Not for granted

Beatrice is one week old and healthy.  When we wrote that she was "totally healthy..." in the email announcements it was not just because that is what is typically written in birth announcements - we don't take that for granted anymore.

Beatrice feels like a mix between a fourth child and a first-born. We are familiar with the basics of having babies and caring for them, but in many ways we feel like we're experiencing her so brand new with the same special awe and amazement we felt the first time with Elsa, and maybe even more so.  Every little "normal" development fills us with surprising delight.  

At first, while in the hospital, I loved holding her but didn't actually just sit and hold her that much.  When we got home it finally sunk in that, not only were we really getting to take her home with us, NOW!, but that I can pick her up whenever I want, for however long I want, and take her wherever I want, without the complications of wires, tubes, monitors, or medication schedules, and without the fear of triggering a heart-stopping vagal response or pinching a tracheostomy tube and setting off ventilator alarms.  I can pick her up and dance around the house whenever I want to.  She is pink and is already trying to lift up her head and knows how to nurse and I may never have to pump again.

And one day she will even smile back at me.  

Garden memorials

I kept the bulbs from the Easter Lilies that decorated the church for Oliver's memorial service, and they just finished blooming this week.  I have them in the container garden I brought with us to our rental, and I hope they will make it through the move to our new home in Birmingham, along with Oliver's tree.  I don't attribute an irrational sentiment to these plants, but I find them helpful, tangible props that help me process and express my thoughts, emotions, and memories.  

I think I love to remember Oliver as I garden because when I work with my plants I feel like I'm cultivating life, and it urges me to reflect with peace on the perfect vitality that Oliver now experiences while I grieve and miss him here and now.

The Peace Lily we were given for him is also blooming indoors; an elegant memorial, a single white spathe peering over lush and green, blooming just in time to greet Beatrice.  I am so proud of Oliver and how much he learned and how hard he fought during his year with us, and this flower by my desk reminds me to not feel guilty about enjoying Beatrice as I remember him.

Easter

I had planned to do something in our home for Lent this year, but when Ash Wednesday came around I just couldn't.  So maybe we'll do something for Lent next year, but maybe not for several years.  In my head I know and believe the glory of Christ's resurrection far, far exceeds beyond description my pain and grief, but pain and grief were my primary feelings all throughout the Lenten season.  Last year Holy Week began with Oliver's birthday, followed the next day with news of his advanced kidney failure, and ended with his gentle bodily death.  He was at peace and we were in shock.  This year was complicated by the anticipation of the anniversary day, the shallows of everyday life, and the depths of memories, but it lacked the shock protecting us from the full force of it all.  I felt guilty and ashamed for not even wanting to celebrate the pinnacle of the Christian year.  Eventually, thankfully, instead of forcing tradition or expectation I felt a freedom from God to just wait and watch for something from him that would help me make make sense of it all, at least for this season, for now.

And I watched, and I waited.

When Palm Sunday came around I decided I still wanted to do something, especially for the girls, to walk through Holy Week, so I came up with little table decorations of vintage robin cutouts with nests and eggs.  I love the robin song that wakes me early in the morning - so cheery and welcoming of the new day.  The greenery and eggs reminded me of the parts of the traditional Passover meal of the bitter greens of remembering and the egg representing new life.  

The nests started empty but I added eggs each morning throughout the week as a surprise for the girls.  (On a side note, the girls were at first completely astonished when I popped one of the little eggs in my mouth - they thought the eggs were plastic but were delighted to discover that they were malted candy eggs!  We also tried some egg dying just for fun too.)

Even with these activities it all felt somewhat hollow, so I kept waiting and watching.  Good Friday and that Saturday were very dark days for both Joel and I.  We grieved hard and deep.  We talked with the girls about what we were feeling and thinking - the mixture of grief and joy.  They responded with as much understanding as they have - Elsa drew a card of me happily holding Oliver without any wires or sensors attached and inside a big heart, and Nora offered us her special blanket and pooh-bear for comfort.  

Finally, finally, on Saturday afternoon I was reading, having given up on finding an understanding of Easter this year, and there was this quote from George MacDonald in the liner of my book:

The Son of God suffered unto the death,
not that men might not suffer, but that their
sufferings might be like His. (Unspoken Sermons, First Series) 

Suddenly Easter shifted from feeling like a hollow celebration to being a rich reminder of Christ's presence and purpose in my pain.  Instead of trying to convince me out of my suffering Jesus sits with me right there in it, weeps with me, and then through his tears offers me the same hope of resurrection and redemption that he embodied on Easter morning.  And in that context I could celebrate Easter this year.

So Easter morning went OK for us this year, perhaps especially because we had it all out the day before.  We were blessed by so many people saying that they were remembering Oliver too, and could actually enjoyed the Easter brunch potluck at our church.  Mostly I was thankful for Goerge MacDonald's quote that acted as a healing salve to my soul.  It came in the nick of time.

God is never early, and he is never late.  He is always right on time.  And when he tells me to wait I don't like it and I doubt him but he proves his trustworthiness again and again.

A season without words

It looks like my last post was at the end of January, shortly after we had settled into our new home.  I had meant to keep up with posting pictures and writing (as much for my own sake as for anyone who might read this post), but I seemed to have needed a break from both writing and taking pictures. 

This has been a season full of decisions and emotions.  When I would even think about writing, I would feel expressions and thoughts come up and literally fill my mouth but I would not have the words to translate them.  Sometimes the thoughts felt half-baked and incomplete and it felt wrong to force them out until they matured, and other times they were simply too confusing or difficult to describe in the fog of fatigue.

I am finding it quite hard to write and articulate my thoughts even now, but I think I need to try anyway. 

Last year Joel decided to pursue attending seminary and enter into full time ministry.  Besides the unknown outcome of his company selling his division at work, this was actually the primary reason we sold our house in December.

Joel and I visited several seminaries all across the country in February.  By March Joel had been accepted to his school of choice, Beeson Divinity School in Birmingham, Alabama.  We began the process of planning for our move, but chose not to publicly announce it online because Joel did not give his official notice at work until just this past week.   

Joel is terribly excited about going back to school and changing vocation.  I agree that this is best for him and for us, but am too overwhelmed by the logistics of moving and the emotions of grieving the loss of our current community to be “excited” about it yet.  And, while I am willing, I struggle to completely agree with God about the timing for all this transition right now.  We plan to move the first week of August, about a month after our baby arrives.

I recently finished an intense 30 week program on arrested development, which has not only helped me begin to identify and overcome unhealthy thought patterns that have haunted me for years but also has helped with grief processing as well.  The program was excellent but exhausting – I felt completely drained for at least a day and half after each session. 

The class also helped me identify some PTSD-type symptoms that I experience.  I had thought they were just “normal” grieving reactions, but realize now that they should not be affecting me this strongly this long after the trauma of the previous year.  For example, when something triggers a memory of an emergency or other trauma from last year, my heart rate spikes, I feel a sudden claustrophobia, and I am filled with a huge urge to flee the situation or hide in a protected corner.  Sometimes the triggers make sense (e.g. visiting the hospital where we spent six weeks in the NICU, hearing ambulance alarms, and I still have not been able to touch a baby even though there have been seven beautiful children born in our church in the last year and a half) and sometimes the triggers are more obscure and seem random.  I am learning about how to deal with these issues and am optimistic about overcoming them.

Baby girl is due in almost exactly a month now, at the end of June, and she is very strong and active.  I am so thankful for her vigor, but she’s starting to really beat me up inside!  She seems to hiccup and kick all the time, and hard!  We’ve done just about as much packing as we can in advance since I will be less and less able to help as our due date approaches, and won’t be much help packing for a several weeks after the c-section.  I never dreamt I would have an elected c-section (or an unexpected, early one like last time for that matter), and I am NOT looking forward to it.  It is our choice this time around, and I am at peace about our decision, but that doesn’t mean I like it.  We have decided to go to the smaller hospital in town where Elsa and Nora were born to avoid some of the PTSD issues I described above. 

And underlying all of the above bits and pieces of our last few months have been the cluster of anniversaries of Oliver’s life.  His birthday (2 years old!) [I was doing fine writing until now.  The heavy pain fills my chest and my eyes blur with tears and I gasp for breath.  I’ll be back in a few minutes.], his memorial date, and then Easter Sunday – the pinnacle of Christian celebration – the morning his soul went to heaven.  I knew the anniversaries would be difficult, especially in this first year, but I did not expect the anticipation of the anniversaries to cause so much havoc in my heart and mind and soul.  I think it also hit so hard because all the moving and decision making had forced grieving onto a back burner for a while, and it was finally catching up with me.  I grieved hard the entire month of March, and then March blended into April with a near dread of Easter Sunday.  Why did it have to be so late in April this year and prolong our season of anniversaries?  I think I should save Easter for another post. 

This summary has been rather matter-of-fact with only a few bits of emotion, but each of these items have at turns, and often simultaneously, overwhelmed me and left me without words.  I have been sad and tired so many days, and I am so thankful for the friends who continue to check in with me, expecting honesty even when my reply is yet again a text message of “having a hard day today…”.  I still look for beautiful moments to photograph, but I find it is hard to be inspired by beauty when I feel so sad and confused. 

I am kept moving by God’s promises and my belief that He is good, though it all feels very different to me now.   That sentence sounded way too cliché – let me try again.  The hope that motivates me to get up each day is founded in my strong belief of God’s sovereignty and perfect character, my limited understanding of which has exploded into a much bigger and more wild and frightening view of divine love.  We are familiar with Lewis’ description of Aslan [God] as being a good though not a tame lion, but who really understands the awesome and terrifying combination of “good” and “wild” until they have been in a wilderness that has torn and scratched them to the core, and have survived to tell about it?  I was intellectually drawn to the problem of suffering and divine providence during my philosophy classes in college, and I find I have been revisiting many of my old friends like Kierkegaard and C.S. Lewis as my theodicy is informed by my current wilderness journey.   More on that at a later time, perhaps.

So, there it is.  I will also start posting the smattering of photos I have collected over the last few months, because there have been beautiful times.  In The Problem of Pain Lewis writes “Our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home.”  The photographs are examples of some of the “pleasant inns” that have been given to us in the past few months.

Oliver's birthday

I let the girl's lead on how to celebrate/remember Oliver's birthday on March 25th.  They wanted to make blueberry cake pops and have a tea party with a friend who knew Oliver, so that's what we did!

I was thankful for their cheerful spirit about it all, and they understood why I was sad throughout the day too.   I had been heavy with memories leading up to that week, and I think planning something active and appropriate for the girls to help them remember was helpful for me too.  We talked about Oliver's birthday last year, looked at photos, and talked about what they remembered.  They ask a lot of the same questions I do - How old is Oliver in heaven?  What does he look like?  Does he get to eat birthday cake in heaven?  (Well, some of their questions are more original than mine :)  I miss my little boy terribly, and am glad I don't have the power to wish him back for real because I would be sorely tempted at times, even though I know he is so much better and happier where he is.  It was a good day for remembering.  Happy Birthday, little Oliver.  

Oliver's Tree

When we moved we took Oliver's memorial tree with us in a half-wine barrel planter.  I was thrilled to see it budding this spring and so thankful it survived the long freezes this winter and our move.  The timing was perfect and exactly what I had hoped for when I picked it out (it was a memorial gift from Joel's aunts and uncles, it is a dwarf weeping cherry tree, var. Snow Fountains).

It budded out at the very end of February,

and was covered in an abundance of little white flowers for almost the entire month of March:

We placed it right outside our living room window, just by the front door, and it was a beautiful way to remember our little one throughout the month of his birthday and memorial day.  I loved having its branches filling our window with such lovely, sweet blooms.   The picture below doesn't quite do it justice, but you get the idea.  

I planted some flowering summer bulbs around the base, so now that the tree is full of green leaves there is color filling the pot underneath.  The birds have discovered the tree's ornamental berries, and have been amusing the girls and the cats by flying up so close to the house to pick the fruit!

Grief plays funny tricks

I decided I needed to buy Baby Girl some flowers.  But honestly they were mostly for me, because I am desperate for spring, and because I needed something to remind me to rejoice.  A few hours after experiencing elation at the good news of our daughter's health I thought of Oliver, the ring with his fingerprints on my finger, and the helium began to seep out of me.  I began swirling down into a confusing mixture of grief, shame, sorrow, relief, and a host of other conflicting emotions.  And so I did what I always do when I feel something too intensely for comfort - I stuffed it all down and stopped feeling.  I was ashamed of my feelings, their intensity, and even the fact that I was experiencing them instead of just being happy.  

But I have been learning, in great part to my darling son, that this is not healthy and will cause me to eventually implode.  It is not a natural habit yet, but I am learning to combat these emotional black holes with truth.  It is the only thing that gives freedom from their gravity-like pull on my soul.  

So I force myself to weed through my emotions ask God to help me discern truth from lies.

I am relieved and thankful that our daughter is well.  I do not want to experience the challenges of the Oliver's life all over again.  But then my breath catches and it feels like ingratitude for the gift of our son and the wealth of blessing his life brought into ours.

It feels like I am betraying Oliver or valuing him less when I celebrate the Baby Girl's health, though I know that is not the case.  Celebrating a new life does not mean that he is forgotten.  The truth is that rejoicing that Baby Girl appears to have perfect health does not mean that I loved Oliver any less because of his sickness, or that he was any less perfect for the purpose for which he was created.

I am not one to quote popular TV shows, but I enjoy Julian Fellows' writing and resonate with how he and Penelope Wilton have portrayed Isobel Crawley's grieving her son Matthew's death on Downton Abbey.  Violet Crawley, the Dowager Countess (I confess I enjoy just about anything that involves Maggie Smith), invites Isobel to a dinner party and a private opera concert.  Isobel at first declines, explaining,

“Yes, but you see I have this feeling that when I laugh or read a book or hum a tune, that it means that I've forgotten him, just for a moment and it’s that, that I cannot bear.”

Yes, it feels like forgetting, but I know that it is not, so I tell my self the truth over and over and let it, word by word, verse by verse, fight the black hole feelings that come from shame and lies and accept those that remain in a felt paradox - I can and will rejoice with thanksgiving and remember with thanksgiving.  And the truth is that we can not possibly forget - we needed Oliver - we are changed forever because of him.

After reconsidering, attending the concert, and having a delightful evening, Isobel thanks the Countess and notes how grief can play funny tricks on your thinking.  Though I think her lines were more eloquent than that.

So here's a rosebud to celebrate our new little one.  We are thankful for you, Baby Girl.  And we rejoice that you are well, and I think your big brother does too.

Oliver-Krupa Memorial Fund

When I mentioned Krupa in the previous post about All Saints' Day, I realized that I forgot to finish and publish this post explaining what we chose to do with Oliver's memorial funds.  Better late than never, so here it is, and it will explain more why Krupa was and is dear to me.

To those who we knew send a gift, we thanked them with a note that read as follows:

"Thank you for donating to Margham in honor of Oliver Michael Dunham. Margham is a non-profit mission organization that supports local pastors, churches, and orphanages in India, and was started by Oliver's grandfather, Darrell Dunham. A few weeks before Oliver died, a young girl who lived in a Margham orphanage named Krupa died from complications from AIDS. We have decided to use the gifts from Oliver's memorial to create a special “Oliver-Krupa” fund that will be set aside and used for special and emergency medical needs of the children in the Margham orphanages. We feel so blessed to have had access to so many medical resources as we cared for Oliver, and your gift will be used to help underprivileged Indian children in medical emergencies or with serious medical conditions. Thank you so much. To learn more about Margham please visit www.margham.org."

I remember Krupa as a quiet but bright child who loved to dance and lead singing during the daily worship at the children's home.  I know her "family" at the children's home miss her dearly, but, together with them, I look forward to dancing with her one day before our Lord's throne.

 (Krupa is in the light yellow dress in the front row)

Coming home to what would have been

Our week away was wonderful and much needed in so many ways.  I hardly thought about Oliver at all.  There were a few families with small children; so few that when we did see them my emotional reaction was jolting but thankfully it only happened a few times. It was a relief to have a vacation from the grief.

Coming home was more difficult that I anticipated.  Besides being hit with the expected wave of daily responsibilities there was also the brick wall of remembering. There were the photos around our home and our home itself, plus I was greeted with this magazine cover in our mail pile:

I can't stand to look at it but I can hardly tear my eyes away.  I don't dwell on the fantasy of "what would have been."  It is like a secret painting that I am fully aware of but intentionally keep behind a closed curtain; like consciously avoiding an addictive substance.  But occasional situations or images like the one above slam down hard and I am equally mesmerized and stricken. 

They look so happy.  Elsa's hair should be darker and browner but she's got that funny expression.  Nora's really a blondie with only a bit of strawberry but she has that sweet love-y smile and she loves her babies.  But that's him.  Those blue eyes and those cheeks.  And the chubby wrists.  And the hair.  My hair never looks like that when I'm having "quality time" with the kids (or hardly ever for that matter).  But that's him.  Even those funny little lips. 

Grief is taking different forms these days for us.  There are emotional days woven in and out of our weeks, but daily living has mostly normalized around basic routines. I recognize the "grief brain" taking over when I have severe difficulty focusing my thoughts on what to do next in the day, or I dread going to bed for fear of where my thoughts will turn as I fight insomnia, or I've driven past the familiar turn three times and the girls ask "mommy, why are we turning around again?", or I find myself rudely staring at my friend's baby or rudely pretending like he or she is not there.  

The girls are well and still very matter-of-fact about everything.  They talk of Oliver (and to him) frequently; he is still Nora's imaginary companion, and Elsa loves to make new pages in her memory scrapbook for him.  I believe God uses our daughters to help us heal by keeping us focused on his promises and the truths of eternity that we explain them again and again in response to their questions.  

We have had a busy summer and anticipate a full autumn.  I am thankful for both the distractions from our grieving that have provided relief, but also for the countless reminders that painfully drag me back in to the process of growing and healing.  

Thank you

I read this to our church family last Sunday:

"I was cleaning my kitchen floor last week and found myself wonder how long it had been since I last cleaned it. As I tried to remember I realized that it was last cleaned by one of you. And then I had to pause as I felt the fullness of the support you offered us during this season of our lives. Our minds and hearts are still reeling from our last year and a half with Oliver and I have barely begun to tackle the large stack of thank you notes we are blessed to need to write, but I didn't want any more time to pass without voicing our gratitude for your support for our family.

You have prayed for us. Usually I find that prayer is listed as “last but not least” but I decided to list it first because of how important prayer has become to us. Every time you prayed for us you shared our experience and pleaded our case before our God. Our situation was and is not a pleasant one, so it immensely encouraging to have you come to our home to pray with us and to know that you were praying and upholding us continuously on your own.

You visited us in the hospital before and after Oliver was born, and some of you were even able to see us up in Portland. You gave me rides to and from the NICU so that I could be with Oliver until I was able to drive on my own again. You have fed us countless meals. Some of you faithfully brought us a meal every week, and some made batches of my own recipes so I could have them on hand. A few of you offered to be a babysitting nurse and learned about Oliver's care so Joel and I could go out for an evening. You fed our cats and got our mail when were stuck in Portland for two months. You helped coordinate getting some of Oliver's food from our home freezer to us in Portland when my milk supply dropped from the stress. You mailed us books and music from our home. Your brothers and sisters in Corvallis and Portland brought us food up there and even stayed the night several times to help care for our girls. You helped transport and host our daughters as we got ready for discharge, and when we got home we found that you had deep cleaned and picked up our home and put food in the freezer for us. You handmade Oliver's baptism gown at the last minute when you realized that I didn't have one for him yet, 48 hours before you gathered at our home to celebrate God's covenant love and care for our family. You cleaned our toilets, vacuumed our floors, and mowed our lawn. You stayed up all night with us to help us stay awake and attentive when the night nurse had off. You dug holes in our garden and gave me flowers. You gave us counsel and supported our marriage by babysitting so we could have date nights. You washed and folded our laundry. You taught me how to run Oliver's emergency back-up generator. You helped us with childcare, and some of you came over almost every week to help watch our girls when I had to care for Oliver between nursing shifts or run errands. You gave little gifts and surprises to our daughters to make them smile. You helped us with many aspects of Oliver's memorial service and hosted our extended family, and continue to reach out to us as we enter the season of grieving and adjusting.

I'm sure I've missed some things but that's what I remember. Thank you. Thank you for being the physical hands and feet of Christ that mercifully and graciously kept us from completely falling apart this last year. Thank you.

I also want to tell you about the witness you have been in serving us so fully and with such endurance. Most likely you are not aware of how your expression was an example of loving and serving Christ to many people we met along our journey over the last year and a half. In each step of Oliver's medical progression, beginning with a few days after his birth, we met with a variety of social workers, case workers, and palliative and hospice workers whose job it was to offer us practical survival help as we lived with Oliver's medical conditions. Also, the doctors and nurses would often compassionately check in with me to make sure we had adequate help. When I described the support you gave us and assured them that we did not need any information or help with childcare, meals, transportation, cleaning, therapy groups, etc. etc., they were often surprised and always very much impressed. Again and again I heard them say things like “wow, you are really blessed to have an amazing community! That is really rare.” It is easy to take our church family for granted, but even a brief consideration of what our lives would have been like without you or any Christian support network is unimaginable to me. Your support for us provided many opportunities to talk to the medical community about our church family and our faith.

Thank you."

I only cried at the second sentence, and then I was able to gather my stage presence together and continue through the rest of it.  

And I will add to that our thanks to all of you who have cared for us from afar.  You also have prayed for us.  You have hosted us in your homes.  You have sent us financial gifts and flowers.  You sent us a box of organic, allergen free snacks and boxes of goodies for the girls.  You sent us care packages with surprises for all of us, and you ordered pizza for long distance.  You crafted special gifts for Oliver and for us in his memory, and you gave us a tree in his honor.  You flew and drove out to be with us the week after Oliver died and wept with us at his memorial service.  You mailed us dozens of cards and letters even literature to help guide us through grief. You sent gift cards to treat us and help add pleasure to our lives. You keep calling to check in with us. You read, and continue to read, these blog ramblings of mine and encourage me to keep writing. 

Thank you, thank you, thank you.  We thank God for you.

Phone Call to Heaven

Nora talks to Oliver all the time.  It is usually brief and goes something like this:

Nora (with the toy phone between her ear and shoulder as she walks around the house):
"Hi Aulver, it's Nora"

Pause.

"I'm really sad 'cuz you died."

Pause.

"What are you doing today?"

Pause.

"Are you walking and talking?"

Pause.

"Are you playing with Mr. Rogers?"

Pause. 

"I love you too!"

Pause.

"Ok.  I will talk to you later, bye!"


Oliver is very much a part of our daily conversation.  Sometimes he is visiting, playing with Elsa like an imaginary friend.  Sometimes Nora will randomly put on a forlorn face and say "Mommy, I'm sad Aulver died."  Sometimes Elsa pulls out her Oliver memory book to show visitors (like the guys who came to fix our computer!).  And the girls adore little babies.  They do so well with little ones, and love to play with them.  They ask "when will God give us another baby?" and we keep saying we don't know if or when that will happen, so I am so very glad that there are many babies around us for them to enjoy for now.

Felt fears

I feel I am coming to a closure (for now) of a few weeks of feeling some of the fears that exist within grief. 

One of the classic lines on grief that keeps popping up is from C.S. Lewis: "No one ever told me that grief felt so much like fear." 

The feeling of fear is very strange and feels inappropriate in spite of its strength, but it fits too.  And it doesn't matter if you know the fears are incorrect and unfounded, they still are there and I feel them even though I know better.

I found that I hated seeing the days move on past his death and memorial service.  I kept rounding down the number of weeks that had passed and felt myself fighting the passing of time.  I felt pain at knowing how much time had passed since he left.  As if somehow if it all still only happened a few days or a week ago, I would be that much closer to holding him alive. 

It is probably related to the fear of forgetting him as we "move on" with our lives.  Again, I know better than to believe that this is true, but the process of creating a new normal for our family feels like forgetting even though it is good and necessary and right and not forgetting at all.   

I fear that his medical conditions will be remembered more than his calm, peaceful, contented personality, or his curious and flirtatious coos.

I fear the loneliness of remembering him while the days move ahead and the world goes on.  See, it is confusing; I fear both forgetting and remembering. 

I fear the cautious silence of the conversation tip-toeing around him when I suspect that others have thought of him but everyone wants to be "sensitive" so no one mentions him.  Trust me, I expect that Oliver will rarely be far from my thoughts and you can't make me feel sadder or worse by anything you say.  Yes, I may cry sometimes, but that's the risk of being my friend nowadays.  It is much nicer to talk of my baby than the lonely claustrophobia of remembering him by myself.  Thankfully this has not happened often, and
in general I am so thankful to be surrounded by such good friends who are willing to live with me through this.  They help minimize this fear by talking openly with me and accepting my general awkwardness in conversation and at play dates.

As I mentioned in my previous post, below, I feared that I was not crying as much as I should have. 

I was initially fearful of the feelings of relief, even though, just as with these other fears, I knew better and I know to accept the relief as a good, positive gift and as part of God's providence for us.

We are relieved that we are no longer in emergency mode 24/7.  We are relieved that we no longer have to manage his intensive care.  We are relieved that we are not going to have to care for him for years and decades.  We are relieved that we did not have to make a difficult choice about when his life would end.  We are relieved that each time we did have to make a decision about his care our choice was very clear to us and we do not regret anything that we did for him.  We are relieved that his death was gentle and peaceful and at home without emergency.  We are relieved that he is well and whole and at peace.  I am okay with and comforted by this great relief, and thankfully I don't feel guilty about it at all. 

I have also felt considerable comfort and healing within the strong eternal perspective that Oliver's life has left me with.  I have always tried to live in the light of eternity and have found much comfort in dwelling on the "big picture" of God's covenant plan.  Despite my efforts, the relatively petty worries and troubles of yesterday, today, and tomorrow regularly consume my thoughts.  Having someone precious "on the other side" has made my eagerness for heaven incredibly stronger, and I find that I have been living in a very different light.  (One small example of this is how I reacted to our minivan - when we purchased it I stressed over the decision and getting all the replacement parts at the right prices and such, but when it died a few weeks ago I was just ok.  It really doesn't matter - when/if we need a new one we'll figure it out.)  That eternal perspective feels literally cemented into my heart now.  When I counter the fear of time passing away from Oliver's death with the impatience of having to wait for my own death it gives me peace for the waiting. 

I am thankful to be on the upswing of addressing and acknowledging the felt fears, and they are slowly dissipating one by one, at least for now. 

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!

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. 

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.

Real food through a feeding tube

I started this post over a month ago, but still wanted to post it in case it might be helpful to another family who wants provide real food for someone with a feeding tube.  I couldn't find too many resources on it myself, so with our nurses' help we came up with a system that worked for us. 

I have become a firm believer in the value of real, whole foods.  I am so thankful that I was able to provide milk for Oliver, and that we never had to give him formula.  (Yes, I pumped milk for over a year.  And by that I mean I pumped essentially 100% of my milk for Oliver - at most he was able to nurse two ounces a day, and that happened only rarely in the few months just after he was born.  And while I have the utmost respect for mothers who choose to pump when they return to work, this was very different.  Pumping every 3 hours for a sick baby who lacks stamina to nurse on his own even though he has the desire to is very different.)

When my milk supply started to decline I was determined to start him on "solids" just as I would a "normal" baby, especially since as far as we could tell his digestive system was working perfectly fine.  I approached his baby food the same way I did for the girls, except that we had the challenge of liquifying it enough to go through the feeding pump and g-tube.  I am so very thankful for my BlendTec blender that we got last year - it did this job wonderfully!  I LOVE my blender.

I chose to use simple (but extremely nutritional), traditional chicken stock that I made from "happy" free-range, organic chickens as the added liquid.  Oliver got to "eat" avocados, brown rice, beet greens, quinoa, sweet potato, butternut squash, and bananas.

Here's the chicken stock (with liver for iron and some meat bits too) and avocados.  Yum.  Blend until completely liquid, adding more stock until you get the needed consistency (FYI I put too many avocados in to start with in this photo, and had to take some out and add a lot more stock to get the right fluid consistency for the feeding tube).   Getting the "right" consistency was a matter of trial and error - blend the food, try running it through the pump, if it gets stuck blend it again and maybe add more stock, etc.

And here are the beet greens, all blended up, just because I think they are pretty:

This is chicken stock and quinoa (a traditional whole grain that is a more complete protein than most grains) in the best baby food/ice cube trays I've found.  They are the Green Sprouts Silicone Freezer Tray - they are flexible and hold exactly an ounce for each food cube, which was great as we were keeping track of what Oliver was eating.  (You can get them on Amazon.)

Yes, your kitchen will get messy in the process, but you won't have to do this for another month or so, and look at all the baby food you have now!

Freeze it all up, bag it, label it (I listed the date and ALL the ingredients so we could easily track all of his meals in case we needed to).

We did have a few times when the pump and tubes would get blocked, but it happened only rarely after the first few days of experimenting with how long each type of food needed to be processed.  We also continued to dilute the cubes of baby food with my milk since we were just supplementing his diet at the time.  My plan was to eventually give him 100% real food after he was "weaned" off milk (or when I absolutely couldn't stand pumping anymore), or at least mostly real food with formula supplementation if needed for some reason. 

This system worked great for us - if anyone stumbles upon this post and is trying to offer a loved one real food through a feeding tube, please know that I am not an expert by any means, but I would love to help if you have any basic questions about how we got it to work. 

Oliver's best therapist

(This post somehow got lost and not published on time - better late than never!)
(From October, 2012)

I'm really not a "baby person."  I love my children, and love doing things with them, but playing with babies is just not something I'm natural at, so spending extra intentional time with Oliver to help with his development is a challenge for me.  Elsa, however, is wonderful at it.  I've talked to her and shown her how to show him things, help him hold toys, and talk to him about the toys or whatever.  I often ask her to sit with him and play by him, but every few days I find her camped out next to him all on her own, "reading" to him or showing him whatever she has been playing with. 

She is such a blessing and an encouragement to me. 

Please "sign" Oliver's Memory Book

Instead of a traditional guest book at the memorial service I decided to do a "memory book" with photos for our guests to sign around.  There are empty pages at the front for me to add things like his birth certificate and footprints, etc.; it's his "baby book."  I have a most fabulous artist friend who flew across the country (or countries rather; she's from Canada, yea for Magdolene!) and she helped me design the cover.  She and Joel's sister, Emily, stayed up with me into the late night putting the pages together.  It was such a good way for me to start this new season of grief/joy, and it was so wonderful to get to spend so much time with two dear friends.

At the service we asked for our guests to write positive, encouraging note in Oliver's book.  I will also be printing out many of the enouraging emails, facebook posts, and comments we've recieved and will paste them in the pages along side the hand-written notes.  I will be including many of the cards that have been sent to us also. 

We know that Oliver's life and our journey have reached to many people (including many strangers to us!), so if anyone who would like to "sign" Oliver's memory book with a particular note please send us a message by signing his online obituary, by leaving a comment on this post, or by emailing us directly.  I cannot describe how encouraged and blessed we are to read your supportive notes and comments about how our son has touched your life.  Thank you.

Elsa started making her own memory book for Oliver.  Hers has a lot of blank pages at the back for her to keep adding pictures, drawings, thoughts, or whatever she wants as she gets older.  We hope it will help her continue to process as she matures, and it will also help us to know when she is thinking about Oliver again when she reaches for her book.  We also have a book started for Nora.

Here is Elsa showing her book to Grandpa Darrell Dunham: