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.