Many have commented on how positive my journal posts have been and I am so very glad to hear the note I am striking is one of hope, strength and positivity because it is what is needed and, at least most of the time, it’s what I feel.  I realize, however, the desire to be “positive” and “strong” can also impart a numbing effect and perhaps keeps us closed off to the full depth and breadth of the experience at hand.  When we emphatically declare “we are good!” “we’ve got this!” “we’re gonna come out on top!” like a mantra that will somehow override the impossibility of our situation we subsequently cheat ourselves of allowing all the lessons to make their way, sometimes painfully and feeling like poison, into the deepest layers of our hearts.

We also cheat ourselves of permitting those who care to to fully and wholeheartedly enter into our world.  And our world is complicated.  It is both clinically sterile and breathtakingly beautiful.  It is full of moments of deep tenderness and love which are quickly replaced with gut-wrenching fear due to the unknowns that comprise this terrifying and unwanted journey.  It is full of powerful medicines that may have long-lasting side effects for Will and also brilliantly targeted treatment plans to land Will safely on the other side of this diagnosis.  It is full of concern for our two other boys, both demonstrating incredible maturity but who are still, truly, just kids who need our attention now more than ever.

It is full of feeling your love and care and concern and also feeling isolated from the world….up here in our little spot on the 7th floor of Children’s.  So we surrender to it all because, in the end, it’s the only choice we have.

Some might ask “Why Us?” but I say “Why Not Us?’ because the reality is we were chosen for this journey.  We are ready for the moments that feel like arrows through the heart because we know that right around the corner there is a revelation that will fill us back up with the fuel and the fire to carry on.  We grieve for the things that we can not do together; going as a family for a day of skiing, Will’s unused ski pass destined to hang on it’s hook for the rest of the season, planning a summer vacation or even, simply, all of us at home doing normal “family things” like cleaning up the yard or playing hoops in the cul-de-sac.  But we continue to relish the small victories because in doing so we acknowledge that we really have so much to be thankful for.  We are well loved and cared for by each act of kindness, each text or email, each thoughtful gift, each prayer and well wish we have received.  We are aware that not everyone going through this is as fortunate so we pass on the goodwill as best we can.

Will has been in the hospital for 25 days.  His counts are still at zero which is disappointing but not totally unusual in that it typically can take another week or so before they start to climb.  There is a possibility that Will has Myelodysplastic Syndrome (MDS, a chronic bone marrow disease that can lead to leukemia) which, yet to be confirmed, would make count recovery more challenging and require a recalculation on both the  treatment plan and duration.  We hope this is not the case but Will, ever the realist, has asked his docs if they can just sort that out now so he knows what to expect.  Again, this kid continues to amaze us all with his prescient knowledge of how his illness has unfolded thus far and by his demeanor throughout. In the meantime he is gaining weight, increasing his laps around the wing each day and staying committed to his PT.  He will start online school on Monday which he is pretty excited about as he will have to complete 8th grade and, at the very least, the first semester of 9th grade out of school.

I often close my yoga classes by advising my students to surrender to the support of mother earth, to allow the muscle to fall away from the bone, to let their fingers curl in and their toes to roll open.  To smooth out the wrinkles in their brows and let their tongues fall away from the roofs of their mouths.  I remind them to focus on the rise and fall of their belly as their heart rate slows; breath in, breath out.  To allow the gifts of the practice to descend into the deepest layers of their souls, working beyond the physical body.  I now try to do the same.  And it hits me, everything that has happened up ’til this moment has prepared me for this moment and I do, in fact, “have this”.  But do me a favor, if you don’t happen to believe me, don’t be afraid to ask again….