A broken Hallelujah
I invite you to take a spoonful of my sorrow.
If you are not ready to do that, this is not the blog post you want to read.
It’s hard and it’s getting harder.
Sometimes my cup of sorrow seems manageable. Daylight brings obligations of motherhood, little people to feed and feed and feed. But, when I lay down to sleep, there are nights it overflows, silently soaking my pillow while I cup two hands around my pregnant belly and hold my broken daughter, alive and kicking.
As my due date approaches, there are things to be done. Things I never want to do.
I looked up how to pronounce “palliative.”
I have a map of burial plots available in “Baby Land” at Belcrest Cemetery.
I ordered books about rabbits that listen and a boy who had to say goodbye to his dead baby sister.
I have to pick a day to meet our daughter and watch her die.
On January 4, we were at OHSU all day getting an extensive ultrasound, meeting with our new doctor and getting a fetal MRI. When we sat down with our doctor, I could tell from her eyes that this wasn’t her first hard conversation that day. I can’t imagine being in her position, constantly delivering devastating news to parents hanging on to shreds of hope. We learned that our baby girl has a host of problems with her brain. For the past week, I’ve been going over the doctor’s notes and googling definitions, trying to get a handle on what these problems are. So, here’s my best explanation:
Lissencephaly:
Around the time we told our kids they were getting a baby sister (September), the neurons in her little brain were supposed to be migrating from their place of origin out to their permanent location within the outer layers of the brain. When this migration happens properly, folds and grooves of cellular layers become apparent (how we think of a brain looking). For some reason, our baby girl’s brain is still smooth – meaning this migration never happened – meaning her cerebral cortex is severely underdeveloped. The cerebral cortex is responsible for conscious movement and thought. This means she could have difficulty swallowing, failure to thrive, muscle spasms, seizures, and severe psychomotor retardation. The prognosis for children with lissencephaly depends on the degree of brain malformation (hers is severe) and can be life limiting, with childhood death. Children often die due to aspiration of food or fluids, respiratory disease, or severe seizures. Some survive but development can be very limited to 3-5 month-old level.
Schizencephaly (cavities of empty space in the main outer part of the brain) or Medial Atrial Diverticula (Her brain ventricles have sacs of fluid pushing out of their normal bounds, creating large fluid-filled spaces where her brain should be growing). The doctors think this is most likely the latter of the two (atrial diverticula). Either way, both of these defects could mean developmental delay, cognitive disability, motor impairment, blindness, seizures, and paralysis.
Agenesis of Corpus Callosum:
Complete absence of the fibers that connect the two cerebral hemispheres. This usually means severe seizures, too much fluid around the brain (hydrocephalus), impairment of mental development, and/or delays in physical development.
Take a deep breath.
Good news: our baby’s brain stem seems to be intact, so that means she will most likely be born alive, and may breathe on her own for minutes, hours or days.
That’s really all the good news, but it’s huge.
In this unideal world I’m existing in right now, my prayer has been that my kids will get to cuddle their baby sister, alive, even if it’s only for a few minutes. Even with COVID restrictions, it sounds like they will let the kids in for about 15 minutes, if we choose a palliative birth. A palliative birth is basically birthing a baby that immediately goes into hospice care. No tubes, no immediate surgeries, just getting to hold our baby and see what she can do. Doctors will be around to make sure the baby is comfortable, and we basically will just soak her in and let her know she is so loved in those first and last moments we get with her.
The other option is to monitor her birth closely, assess her needs when born, and immediately start life-saving measures (including surgeries, breathing tubes, feeding tubes, etc.). They would take her directly to the NICU, where only me and Bryan would be allowed to visit her.
It is impossible to know what level her brain will ever function at, and how many seizures she will endure, even in those first minutes of life. It’s also impossible to determine the threshold at which we basically say, “Enough is enough” and let her go to Jesus.
As impossible as it seems, we will have to decide where that line is.
The doctors are recommending we induce labor sometime in the next 38 days.
I cannot wrap my brain around deciding this day.
Part of me wants to wait as long as possible, to give our girl the best “chance.” The problem is, none of the experts are really giving her a chance, regardless of when she is born. Also, waiting longer will put us at higher risk of her coming on March 7, the 11th anniversary of my first miscarriage – and the 10th birthday of my firstborn. I think we can all agree that while this would be poetic, it would also be devastating for Cayden.
Through all of this, I have never lost confidence that God is in control.
I think that’s part of what makes deciding on a day so hard, because it feels like I am taking control – and I really don’t want to.
All I can do is pray for clarity and peace in making this decision. God has given me a wise husband, who tends to think more clearly than I do in emotional situations, and I am thankful for this. But ultimately, the decision is mine, which weighs heavy on me. My OB told me that this heavy weight is why the OHSU doctors told me I could induce anytime – even if that meant tomorrow, just to alleviate the pain of carrying this agony longer. All I could answer with was, “But isn’t that my job? I’m her mother.”
I want to keep her safe for as long as possible, but I must remember to separate what I want from what is best for my family.
So this is my sorrow I invite you to partake in.
I invite you to cry with me, Google medical definitions with me, pray for me, and then, when you are ready, step back and celebrate my daughter’s life with me.
Piper once asked me why God would give us a baby if she was just going to die.
I didn’t have an answer, but I think I know now.
One answer has been plastered on my bathroom mirror for the past 6 years.
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you” (James 1:2-5).
Six years ago, I started asking God for wisdom, because I wanted to be able to counsel wisely.
Be careful what you ask God for.
I don’t know how much wiser I am in many things, but I know that I am wiser in grieving because in the last 6 years, I have been pregnant 4 times. One of those pregnancies brought great joy because it brought us Judah – named after the baby that turned Leah’s lips from bitterness to praise in Genesis 29.
The other three pregnancies have brought tears, but also joy.
This baby girl is no different, and so, we continue to praise the God who gifted her to us.
Her name, Hallelujah, reflects this.
Meaning “praise the Lord,” we have been struck by the beauty and power of this name as it constantly reminds us to give glory to God even for the hard things.
We sing hallelujah when we remember the faces of our children when they found out they were getting a baby sister.
We sing hallelujah every time Piper snuggles up next me, immediately feeling my belly for a kick from her sister.
We sing hallelujah for every ultrasound picture, even if her little head has no crown in this world.
We sing hallelujah every time we raise our voices in church, giving us a peek into the sounds of heaven.
Our daughter may never hear or see while on this earth.
That means the first sights and sounds our baby daughter will experience could be the brilliant voices of angels singing her name in praise to our God. We have such hope because this world is temporary and so we set our sights on heaven. She will be broken no more.
We are grieving already, but we are also praising God for his faithfulness to uplift us and show us why reliance on him only comes through trials. Grieve with us, but we also ask that you praise God with us for our broken Hallelujah.
*Photos courtesy of the lovely Lindsay at LiveJoy Photography.
If you are not ready to do that, this is not the blog post you want to read.
It’s hard and it’s getting harder.
Sometimes my cup of sorrow seems manageable. Daylight brings obligations of motherhood, little people to feed and feed and feed. But, when I lay down to sleep, there are nights it overflows, silently soaking my pillow while I cup two hands around my pregnant belly and hold my broken daughter, alive and kicking.
As my due date approaches, there are things to be done. Things I never want to do.
I looked up how to pronounce “palliative.”
I have a map of burial plots available in “Baby Land” at Belcrest Cemetery.
I ordered books about rabbits that listen and a boy who had to say goodbye to his dead baby sister.
I have to pick a day to meet our daughter and watch her die.
On January 4, we were at OHSU all day getting an extensive ultrasound, meeting with our new doctor and getting a fetal MRI. When we sat down with our doctor, I could tell from her eyes that this wasn’t her first hard conversation that day. I can’t imagine being in her position, constantly delivering devastating news to parents hanging on to shreds of hope. We learned that our baby girl has a host of problems with her brain. For the past week, I’ve been going over the doctor’s notes and googling definitions, trying to get a handle on what these problems are. So, here’s my best explanation:
Lissencephaly:
Around the time we told our kids they were getting a baby sister (September), the neurons in her little brain were supposed to be migrating from their place of origin out to their permanent location within the outer layers of the brain. When this migration happens properly, folds and grooves of cellular layers become apparent (how we think of a brain looking). For some reason, our baby girl’s brain is still smooth – meaning this migration never happened – meaning her cerebral cortex is severely underdeveloped. The cerebral cortex is responsible for conscious movement and thought. This means she could have difficulty swallowing, failure to thrive, muscle spasms, seizures, and severe psychomotor retardation. The prognosis for children with lissencephaly depends on the degree of brain malformation (hers is severe) and can be life limiting, with childhood death. Children often die due to aspiration of food or fluids, respiratory disease, or severe seizures. Some survive but development can be very limited to 3-5 month-old level.
Schizencephaly (cavities of empty space in the main outer part of the brain) or Medial Atrial Diverticula (Her brain ventricles have sacs of fluid pushing out of their normal bounds, creating large fluid-filled spaces where her brain should be growing). The doctors think this is most likely the latter of the two (atrial diverticula). Either way, both of these defects could mean developmental delay, cognitive disability, motor impairment, blindness, seizures, and paralysis.
Agenesis of Corpus Callosum:
Complete absence of the fibers that connect the two cerebral hemispheres. This usually means severe seizures, too much fluid around the brain (hydrocephalus), impairment of mental development, and/or delays in physical development.
Take a deep breath.
Good news: our baby’s brain stem seems to be intact, so that means she will most likely be born alive, and may breathe on her own for minutes, hours or days.
That’s really all the good news, but it’s huge.
In this unideal world I’m existing in right now, my prayer has been that my kids will get to cuddle their baby sister, alive, even if it’s only for a few minutes. Even with COVID restrictions, it sounds like they will let the kids in for about 15 minutes, if we choose a palliative birth. A palliative birth is basically birthing a baby that immediately goes into hospice care. No tubes, no immediate surgeries, just getting to hold our baby and see what she can do. Doctors will be around to make sure the baby is comfortable, and we basically will just soak her in and let her know she is so loved in those first and last moments we get with her.
The other option is to monitor her birth closely, assess her needs when born, and immediately start life-saving measures (including surgeries, breathing tubes, feeding tubes, etc.). They would take her directly to the NICU, where only me and Bryan would be allowed to visit her.
It is impossible to know what level her brain will ever function at, and how many seizures she will endure, even in those first minutes of life. It’s also impossible to determine the threshold at which we basically say, “Enough is enough” and let her go to Jesus.
As impossible as it seems, we will have to decide where that line is.
The doctors are recommending we induce labor sometime in the next 38 days.
I cannot wrap my brain around deciding this day.
Part of me wants to wait as long as possible, to give our girl the best “chance.” The problem is, none of the experts are really giving her a chance, regardless of when she is born. Also, waiting longer will put us at higher risk of her coming on March 7, the 11th anniversary of my first miscarriage – and the 10th birthday of my firstborn. I think we can all agree that while this would be poetic, it would also be devastating for Cayden.
Through all of this, I have never lost confidence that God is in control.
I think that’s part of what makes deciding on a day so hard, because it feels like I am taking control – and I really don’t want to.
All I can do is pray for clarity and peace in making this decision. God has given me a wise husband, who tends to think more clearly than I do in emotional situations, and I am thankful for this. But ultimately, the decision is mine, which weighs heavy on me. My OB told me that this heavy weight is why the OHSU doctors told me I could induce anytime – even if that meant tomorrow, just to alleviate the pain of carrying this agony longer. All I could answer with was, “But isn’t that my job? I’m her mother.”
I want to keep her safe for as long as possible, but I must remember to separate what I want from what is best for my family.
So this is my sorrow I invite you to partake in.
I invite you to cry with me, Google medical definitions with me, pray for me, and then, when you are ready, step back and celebrate my daughter’s life with me.
Piper once asked me why God would give us a baby if she was just going to die.
I didn’t have an answer, but I think I know now.
One answer has been plastered on my bathroom mirror for the past 6 years.
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you” (James 1:2-5).
Six years ago, I started asking God for wisdom, because I wanted to be able to counsel wisely.
Be careful what you ask God for.
I don’t know how much wiser I am in many things, but I know that I am wiser in grieving because in the last 6 years, I have been pregnant 4 times. One of those pregnancies brought great joy because it brought us Judah – named after the baby that turned Leah’s lips from bitterness to praise in Genesis 29.
The other three pregnancies have brought tears, but also joy.
This baby girl is no different, and so, we continue to praise the God who gifted her to us.
Her name, Hallelujah, reflects this.
Meaning “praise the Lord,” we have been struck by the beauty and power of this name as it constantly reminds us to give glory to God even for the hard things.
We sing hallelujah when we remember the faces of our children when they found out they were getting a baby sister.
We sing hallelujah every time Piper snuggles up next me, immediately feeling my belly for a kick from her sister.
We sing hallelujah for every ultrasound picture, even if her little head has no crown in this world.
We sing hallelujah every time we raise our voices in church, giving us a peek into the sounds of heaven.
Our daughter may never hear or see while on this earth.
That means the first sights and sounds our baby daughter will experience could be the brilliant voices of angels singing her name in praise to our God. We have such hope because this world is temporary and so we set our sights on heaven. She will be broken no more.
We are grieving already, but we are also praising God for his faithfulness to uplift us and show us why reliance on him only comes through trials. Grieve with us, but we also ask that you praise God with us for our broken Hallelujah.
*Photos courtesy of the lovely Lindsay at LiveJoy Photography.
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