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.  

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.”.

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. 

http://my.e2rm.com/PersonalPage.aspx?registrationID=2291197&langPref=en-CA

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 https://www.facebook.com/eaticecreamforbreakfast  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.  :)