Christmas Joy

Christmas is always a time filled with family, fun and reflection.  Despite how different this year has been for us, Christmas was a time of family, fun and reflection.  All the usual family players were around, plus Uncle Peter, Grandpa and Auntie Leslie.  Jonah was allowed two back-to-back day passes and was able to be home for Christmas and out with us again the following day.  

Having Jonah home was elixir for my soul.  He laughed, he played and we imagined life with him home.  It was different, but it was good.  When the day ended, and Simon had to take Jonah back to RIC, I wondered aloud if we could just keep him home and pretend everything was ok.  Childish I know, but the familiarity of all being home together was just too hard to resist.

This year, the brokenness of the world was front and center in our family, which makes the gift of Christmas all the more sweet.  God sent His son as a baby to heal the brokenness in the world.  The healing is not yet full realized, but there is a path to hope now as a result of Christ entering into the brokenness, and this year, in our house, that hope shone bright.

The day after Christmas we all went to see Seussical the Musical.  Mum usually takes just the older kids to a play in December, but this year Julia was old enough to join.  The combination of Jonah's new needs and Julia being Julia made it seem a wise decision to have extra adults, so we all tagged.

With our crazy schedule, it's been hard to get to church, but we were able to attend Christmas service together.

When Jonah gets a Wii for Christmas, everyone wins.

The Goodalls you see - Christmas 2015

The Goodalls you know - Christmas 2015

Julia loves her Christmas crown.  Honestly, she loves any crown or any excuse she can come upon to have people take her picture.

Jonah & mummy - a Christmas queen and and her prince.

Growing up, I lived in Germany for a few years.  While we were there, my family purchased an authentic Erzgebirge Pyramid that I was always fascinated by.  Mum gave me one for Christmas this year to help fascinate a new generation.  It was a big success and what I hope will be an heirloom holiday decoration. 

Since both Jonah and Grandpa are bald, they shared a hat this year, although clearly Jonah was doing the borrowing, since he didn't see much action in Desert Storm.

We snuck a great girls day into the holiday mix.  Who doesn't love a Christmas-time pedicure?

Anna loved her polish change, but did wonder why she didn't get a full pedicure.

Care to guess who's who?  Julia is of course all pink, mummy was blue, Auntie Leslie went burgundy and Anna has a nice pink with a purple sparkle overlay.

To end our girls day, we got home drinks and fancy chocolates at Anna Shea, which Anna is always partial to by name alone.

Hope

For Mother's Day this year, after a compelling message about being brave, our church gave away key necklaces to all the women in the congregation.  Each necklace had 1 of 3 words engraved on in - Hope, Love or Courage.  The intent of the necklace was to keep it until you encountered someone who needed the word more than you did.  Because the message had been on bravery, "Courage" was the first of the keys to be out of stock.  Everyone had connected with the message and saw a place in their life that they needed more courage, myself included.  We were just starting the journey with Jonah and his EoE and it felt overwhelming.  As I couldn't get the word I thought I needed, I took "Hope".  As "Hope" wasn't "my" word, I quickly passed the necklace onto someone else who needed it more than I did.

Fast-forward just a few short weeks, and we entered this much more complicated journey we're currently on.  It wasn't long before I was given a few "Courage" key necklaces as people all throughout our community were trying to encourage and support us.  It seems fair that courage would be required for this journey, as we face so many things that are harder than we ever dreamed.  For better or worse though, I have always had the motto, "It is what it is".  There's so much you can't control in life, and so you impact the change you can and let go of the rest.  Because of that, courage hasn't been the word I've actually connected with, but I didn't know what my word was.  Then, one day a few weeks ago some friends gave me this bracelet - Hope - and I cried.  That's my word.  I know the hope that does not disappoint is the hope of heaven, but there is also regular good 'ole fashion hope that can fuel these hard days, and that's what I need, and God knew that on Mother's Day.  He was laying the foundation to remind me that it's hope I need and not courage.  He's wired me to need hope over courage.

Today, another friend gave me another bracelet with the word "Hope" etched into it and I cried again.  Despite all the great strides that Jonah makes, my hope bucket is always alarmingly low.  It's as though God knows how dangerous I find good 'ole fashion hope, as after receiving the second "Hope" bracelet today, I also got 30 hope-inspired quotes.  Without people knowing that I need the reminder that hope it ok, the reminders keep coming.  As dangerous as hope may be, it's ok to hope.

And then, as I'm putting Jonah to bed tonight, his little voice pipes up, "Mummy, I'm glad God gave me you." and I know that there is a place for both good 'ole fashion hope and the hope of heaven in our story.  Jonah knows where he comes from, he knows where he's going (as much as a recently turned 5 year old can) and in that there is great hope.

French Bread

Noah, Julia & Anna getting ready for our holiday tea at the Drake over Thanksgiving break.

When Jonah is feeling well, he's nothing short of a goof.  Here he's "trying out" slinky hair.  We're also working on patching his "good" eye to help his brain realize it should start using the other eye too.

She didn't know, she was just trying to sympathize with me, but with six words our waitress at a little diner nearly undid me - "It's ok, you've got 3 kids".  I had meant to order french toast, but said "french bread".  I just said the wrong thing, it happens sometimes, so I made those "silly me" eyes and our waitress tried to connect, likely a mother herself, and for a minute I couldn't breath.  I don't want to spill our story everywhere we go, I want to be "normal", but I want people to see Jonah too.  I don't want to be seen as a "mom of 3 kids" when I'm a "mom of 4 kids".   I guess I should be surprised it's taken so long for someone to assume I'm the mother of 3.  For most of the last 20 1/2 weeks I've looked like a mother of 3 to people who don't know our story.

This journey is just weird.  I'm sure there's a better, more descriptive word, but weird is the most encompassing word I can think of right now.  I honestly fear becoming 1-dimentional as Jonah's story defines a lot of who I am right now.  When I don't talk about Jonah, or how Jonah's diagnosis is effecting the rest of the family, I often don't have anything to say.  I want to be "normal"- to have lots of things to talk about - but the second a stranger doesn't see the truth of our family I want to right their understanding of us.  That opposite pull of being "normal" but being "us", makes me think of our 2 different friends who lost their sons this fall.  There is a great pull for them to establish new norms and routines, rhythms and rituals, but there is equally a great pull to remember, to speak the names of their sons, to remember the silly and mundane routines, rhythms and rituals of their lives.

Other than realizing that I may have an addiction to using "quotes", I'm not sure there's a great take-away from the weirdness of always being pulled in different directions.  Sometimes, no often, I stumble as we navigate this journey and I'm again reminded that I'm called to live step by step, moment by moment, and so I smile weakly at the waitress, wipe my eyes and enjoy breakfast with the 3 kids (and my husband) who are at breakfast with me.

Personal Style

This is quintessential sleeping Jonah style - before his diagnosis he would frequently fall asleep with criss-cross applesauce legs and his head in his lap.  How that ever was comfortable is beyond me.  There was a lot of sweetness in seeing him do such a familiar weird thing.  I actually added the pillow in his lap because the position looks so uncomfortable to sleep in.

Jonah was testing out his personal style preference for how he would wear his new Northwestern hat. He tried all three positions and then decided that brim back is his favorite way.  I'm know I'm hugely bias, but I think he looks cute no matter how he wears his hat!

Another piece of Jonah's personal style is going to be a wheelchair.  He had his first wheelchair "seating" this week.  I have to be honest, I wanted to pretend that I forgot about the appointment and hide.  I'm not ready to think about Jonah needing his own wheelchair and all the implications that come with that.  His PT assured me that we're still working towards walking goals for Jonah, but she did try and help me understand that his walking will be slower and his stamina (at least in the near term) will be decreased.  The wheelchair will allow Jonah to have a level of independence in situations where we need to go a longer distance or a faster pace.  Jonah of course has maintained his happy-go-lucky disposition and is excited about his own wheelchair.  I'm trying to take my cues from him, as if he can be happy in a wheelchair, I can be happy standing next to him.

In terms of an update - we have yet to experience an uninterrupted between chemos time.  The Saturday after Thanksgiving, Jonah was rushed back to Lurie with a fever and what ended up being 3 different infections.  He was back for about a week and then was allowed to return to RIC on his birthday.  He is back at the hospital of his choosing and happy to be living the RIC life.  We expect that he'll go back to Lurie for round 5 sometime between the 28th-30th.  Although he will still require in-patient care, we are hoping to sneak out of RIC for some sort of TBD family Christmas.

Turning 5

Jonah turned 5 last week and it was filled with much fanfare and fun, despite the circumstances.  This season of life is teaching new lessons about what celebration looks like.  Celebration doesn't need anything other than ordinary - it doesn't need glitter, confetti or special plates - celebration is a state of your heart and soul, gratitude realized.

As Jonah opened some birthday cards, Julia snuggled in and snuck a little TV.

Jonah was able to transfer to RIC on his actual birthday, which was the best gift Lurie could have given him as he much prefers to be at RIC.  As a reflection of the heart of RIC, they hosted a doggie/Cars themed birthday party for him and invited the whole floor.

Many of you participated in a birthday card drive for Jonah.  The original vision was to lace the cards up bunting style and decorate his room.  The cards came in so fast and furious that the original idea became an overwhelming craft project, so instead, they're all hanging in a bag right now.  Even now, almost a week later we've still got cards coming in.  We also received a number of sweet birthday videos, all of which were heartwarming and special.  Thank you to all who participated, there were so many cards that the act of opening them has become a daily activity and a reminder of the community that cares.

Anna can always be counted on to help open presents, and this birthday was no different.

Jonah got some extra birthday company with a few of the UIC Flames swim team, which adopted Jonah as part of the team earlier this fall.  The girls and coach joined the RIC festivities and helped all the kids with crafts and nerf gun wars.  Great fun was had by all.

For his actual birthday, Jonah got Sprinkles cupcakes.  For his RIC party they had a Cars cake to add to the fun.

Here's the whole family crowded around the birthday boy while he opens gifts.

It took days to get through all the birthday cards.  Here we're reading a homemade card from a friend.

A proud mummy & daddy and their new 5 year old boy.

Even Liz got into the poising action for a birthday photo, which almost never happens.

Lots of birthday cards had "bonuses" that have been lots of fun to play with.  Here Jonah sports a mustache and a Minon singing watch from some friends.

We have a family tradition that on the morning of your birthday you wake up with that number of balloons in your room.  Jonah loved his 5 balloons and thought it was fun to get tangled up in them.

Willie, the Wildcat (NU's mascot), came to visit Jonah on his birthday and share some extra sweet NU swag.  He got a football signed by the head coach, a sweatshirt blanket, lots of hats, a water bottle and on and on.  The visit was a fun distraction and a great way to make the day special.

The Hardest Peace

A few posts ago I mentioned that I had recently read Kara Tippetts book "The Hardest Peace".  One of the things the book highlighted for me, is that a lot of those random thoughts that strike me in the quiet of the evening are not wholly unique and original.  I'm not being dismissive of my own intellect, there is great comfort in knowing that when confronted with cancer others have trodden the same paths and also found God to be good.

Here are a few sections of the book that resonated deeply with me and my correlating thoughts
(this is long, so feel free to tag out).......

~~~~~~~~~
"..it can be exhausting work to live in the midst of your brokenness all the time.  Some days we want to just be normal.  I don't want to be a spiritual giant facing a terrible disease.  I want to be a mama, a wife, a friend, a member of a community.  I get far too much credit for faith when all I'm really doing is sharing my weakness with honesty.  I'm not the only one facing hard moments, I'm just writing about them."

Simon and I joke that we sometimes share a brain, our thoughts are so in synch.  In this moment, Kara and I must have been brain sharing.  Most days I just want to be normal.  This road is so much harder than you imagine it might be, with pitfalls and booby traps waiting to undo any normal you can construct.  People will say, "I don't know how you do it.  I wouldn't be able to."  The thing is, I only do it because I have to; and it must be by God's strength for the day that I can, because I don't know how I'm doing it either.  I have never been more aware of my brokenness than now.  It is through honest reflection on my struggles and weakness that God is moving me along.  His grace is sufficient for today, and that's all I can manage.
~~~~~~~~
"...Jesus knew the prayer of my heart was something like a Jabez prayer (referencing the early 2000 phenomenon book about the prayer of Jabez boiling down to plenty without pain), that I would not have any more cancer, that the pain would go away.  But that's not what He's promised.  It is His presence that is sure, so I trust Him."

This passage reminded me of my thoughts about pain and promise and that the promise I trust in isn't healing but heaven.
~~~~~~~~~
"My story has had a plot change I never expected.  Actually, it's been more of a plot twist, that word being much more descriptive of how it's felt.  No one ever imagines disease, heartbreak and horror in their story."

We have been walking this plot out for over 18 weeks now.  I can talk CBC, ANC, TPN, mag, phos & sodium levels, emesis and antiemetics and on and on with the best of them.  Hospital staff ask me if I'm a nurse, these things just roll right off my tongue, and I actually know what I'm talking about.  And then out of nowhere it will hit me - Jonah has brain cancer - this isn't some bad dream that I'm going to wake up from, I'm not some Hollywood actress on a TV drama - this is my real life.  This is a plot twist wasn't in my script, but my role is to see it through with honesty and authenticity.
~~~~~~~~~
"I can say that cancer and suffering give the beautiful gift of perspective.  It is the gift you never wanted, the gift wrapped in confusion and brokenness and heartbreak.  It's the gift that strips all your other ideas of living from you completely.  The beautiful, ugly raising to the surface of the importance of each and every moment."

It almost feels cliche to say that I see a gift in the plot twist of cancer, but there is honest truth in it.  In this terrible plot twist, there is rich blessing.  The little niggly things of life are put in their place and being really does overshadow doing.  There are seasons of normal life where you can refine this, but when you have 2-3 hours a week to focus on your marriage and 2-3 hours a week to just be, you figure out being versus doing.  You learn who will just sit with you in your scared heartbreak, who you can do the hyperventilating ugly cry in front of while they cry with you.  You accept, with a full stop, that the theme of the PTA membership drive isn't really a big deal - no buts about it.  You get to see how God shows up as a still, small, but strong and might voice in the midst of a storm.  The gift of perspective comes only when you're stripped of the ability to maintain facades or care what other people think and are forced to define what really matters.
~~~~~~~~~~
"I ate and ate on the joys of parenthood with no thought of it ever coming to an end."

I once saw a necklace that was imprinted, "If you think my hands are full, you should see my heart".  I love life with 4 young children.  Sure it is crazy most of the time, and the adjective mostly likely to be used to describe our family is "loud", but every night my heart is full with the blessing of parenthood.  Parents aren't programed to think about the end of parenthood, and now I see flickers of a different future that is muddled with heartbreak I can't imagine seeing through.
~~~~~~~~~
"Trusting God when the miracle does not come, when the urgent prayer gets no answer, when there is only darkness - this is the kind of faith God values perhaps most of all.  This is the kind of faith that can be developed and displayed only in the midst of difficult circumstances.  This is the kind of faith that cannot be shaken because it is the result of having been shaken."

Almost right away, I recognized that my faith would be shaken through this.  It was important for me to explore my faith - to poke and prod - and make sure that it was firm before the end to this journey was written.  It would be too easy to wait - wait for the happily ever after and retrospectively find the growth in the story, but that seemed an insincere faith.  And what if there is no happily ever after?  Did I want a faith dependent on outcomes?  No one would confess to that, I'm sure, but I needed to be sure I wasn't harboring my bargaining chips with God.  It is in the working out of my struggles and weakness, working through painful questions, that I know my faith is secure. Life is too hard right now to even try and pretend, to have pretense with God.  I have been unable to prevent myself from revealing my ugliest, weakest, most broken self to God and as painful and humbling as it is, this shaking is cementing what I know to be true.  Faith firm despite outcome.  
~~~~~~~
"We cling to the shadow of the story and forget the light in the story.  We love the shadow.................Longevity is not the answer, but it is my soft heart's desire."

My attempts to add to this thought are lacking.  It called me out as a shadow-clinger and challenges me to long for the light in the story.
~~~~~~
"Stay close, be there, and if the answer isn't yes, trust God that the story is good."

And if the answer isn't yes, trust God that the story is good.  Lean into the sovereignty of God.  This short little line is bit like a mantra - a reminder - trust God that the story is good.  Hard? Yes. Scary? Yes. Overwhelming? Yes. Sad? Yes. More than I feel capable of? Yes. Good? Yes, that too.
~~~~~~
Wow, if you're still reading, you deserve a gold star or something!  Honestly, this post has mostly been for me - a quick(ish) reference guide to some thoughts that are at the core of this journey for me, articulated by someone else.  I will be forever changed by Jonah's cancer and that is the brutiful (a Glennon Melton word) truth of faith walking through heartbreak.

Thanksgiving

This year, Thanksgiving looked different from every other year due to our unusual circumstances.   There was thanksgiving in the "different" as we made memories to last a lifetime as opposed to having another year that blends into the rest, although we also look forward to blending more ordinary years together too. 

Jonah transferred from Lurie to RIC on Thanksgiving, which allowed us to share a Thanksgiving meal together as a family.  Granny did all the cooking and transporting and cousin Anne came in from Ithaca to help oversee the craziness that follows us around.

We started the week by taking the kids to see the Charlie Brown Christmas play.  Julia was especially excited as she thought she was going to get to dance on stage.

Noah started less impressed as he thought he was going to have to preform "50 Nifty United States".  Noah preformed this song for his recent Veteran's Day show and there was a lot of practicing as he wanted to get it right.  If you don't know the song, you should find it online and listen to it 1,000 times and then you too will have all the states memorized in alphabetical order.

The best part of children's theater?  You get to meet the cast after the show!  Above is Charlie Brown and Lucy and below is Linus and Sally.

There is a big holiday lights fest on Michigan Ave that includes a parade with Disney characters.  We got a chance to meet them in person before the parade.

The Museum of Science and Industry is running a "Christmas Trees Around the World" display.  To honor our beloved friends, the Sorensens, from Denmark, the kids posed in front of the Danish tree, which did resemble the Soreneses tree in years past.

We got 8-10 inches of snow during break.  The kids loved that it was daddy that took them home that night so that they could play endlessly in the snow.  As far as I'm concerned, the best part of the snow is that it all melted 2 days later!

We got all fancy one afternoon and checked out the Christkindlmarket and then Ubered over to the Drake for a fancy holiday tea.  Everyone loved the finger sandwiches and harpist.  This may become a tradition that blends into ordinary years it was so much fun!
      

I couldn't miss the opportunity to have some special date time with the "bigs" as our time together is so limited.  Noah and I wandered around Michigan Ave and ended up at the Lego Store with an extra Lego set.  Anna and I got matching pedicures and a snack at Starbucks.

As a child, I loved the book, "The Best Christmas Pageant Ever".  To my delight, a local theater turned it into a play and Anne accompanied us.  The Provision Theater gets a thumbs up for their performance and introducing my kids to a story that I love.

Daddy got really brave and decided to keep the standing tradition of decorating the Christmas tree Thanksgiving weekend with the 3 kids all by himself.