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Sunday, February 10, 2013

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.

7 comments:

  1. I could cry. this is wonderful and I am blessed to have you as my sister.

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  2. Thank you for taking the time to share this, as hard as it is to collect all those thoughts in one place. God is good. I'm so blessed to know you.

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  3. Thanks for taking the time to share your good news! Praying that you find some much deserved peace and rest as well.

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  4. I am crying. Thank you Julianne for sharing what is on your heart and how you were feeling. I have felt that way myself about my life, and your comments touched me.
    Strive on. Finish the race.
    --Kristin
    friend of Winifred

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  5. Thank you for the update, written so beautifully. I'm so happy and grateful that everyone is healing from the illness and the trauma of illness. Continued best wishes to you and yours.

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  6. Thank you for sharing your life in this way! Today I have been reading this with my husband. We are happy that we have a fathful God and that you now enjoy having a more normal life than for a long time. We continue praying for you all...

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