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