Lessons

Life has carried on in a surprising whirlwind. I am finding myself motivated to take better care of myself with my suddenly freed up time. Classes at the gym, time with friends and trying to find a better balance. Still fall short on the spiritual care side of things but I read this from Jesus Calling today:

I am a God who gives and gives and gives. When I died for you on the cross, I held back nothing; I poured out My Life like a drink offering. Because giving is inherent in My nature, I search for people who are able to receive in full measure.

That lesson of learning to receive is one that I have learned in the last half a year (has it been that long? it's hard to believe but Elianna would be six months old on April 1). I keep thinking our time must be up, but gifts keep coming, kindness keeps coming our way. It's overwhelming. I try to just accept and be grateful. Even when I can't be grateful directly because the gifts come anonymously.

I had an experience yesterday where I offered some help to someone with a baby in NICU and was told it's ok we are fine. It stung a little and for the first time I think really got it (a wise friend keeps telling me that people really want to help and you need to let them). It's a shame that our culture generally makes it hard for us to receive or admit need.

I'm currently involved in a little swap that's been nicknamed sister wife swap. It's just intended to get us together to help out in one household for a day as though there were two wives running the household, for the moral support and back up in crazy moments that it can provide and hopefully tackle jobs that are hanging over us because they just feel too overwhelming. I'm looking forward to it but at the same time it's a little intimidating to be in each other's homes on such a personal and intimate level. Giving and receiving (of course the second is the scarier part).

Anyway. It seems receiving is a theme lately. It's good but humbling to learn about receiving.

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Grief Brain. It's a Thing.

Words, from an email that I've subscribed to (Refuge In Grief):

I put the spatula in the freezer. Forgot where I put my keys. All those “widow-brain” moments that used to be so common have faded over the years, but they can, and do, come back.

If grief has recently erupted in your life – and by recently, I mean anything from yesterday to two or so years ago – you will most likely find that your brain just does not work.

You may have been brilliant and organized Before. Able to multi-task, remember, execute.

But grief changes all of that. Changes it radically.

Think of it like this: let’s say you have 100 currents of brain power for each day. Right now, the enormity of grief, trauma, sadness, missing, loneliness, takes up 99 of those energy currents. That remaining 1 current is what you have for the mundane and ordinary skills of life. 

Remembering that cooking utensils belong in the drawer, not the freezer, that your keys are under the bathroom sink where you left them when you ran out of toilet paper – these things are just not high on the brain’s priority list. Your mind, like the rest of you, is doing the best it can to function and survive under very severe circumstances.

Now, up there, I said this grief-brain will happen anywhere up to around two or so years after your loss. I use that two year marker not because it is scientifically proven, but because that was right about when some of my own brain skills began to come back on-line.

Fleetingly at first.

I’d feel like I had it “back together” with my memory and cognition, only to have a completely confounding day. Then my brain would snap to again. And then lose it. Back and forth.

In time, the days my brain was functioning well stretched into longer and longer arcs. The confounding days or actions became more sporadic.

As I approach the 6 year mark, it’s those confounding days that are rare now; my mind seems to have largely recovered.

So the good news is, if you’ve felt like you’re losing your mind, if the simplest of activities proves far too complicated, you are not crazy. You’re completely normal. Your mind is simply doing the best it can with very limited resources.

If you are afraid your mind will never return, I can tell you that, most likely, it will. It may have some changes, but your general capacity to think, reason, remember, and organize will most likely come back.

Slowly at first, but day by day, your brain will come back on-line.

For me, when my brain gets tired and confused, it’s a clue that I need to slow down. Rest. Check in with my heart, see what comfort I might need.

It’s an on-going dance, this living with grief. A constant companion that is sometimes light, and sometimes just too much.

Your way will be found. You’ll just need to listen to yourself as best you can.

Grief

Grief is not a new thing for me. But this situation feels incredibly foreign. How do I grieve the loss of a child, one that spent more time growing in my womb than outside. I feel like I hardly knew her but I miss her so.

And the other side is that it feels strangely familiar.  I'm in a different role this time, but I'm living in a reality where death has claimed a sibling/child in my family again.  


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3 months old!

This is late. What can I say. We had no idea this would be our last photo shoot but it turned out to be one of my favourite ones.





Matching socks that I knit. The little ones never fit Milena.




















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Trust

This is a devotion I read in Jesus Calling in the early days of bringing Elianna home. It resonated with me then and even more so now. We are having some rest and it feels so good. I didn't know just how hard we were pushing to survive until I could slow down. There are still many things weighing heavy on my heart in terms of the future, and so the reminder to trust God is ever pertinent.










November 19

Leave outcomes up to Me. Follow Me wherever I lead, without worrying about how it will all turn out. Think of your life as an adventure, with Me as your Guide and Companion. Live in the now, concentrating on staying in step with Me. When our path leads to a cliff, be willing to climb it with My help.When we come to a resting place, take time to be refreshed in My Presence. Enjoy the rhythm of life lived close to Me.

You already know the ultimate destination of your journey: your entrance into heaven. So keep your focus on the path just before you, leaving outcomes up to Me.

I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.
—Psalm 27:13–14

“In your unfailing love you will lead the people you have redeemed. In your strength you will guide them to your holy dwelling.”
—Exodus 15:13


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Burial

I'm not sure I can put together any words. There are some pictures to share. The memorial was beautiful and very good for my heart. The burial was simple and peaceful.

Most of the time acceptance is where I'd say I find myself. But then, waves of sadness also come crashing in. This experience has marked me. It feels strange to be out in public where I seem totally normal, it's not like anyone can tell by seeing me what has happened. When I see myself in the mirror, I look different to me.








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100 days

Elianna Shirley Arica died peacefully on Thursday, January 8th around 7am. She is now safe in the arms of Jesus.

There are few words that seem appropriate or adequate at a time like this. We are sad, so very sad and there are also many other emotions swirling in the mix.

Thank you for all of your support, love, care and prayers. We feel surrounded, loved and carried in this difficult time. We so appreciate that you have stayed in our lives despite it likely being uncomfortable and hard, we have not felt alone as we walk this out and that has been a blessing.

There will be a memorial service on January 18 at 4pm at Soul Sanctuary (2050 Chevrier Blvd).

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Trust

This devotional from Jesus Calling feels very pertinent in the uncertainty that was today.




I want you to learn a new habit. Try saying, “I trust You, Jesus,” in response to whatever happens to you. If there is time, think about who I AM in all My Power and Glory; ponder also the depth and breadth of My Love for you.

This simple practice will help you see Me in every situation, acknowledging My sovereign control over the universe. When you view events from this perspective—through the Light of My universal Presence—fear loses its grip on you. Adverse circumstances become growth opportunities when you affirm your trust in Me no matter what. You receive blessings gratefully, realizing they flow directly from My hand of grace. Your continual assertion of trusting Me will strengthen our relationship and keep you close to Me.

I have seen you in the sanctuary and beheld your power and your glory.
—Psalm 63:2

See, the Sovereign Lord comes with power, and his arm rules for him. See, his reward is with him, and his recompense accompanies him. He tends his flock like a shepherd: he gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.
—Isaiah 40:10–11

Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.
—Psalm 139:7–10


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Eyes

Elianna had an eye appointment today. It was very helpful and at the same time not particularly informative.
Her eyes look normal and there actually isn't cataracts (I don't know where that information got misconstrued but it did). She appears to have normal eyes although the nerve in her right eye is a bit small, which may or may not effect her vision. Basically this is a wait and see situation. Nothing new there and no pun intended. Haha.

Unless we have concerns we don't need to see this doctor again. Nice in terms of appointments but too bad because he was fantastic and not every one we've met is someone I'd care to see again.

Today has been a sad day though. All over again the brutalness of the situation is staring me down. I am caring for a baby that is dying, is still as helpless as the day she was born (no smiles or giggles or attempts to roll over or grab a toy) even though she's now been here for 3 months. We are finding our groove which is good but at some unknown point in the relatively near future it will change again. Not just change like things do when babies reach new milestones but like a huge crevasse opening in the ground beneath us. I am scared that crevasse might swallow us up entirely. I sometimes don't even know what to say in conversations that involve the future.

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Wise words.

Something for Elianna has changed.  It's weighing heavy on me.  It's hard to know what it means, and that is crazy making.  
I struggle with wavering in our decisions about Elianna's care.  It seems like there's always something more or else that I 'should' be doing.  Are my choices giving up on her or allowing her to die, or even speeding up her death? Palliative care has talked to us about considering the path of least regret.  Since all the choices suck, choose the one that you won't regret later when you look back.  One doctor described the journey like walking through a thick forest with a high mountain peak being your destination and to figure out what that mountain peak is, that way it'll guide all the other little decisions along the way while you're in the forest.  That was a helpful picture.  

Another friend shared these wise words:

Ah I see. The topic of how and in what way a person should die is complicated for sure. But in Elianna's case I feel it is simpler. We know the ending here. Better doctor and different treatments won't change that. Your choices are centered around giving her the warmest and easiest passage to the next phase of her existence. You are already doing that. You brought her home, you are caring for her fully, love her and including her. There isn't anything more you need to do, or should feel obliged to do. Both of you have been clear and in agreement about allowing the path to take its natural course, from the beginning. Stick with that.


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