Friday, June 14, 2013


Grief is an irrational thing. It does not respond well to reasoning, to soothing, or to being ignored. It lives on its own timetable. It will take your thoughts and your emotions where you don't want to go, at exactly the moment you don't want to go there. Grief must be looked in the eyes and walked through, or it will not relent.

Raising Naomi, I have walked through the stages of grief again and again, because each new phase brings with it new losses, new fears, and new realities. And I have found that I more fully adjust when I allow myself to voice and grieve those losses, fears, and changes.

There was the initial grief of a questionable prenatal ultrasound. Then came the intense grief a having my newborn taken from my beside and admitted to the neonatal intensive care unit, not knowing if or how she would come home. This was followed by the grief of adjusting to the idea that my child would be "special needs," something I didn't have much precedent for among my family and friends. When my ultrasound with Emma again showed bright kidneys I grieved the realization that we were indeed dealing with a serious genetic defect.

When Naomi and Emma finally received the diagnosis of ARPKD/CHF I entered my most prolonged grieving period to that point--grieving the unescapable severity of the illness that plagued my two daughters. I had to come to terms with the reality that my girls would only grow more and more ill, could only be supported as they declined, and that even modern medicine's wonders of dialysis and organ transplantation were only buying us time--hopefully many more happy years, but limited time. My daughters' childhoods would be shadowed by specialist appointments, invasive tests, and terrifying complications. If my daughters reached adulthood they would likely not marry, not bear children, not live independently--at least according to the information available to me at the time. More than all this, I grieved the realization that (barring my early death or advancing medical miracles) I would one day bury my daughters--maybe in their childhood, or maybe, if we were very blessed, in their 50's, but one day it was coming.

My understanding of the disease and my hope for the future has grown since that time five years ago, as I have met more and more families, and even adults, living with ARPKD/CHF. There are exceptions out there, and I began to hope--as anyone would--that my daughters would be those exceptions who marry, have children, and live well into adulthood.

I have had a relatively long period with relatively little grieving since that time, with the exception of each specialist appointment or battery of tests that would renew the fear in my mind: is this the appointment? Is this the test where we find something severely wrong? The irony is that when I was most worried, the news was, for the most part, fine. I was not prepared to receive that phone call out of the clear blue sky ten days ago.

I was thinking about swimming lessons and room rearranging. I was worried about watering my flowers, and making sure I had pancake mixes stored away in my cupboard, when the phone rang. It was the nurse from the pediatric GI office at the children's hospital we'd visited a week ago. She was calling with Naomi and Emma's blood work results. "Dr. M wants you to know that everything looked really stable with the girls," she announced cheerily, "except that Naomi's creatinine looked a little more elevated."

A little more elevated? It rose more in the last six months than it has risen in her previous nine years of life. And with that cheerfully-delivered bit of news everything changes. All the previous worries about teaching Naomi to swim, or ride a bike this summer; all the thought about what this fall's homeschool curriculum should be is suddenly eclipsed by the monstrous fear that had been lying dormant these last five years: imminent kidney failure.

When the nephrologist confirmed my fears and began to discuss the transfer of Naomi's care to the children's hospital and the process of preparing for transplant I wasn't sure how to feel. On the one hand I knew this was coming someday, but on the other hand, I had begun to hope that Naomi would reach adulthood before her kidneys failed. Suddenly having talk of a transplant injected into the here and now of our lives was more of a shock to my system than I expected it to be.

Yesterday I took Naomi for an ultrasound of her kidneys, and the nephrologist called this morning to discuss the results. He opened with, "Well, to be honest, this report is so different from all the previous reports, I don't really know what to make of it." The report didn't mention anything about bright, cystic kidneys, instead talking about how atrophied and scarred both kidneys were. The doctor and I believe that what the radiologist is seeing is basically the death and collapse of the nephrons (filtering units) in Naomi's kidneys. The process is advanced: it is irreversible. Before at appointments we discussed possible medications and dietary changes to slow the process, but the nephrologist clearly believes we are now beyond that point: what will happen will happen. We are just watching it now and preparing for transplant. When I asked about timetables, given this report, he still didn't want to guess, but I am becoming more convinced that these little, scarred kidneys will not carry Naomi for more than a year or two.

My emotions in the last ten days have been at war within me. Instinctively, a part of me feels like I just want to hurry up and get this over with, like it would be better if Naomi's kidneys failed sooner and she had a transplant and we could all move on, without this dread over our heads. But this emotion is always quickly followed by the sad reality that there is no "moving on" after transplant--not in the sense that we can put it behind us, stop our worrying, and get on with our lives as normal. After transplant there will be lots of close follow-up care, and new worries of rejection, complications, or infections. Transplanted kidneys do not last forever either: 10-15 years is a typical lifetime of a transplanted kidney. If Naomi lives well into adulthood, she could potentially need two or three kidney transplants. There will also be continued liver fibrosis complications. Coming to terms with all of this only brings me full circle to feeling like I want transplant to be as far away as possible, like I want to milk the sweetness out of every day that Naomi has until that point. I want to spoil her and enjoy her and take pictures of her feeling well and healthy, because I know it is only downhill from here until transplant.

It is difficult to reconcile these warring emotions: thankfulness for the health Naomi has now, wanting to enjoy this time, and being filled with sorrow over what is ahead. When I see her grinning at swimming lessons and sitting tall on her horse at LoveWay I am at the same time so filled with joy and sorrow that my chest literally hurts. This is heartache. This is grief. This is life outside of the Garden of Eden. All humans feel this. Something has gone very wrong in this world. We were not created for this place. And this feeling, as heart-rending as it is, creates in us the most beautiful emotion of all: longing for home.

A few nights ago I laid in bed beside Naomi as I tucked the kids in, and I sang. I didn't sing a quick song so I could run out of the room and have some "me time," as I so often have done. I sang song after song about heaven, about our hope, about our comfort in this world, and I let myself feel the sorrow and the hope as I sang. I started with a favorite song I had learned at Cono:

There is a higher throne
Than all this world has known
Where faithful ones
From every tongue
Will one day come

Before the son we'll stand
Made faultless through the lamb
Believing hearts find promised grace
Salvation comes

Hear heaven's voices sing
Their thunderous anthem rings
Through emerald courts
And sapphire skies
Their praises rise

All glory, wisdom, power
Strength, thanks, and honor are
To Christ our king
Who reigns on high forevermore

And there we'll find our home
Our life before the throne
We'll honor him with perfect song
Where we belong

He'll wipe each tearstained eye
As thirst and hunger die
The lamb becomes our shepherd king
We'll reign with him

Which I followed by the chorus of a song my mom used to lead our church choir in singing when I was a little girl:

No more night
No more pain
No more tears
Never crying again
Praises to the Great I Am
We will live in the light of the risen lamb

Then the Chris Tomlin song:

There's a peace I've come to know
Though my flesh and heart may fail
There's an anchor for my soul
I can sing, "It is well."

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise
When he calls my name
No more sorrow
No more pain

I will rise on eagle's wings
Before my God
Fall on my knees
And rise
I will rise

And last, the hymn, which I sung to the Rich Mullins' tune that I like much better:

All the way my Savior leads me;
What have I to ask beside?
Can I doubt His tender mercy,
Who through life has been my Guide?
Heav’nly peace, divinest comfort,
Here by faith in Him to dwell!
For I know, whate’er befall me,
Jesus doeth all things well.

All the way my Savior leads me,
Cheers each winding path I tread,
Gives me strength for every trial,
Feeds me with the living bread.
Though my weary steps may falter,
And my soul athirst may be,
Gushing from the Rock before me,
Lo! a spring of joy I see,

All the way my Savior leads me;
Oh, the fullness of His love!
Perfect rest to me is promised
In my Father’s house above.
When my spirit, clothed immortal,
Wings its flight to realms of day,
This my song through endless ages:
Jesus led me all the way,
This my song through endless ages:
Jesus led me all the way.

"Mama," Hannah said sweetly when I was done, "I always just think your voice is so nice to listen to. My favorite part is, 'He'll wipe each tear-stained eye.'"

"You know, Hannah," I answered softly, "that's my favorite part too."

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