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.

Three weeks out

I think I'm past the initial shock wave of Oliver's death.  I had thought that since we saw it coming the shock would be buffered, but that is not the case, as several grief-related resources have confirmed to me.  I then had to acknowledge my drive to face it head on and deal with it and plow through it, strong and quick.  But several close friends have assured me that it is not possible to rush grief, so I am resigning myself and settling in to ride out the storm - I will still meet it head on - you steer the schooner into the gale (I remember that, dad), but you can't make the hurricane move faster - they tend to slow down when they hit the shore. 

The support and love that our community, both near and far, has surrounded us with is wonderful and we are so thankful.  All the sympathy flowers have faded now, but I'm happily incorporating the potted plants we were given into our home. 

It feels absolutely terrible.  It feels like fear and confusion and a painfully empty stomach.  Without warning it expands like a void swelling from the back of my neck into my cerebrum and I either permit my voice painful expression through my tears "Oh, my baby!" or to try to force it, if I can, to wait until a more appropriate time. 

I read through Nicholas Wolterstorff's Lament for a Son tonight.  One of my college roommates mentioned it to us, and I'm so thankful (Thank you, Bethany).  It is not your typical biblical exposition on grief.  It is raw and beautifully written and spoke directly to my deep ache, giving full space for the pain and wrong-ness of death.   Wolterstorff contemplates the place of suffering not only in a Christian's life but also as part of the nature of our God.  It is a short read, about 100 pages, (I am a fast reader and finished it in an hour), and I would recommend it to anyone who wants a better understanding of grieving for a child (or anyone), for themselves or to better understand someone they love who is grieving.  Somehow it helps to have someone else give voice to my confused state of being. 

The last week and a half has been very difficult.  I am unfocused and disoriented, unmotivated, easily annoyed, short tempered, and living on tea and smoothies.  It is good tea and they are green smoothies, but still.   Having friends around and stopping to help or just have tea (I like tea) has been good because it gives me some accountability and keeps me motivated to keep the house functional.

I have a history of being prone to depression, which is one of the motivating factors for me to be open and descriptive of how I am doing. I do not want to force my grieving into a box, but I also want to be careful to not slip too far out of the normative process and into unreasonable depression.

We've been outside a lot now that spring is warming the air.  I've been re-working our flower beds and establishing new vegetable beds in the greenhouse - projects that have been on hold for the last year.  It feels strange intentionally letting myself mostly do what I want instead of forcing structure and chores in our day, but I think it has been OK for the last few weeks and maybe a short time more.  Besides the grieving, I'm dealing with the fact that 75% of my daily job description has been wiped away.  I have new daily routine mapped out, and we will slowly be adjusting our day into it. 

There is suddenly new depth to 1 Thessalonians 4:13, " ...do not grieve like those who have no hope."  This hope and grief are intimately twined together.  My hope does not prevent the pain or even soften the blow, but it is much more than a silver lining to the story.  Knowing that he is "in a better place" and "has been fully healed" does nothing to ease the ache of loss.  It does inform my grieving, and gives depth and meat to the bones of my suffering - this world is not right - so there is a deep, appropriate mourning that cannot be seperated from the hope.  It does gives my mourning an expectant quality.  I wait in expectation for the New heavens and the New earth and to embrace Oliver in his redeemed body; until then I will be feeling the lament of his absence and pleading God for patience as I wait.