The Bitter and The Sweet

It’s been a long time.

I have tried to start this post so many times, but how can a handful of paragraphs accurately depict the miracles and upheavals, the pure, deep joy and the heart faltering terror, that became an everyday part of our lives so suddenly? They can’t, and so I’m going to have to just try to give you a patchy description of the last few months.

In February, after twelve years of (sometimes agonizing) waiting, Kohl and I were able to start the process to adopt a baby girl. It was a miracle, pure and simple. I’ve always believed in miracles, but I don’t really expect them to happen to me. I tend to view them more as faith affirming stories  to help bolster my strength. This time, in the middle of one of the most desperate times of my life, emotionally speaking, the miracle happened to me. With me on dialysis and no discernible way to move forward with our adoption wishes, we were contacted by a birth mother who knows my sister-in-law. I talked to her over the phone, and by the end of the conversation, she told me she wanted to place the baby with us.

I have seldom spoken with someone whom I admired as much as I admire this woman. Her entire desire was for the happiness and welfare of the little soul she was bringing into the world. She knew exactly how hard it was going to be for her, but she was adamant about doing what she felt was right, and she has blessed so many lives through her actions. I truly love her, and my daughter will grow up hearing the story of how her angel brought her to our family.

Two weeks after that first conversation, Kohl and I were flying down to Arizona to pick up our little girl. (Kohl likes to call her Two Weeks’ Notice.) I have never felt so exalted or so terrified. I vacillated between holding her soft head to my cheek while my heart overflowed with the only perfect happiness I have ever known, and a paralyzing panic when I stopped to think about the awesome and awful consequence of being responsible for another being’s life. I had a lot of conversations with my mom and my sister, and thankfully they had felt the same way and reassured me that I would get to a point at which caring for this precious little bundle of bliss would feel doable. They were right.

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Our dark-eyed Little Bird is the delight of our lives. Kohl is especially enamored, and I often have to chase him away so that he gets his projects done. He gets more time with her than many dads do, though, because he takes care of her while I’m at dialysis. Three times a week he gets four hours of pure daddy-daughter time, and sometimes more when I come home feeling especially weak. For the most part though, caring for our girl is easier than we thought it would be. She is a happy, sweet natured baby, and I can spend time with her lying next to her on the bed just as well as if I were jumping around with her.

However, I long for the day when I don’t have to leave her for hours at a time and come back weak and tired. I dream about getting a transplant and doing all the things with her that I am unable to do now, like swimming, long bike rides, milkshakes and fries, and, most of all, knowing that I will be there whenever she needs me.

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Unfortunately, there is some doubt about whether I can get a transplant at all. With all the transfusions I’ve had to have, my antibodies are very high. I only have a chance of matching about 2% of the population. My brother is being tested, and he has a better chance than pretty much anyone of being a match, but there is also the possibility that he won’t be compatible and that, and this is my nightmare, I will have to spend the rest of my life on hemodialysis. There are not many things that frighten me, but the thought of never being able to escape the prison that dialysis makes my body skewers my heart with icy horror. I’m honestly not sure I could do it.

This is the point, then, at which I currently find myself; balanced between the hope and light that my daughter has brought to my life and the dark, lonely despair of sickness without relief. Please, if you feel so inclined, send your thoughts or prayers my way. I know that they help.

And maybe, if it’s my path, I’ll receive another miracle.

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Getting Started

It’s time to begin. I’ve put it off, but I can’t hold out any longer. This is where it all starts.

I created this blog in November, and I had great plans to start posting about what I was feeling as I looked ahead to the time when I would start dialysis for the third time. I even began writing a post, but I stopped in the middle of it and moved on to other projects. I kept telling myself, “It’s almost Christmas, and I have so much to do!” or “I think, all things considered, it’s a better use of my time to take a nap,” or even, “What on earth do people want with another blog to read?!”

On New Year’s Eve I finally realized the truth. We were down in Arizona, visiting family, and everyone was enjoying themselves, shouting out Happy New Year, setting off fireworks, excited for 2012, except me. All I could see ahead of me was the looming gray wall of another bout of dialysis.

For those of you who don’t know, dialysis is a process in which machines clean the blood of someone whose kidneys can’t do the job. It isn’t fun. In fact, it is often soul crushing. This will be my third time on dialysis. My original kidneys failed when I was a senior in high school. After three years of dialysis, I received a cadaver transplant. Five years later, my disease attacked my kidneys again, and I returned to dialysis. This time I was able to get a transplant only a year afterwards, thanks to my wonderful brother-in-law, Mitchell, who donated a kidney to me. Five years after that, guess who came knocking on my metaphysical door? That’s right: IGA Nephropathy and his good pal, Dialysis.

This is what I was facing on New Year’s Eve. My doctor had allowed me to put off the inevitable until after the holidays, but I knew that as soon as I returned to Salt Lake, the process would begin. I was so full of dread that night that I sat inside and cried on Kohl’s shoulder while everyone else was shooting off fireworks, and I LOVE fireworks. I hadn’t wanted to think about it before; I hadn’t wanted to write about it; I hadn’t wanted to accept that this shadow was back in my life.

Here’s the thing though: shadow and light together create beauty. When I was a freshman in college, part of my routine was a dialysis exchange in the middle of the day. I would sit in my parents’ living room and look out their big picture window, luxuriating in the sun like a cat, because dialysis makes me so cold. My mom had planted a beautiful tree in the courtyard, with slender branches covered in tiny, dancing leaves, and I was fascinated by the patterns the tree would make on the sidewalk beneath it. I used to watch it for the entire hour-long process, and eventually I started calling the shadowy, intricate patterns on the cement shadowlace.

My life has become synonymous with, and informed by, shadowlace. I am surrounded by beauty, and love, and delight, and I have learned to recognize these things clearly because of the dark patches. Whoever I am, and whatever I am becoming, it is happening because I have been in the shadows, and I am ready to write about it now.

I am going to plug writing a blog post into my weekly schedule, so, for those who are interested, I hope I have enough of interest to say. Kohl told me that I need to let more people in, to use this experience as a way to reach out and help others, so here come the shadow and the light of my life.