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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2 months old!

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Merry Christmas

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Seizures

I realized this morning that many of you probably don't know that Elianna is having seizures because I haven't said it.
Seizures are a common feature of Zellwegers. Elianna has been having them for sure since we came home from the hospital (and likely before, just no one saw them, it is hard to distinguish in babies, though I did once see what I thought was one).
Sometimes the seizures seem to coincide with the blue episodes/apnea (where she stops breathing), other times not. Her seizures have changed a lot over time too. The current ones have a few different flavours, some where she just looks like she's having a big stretch, some where she flinches repeatedly, and some where they make her cry involuntarily (these are the worst to witness because even though she isn't aware it's still hard to hear and there's not much I can do).
This morning she had a crying seizure at 5am (first time that's happened during sleeping hours) and by 8am she'd had a total of 7 of these crying seizures. That's how I got onto this subject in the first place.
I often go through the day is such a haze I don't have the ability to count how many she's having, because every day blurs together and the rhythm of each day (pump/feed, do a few things before the next one, pump/feed, wash pump dishes and repeat) makes it hard to keep track.
So, today I got a picture of what is going on, since one woke me up and I looked at the clock and then had my alarm for getting up give me a definite time frame to count through. She's had another one as I type this blog post.
She is on an anti seizure medication but we need to give it a couple of weeks to take full effect. So far it doesn't seem to be doing much but we are hopeful it will help.


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roller coaster

As the days go by and I am learning more about Zellwegers through the experiences of other parents, I'm learning one thing. This is a disease that is incredibly unpredictable. We don't know what will happen or when. Peroxisomes are structures within cells that perform part of a cells metabolism processes. This is what makes the condition incurable, it's a not chemical problem, it's structural. There is a host of things that are common in this disease, demyelination of nerves which can effect almost anything, often hearing and vision are impaired, muscle tone and motor development, adrenal insufficiency, seizures and more I can't think of at the moment. The brain was effected in utero and doesn't have all the folds it should. Kids can gain skills and reach developmental milestones and lose them, some even go up and down with skills. It just depends on which nerves are effected and how much and when more demyelination happens.

Most kids with the disease die from respiratory insufficiency/failure.










Elianna's death is no longer as imminent as we first thought it was, but it is still the expected eventual outcome. For the time being she is growing (by that I mean physically, gaining weight) and stable. We are for the time being leading a relatively normal life (if tube feeding and the realities of her low muscle tone, which means she has little to no head control at 10 weeks and can barely move her arms can be called normal), knowing that we will experience a big disruption to this normal at some point in the future. It's kinda like the plans one makes in the last days of pregnancy (only our time frame is unknown instead of a couple of weeks), where every plan is made with the contingency that it could be disrupted by labour and delivery, only instead of anticipation it's dread that we face, because we know it will be hard and incredibly sad when our disruption happens.





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