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!