Choose wisely

Recently, I chaperoned the 1^st graders during their trip to see “ The Grinch Who Stole Christmas” at the Children’s Theatre. It was a fabulous show.  The children were wide-eyed and white knuckled as we settled into the balcony level seats.  During the 75 minute spectacle, I coaxed many little ones back to their seats, led a few to the restroom for potty breaks and sips of water, and one young lady to the teacher who had a hungry tummy.  Jack held my hand the entire time. It was perfect and heart-warming in many ways.

After the show, the kids were invited to stay for a few minutes and ask questions. They were curious about the stage, the age of the performers, and what happens behind the scenes.

The stage manager said… “Actually, its’ really hectic back here. People are everywhere, things are constantly in motion. There is a humongous crew back here keeping this show on track.”

I can relate to that. So many friends tell me how our family handles all of this with such grace.  However, behind the curtain, in the framework of our home, the interior of my mind – it is hectic, frazzled, constant motion. The phone is ringing, meds are being delivered to the front door, appointments are being scheduled, weekly lab draws, emails, chocolate cakes and offerings of support and love. 

In effort to seek a moment of normalcy, I went to Target last week with Lucy. Upon leaving, I couldn’t remember where I parked. Furthermore, I had lost my beloved latte inside the store. Losing my mid afternoon small skim latte is like losing my purse. I am not proud but I confess. And yet it’s appropriate and human.  I recognize the part of me in that moment that is totally distracted, consumed with it all. In that recognition, I am reminded again to CHOOSE.  To choose which part of myself to bring forward.  Here’s a glimpse into the conversation that I had with myself once I found my car:

Me: “ok, that was funny. Now, distracted, little self—you can go away now. You are not serving anyone here.”

(the scenery broadens a little bit, my vision too)

Lucy:  “mom, what are we doing?”

Me:  …“yep, got it.  Time to keep moving forward. Go home now Ali. Choose which Self is going to lead here.  Chose your highest, most expanded self”.

And off we go. Home.

As chaotic as times are for me, maybe for you, for the world – we always get to choose…

which Self to bring forward when the curtain rises?

which Self to bring forward when the kids wake up?

which Self to bring forward when my students show up at class?

which Self to bring forward when the storm comes?

And then, HOW DO YOU HOLD THAT STANCE?

This is what I’m working on right now. All I know is that YOU (the emails, text, cards, offerings of support, prayers, your presence – you are my behind-the-scenes crew that is keeping me on track. There are truly are no words to articulate my appreciation.

A little update on Jack:

Jack’s feeding tube and dialysis catheters will be surgically placed on Wed, January 2^nd.  Dialysis will follow soon after and continue until we find a kidney.  If you haven’t already, please “LIKE” Jack’s facebook page “find a kidney for jack Certain”.  Unfortunately, Jack’s docs do believe he will need to have his current kidney removed but we have to “tune him up” with feeding and dialysis first. This next surgery will most likely  happen about  4+ weeks after beginning dialysis.  Once we have an approved donor, Jack’s transplant will most likely take place 6 weeks after his kidney is removed.  So, we are looking at March or April… possibly longer for transplant.  There are too many unknowns to have a tidy plan at this point.

With great love,

Ali

And so it begins AGAIN.   

The last time I posted here was Dec 4, 2008 - 8 months after Jack received his first kidney transplant.  I was hoping it would be at least another 20 years before I was back here writing, connecting, and reminding myself on how to navigate this journey our family is on.

Yoga Sutra 1.1  Atha yoga anushasanam.   “Now, let us begin the study of yoga”.  The first word, of the first verse of Patanjalis Yoga Sutras is "atha" which means NOW. We are called together for this practice. US, we, plural, community. This moment. Atha: it is a call to action.  In implies urgency, a sense of immediacy. 

This sutra guides me daily. It helps me rise when I would rather not. It helps me get to my mat when I would rather not. It helps me stay strong for my family. It reminds me of how deeply supported our family has been and how we now must open our arms and hearts again to receive help. Jack's situation is urgent.  His kidney is failing and we learned a few weeks ago that dad (Harry) is no longer a good match due to the high level of antibody in Jack's body.   

Jack will have a feeding tube placed and begin dialysis in the next week or two. Dialysis will most likely entail 3 -4 visits a week to the hospital for 4 hours. (Or 12 hours a day, 7 days a week in home). Dialysis will continue until we find a kidney.  It is also possible that Jack will have his (my) current kidney removed while we find a new one as it causing more harm than good right now. I am told this type of procedure is even more difficult than a transplant because this kidney is so deeply embedded in his body. While I am flattered, it is painful and beyond words scary. I have been told it could by years before we find our kidney because of the level of antibody he has, but it could be tomorrow too. 

We have 3 eligible uncles that are being evaluated for possible donation. I am grateful beyond words.  However, there is a slim chance of them being a good match for the same reasons why dad + Jack don't match.  While I choose to be hopeful instead of fearful, we have been advised to look outside the family.  Jack has also been listed nationally but is on "hold" as he is not healthy enough to have surgery right now.  The feeding tube and diaylsis will hopefully position him for surgery. Whenever we get that call -- we must act fast. (There it is again.. Atha). 

So, I write here to process my own matters of the heart. I write here to ask for your prayers and to hold us in your heart.  I write here to hold myself accountable for all that I teach and live by. I write here to remind myself that we are not alone.  

Many have asked about the donation process and how to help.  I have quickly dodged that conversation in the past several months as it is uncomfortable for me.  I mean really, what do I say ... "thank you".  Thank you doesn't quite capture someone offering to donate a kidney to my son. But, as the sutra reminds me,  we are meant to be in community, together, plural.  And the time is now. I will share that process here for those that are truly interested:

- call the University of MN transplant office at 612.625.5115 and push option #1 for new referrals. You will be screened over the phone for obvious things (HIV, diabetes, etc.) You will be sent out information on how to send blood in for testing. If you are local you can also ask to come in to speed up the process. Even after having blood testing, it can take up to 2 weeks to determine if there is a match. 
 -  Jack needs a blood type "O" donor.   (Even if you don't know your blood type, you can  call the number to get started. You must be 18 to call :).

ok. end of discussion on that topic.

Thoughts are stirring already about how to incorporate dialysis into our life, school, and work. I have visions of Jack being able to take his grandparents, aunts, uncles, friends on that adventure instead of mom and dad carrying that burden every other day. I think it will keep Jack in his best stance and empower him to share his journey.  For now, I'll just focus on dinner and picking up the boys from school. 

With great love,

Ali
12.12.12