but God always gives you what you need when He has asked you to do something. I struggled some, but didn’t cough once and people’s hearts were touched in very deep places. It doesn’t take the pain of missing her away, but to know that God is using that pain to show his love and presence in people’s lives makes the pain more bearable.  It gives it some purpose, and that is a gift.

Now that I’m writing I find there is so much to share, but I don’t want this to get too long.  I may need to blog again soon.  Until then, THANK YOU to all of you who support and love us so well. Hope to “see” you on Tuesday at the party.  :)

Friday, November 30, 2012

The Places We Fall Short

Today the calendar says it's the final day of November.  Where does time disappear to when it flies away?  Every night I take vitamins before bed, and as I reach up for the bottle I feel like I'm in a scene from the movie Groundhog Day.  A perpetual repeat of time moving so quickly it feels like dejavu!  Didn't I  JUST do this?  Where did today go?

December is just beyond the next vitamin dose.  In the midst of wonders surrounding this holiday season my mind struggles as I try in vain to not replay the events that were happening in our lives just 2 short years ago.  Joe and I were beginning to have to think about saying our goodbyes then, as we watched the strength of our always life-over-filled girl fade away.  Hospice nurses became a part of our daily routine while we were still pleading with God for a miracle.  She rallied when my friends from church came and sang her Christmas carols, whooping it up for Rudolph the Red nosed Reindeer.  But December 7th, 2010 is engraved on a tombstone in a small cemetery with her name on it.  I know because I was there the other day.  We brought the girls out to take down the autumn wreath and replace it with a small Christmas tree. It has multicolored solar powered lights and we each picked an ornament to put on the tree.  Sometimes I still have to go to the cemetery just to be sure this isn't just a big misunderstanding.  It still seems like she can't really be gone. 

I suppose most people assume by now we've moved forward.  I'm tired of saying it hurts as much as people are tired of hearing it hurts, so we do each other a favor and pretend we're all fine now... but let's be honest... 2 years was yesterday, and still will be tomorrow.  

Despite the Malia sized gap in our hearts, life does keep moving and we with it.  Madi has really blossomed the last few months.  At 9 1/2 years old, I cannot believe how tall she's gotten!  She's outgrown Malia which is strange in so many ways.  We've had to buy all new clothes because none of Malia's clothes fit her anymore.  To be honest I'm glad for that.  Laundry was incredibly hard for me.  Each item of clothing would bring flashbacks of memories from a day she had worn it.  I'd find myself clinging to one of her t-shirts, jeans or sweatshirt while standing alone in the middle of the basement -tears streaming down my face, swearing at the laundry and all it's painful memories.  For now Malia's clothes are put away and it's back to Madi's clothes I'm folding.  I'm so proud of Madi's laughter and quirky humor, for her creativity, sweet spirit and joy in life.   She misses her big sister, and lately the girls have both been talking a lot more about Malia again.  I wonder if the "anniversaries" are hard on them too.  They don't seem sad, just reflective.  When we told them we were stopping out at the cemetery the other day Madi says, "Oh good!  We haven't been there in awhile."   Malia is showing up in pictures they draw and stories they write and even in play time.  Yesterday 5 year old Marissa wanted to pretend that I was God and she was Malia.  At first I was about to decline (how could I possibly play the role of God?  Talk about big shoes to fill), but then I realized what a great opportunity it was to give Marissa Joy a glimpse into what we know of heaven.  So we pretended to play together there as I showed her around the city, we swam in the crystal sea, slid down rainbows and I spun her in happy dizzy circles the way I would spin Malia when she was little.  Turned out it was good for my heart to picture Malia enjoying God's company too. 

I still struggle with trying to find the balance between keeping Malia's memory alive for my other kids, with needing them to know they are no less valued rhan she was.  I wonder what it's like to live in the shadow of a sister as well known and well loved as Malia was to so many people.  Yet, I think they are secure in who they are and know their value.  They certainly get enough hugs and kisses.  Joe and I can't keep from smothering them with affection.  The gifts they are cannot be taken for granted after the losses we've experienced in life.  I guess all we can do is the best we can and pray God fills them up in all the places we fall short. 

I wanted to do Christmas Cards this year but the thought of taking family photos without Malia in them was harder than I expected it would be.  We found some ways to incorporate her into them though, which helped my heart a lot.  In a few pictures her favorite stuffed toy (Picachu) stood in for her, in others I wore one of her hot pink flowers on my lapel, and in the Christmas card photo, we actually held a life sized photo of her.  Next time maybe I'll be ready to take pictures without her in them.... but I'm not there yet.  Have I mentioned this grief thing is hard?   Here's our Christmas Card direct to you and your family...

Please pray for all of us in the coming week.  This upcoming anniversary is going to be tough, but we always find strength through your prayers when you lift us up.  Thank you for continuing to follow our story.