1st Anniversary

After my last blog post (http://sweetshermanfaces.blogspot.com/) I felt like we’d cast off anchor and were free to sail on. I just couldn’t bring myself to write anything about our everyday lives because, frankly, it felt good just to live them! We had sailed through so many storms we felt a wave of relief after the initial, intense, post-transplant period of medical observation was over. Now, as we approach our first anniversary, I've once again become more reflective. So hopefully you will all enjoy a brief update about our last 8 months (since my last post).

Make-A-Wish sent us to Hawaii in April. We felt like it was the celebration after the past couple years of sorrow and struggle. After months of dreamy kidney health, it now feels like the trip was a lovely end to yet another chapter in our ongoing novel. A couple months ago, someone jokingly asked how they could get a free trip to Hawaii. I laughed and said all they had to do was have a dying child. I didn't think anything of it at the time. It was only later that, while outwardly I was smiling and joking, inside the exchange stung. Up until our trip to Hawaii, we didn't come face to face with the reality that Evelyn is always on borrowed time. Evelyn's official status of "end stage kidney failure" (which qualifies her as critically ill and therefore a candidate for a wish) felt remote and casual--something I could dismiss for the most part. After nine months of dreamy health, in July we hit a rough patch with a UTI that turned septic (E. coli went into her blood). She was admitted to the hospital for a week. Her nephrologist was quite concerned by how quickly the infection went into her blood so we did some tests (an ultrasound and VCUG for those medically interested) and found that her kidney reflux, which had caused much of the damage to her native kidneys, was now inflicting damage on the transplanted kidney. Needless to say, Keith and I both were quite shaken by this news. We asked ourselves (and the doctors) if this meant we were back to square one. I was ready to hit the panic button (Was dialysis right around the corner?). Our transplant team sent us back to urology for their assessment. They recommended a non-invasive temporary treatment called deflux (Essentially, they insert some filler into Evelyn’s ureter to stop the urine from going back into her kidneys). We chose to do this instead of the more risky but more successful open surgery of reattaching the transplanted kidney to her bladder. The surgery didn’t go as planned. In rare cases the deflux filler can block the flow of urine to the bladder and cause a back up into the kidney. Poor Evelyn is one rare girl. So we were back in for emergency surgery a couple nights later to remove the blockage and place a stint (a plastic piece between the kidney and bladder. She had one right after transplant, as well.) This means that we’ll be back in to remove the temporary stint on Halloween, her first anniversary.

Even though Evelyn will spend another Halloween in the hospital, she is doing wonderfully. We couldn’t be happier with this past year. She is lively, energetic, and sometimes mischievous. She's reached the 75% in height. Her g-tube is out and she meets her 1.5 liter of liquid per day goal all on her own 3 year old will. The past few months were a sober reminder that Evelyn is chronically ill. She (and her family) always live under a shadow of illness that never goes away. But just like when the clouds cover the sun on a summer day, then move on and the sun reappears with warmth and glory, so do our lives.

Evelyn in her better life

The girls in their school uniforms.

If I take all the time I need to organize my thoughts the way I want them it might be a year before I post this so I'm sending it out much like our lives: a little disorderly.

Evelyn and Keith are both doing astoundingly well. Evelyn is delightfully silly, energetic, naughty, and normal. We are overwhelmed by how much her personality has blossomed. She used to be shy, unsure, sedentary. Now she is climbing on furniture, going on horse rides (at Lights of Christmas), attacking Ada Claire and being attacked. Our house is so noisy and we couldn't be happier. As far as medical details, her blood pressure is hovering between normal and a little too low (before dialysis 160/100, now 90/50). She's off of one of her blood pressure medications. We hope that her readings will continue to trend downward so we can eliminate the other blood pressure medication. Her creatnine (the level that measures the amount of toxins in our blood) has stayed at 0.4 since just after transplant (she was at 2.2 before dialysis). Do any of you remember when she was at 1 percentile in weight and height? She just reached 56% in height and 46% in weight this past week.

Keith was able to pick up the girls, groceries, and vacuum cleaner right around 2 1/2 months post-surgery. He's still not lifting ladders but we plan to keep that permanent, if possible. We had planned to transition him out of the field in the future. His donation just moved that future possibility into our present reality. He's managing our crew, pushing marketing, and making plans for future developments.

My biggest accomplishment? Cooking dinner every night. Helping Marilouise complete her reading and math book. Marilouise is the sweetest oldest sister. She's a big helper and always wants to do a project of some kind. Ada is wild and curious. She's loving pushing her sisters around.

We praise God for the incredible recovery. We've had one ER visit for a fever and one clinic visit for a fever (both turned out to be the common cold). No other signs of infection or rejection. We are profoundly grateful for God's grace and mercy and His healing of our troopers. And a bonus. Momma is still sane!

So why has it taken so long to post an update (my mother and mother-in-law have both been advocating for all of you for over a month)? A couple reasons.

Humble pie
As I walk the hallways of Children's, stand in line at the pharmacy, park alongside other parents, I realize many of these people I casually pass by are overcoming tremendous burdens in order to function normally. I drove out of Children's with Evelyn 10 days after she had a kidney transplant and realized no one knows the struggles we have come through or will go through. They were just walking or driving by, maybe consumed with grief over a new diagnosis; maybe elated with hope of a new cure. When people stare at me obsessively hand sanitizing myself and my children I know they have no idea why.  They probably think I'm a germ-aphobe. I find myself less quick to judge while driving, shopping, observing. It makes me wonder what awful or wonderful things are going on in their days. Less judging, more wondering makes me less talkative.

Avoidance
It's hard to believe how sick Evelyn was and how difficult our lives had been over the past couple years. I think that is probably part of why I didn't want to write. I wanted to forget about the tidal wave of difficulties (Evelyn's diagnosis, hospital stays, treatments and medications, Keith's eye, car accident, my miscarriage, Shingles, Ada's pre-term delivery and tongue-tiedness, Marilouise's sleep apnea and tonsillectomy--just to name a few). I found that as we moved away from a period of time that seemed to crush us and almost obliterate us I felt less able to cope with small things. People would tell me they admired our family for our strength and ability to remain faithful to God through all our troubles. I didn't want to be stronger, extraordinary, or more faithful. I wanted my life to be neat. orderly, predictable, and always within my own ability to manage (rather than having to depend on God, as we do and don't always acknowledge). Our lives have been the antithesis of this.

Realization
I used to want to be a superhero. No capes or spandex (yikes!). Just impressive feats of valor. Over the past couple years, I grieved the loss of a normal life. I wanted normal kids, normal struggles, normal milestones so we could be normally happy. I was reminded of a folktale about three trees that live at the top of a mountain. Each one has dreams--one to be a chest to contain great treasure, another to be a mighty ship to carry kings, and another to remain on the mountaintop so people would look at the tree and think of God. The first two rejoice when they are cut down but are soon disappointed at being fashioned into ordinary things--a feeding trough and a lake-fishing boat. The last one felt the loss of a dream from the first swing of the ax to her ultimate resting as a pile of beams. However, in the end the feeding trough became Jesus' manger; the fishing boat the one carrying Jesus when he calms the storm; the last tree became the cross. None of those trees saw the fulfillment of their dreams until after many years of ordinary living. And then they were still ordinary. What changed them? The understanding that their hopes and joy were more fully realized then they ever planned for themselves. Now, I'm convinced that Keith and I and our three babes will also see that this was not the alternative to a good life but rather the best way to a better one.