Preparation for the Journey

I'm It's Simon writing this morning, so it'll be short and less eloquent. 

God prepares you for things and inspires you in amazing ways.  A post this morning from our friend Kathy reminded me of that.  

This time last year we had the pleasure of having Kathy, Greg and their amazing boys stay with us for a week.  I was amazed by the way they cared for their son with Cri-du-chat and I was amazed by the way their older son cared for his little brother.  Little did I know how much strength I'd pull from their example over the year ahead and how much I'd see my kids step up in amazing ways like their son has.  

You can read that post and more about their family at http://kathymcclelland.com/2015/11/selfless-when-it-comes-to-brother.html/

With Jonah we're on a long road and I pray fervently that he'll reach college age.   At that point I'll have to decide what to do with the college fund that I can't stop contributing to every month despite the likelihood that Jonah wil go to college is extremely low.  

We haven't talked about long term with our other kids, but I think about it a lot and I pray that we get to have those conversations and considerations of how we care for him into old age.  In the interim and along the way I continue to be inspired by Kathy and Greg and their story. 

The Wall

Shortly after moving into our new house a few years ago, I came up with what I thought was an inspired idea.  We have this long wall in our hallway upstairs, and I was going to use it to hang the kids school pictures.  We started with each of their 2s class pictures in a column and added the years to each child specific row. How fun to watch the kids grow and easily compare how they look both similar and different at the same ages.

Since Jonah's diagnosis, this wall has been the source of often ignored anxiety and grief.  When I came up with this idea, I'd already pictured the end - Julia graduated high school and 4 rows of 16 smiling faces through the years.  How full of life, beautiful memories captured in a moment, evident growth and change.  The thought that one of those rows could be altered, or ended, didn't even cross my mind.  And now, in the season of 2015-16 school pictures coming home, I wonder.  What do I do with this wall?  Jonah doesn't have a school picture this year, that much we know for sure, beyond that are only questions.  How do I keep this wall going if one of the rows ends?  How do I honor and celebrate the continuing rows and not foster sadness?  Are we prepared to frame this season and the obvious effects it has had on one of the rows?

I really don't know what to do with the wall yet.  I guess that makes sense as Jonah's story is not yet complete.  For this year though, our friend, and photographer, Emily Hernandez meet us where we're at and turned the ordinary and the sterile, the hard and changed into captured moments of beauty that shine through.  She captured the grace and gift of today.  We will frame this season as it is in the fabric of our family's story.  Jonah will look different this year, but Jonah is Jonah and we will celebrate that, just as we celebrate all of the other kids becoming themselves.  As for the wall, I will try and put the worry of the wall away until next year when there is another frame waiting to be answered, in the meantime, I will soak in the beauty of now.

Jonah took this picture.  On the right is "Cowie", Jonah's ever present lovie and companion since birth.  On the left is "Fat Cowie" who was bought at the same time as "Cowie", to have "just in case". Somehow in this season, "Fat Cowie" has made his way to Jonah.  Although he does not replace "Cowie", there is great delight in seeing them together
.

At RIC there is a therapy dog, Georgia.  When Jonah's counts are good he is allowed to touch and play with Georgia.  When his counts are low, he is only allowed to look at and talk to Georgia.  If you know Jonah and his love for dogs, you can imagine how he feels about this.  Here he is holding his "Georgia" who he can play with no matter his counts.

I Am Where I Want To Be

Quickly, on the treatment side of things, cycle 4 is off to a beautiful start.  The nausea is at bay and spirits are high.  It's our best start to a cycle so far.  Jonah's body is however starting to show small signs of fatigue with our routine; the audiogram indicated that he has a 2-tone hearing reduction in his right ear, his 24 hr methotrexate (mega chemo drug) level is higher than it's been and on a related note his creatinine levels are more elevated than they've ever been. This is a hard chemo regime, folks on the floor often say that Jonah is getting the kitchen sink of chemos, and the cracks are starting to show.  Even in that, we are grateful that we're off to a smooth start.

When our journey began back in July, it was expected that Jonah would remain hospitalized between Children's & RIC until around Thanksgiving.  As perviously indicated, at a recent care conference at RIC, the door was opened that there's a tentative possibility that hospitalization may look more like March.  No one is sure, but it is on the table.

March.  March?  March, March, March.  As a grown up, I suppose I could do this forever if I had to, and I certainly would for Jonah.  When you're 8, 6 or 3 and your parents almost feel more like visitors in your life instead of regular players, March is a lifetime.  I see it, the deep longing of my other children to have their mum & dad, really have them - to see them off to school every morning, greet them off the bus, help with homework, to referee the squabbles, kiss them goodnight and comfort all their bad dreams.  Their cracks are showing too.  They try and not ask, they try and not cling, but they're just kids and sometimes the longing is too big to contain.

It is in the breaking of my heart that I realize I am always where I want to be.  When I am with Jonah, I love being with Jonah and don't want to leave, think it will be too hard - what if something happens while I'm away, what if he needs me, what if I miss some big development again (his first returning sentence was spoken as I was pulling into the driveway at home)?  When I am with Noah, Anna & Julia, I love being with them and I don't want to leave - I want to see them off the bus, watch Noah at basketball, Anna at gymnastics, Julia at dance, I want to have a regular bedtime routine with them and get my moments back that are so normal, but also the fabric of relationship.

I am reading The Hardest Peace by Kara Tippetts.  Kara had 4 little girls and was diagnosed with stage IV breast cancer.  She wrote her book while walking her journey towards the end of life.  It doesn't take a genius to see why I would relate to aspects of her story.  There are many quotes from the book that stick, but on this heartbreak of the tug of time, she says, "Too much reality for too tender an age.  I cannot change the story, I'm so ill equipped to protect her (them) from our pain."  And that's my reality - I cannot protect my children from the pain of our story.  Right now that pain looks like wanting more of what cannot be given.  She goes on to say:

"We want suffering to be like pregnancy - we have a season, and then it's over, and there is a tidy moral to the story.  I've come to sense that isn't what faith is at all.  What if there is never and end?  What if the story never improves and the tests continue to break our hears?  Is God still good?  How do you life realistically when you fell like your moments are fading, fleeting, too momentary?  How do you fight for normal in the midst of the crushing daily news of more hard?  How do you seek hope without forgetting reality?  How do we share the story being written for us with our children while we try to protect their childhood?"

Kara presents no answers to these questions, just allows the space to ask.  I don't know how to do this, but pray is that the God who meets me in this story also meets my young tender children in a way that is real and meaningful to them.  I pray that their childlike faiths can see through the hurt and hard to God, their steadfast companion, both today and 20 years from now.  That as they reflect on these years they know they were deeply loved and that they did not grieve our time apart alone.  The possibility of March is a long time, but love is longer.

Round 4

It has occurred to me that friends who read this are not really reading it to hear my various musings on this life, but to be up-to-date on how Jonah is doing.  To that end, here's an update only post......

It has taken me 3 rounds of chemo for this to really sink in, but as his counts are, so is Jonah.  What I mean is that when his counts are down, Jonah is down.  He generally doesn't feel good, he's more tired and less interested in therapy, he doesn't sleep as well.  At that point in the cycle, he's still battling nausea and vomiting.  Then, his counts recover, and Jonah is good.  He's laughing, joking, he's negotiating for therapy to be a little longer, he's eating and sleeping through the night.  He is the Jonah that we know and love.

Jonah's counts are good now.  We've had a good week of therapy at RIC.  Actually, last weekend he got his second day pass, so he joined the family for brunch and then checked out Ronald McDonald House (RMD).  There's a Coldwell Bankers sponsored "selfie" camera in the lobby of RMD and the kids couldn't resist getting a group photo. It was great to have him join us in part of our new "normal" routine.

Jonah is scheduled to go back to Lurie for round 4 of chemo on Monday.  Given the cycle length (7-10 days), we will likely celebrate Thanksgiving from Lurie.  Jonah's 5th birthday is then December 3.  Theoretically we should be back at RIC by then, but rarely do we follow the theoretical, so we're not sure.  Timing-wise, cycle 5 will likely compete with Christmas, so we're not exactly sure on that.  After cycle 5, it is likely we will return to RIC.  It depends on what kind of progress Jonah is making.  It's hard for RIC to commit to anything as they usually only get Jonah for 2 week blocks and his counts are low for one of those weeks.  Two weeks of therapy at a time isn't a lot from a therapists perspective.  We anticipate going back to Lurie for round 6 of chemo, the doozie that's followed by stem cell transplant, late January/February.  Cycle 6 is a 30 day hospitalization that will be different.  Jonah will not be allowed to leave his room most of the stay and visitors will be quite limited.  Again, we expect we'll need to go back to RIC after cycle 6, but this time we could stay at RIC as long as they require.  After cycle 6/rehab is complete, there is almost no scenario where we don't move onto radiation.  Honestly, things in this world change so fast - it's like trying to pin down glitter - that we're focused on cycle 4 and looking at cycle 5 and not looking too far beyond as we "do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own" (Matthew 6:34).

Here are ways you can pray through all of this for us:

* During cycle 3 none of the 5 anti-nausea medicines seemed to help.  We have taken a break from them all in hopes that they will be more effective in cycle 4.  Please pray that it is so as the constant nausea and vomiting are hard on Jonah's spirits.

* Prayer for our family holidays.  Thanksgiving, Jonah's birthday, Christmas and New Years are seeped in tradition that will be executed differently this year.  We pray that these events are still joy filled celebrations that we will be able to cherish and remember with a smile.

* As weird as it may be, prayer that we are able to execute this roughly outlined plan.  It seems weird to pray to be able to put a child through this, but it means that you still have your child and chance.  We know that no everyone is granted a cycle 6 or radiation as options.

* Of course, all the prayers for complete healing and for how we all relate to God through and despite these circumstances are appreciated.

Thank you all of your on-going caring and support!  We love you and how you love us!

Collection

Next time you see Jonah, he'll have a new accessory.  That's right, he's getting glasses!  Apparently he's got pretty bad vision in his right eye, which they suspect has been that way since birth.  It seems that although most of his friends collect things like Pokemon cards, matchbox cars and erasers, Jonah collects medical specialists.  With his diagnosis you would of course expect him to have a neuro-oncologist and neurosurgeon, which he has.  Because of the posterior fossa syndrome, he's got a rehab doctor.  As a result of the early complications he experienced, he's also got a team of PICU doctors and neuro critical care doctors who follow his progress.  Doctors in his collection who treat issues apparently unrelated to the tumor - ophthalmology (glasses), urology (kidney stone), GI (eosinophilic esophagitis) and an allergist (anaphylactic allergies).

Jonah has a lot of doctors.  It feels overwhelming to require so many people to help care for your child.  It feels a little unfair for a 4 year old to have 9 specialties that follow his medical progress.  I want to stop there, sit in that thought and wallow a bit, but it's not helpful and it doesn't change anything.

When Jonah was born, we were part of a Christian co-op preschool in Reading, MA.  One day, shortly after he was born, one of the moms that I hardly knew called me.  She said that although it didn't happen often, she occasionally received a message or vision from God to share.  She went on to tell me that Jonah was a very special baby and would accomplish great things.  It was an uncomfortable conversation for me, so I punted by saying something generic like, "All children are a gift from God and we're so thankful for our family".  I honestly don't remember exactly what I said, I was just trying to get off the phone.  The mom took my punt and redirected to again say that Jonah would do something special in this world before allowing me to end the conversation.

With our 9 specialties following Jonah now, I think back to that conversation and I wonder.  Was this what she meant?  Does Jonah hold the key to some special medical breakthrough? Will his story touch lives and challenge others to really know God?  Will his story challenge just me to really know God?

At a time when my questions come faster than answers, and I want to wallow, I again turn to music to speak the truth of God's sufficiently.  Even in this, God gives me the strength to breath.  I can't plan next week, but I can breath and take the next step and know that there is a still small voice to be heard if I can just trust enough to listen....

                                            "Need You Now (How Many Times)"
                                                                     (Artist: Plumb)

Well, everybody's got a story to tell
And everybody's got a wound to be healed
I want to believe there's beauty here
'Cause oh, I get so tired of holding on
I can't let go, I can't move on
I want to believe there's meaning here

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Standing on a road I didn't plan
Wondering how I got to where I am
I'm trying to hear that still small voice
I'm trying to hear above the noise

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Though I walk,
Though I walk through the shadows
And I, I am so afraid
Please stay, please stay right beside me
With every single step I take

How many times have you heard me cry out?
And how many times have you given me strength?

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

I need you now
Oh I need you
God, I need you now.
I need you now
I need you now

Happy Halloween

Apparently if Halloween is on Saturday, Chicago hospitals host their festivities on Friday.  This was not favorable for us, as Jonah moved from Lurie to RIC on Friday, so we missed the festivities at both locations.  This did not diminish our fun much though.  Here Jonah wears Anna's costume mask.

Saturday, the actual day of Halloween, Chris Kratt with cheetah power, Chase (Paw Patrol), a blonde Dr. Lulla and Elsa trick-or-treated around RIC.  Mummy may have had to walk ahead of them and pre-stock their trick-or-treat locations to make sure they weren't disappointed, but sometimes you gotta do what you gotta do.

Because it's too cute to not appreciate, at Julia's dance class they got to dress up and Julia pulled out an old costume that Jonah loves to wear.  Actually, he usually gets stuck in it because he's clearly too big for it.  In case you can't tell, I'd be talking about Tigger here.  Look at that sass, with her hands on her hips!

No Regrets

The Sunday before our lives changed forever, Jonah stumbled into our bedroom in the night asking me to come sleep with him in his room.  It was the middle of the night, and we're a house of order, so we don't "do" that sort of thing.  I sent him back to his room and that was that.  Then came Jonah's diagnoses and my struggle with that single decision began.  I missed the last chance to snuggle with my "healthy" boy, and I want to regret that decision over and over.  The thing is, I didn't know he was sick then, I didn't know he had a beast living inside his head.  If I did, it would have changed everything.  I didn't know though, and we don't live lives assuming every moment will be our last.  How can you live a productive, God honoring life that way?  Sometimes the "right" decision is hard, sometimes the "right" decision is "go back to bed".

This has caused a lot of reflection - do I wish I'd had more special moments with Jonah at kamp, do I wish I hadn't gone to Malawi this summer to be with Jonah instead, do I wish we'd played more at the beach together in Avalon, do I wish I'd been more intentional about enjoying his silly sense of humor, big kind heart and energetic living?  Yes, No and Kind Of.  That's the thing - as Jonah's mum, I'm still defined by more than just Jonah.  I have 3 other children, a husband, a calling to be obedient to Christ, friends, other family, gifts & talents and interests.  All those things together make me who I am.  We did have special moments at kamp, Malawi was a great experience, we played at the beach and I love the silly, big hearted exuberant moments, but if I let those be the only things that matter, I become less than I am, less than God called me to be.

It's hard; now that Jonah's sick, now that things are different, I want to look back and rewrite things though.  I want a rewrite that always allows me to watch him on his bike instead of doing PTA things, a rewrite were we read stories instead cooking dinner, a rewrite where we build sand castles instead of me talking to friends.  I want to use what's happening as a cautionary tale to everyone (myself included) that you should always drop everything and break rhythm for those you love, because you never know which moment will be your last.  Then I remember, that's not who God called me to be.  God has called me to wisely use the gifts and talents He entrusted me (see the parable of the gold talents in Matthew 25:14-30).  He has made me organized, pragmatic and capable of planning.  He has gifted me with a full and delightful family and wonderful friends.  I didn't make the wrong choice in the original version of life, I made a choice that was in step with who God has made me to be.  Coming to terms with that means letting go of regret and appreciating what was and what is.

Things are more different now than I ever imagined, and some of my decisions are different now than they were before.  I am more inclined to break rhythm for those I love, but not always.  Occassionaly I am slow to respond to the outside world when snuggles are in order.  Often I make special moments with the other kids instead of talking to friends.  Sometimes I talk to friends instead of listening to music and sometimes I'll sing praises to God instead of reading.  I indulge Jonah (and Noah, Anna & Julia too, if I'm honest) more than my "house of order" self would have and we count each moment as precious.   I am rebalancing my norm as God grows me through this, but not changing who I am.  I am working to appreciate what was and what is so that no matter how this ends I can have no regrets.