Trepidation

Today is Eli-Grace's 3 month birthday.







The past week has been full of anxiety as Eli of course steps a little outside of her normal and has been exceptionally sleepy. It's hard to read these signs and know what they mean. It seems to have settled out again, and likely isn't anything of great concern. That being said, what's on everyone else's mind, and on ours is, that Elianna died just 8 days after her 3 month birthday...we only had about a week of warning with her, where we felt like something was up, but didn't know how to interpret it. In hindsight, we of course can now see what was going on. It's hard to not to hold our breaths as we live these days leading up to that landmark. We've done this before and we know what's coming, but anticipating your child's death is still a brutal experience.







Milena is becoming more and more of a big helper in our home. She certainly loves to be a part of caring for her sister.

It's hard to say what will happen with Eli-Grace. For some context, I know of a family who had identical twins with the same condition and they died at 4 and 8 years old. Doctors aren't saying anything prognosis wise, and they really can't, it's just too hard to predict anything. She's definitely got her own personality and way of being in the world. Her issues are different that Elianna's, but we seem to be managing them reasonably well.

Today I was watching her, and marvelling at the fact that she can move her arms (more than her sister could). I can't always tell if the movements are seizure activity or not, but I try to enjoy them regardless. So, it seems that she is doing a bit better than her sister at this age, but that's not to say that disease isn't still present and progressing.






My gut says we will get to spend at least part of the summer making memories as a family with Eli. We've managed to be adventurous a few times, and will hopefully do a few more outings. It's a bit of a challenge with the pumping and feeding schedules, but I'm more flexible now than last time (I have a much greater trust in my milk supply), and feeding feels more flexible too, because Eli-Grace lets us know if she's hungry, though it's much easier to stick to the schedule.







As a family, we are managing (sort of). Trying to developed a schedule that accommodates both girls' needs is tricky. Meal times and bedtime seem to often coincide with feeding and pumping. So, sometimes I get creative.







Walking this journey certainly has taken it's toll on us all emotionally. We are short with each other, much more than I would like to be. Michael and I struggle to have any time for each other, and feel like we are ships passing each other. Milena feels starved for time with me. There are days where I feel like we get it right. But there are many other days where it just feels awful. Please continue to pray for us, we need God's peace and strength to fill our home, and the gaps in our resources when it comes to our relationships with each other, and heaps of grace for the each other in the hard moments.

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Cold hands

We are back from our trip to BC. It was intense but worthwhile. I'm glad we got to go on a meet the baby tour. We saw friends and spent time with family. Getting ready to leave and travelling was exhausting. Staying at the MCC Guesthouse was brilliant. Turns out that I have a tribe out west too, people came by for visits, shared toys with M and brought food when they stayed for mealtimes. Abbotsford was GREEN and warm and very springlike which was good for my soul.
Eli seems to be improving when it comes to things like motor skills, or at least is a little more capable than her sister. She can turn her head from side to side when she lays on my chest. She can move her arms and bring her hands to her face. She also cries when she's hungry and when she has a dirty diaper.
It's easy to want to evaluate these things as signs that things are good, that she is doing good. The thing is, this disease is unpredictable and things can shift suddenly. I don't like to evaluate these things, but simply observe them.
Other things are also going on. She had some pretty big apnea episodes at the beginning of our trip. The other day during a belly rub to ease some gas pains, I realized I could feel her liver (this was something that was very enlarged and could be felt in Elianna's belly in the week leading up to her death).
Many times at night I reach over and feel her cold hands and have a moment of panic. I then move my hand to her body to see if I can feel her breathing. Her hands get cold because she can move them out from under her blanket. I wonder if she is uncomfortable? Tonight I will try swaddling her, see if that helps keep her hands warm.


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2 weeks

Eli-Grace Mahala Schultz
Born March 14, 2016 at 7:57pm weighing 7lbs 15 oz and 22 inches long.  

Without getting into a lot of details, we had a slow start to labour, not really a big surprise, since this has been my mode of operation with both of the other girls.  Once things were really going, around noon on the 14th, the reality of our circumstances really hit me hard.  It was by far the hardest thing I've ever done, labouring with such an unknown waiting for me at the end of it.  Apparently I kept saying out loud between contractions, but I'm going to get to hold her, this was some kind of strange motivation, but it was the one thing I knew for certain, that no matter what happened, I would hold our baby Eli that day.  
Once Eli was delivered, I was able to pick her up.  Turns out God heard our prayers, I wanted so very much to have some time with Eli, to be able to bring her home.  As I held her, I realized she was breathing, her colour was much better than Elianna's, everyone in the room was amazed.  The doctors tried suctioning her, but there wasn't really anything to suction.  A bit of oxygen was used, just to encourage her to keep breathing.  Realizing things were stable, we had Milena brought in to meet her sister, and shortly thereafter made the call to go home as planned if she was stable.  Milena got the privilege of cutting the cord and was totally grossed out by vernix.  She went and got a wash cloth to wipe it off my shoulders and chest, so sweet!  We got ourselves together and headed home a few hours after Eli-Grace was born.

The first few days at home were a little chaotic, as we arranged our living space to accommodate our newest family member.  The key things were out of storage or still nearby from Elianna's life, but we hadn't officially made a space for Eli in our home.  Milena is the most doting big sister a baby could ask for, but needs some help channelling her love in ways that are helpful.  

I inserted a feeding tube when Eli-Grace was about 16 hours old and gave her her first feed shortly thereafter.  It went smoothly, even though it's a skill I hadn't used in over a year.  This time around, tube feeding was much less stressful and I had the confidence to follow my maternal gut instincts, rather than some feeding chart and pressure from doctors to meet calorie requirements.  I am pumping breastmilk again to feed Eli-Grace, and it is going well.  Again, much more relaxed this time, as I have confidence in my milk supply.  Our doctors and midwife have been amazing, checking in with us regularly, smoothing the road for us and coming for home visits.  

Eli-Grace's condition seems similar to Elianna in some ways, and in other ways feels different.  The prenatal diagnosis still stands, she does have Zellweger Spectrum Disorder.  The list of symptoms is long and varied, but here's what we know is going on with Eli-Grace.  She is having seizures, she has low muscle tone, potential vision and hearing impairment, and poor reflexes, particularly her suck/rooting reflex seems to be non existent (which is why she has a feeding tube), and she has had some apnea episodes and has silent reflux.  She does have some sensitivity to pain, based on the fact that she cries when I insert the tube, and even fights it a bit, or remove the tape that holds it in place.  She seems to cry to let us know she's hungry, which has meant the schedule has been held to more loosely, since it feels like we can rely on her to tell us she's hungry.  Most of these issues can be traced back to neurological problems caused by the disease, and as such are not curable, though some symptoms can be managed with medication, like the seizures.  

Overall, we are doing reasonably well.  With a prenatal diagnosis, we have been able to better prepare ourselves for this journey, and yet in many ways still feel totally unprepared.  Emotionally we are not in such a state of shock.  We have more flexibility in our work lives and our support people have been ready to jump in and help when we need it.  This is not to say we aren't stressed or tired or anxious.  We are.  We are caring for a dying infant.  That is hard.  Nothing can change that, but it feels just a tiny bit less awful this time.  Maybe it's because we are somehow a little bit accustomed to living in this kind of tension, I don't know.  

The famous question of how is Eli-Grace doing is a tough one to answer.  We have had our share of ups and downs in these first two weeks.  Every little thing leaves us questioning if it's an indicator that death is imminent.  That being said, as we get used to her normal, we have less of these freak outs and feel comfortable that today isn't going to be the day she dies.  So, when we say she's doing well, it just means we don't think she's going to die today, or even this week.  The things she is doing are within what's expected for her condition and are part of her normal, but it certainly doesn't mean there isn't things going on, apnea and seizures are scary things to witness.  It also doesn't mean she isn't going to die on some day in the future.  We don't know when that will be, so for the moment, we say she is doing good because that is what we know.  

We appreciate your love and prayers and practical support.  

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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