When I think back on the last year, it may sound strange but I feel lucky. I would of course have preferred that the HUS and the kidney failure never happened, and I do find myself looking at pregnant women and being incredibly jealous that for most of them, everything will go totally normally and they will be fine. But for me, it could have been so much worse.
For one thing, I could not be here, and Kate and Allan (my brother and SIL) could be back in the diaper changing business. For another, I had, and continue to have, an incredible support network and medical friends who were looking out for me from the beginning and literally canvassed the world for suggestions on how to help me through this. I have AB+ blood, which means I am a universal acceptor and opened up the whole world of possible donors for me, as well as made it easier to find the liters of plasma I received in exchange for my own. I have an extraordinary group of friends and family who were there to support me as a single parent who, for a long time, could not take care of her children on her own. I have many many friends and family who were willing to be tested to donate a kidney and of course found Sarah and Brutus who actually went through with it. I have had the resources to get the help I need and know what questions to ask and to make sure that I have a great medical team doing all the right things. And of course, I have the best children ever.
Now, I know most parents think their children are the best, and maybe I am biased, but those who know Daniel and Sophie know this to be true. I have been truly blessed with the most easygoing, happy, beautiful, loving, funny, sweet, on schedule, best sleeping children ever. I don’t know if I believe in god, and will talk about that more, but if there is a god, I figure having children who are so easy and wonderful was my trade off for having to go through all of this.
I have thought a bit about god as all this unfolded, mostly because so many people were, and continue to pray for me. I don’t know if it helped, but I appreciate the prayers and thoughts more than I can say. Even if there is no god, the positive energy and the knowledge that so many people are pulling for me is humbling and heartwarming. I do believe we are put on this earth to learn certain lessons. I have wondered all my life what I was here to learn, and now after this episode I think it might be to learn to accept help from others. My typical MO is that I can do it all myself. I have lived my life strong, independent, and always been able to take care of what needed to be done. This time I needed help. It was hard, really hard, both to need help and to accept it. I hated this more than anything else I have gone through. I am still not good at asking for help or accepting it, but so many of you have helped me and I think not only am I a better person for having gone through this but I think my children will grow up being raised by a village and will be better people as well.
The reality seems to be that most of life is pretty hard. I have one friend who has recently lost her father after a long battle with Alzheimer’s, another who just put her father into hospice, a third whose wife is battling a horrible debilitating disease and he has to watch her getting worse day by day, and a fourth who is far too young to be treated for rectal cancer with twelve rounds of chemo. How do we survive these things? Where do we find the strength? Part of the answer is the support and love of family and friends. The messages, cards, prayers, and yes presents (J) mean so much. Watching my babies grow and change every day is worth everything that I have gone through. The other, for me at least, is that we have no choice. You just take it day by day and get through one thing at a time, looking for the small victories and trying not to think too much about what might be.
For me, right now, things are good. I feel good, my creatinine and Brutus seem to be stable. The stent is out so my bladder feels SO much better, and if all goes well, the last remnant of the past year, my dialysis catheter, will be pulled at the end of the month. Hopefully I can continue to wean down on the prednisone. We are still monitoring closely for the recurrence of the HUS – I will probably get my labs checked weekly for the next six months. I am in Arizona now for my first trip since my return to work (note: United Airlines is not part of what is good in the world, at least not today) and I have actually started exercising again. Thank you so much to all of you who have been there for me and who have helped me and my family. I would like to send out love and prayers to those of you who are facing your own challenges right now – I hope you can find some comfort in all of those who are there for you and please be willing to ask for help.