Packing Punches

This is the last picture taken of my grandmother.  Even in her final days she was a goof.  For reasons that cannot truly be explained, she is wearing a crocheted towel on her head.  I love that grandma never took herself too seriously.

There's not a ton to do near the nursing home that mom is at, so we drove to the top of a mountain - took a selfie and then headed back down.  It was a windy activity, but at least the sun was shining.

Julia and some of her preschool friends went bowling.  This is such a precious age - so wide eyed with wonder and excitement.  Oh how I cherish these days.

After 2 rounds of strep in 3 weeks, Anna ended up with an infected lymph node.  Mumps is going around Barrington, so we were a little concerned as Jonah hasn't been revaccinated for MMR yet.  I felt bad for Anna, but was was glad for the non-contagious diagnosis.

Julia got to bring Prayer Bear home recently.  Prayer Bear is a special visitor, but everything is more special for Julia when Jonah is around.

Jonah's been working hard at therapy these days.  He LOVES these crutches he's been practicing with and can't wait to be green lighted to take them home.

Snow day antics.  Anna was most interested in eating all of the snow.

Noah was most interested in making snow balls and aiming them at unarmed playmates.  Don't be fooled by that sweet smile.

Jonah recently participated in his first St. Balricks event along with fellow Lurie oncology friends, Brannon and Rosie.  St. Baldricks is one of the biggest pediatric oncology organizations that work to raise money to fund research for better treatments and a cure.  They encourage people to raise money by offering their hair as collateral.  This event took place at Romeoville High School where at least a dozen heads were shaved (most girls sacrifice long hair which is then donated to make wigs for cancer patients) and they were able to raise over $13,000!!!  Way to go Romeoville!!!!!!

A year ago we weren't able to participate in any St. Baldricks events as Jonah was spending his days at RIC, recovering from his stem cell transplant, just starting to use his walker.  We were gearing up for radiation and dreaming of being out of treatment, excited and afraid for what our new normal life would be.  Participating this year is all the sweeter knowing we couldn't last year.

Brannon had the same type of brain tumor as Jonah.  The boys met for the first time at the St. Baldricks event, but were immediately bonded by their unspoken commonalities.  Cancer makes strangers friends and little boys superheros.

Julie and her bestie painting a preschool.  She is such an enthusiastic painter that I'm always grateful for the smock!

Our church, Willow Creek Community Church, recently hosted a 4th & 5th grade event called Mega.  Noah invited so many friends that Simon rented a 15 passenger van to bring all of them.  This picture captures most, but not all of his guests.  I love that Noah was able to share a little bit of our big church with so many of his friends.


Man oh man has 2017 been packing the punches!  The infrequent posts serve as an indication of how sometimes life just keeps coming.  The pictures reflect that there is nothing sweeter than normal life.

Shortly after my last post, I was back on a plane to Colorado - this time with the sole focus of moving grandma from rehab to assisted living.  I couldn't go all the way to Colorado without sneaking a visit in to mom as well, but this trip was about grandma.  Scott and I spent a Thursday cleaning, unpacking, hanging pictures, buying necessities and working to make grandma's assisted living apartment as comfortable as possible.  We bought her favorite drinks (Diet Mountain Dew & Peach Snapple) and her favorite snacks (lot of Pringles and bananas) to make it really feel like home.  On Friday we broke grandma out of rehab in the morning - she couldn't wait to get out of there.  We brought her to her new place and got her settled in.  We visited a little, but the excitement of the day seemed to take a lot out of her, so she rested in her favorite chair for most of the day.  It was hard to blame her, as at 94 if was a lot of activity.  Our Saturday drive to visit mom was interrupted with a phone call - grandma wasn't doing well and was being sent to a local hospital.  Our visit to mom was aborted as we rushed to grandma's side.  She had had a major stroke during the night and the prognosis was grim.  Conversations were had, decisions were made, calls were placed - and grandma was moved to hospice.  As with my dad in the end, grandma was not long for this world and died within a few hours.  We were able to sit with her until the end, holding her hand and reassuring her that she was not alone.  Grandma knew Jesus, and we celebrate the fact that she has gone home to heaven.  She is with grandpa, the love of her life, and with Jesus.  She is free of a body that failed her in the end.

So, in the beating that this year has offered so far - intermingled with normal life - my brain couldn't think.  There was so much to process and no time or space - I was just going through the motions of life, shoving all emotions to the side.  I recognized this was not a healthy long term solution, so I took a "solitude retreat" - just me, a journal and God for 24 hours.  I had a tall agenda - I needed to process the sudden deaths of my dad and grandmother, the ensuing cliched family drama, moving mom into a nursing home because of Alzheimers, selling the closest thing to a childhood home that I had, sorting through a lifetime of possessions and pictures from mom, dad and grandma.  At least that's what I thought.  Turned out, what I really needed was the space to realize that the adrenaline that fed me for 10 months during Jonah's treatment was gone.  The adrenaline that helped me power through to watch Jonah brush death's door, to make the next impossible decision, to call the hospital home, to shelve all but the biggest of emotions - it was gone.  Maybe the events of this year accelerated the realization, magnifying the brokeness of my heart and soul, but what I really needed to process started July 2015.

I wish processing emotions and memories was neat and tidy and done quickly.  We have been created as complex beings however, and anyone who has even felt broken knows that it's a journey - a process.  It seems unfair - walking this adrenaline free journey towards healing while also still on the fragile narrow path of Jonah's unguaranteed future.  We continue to be blessed with stable scans, while those around us mourn the passing of their children and live the terror of relapse.  And again God gives me a song to lean into - to sing the truth (mostly only in the car for the well being of those around me) to remind myself and proclaim what I know.  This time the song is Even If by Mercy Me.    The author of the song happened to be going through a health crisis with his son when the song was written.  May I always have the strength to sing "It is well with my soul".

Even If

MercyMe

They say sometimes you win some

Sometimes you lose some

And right now, right now I'm losing bad

I've stood on this stage night after night

Reminding the broken it'll be alright

But right now, oh right now I just can't

It's easy to sing

When there's nothing to bring me down

But what will I say

When I'm held to the flame

Like I am right now

I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

They say it only takes a little faith

To move a mountain

Well good thing

A little faith is all I have, right now

But God, when You choose

To leave mountains unmovable

Oh give me the strength to be able to sing

It is well with my soul

I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

I know the sorrow, and I know the hurt

Would all go away if You'd just say the word

But even if You don't

My hope is You alone

You've been faithful, You've been good

All of my days

Jesus, I will cling to You

Come what may

‘Cause I know You're able

I know You can

I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

I know the sorrow, I know the hurt

Would all go away if You'd just say the word

But even if You don't

My hope is You alone

It is well with my soul

It is well, it is well with my soul