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!