Instrumental grieving

I have not written for a while mostly because I have been too busy cleaning out my house.  In the last few weeks I have been driven to systematically go through every bit of our home and deep clean, declutter, and re-organize.  I am being more brutal about getting rid of stuff than I ever have before, and it is consuming me to the point of distraction. 

When I realized that I wanted to spend every waking moment focused on this project (or collection of projects) I wondered what was going on.  Am I reacting to Oliver's death by effecting extreme change in areas I can control?  Am I trying to "fix" our house since I couldn't "fix" him?  Is it that the eternal perspective that Oliver's life cemented into me is causing me to be sick of material things and driving me to make our home as simple and functional as possible?  Am I so disoriented and tired that I just can't focus on anything except my own little projects of interest?

I was especially concerned it was becoming a grief avoidance strategy.  I've been concerned that I have not been expressing enough emotional grief because I have been crying much less than I thought I would (though I do cry), even though I think of Oliver frequently and we talk about him all the time.  So I am not avoiding the pain, but I am not responding to it they way I thought I would.  Girls are supposed to cry more, right?

Thankfully a good friend passed on some valuable information about grieving styles that was very affirming to me:

In their recent work Kenneth Doka and Terry Martin talk of “transcending gender stereotypes” and describe two main styles of grieving—the “intuitive griever” and the “instrumental griever.” ...

Intuitive Griever:

• Feelings are intensely experienced.
• Expressions such as crying and lamenting mirror the inner experience.
• Successful adaptive strategies facilitate the experience and expression of feelings.
• There are prolonged periods of confusion, inability to concentrate, disorganization, and disorientation.
• Physical exhaustion and/or anxiety may result.

Instrumental Griever:

• Thinking is predominant to feeling as an experience; feelings are less intense.
• There is a general reluctance to talk specifically about feelings.
• Mastery of oneself and the environment are most important.
• Problem-solving as a strategy enables mastery of feelings and control of the environment in creating the new normal.
• Brief periods of cognitive dysfunction are common—confusion, forgetfulness, obsessiveness.
• Energy levels are enhanced, but symptoms of general arousal caused by the loss go unnoticed.

Patterns, according to Doka, occur along a continuum. Those grievers/responders near the center who demonstrate a blending of the two styles experience a variety of both patterns. One pattern may be more pronounced than another depending upon the loss and the personal connection to that loss. This pattern suggests a need for even more choices among adaptive strategies than for the griever who is more fixed in either strategy mentioned above.  (from Grief Counseling Resource Guide, A Field Manual) 

Another site provided this definition:

Instrumental mourners experience and speak of their grief intellectually and physically. They are most comfortable with seeking accurate information, analyzing facts, making informed decisions and taking action to solve problems. Remaining strong, dispassionate and detached in the face of powerful emotions, they may speak of their grief in an intellectual way, thus appearing to others as cold, uncaring and without feeling. (from griefhealing.com)

While I am definitely a blend of the two, I think I am mostly an instrumental griever.  I am by nature a doer, so it makes sense that my primary processing technique is to take all the energy of the stress, fear, confusion, pain, and sadness and redirect it into a project.  I have also keenly felt the confusion, forgetfulness, and obsessiveness! 

This may have also played into why I threw myself into learning all I could about Oliver's medical conditions and managing his care in such a detailed way.  It was something I could do in the midst of all the mess. The difficulty now is that I get really focused on my project (the obsessiveness part), and it feels so good to be doing it, but I still have to stop to mother the girls and make dinner.

I think it also explains why I was driven to make and do things in Oliver's memory.  I planted a tree that Joel's aunts and uncles gave us in Oliver's memory and ended up replanting the whole front garden bed.

I ordered a photo canvas of the best picture we have of Oliver to hang next to Elsa and Nora's canvases. 

I keep working on filling up his baby book/memorial book.   I kept two of his outfits and framed them with a few of his special things.  I generally have given away, donated, or packed up all the other baby things, but I have kept these few things. 

It has been very good for me to have these projects, and I am thankful for the affirmation that my less expressive grieving is within the "normal" range of grief processing.  So that's why I haven't written in a while - I've been too busy cleaning my house!  I also wanted to write it out my friends and family to know that, even though I may not express the pain emotionally all the time, it still is consuming much of my energy and focus, even though I am redirecting it into my projects and my usual dry humor and sarcasm.  And you are welcome to come over anytime and enjoy my cleaned-out house!

Oregon Extension

My college had an Oregon Extension program that I really wanted to do one semester, but it never happened.  After living in Oregon for almost 10 years, now only about an hour from the Oregon campus, we finally went up for a visit.  Some friends from college have taken a sabbatical year to join the faculty there and invited us up for a day.  Unfortunately our day was shaken by the fact that our minivan died halfway up the mountain (the head gasket blew, goodbye old Chevy Venture!).  We still had a lovely time visiting them and being introduced to the Siskiyou National Monument where they've spent the year teaching, writing, researching, and photographing God's amazing creation.

 

Ladybugs!

The girls convinced me to buy a pack of ladybugs to release into the garden to control aphids and other pests.  It quickly became the inspiration I needed to start getting excited about school, both "pre"school now and "real" school next year for Elsa.  The girls were so excited and curious about the little beetles that it was super easy to turn it into a full unit study and and extended science project.

 

We colored ladybugs, made a ladybug counting activity, read ladybug books,

cut and pasted the ladybug life cycle, watched you-tube videos of ladybugs laying eggs,  

 

crafted our own ladybug and aphid from Easter eggs, pipe cleaners, tissue paper, and mod podge,

 

 

 watched the ladybugs eat aphids in the garden,

 watched ladybugs live in a canning jar on our dining table,

 

 

found ladybug eggs in our canning jar on our table (!!!!!),

 

saw the eggs hatch into tiny ladybug lavae and put them into their own canning jar,

 

 

 found older ladybug larvae on the rose bushes (and captured them so we could watch them pupate in their own canning jar- yes we had three jars of ladybugs in various staged of their lifecycle on our dinner table, it was so exciting!!!  The girls and I had so much fun checking on them every morning to see how they had changed and grown.),

 

found ladybug pupa and brand new ladybugs on our garden fence (they are yellow when they first come out),

 

 and, of course, took plenty of pictures of the girls in our garden where the ladybugs were doing such a good job controlling the aphids that I can hardly find any now to feed the bugs in our jars! 

 

 

This is when the ladybug flew away; I thought her reaction was pretty funny.  She immediately started looking for another one.

I HIGHLY doubt that all future school projects will be this easy and exciting, so I am just very thankful that for now these little beetles have provided so much material for the girls and I to work with for the last two weeks. 

Good job, ladybugs.

FIVE!

Elsa turned five on May 8.  FIVE!

To celebrate we had ten little girls and their families over for Sunday afternoon.  Elsa requested pink cake pops with pink frosting and pink sprinkles.

 

Nora was almost too busy singing "Loll-EE-pop!" over and over again to eat hers.

Last doctor appointment

Oliver's last scheduled appointment with the metabolics doctor during his clinic time in Medford was two weeks ago.  We arranged for Joel and I to go instead since we are still wanting to understand the root cause of Oliver's medical conditions for several reasons.  This particular doctor had full access to the medical charts but never met Oliver, so we took photos and my home medical binder with us. 

It was very strange being there without Oliver.  I could feel myself shifting into "medical/doctor discussion mode." Previously this was accompanied but a sober but driving motivation to solve the mystery to fix my son and the thrill in stretching my brain to understand the conversation.  This time it kept feeling empty, silly, and foolish, even though we were still there with a purpose (to understand the risk to future biological children).

This was the first follow-up visit since the big metabolics/mitochondrial genetic panel came back without showing any abnormalities.  Taking this result into consideration, along with his particular (extensive) experience with pediatric mitochondrial diesases, the doctor was inclined to think that Oliver did NOT suffer from a mitochondrial disease.  A mito disease would explain all the particular problems he had at the end, but it would not be the best explanation for the progression of Oliver's condition. (You can skip the details if you like and jump to the conclusion of the visit - the paragraph beginning with "SO".)

In this doctor's experience, pediatric mitochondrial diseases do not first present as structural deformations, but rather are identified after some neurological problem, like seizures, is observed, usually after the child is several months old at least.  The root problem is a chemical processing disorder that eventually makes itself known as it affects multiple organs.  The chemical imbalances in the body lead to the neurological problems and eventually can cause trouble for the kidneys (which try to fix the chemical imbalances), heart, eyes, and other high energy demanding organs. 

For Oliver, the difference is that the structural problems were seen first - his deformed kidney and various heart defects specifically.  These organs develop very early in pregnancy, and their function, or lack thereof, affect the baby very early on.  Poorly functioning kidneys cause chemical imbalances as well, and if not fixed they lead to neurological problems, breathing issues, stamina and strength issues, and all the other problems Oliver dealt with.  So, while Oliver's condition towards the end of his life looked very similar to a mito disease, considering his overall progression and his normal metabolics genetics panel, it may be that his primary problem was actually a genetic mutation that affected the development of his kidneys and heart, and the poor function of these organs lead to the chemical imbalances that caused all of his other problems. 

There are family of known genetic disorders that are linked to concurrent kidney and heart deformations, but we had already tested for these back in August and none of them came back positive.  Also, these type of kidney/heart genetic mutations are genetically dominant (each offspring has a 75% chance of inheriting the disorder), so they are easily identified in family lines and among siblings.  There is no family history of anything like this in either Joel's or my family. 

SO, all that to say that the doctor is inclined to think that this is a rare case of an unknown, spontaneous mutation that occurred just in Oliver, either when the components of his genetic code were written or when they were being copied at his very beginning. 

We are considering the option of doing an exome sequencing of Oliver's DNA.  This process will sequence the part of the DNA that codes for proteins.  It covers approximately 200,000 genes (in total we've looked at maybe about 300 of Oliver's genes so far), which is only between 1 and 2% of the total DNA code but has been seen to include the vast majority of known mutations that cause harmful disorders.  We are still waiting to hear about the final price tag on this sequencing, and are undecided about if we will pursue it. 

Swinging

Our friends have an awesome tree sweing in their backyard, and Elsa decided to wear a pink wig for most of our visit.  I thought it was very funny.

 

Daily Office

During the last month I have gotten out of the habit of using the daily church offices as a prayer guide.  Previously I had come to really enjoy using it as a tool to help provide a prayerful rhythm to my day.  I finally picked up my book The Divine Hours, by Phyllis Tickle yesterday, a full month out from Oliver's death.  As I prayed through the verses it felt as though my God was welcoming me back with acknowledgement and acceptance of my silence for a month.  The Request, Refrain, Reading, Psalm, and Concluding Prayer especially spoke to me.  So really, the whole office spoke to my soul.  This is an abbreviation of the midday office assigned for yesterday (Wednesday nearest to April 27) that I read:

The Call to Prayer
Hallelujah!  Praise the Lord, O my soul! I will praise the Lord as long as I live; I will sing praises to my God while I have my being.  Psalm 146:1

The Request for Presence

Remember me, O Lord, with the favor you have for your people. Come near to me with your saving help, that I may share the happiness of your chosen ones, let me share the joy of your people, the pride of your inheritance.  Psalm 106:4-5 Refrain for the Midday Lessons Your statutes have been like songs to me wherever I have lived like a stranger.  Psalm 119:54 A Reading We want you to be quite certain, brothers, about those who have fallen asleep, to make sure that you do not grieve for them, as others do who have no hope. We believe that Jesus died and rose again, and that in the same way God will bring with him those who have fallen asleep in Jesus.  1 Thessalonians 4:13-14 Refrain The Midday Psalm O Lord, you have searched me and known me. You know when I sit down and when I rise up; you discern my thoughts from far away. You search out my path and my lying down, and are acquainted with all my ways. Even before a word is on my tongue, O Lord, you know it completely. You hem me in, behind and before, and lay your hand upon me. Such knowledge is too wonderful for me; it is so high that I cannot attain it. Where can I go from your spirit? Or where can I flee from your presence? If I ascend to heaven, you are there; if I make my bed in Sheol, you are there. If I take the wings of the morning and settle at the farthest limits of the sea, even there your hand shall lead me, and your right hand shall hold me fast. Psalm 139:1-9 Refrain The Cry of the Church Christ has died.  Christ is risen.  Christ will come again. Prayer Appointed for the Week I thank you heavenly Father, that you have delivered me from the dominion of sin and death and brought me into the kingdom of your Son; and I pray that as by his death he has recalled me to life, so by his love he may raise me to eternal joys; who lives and reigns with you, in the unity of the Holy Spirit, one God, now and for ever.  Amen. Concluding Prayer of the Church May God himself order my days and make them acceptable in his sight.  Blessed be the Lord always, my strength and my redeemer. The Refrain gave me new descriptive words - life during grief, when the one who is loved is gone, feels like living as a stranger. The world feels very different and strange even though the "things" have not changed so much.  Songs soothe my mind and spirit and emotions simultaneously, just as God's statutes do. I pray the Conclusion again and again, finding peace and assurance in His promises; there is HOPE when God is the orderer of days and is the named strength and redeemer.  May God himself order my days and make them acceptable in his sight. Blessed be the Lord always, my strength and my redeemer.