Help and healing

After trying to resist for over an hour, I'm just going to put my swirling thoughts onto virtual paper, even if it is the wee hours of the morning.
We had a meeting with our pastor couple this week. A number of things came out of that conversation but one that has been rattling around in my head is the the topic of prayer.
I've been hesitant to post publicly about our current situation out of fear of judgement and what people might say that could hurt me but am realizing that while that hesitation comes from a place of self preservation it is actually harming us. So, here it is.
Early in June we found out I was pregnant. This was thrilling and terrifying at the same time. Elianna's genetic condition has a chance of occurring again for us in future pregnancies because Michael and I each carry a mutation on the same gene. We chose to have prenatal genetic testing, which included a trip to Toronto for a CVS procedure, where a sample of placenta is taken for DNA analysis (placenta is the same DNA as baby). The results from that test came and we were given the difficult news that we were having another child with the same disorder as Elianna, Zellweger's Syndrome (more correctly known as Peroxisomal Biogenesis Disorder) and baby is another girl. Since many have asked, this kind of testing is 99.8% accurate. A new grieving process has begun, layered on top of mourning Elianna, whose first birthday was celebrated shortly after we received this news.
This summer in the waiting was indescribably difficult. The burden of the news has felt utterly crushing. The challenge of planning for the birth of baby Eli (Milena's nickname for baby, it means 'my God' which feels so fitting) has felt insurmountable.
Prayer has been difficult for me. I know God can heal because of what I read in the Bible, but I know that doesn't mean He will. Even though I would love nothing more than to have a child that I get to keep for a lifetime, I might not get that. Somehow, since begging God for a healing miracle has, to me, felt ineffectual and too difficult to hope in, while at the same time preparing for what we know to be true, I've stopped asking for His help altogether. No wonder my burden feels crushing!
And, out of fear, we have kept this burden to ourselves. Never more than now do I understand what scriptures references to the body and carrying each other's burdens mean. During Elianna's life, many people from different parts of the world were praying for us and we felt carried through that challenging time. Many people contributed practically in hands on ways, but many more prayed. We felt it. It truly did sustain us and carry us through a difficult journey. I acknowledged this often during that time and yet now, in the present I had somehow forgotten the value of those prayers. The practical help is also vital but the prayer, while less tangible is no less powerful.
This is what I am realizing now. That rather than feel guilty over my own lack of prayer, I need to reach out and rally the forces, admit my injury and allow the body to do it's work and come to my rescue. I'm still in shock on many levels. I feel incapacitated and numb. In my own lack of prayer I haven't even known how to share or let people know what to pray for or about. I am at a loss for words much of the time. Our pastor mentioned the story of the man who asks Jesus to heal his child, he says, "I believe, but help my unbelief."
This is now my personal request to God. And, I ask that you would pray for us, for God's sustaining presence in our lives through this dark season of mourning. Your prayers will carry us and your presence in our lives will speak love in bold ways to our hearts.
Another thing that was said at that meeting:
Anxious in nothing.
Prayer in everything.
Thankful in anything.
Peace.

My biggest struggle has been feeling anxious (that's for another post sometime) and a deep lack of peace. We had those things during Elianna's life, a peace that felt surreal. I believe it was because of the powerful prayers of many people praying on our behalf.
To bring it back around to the title of the post. Help and healing. This is what we are asking of God, please join us.

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perspective

I often find it's easy to slip into a pity party about all the loss and grief I'm going through.  Even more so when I think about Milena and that she has to experience this at such a young age.  Saying things to myself about how she shouldn't have to deal with this and so on.  Other people say and think it too.  It seems to be somewhat cultural.  I've bumped into this before, in the sense that we expect babies to live and people respond the news of a baby's death with more sadness and dismay than say, someone who was 95 years old.  
It has always kind of rubbed me the wrong way.  I mean, we all know life is uncertain and not really in our control.  I don't think Elianna's death is any more tragic than my Opa's was or my brother's was.  It's all loss and sadness.  It's also hope.  These people whom I love are now with God.  That's a pretty good place to be.  Yes, I'm sad, and grieving and feel the loss of their presence here on earth, for sure.  In many ways the sadness feels the same.  The day to day effects of that person being missing from my life is different.

Today, a different thought or perspective flitted through my brain.  I'm honoured with the special task of helping Milena develop a framework about death in her most formative years.  How cool is that?  She as she grows up will have a comfort level talking about death that not everyone has.  She will be equipped with the best kind of empathy to walk with others in their own losses. Amazing.

We had a visit to Elianna's grave the other day.  Milena wanted to bring some of her toys to give Elianna.  It was sweet to think that she cares about her sister and wants to show it in this way.  We opted to pick dandelions and give those instead.  Milena had concerns about giving her food, so we talked about how Elianna's body doesn't need food anymore.  She asked about Elianna coming back, so I explained that.  The caretaker was there doing to weed whacking, and Milena was very concerned that he would unbury Elianna, so I assured her, that no one would do that.  We talked about how we missed Elianna, we watched logs float down the river.  It was good to just be and let the conversation flow.  

I sometimes wonder if I will answer all these questions right, or in a way that she can understand without forming crazy ideas (like I did as a child), but I'm realizing that I don't have to.  I just need to be there so we can keep talking about it.  I'm so glad the cemetery is on the way to the park, it forces us to keep the conversation open.

Layers of Loss

Today has been a day of much emotion. Tears threaten with every breath.

I wonder why we talk about tears like that. Why are they threatening? It turns out it feels good to cry, it's so refreshing. Maybe like a storm threatens?

This weekend I look at my nearly three year old and am amazed at this brown eyed person staring back at me (I feel like I'm looking at my childhood self). She's smart, funny, and so full of life. I love her immensely. And yet, I struggle to enjoy her when she tests my patience (which feels like every second of every day, I'm not nearly as kind as I would like to be at times).

But then, other memories come crowding in. The 1st and 8th of every month are heavy days. October 1, the day Elianna was born. January 8, the day she died. She would've been 7 months old in May, and it's been 4 months since she died.

As I sat in church today, choking on tears, I had memories flashing through my mind. Of sitting in church back in 2009 mourning the loss of a very new life, being in the middle of a miscarriage. Of waking up to find Elianna dead in the bed beside me. Remembering holding her in the wee hours of that night when she was still alive. Of carrying her into the funeral home.
Then getting news today that someone close to me also had their unborn baby die on Mother's Day.

Facebook was full of the usual glossy Mother's Day good wishes. But I came across a surprising amount of posts acknowledging that it's a tough day for many, for different reasons. I know this all too well.

It's easy for me to get caught up in feeling like I am some kind of magnet for sad or difficult circumstances, especially that they seem to pile up. I mean, look at the things that I can list about today, and they are all personal, never mind the stories of so and so's brother that lost a mum recently. I could easily feel sorry for myself. But, I stopped to wonder today, am I the only one walking around feeling like I have too many layers piled on? Can't be true, right? So, what gives. I'm realizing that as a whole our society just doesn't have a framework or create space for loss and grief. So, we all walk around carrying it, alone and silent.

I've been seeing others being courageous and create rituals around these things, to remember and to celebrate. I love the idea of these things, but my perfectionistic self struggles to come up with the right thing. Like, for it to be a ritual or tradition I have to pick the right thing that will always work, and that I can remember, so I can do it each year. Like it has to always be the same, it can't change next year. It ends up paralyzing me. Silly, I know. When I missed going to Elianna's graveside on the specific date like I wanted to, I just gave up and figured I'd skip it. A wise friend pointed out that it was no less significant to go the next day or week, when it did fit into my schedule. Or, the fact that, my first attempt was thwarted by a plant I bought and wanted to plant at Elianna's grave, which exploded with a spider infestation and so I threw it away (since it was too cold to put it outside yet and I didn't want spiders in my house).

I'm still trying to recover from that and find a new plant. I'm trying to loosen up a little and just start doing things to remember and ritualize. I guess I'll settle into what works for me, and it's ok if it changes over time.

Anyway, I suppose that's enough rambling for today.

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Another 100 days

Elianna was with us for 100 days. Today marks 100 days without her. It's strange how quickly some things can return to normal, though it really never will be the same normal as before.
Physically in our home things look more normal, the medical supplies have been removed, the cradle is put away, our daily routine has shifted again to what feels normal. My heart mourns but also finds some relief in the newfound space in my life for living. The three hour feeding schedule was really hard for me, and having free time feels foreign, but is a gift and I am trying to use it well in light of the perspective gained through this experience.



April 17 from Jesus Calling:



I am training you in steadiness. Too many things interrupt your awareness of Me. I know that you live in a world of sight and sound, but you must not be a slave to those stimuli. Awareness of Me can continue in all circumstances, no matter what happens. This is the steadiness I desire for you.



Don’t let unexpected events throw you off course. Rather, respond calmly and confidently, remembering that I am with you. As soon as something grabs your attention, talk with Me about it. Thus I share your joys and your problems; I help you cope with whatever is before you. This is how I live in you and work through you. This is the way of Peace.



He will have no fear of bad news; his heart is steadfast, trusting in the Lord.

—Psalm 112:7



“Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand.”

—Isaiah 41:10 nkjv





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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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defeated

Just a quick update before I get into what I really wanted to write about. I've been in communication with the neurologist and after making some adjustments to dosage, we seem to have made some headway. Elianna is still having some seizures but not the crying kind. They are less severe and less frequent, most days.

Elianna has a cold, that comes with a terrible cough that shakes her whole body. It sucks and it is sad to watch, but the good thing is that if she's coughing, it means she is able to clear her lungs. She is a bit congested but nothing too crazy, no fever, so we just need to ride it out.

Today was the kind of day where I felt totally utterly defeated at every turn. I had one goal for today, evidently it was far too lofty to attain. Milena's library books were due today. I wanted to take a nice walk to the library (15 min) and hang out there for a bit and pick out some new books. In all, this trip takes about one and half to two hours from when we start putting on winter gear to when we get home and have it off.
Around 10am, when the pump/feed was done, I started the process, which first involved collecting all the library books, so Milena and I did that together (next time we should do this in advance, but then I have to figure out where to hide the bag so it isn't unpacked again before we actually go). Then I remembered that no one had eaten breakfast, so we worked on doing that. By the time all the little things that needed to be done before we left the house (and choosing to ignore others, like washing pump dishes, in an effort to save some time), it was 11am. No longer time to leave and get back in time to be pumping at noon. Sigh. I missed it. The crappy thing is, if I don't get out in the morning, it just doesn't work. After the noon feed, it's naptime. Then there's the 3pm feed, during which M is sleeping or has just gotten up. It's 4pm before we are ready to go anywhere and that's when I need to start supper, because we aim to eat at 5pm, so that we can all eat together before I have to go do the 6pm pump/feed (plus it's dark and colder and sucks to go out then). After supper is cleaned up it's time to start getting ready for bed and what do you know, another day is done. Sigh.
Because I kept attempting leave the house, I skipped doing dishes and other little tidying tasks (laundry), so now I sit here with the day done, my one goal for the day not accomplished and feeling like the house imploded and the chaos might just eat us alive.
I wish I could stay calmer and find ways to get a little more cooperation out of M, but she totally feels my sense of urgency and magically seems to find this incredibly slow pace and insane ability to get distracted. She even wanted to go to the library and go for a walk (she loves these things and often asks for them) and talked about it between each of Elianna's feeds, but couldn't stay with it long enough to actually get dressed in a timely enough fashion to be able to leave the house.
There are times when it does work and she is able to get herself ready while I feed Elianna, and those days are marvelous, I just wish we could find that groove a little more easily and consistently.
I also have to recognize that today was maybe not the best day to make the library my goal but the books were due today, and all week it was on my radar to make an attempt for the library (all the other days this week it didn't even make it to the point of being attempted). I was very tired. I opted to go out late last night, because the call of portzelki was just too strong. I just have to say that they did taste amazing, all warm and soft and sweet and fried. Yum!


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