Thursday, October 2, 2008

Love and "The Gap"

Dad, you might want to skip this.

Have you ever seen the website http://www.biblegateway.com/? It is a great place to look up Bible verses in various translations; you can view them simultaneously. I found it this morning as I was reflecting on one of my favorite passages, Romans 8.

I was raised reading the King James Version, but I love other translations. I want to share a couple of verses here in different words.

"26 So too the [Holy] Spirit comes to our aid and bears us up in our weakness; for we do not know what prayer to offer nor how to offer it worthily as we ought, but the Spirit Himself goes to meet our supplication and pleads in our behalf with unspeakable yearnings and groanings too deep for utterance.
27 And He Who searches the hearts of men knows what is in the mind of the [Holy] Spirit [what His intent is], because the Spirit intercedes and pleads [before God] in behalf of the saints according to and in harmony with God's will.(
C)
28 We are assured and know that [[
d]God being a partner in their labor] all things work together and are [fitting into a plan] for good to and for those who love God and are called according to [His] design and purpose."
Amplified Bible (AMP), found on http://www.biblegateway.com/

I didn't know how to pray, in the midst of my anxiety, concern, anger that cancer was threatening her life, and love for Katie. I was so busy with Katie's physical care and daily grind of medical life that it was hard to find words other than "Help us" and "Thank you." (I recall Anne Lamott saying that those are two of the greatest prayers.) So coming upon this verse in Romans was a lovely reminder that it is all okay; we don't have to pray in any particular way for God to hear us. In fact, God apparently enters our hearts and finds our prayers in our groans. That's a relief, as I seem to do a lot of inward groaning these days when my heart hurts.

"38 For I am certain of this: neither death nor life, nor angels, nor principalities, nothing already in existence and nothing still to come, nor any power,
39 nor the heights nor the depths, nor any created thing whatever, will be able to come between us and the love of God, known to us in Christ Jesus our Lord."
The New Jerusalem Bible (NJB, a Catholic translation of the Bible published in 1985) found on http://www.catholic.org/

According to this passage, even the process of losing my daughter, her illness, dying and her death, apparently cannot, and have not, separated me (or her, or any of us) from the Love of God. I still commune with God as best as I can, and I get enormous solace from that communion, when it happens. I mention this, because I was reflecting upon how much love and help I felt when we were living in the hospital with Katie. I don't have an explanation for this feeling, apart from the love of God that flows through and around all creation. There many "reasons" that I could cite, including the care of the staff, the kindness of our relatives and friends showing up or sending what we might need or want, and the prayers of people all around the world. But the underlying cause seems to me to be God's Self, the Creator and Lover of Creation, who the Bible defines as Love itself.

If you are familiar with the NieNie Dialogues (Stephanie Nielson's blog), or her sister Courtney Jane's blog, c jane run, you may see a parallel. It came to me this morning. Stephanie and her husband, Christian, were in a plane crash in August, and have spent the days since then in treatment for extremely severe burns. Their four children are being cared for by family members. Courtney has written about the grace, generosity and support that the family has received, and it reminded me of how we felt when we were in the midst of the crisis of cancer with Katie. The love of God was seen in the kindness and love of His children.

Having said all of that, it's still not easy to be in society, when daily life is full of assaults on that sense of being "okay." While I was baking a pie for Gregg's birthday dinner, I came upon some plastic containers that I used to use to mix up medication and liquids that Katie needed. It made my heart and stomach lurch. I found myself saying aloud, as if to a human tormentor, "Stop it." I don't know who I was addressing, but I know that I wanted the hurtful memory to stop. I miss her so much, and every day there are countless reminders of Katie, and of aspects of her presence that I am missing.

Yesterday, Jessica Randall's mom, Heide, posted an essay on her Caringbridge page that was written by Michael Crenlinsten, the father of a daughter who passed away. It is a very accurate portrait of what the reality of our life is like now. If you want to visit Jessica's site, here is a link: www.caringbridge.or/visit/jessicarandall.

The essay is called "The Gap," and was originally published in The Globe and Mail in 2002. Crenlinsten's daughter, Alexis, died of an aneurysm at the age of nine.

"The Gap"
"Our daughter, Alexis, died 6 months ago, at the age of 9. A rare medical anomaly, in a heart-rending wrench of our innermost spirit, stole her from us in barely more than a moment. Recently, I was at the beach near our home with what remains of my soul - my son, Ethan. Our new puppy romped with us. Beautiful weather, fresh salt air, gentle clear water and sea lions barking in the distance. Perfect. Walking back, I saw a sharp, rusted metal rod and thought to get it out of the way. As I tossed it aside, it caught my thumb and cut me. Perfect. Every moment of peace we have, cuts. Everything that is, hones what is not.
The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact, can be expected to understand what parents who have lost children have absorbed, what they bear. Our daughter now comes to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal, every kid on a scooter. We seek contact with her atoms - her hairbrush, her toothbrush, her clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded. What we had wanted, when she so suddenly took ill, was for her to be treated. We wanted her to be annoyed that her head had been shaved for surgery. We would have shaved ours and then watched her smile as we recovered together, whatever the nature of that recovery. Recover is no longer a part of our vocabulary. Now we simply walk through the noise and debris of our personal ground zero.
A black hole has been blown through our souls and, indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where she now resides. This will be so for years to come and it will change us, profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain - a life sentence. It is not unlike a dog who, suddenly hit by a car, survives. The impact is devastating and leaves the animal in shock, confusion and despair. In time the animal recovers adequately to spend the remainder of its life on three legs. It is not that he is unable, eventually, to function or even to laugh and play. The reality, however, is that, on three legs from here on, every step he takes, every action, virtually every breath reminds him of what he has lost. We are that animal.
Our community of friends will change through this. There is no avoiding it. We grieve for our daughter, in part, through talking about her and our feelings for having lost her. Some go there with us, others cannot and, through their denial add a further measure, however unwitting, to an already heavy burden. This was not a sprained ankle or major surgery that we suffered. Assuming that we may be feeling “better” 6 months later is simply “to not get it”. The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap - those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And, yet, somehow, there are those, each in their own fashion, who have found a way to reach us and stay, to our immeasurable comfort. They have understood, again each in their own way, that Alexis remains our daughter through our memory of her. Her memory is sustained through speaking about her and our feelings about her death. Deny this and you deny her life. Deny her life and you have no place in ours. That’s the equation. How different people have responded to our loss, or not, transcends a range of attitudes and personal histories. It is teaching us much about human capacity and experience, albeit at a searing price. Parents’ memories of a lost child sustain that life. It should be the other way around.
We recognize that we have removed to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it it’s own voice we fear we would become truly unreachable and so we remain “strong” for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience - and extreme experience changes one extremely. We know we will have actually managed to survive when, as we have read, it is no longer so painful to be normal. We do not know who we will be at that point nor who will still be with us.
There will come a time, quite some number of years down the road, when the balance between the desperate awareness of what we have lost when our daughter died will be somewhat balanced by the warm and joyful memories of what we had with her when she lived. I neither long for nor cringe from that time. It will simply come. We will recognize it - though now it is far beyond us.
So, yes, our beloved daughter is gone - a light in our lives gone out leaving blackness for us, left behind, to stumble through. And, while we understand and deeply feel the meaning of our phrase “Now we are lit by her only from within”, we hope, desperately, that she is wherever the light is. We are trying to understand what this means, as we seek our own way, for the remainder of our lives, to some kind of light. We love our son and are trying to breath.
We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those, untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap."


While I was at David's tennis match yesterday, I sat with a couple of the other moms. One of them gently asked me about Katie and our journey through her illness. I was glad to be able to share with someone who wanted to know about our girl, who had compassion for us, but not pity. She received the story with grace and love. I'm thankful for that.

5 comments:

Suz said...

This is a very thoughtful post. His letter, The "gap" opened my eyes a bit more to the feelings of loss that you must go through each day. I can't imagine what your heart feels each and every day....
Thank you for sharing.
Take care-Suz

Anonymous said...

Hi Karen--I am trying to start a blog, but I am old and I can't figure out how to do some of it. I have time to figure it out, but for now, I'm anonymous. I remember the day I found your blog. I think it was a link from Ben Towne's caring bridge site. Anyway, I read your whole blog from beginning to end that day. Wow, what an powerfully emotional time that was for me. Your Katie is such a beautiful person inside and out. I have no words to express my empathy for what you endure on a daily basis. I thought of you especially the other day when I was reading
http://sheyerosemeyerphotography.com/blog/ If you haven't visited her blog, briefly she is a young Australian mother whose family experienced the sudden tragic accidental death of a three-year-old daughter. Her September 23 entry will speak to you deep in your soul. I so admire your strength and I totally understand the roller coaster that you are on each day. Very sincerely, MK

Kay said...

Great post. That gap is hard for people to fathom. Very well spoken.
~kay~

Contemplative Photographer said...

I love that line "she is wherever the light is." That's what I was thinking today, looking at the wall with all the post-it notes; I just couldn't find a way to say it.

Thanks for continuing to reach out to those of us who can only begin to imagine your anguish.
D

Laurie Keller said...

I will be certain that my Mother reads this. It certainly spoke to me. Love to you ...