I Can Hear the Ghosts Calling

Yesterday I was looking at the pictures that hang on our living room wall from our wedding day two years ago.  I realized how different I looked from the smiling bride in the pictures, the woman who had no clue what life would hand her in just two short years.  Maybe I don't look different to other people, but I do to myself when I look in the mirror.  Looking at the picture and thinking about everything that has changed, I realized that I lost the last little part of myself that was still a child the day a doctor said the words "severe hydrocephalus." 

It's not that I believe I was naive, immature, or childish before this.  Having a brother with special needs, I am often told that I grew up too fast.  This may be true, but having wonderful parents, a part of me did remain a child long into my twenties.  That piece of you that still irrationally believes that your parents can make anything feel better, even if they can't fix it.

I've done all the "adult" things: paid the bills, fixed a broken sink, and earned a paycheck. I've taken care of a sick husband in the hospital.  I have seen pain, I have experienced hurt. I have gotten through to the other side of an abusive relationship.  I have taken a baby with broken bones out of the arms of his screaming father.  I have carried a crying toddler out of the home of a mother who promises she could get clean if she just had one more chance.  I have sat with a crying mother while she asks if her six year old will ever say "I love you."  I've listened to an autistic child tell me they do not have any strengths and have no friends.

Through all of that, and more that I don't care to mention, I believe this small part of me still remained a child.  But the day a doctor sat in a room with my mother, husband, and myself and wrote the words "severe hydrocephalus" on a piece of paper and told me to "terminate the pregnancy," that piece grew up too.  As the doctor used scare tactics to tell my mother and husband termination was best, I knew that I needed to be the one to fight for my child, whether the doctor was correct or not.  Over the next fews days, I felt and saw many around me give up on my child before everything was confirmed.  Joe and I held hope, but not many others did.  I began doing research and making contact with CHOP to get more information.  I found that most of the things the doctor said to scare us ("permanent damage" to me, and hints at death), were lies.  Joe and I made our position clear with friends and family, and did find a ton of support.  However, during those first few moments all childish beliefs that my parents, or doctors, were able to make anything okay, were gone. 

Children like to think they can do anything on their own and do not like to ask for help, especially older children who think they are adults.  Admitting you need help and accepting help shows maturity.  This is another way I have changed since that day in July.  Despite always knowing that my parents, and others in my life, would help me anytime I asked, I really preferred to do things on my own.  I would ask how to do something or for some advice, but I wanted to DO it myself.  Can't you just hear a child saying "I do it myself"?  I carried this stubbornness into all my relationships, including my marriage.  I would rather do things myself than ask Joe for help most of the time. 

My first gut reaction to being told about Mira's hydrocephalus really showed the extent to which I wanted to do things on my own.  Up until now, I've only ever admitted to Joe was my first thoughts were.  I decided that if Joe, the doctors, and my family pushed me towards abortion, I would leave.  I would go somewhere and see the pregnancy through to the end, and if I survived, I would come back after.  I decided that I would do this myself.  Of course, that crazy thought only lasted a few minutes, as I realized how much pain I could cause everyone else by doing that.  And no one continued to push for termination after we asked for a different doctor and began educating ourselves on our options. But my gut reaction to a crisis was to runaway and handle it myself, even though I have a wonderful husband who never made any indication that he would not fight just has hard for his child.

I found a picture in that basement

My face a hundred years ago

But I don't want to do like he did,

So full of pride and all alone

Escape is in my blood

Fear is in my bones

But I don't want to walk that road

Please help me?

Hold my hand, I can hear ghosts calling

Help me stand, even if the sky is falling

And I want you to know, I can't do it alone

Hold my hand, my hand, my hand

(The Fray)

Over the last 3 months, I have had to let go of all this "stubborn independence" too.  I have had to let Joe help me get dressed when I was too weak from "morning" sickness to do it myself.  I have had to ask Joe to help me walk up the stairs when the pain from no amniotic fluid is too intense.  I have accepted money from family and friends who want to help with CHOP expenses.  I have had to admit that I am not okay to people, rather than say I am fine.  I never thought that accepting/needing more help would be a part of growing up, but it really is.  A child says they can do it themselves, an adult asks for what they need when it is too much.  A child runs away to deal with things their own way (either physically or emotionally), an adult advocates for their needs and asks for support from others.    

Maybe over time I will find other parts of myself that are still a child, but right now, when I look at those pictures of a happy bride, I realize how much I have already changed.  And I know there is much more pain to come.  Thankfully, I also know that God, my family, and my friends are there for Joe and I.  Maybe I learned that my parents can't make my pain go away, but I also learned that if I accept it they, and many, many others, will help me through it. 

The Book of Love

It has been 148 days since I found out I was pregnant.

It has been 131 days since I was told I had a miscarriage.

It has been 127 days since I saw Mira's heartbeating on an ultrasound.

It has been 119 days since doctors assured me that Mira was healthy and we celebrated a miracle. 

It has been 85 days since I cried and asked an ultrasound tech "Is it really bad?"

It has been 45 days since it was confirmed that Mira could not survive after birth.

It has been 148 days since I fell in love with my daughter.

Time feels so important right now.  148 days ago I didn't think I could stand waiting 9 months to meet my child.  Now, I want to slow time down.  45 days ago feels like years ago, and yet like it was yesterday.  Joe and I are doing our best to spend every minute we can focusing on Mira and creating enough memories in these next couple months to make up for the decades we are losing.  I struggle with feeling guilty when I focus on anything except Mira.  If I miss reading to her and talking with her one night, I feel horribly anxious and like I have failed.  The truth is though, no matter what I do now, I can't make up for the lifetime that I am going to miss with my daughter.  I can fill her life with nothing but love.  That is what I am doing and what I will continue to do.  I will ensure her life is respected and honored.  I will have to count on God to show her all the things I cannot.

Such a short time,

Such a long road

All this madness

But I know

That the silence

Has brought me to His voice

And He says,

"I've shown her photographs of time beginning

Walked her through the parted seas

Angel lullabies, no more teary eyes

Who could love her like this?"

(I Will Carry You, Selah)

Yesterday, Joe and I returned to CHOP for our follow up visit.  I had an ultrasound to check on Mira, met with an OB and midwife to officially transfer my care to CHOP, and met with a psychologist and neonatologist.  It was a long day, but much shorter than the last visit.  This time we were there about 4 hours.  We expected this to be a very depressing and horrible day.  We expected to spend the four hours talking about the death of our daughter.  Instead, the amazing staff at CHOP made it a day about us as parents and making us feel as in control as possible.  They made it a day about Mira's life.

The ultrasound went as expected, no shocking information.  I have little to no amniotic fluid at this point, due to Mira's inability to swallow and her kidney/bladder concerns.  Mira's lungs are also not developing properly due to the lack of amniotic fluid.  Her head is currently measuring at 30 weeks, though I am 24 weeks (and her body measures 24 weeks as well).  At our 18 week ultrasound, her head measured 20 weeks, so it continues to grow at a faster rate due to the hydrocephalus.  Mira's heartbeat is still strong at 143 beats per minute.  I saw her wiggle/kick as the tech pushed on her and felt it as I saw it.  It is so strange to see something on a TV screen and feel it inside you at the same time!  I'm sure all the other Moms can relate!  

The OB and midwife went over my medical history and gave a basic physical.  Both were wonderful and kind.  Next we met with the psychologist and neonatologist, both part of the palliative care team.  I asked the neonatologist to bluntly and specifically tell us exactly what would happen to Mira if we asked them to do everything medically possible to help her survive (rather than using palliative care).  I explained that Joe and I were not considering this, but I needed to hear exactly how bad things would be, so I could remind myself of this if I had doubts about our decision, either now or in the years to come.  Our human minds are so good at playing tricks on us and making us think we could have done more.  I would like to share these details with all of you, in case you have wondered why we are not choosing "heroic" measures for Mira.  If you do not want to know these details, skip over this next paragraph.

If we chose NICU treatment for Mira, I would still have a c-section.  As soon as she was delivered she would be taken to a warmer, suctioned and intubated.  Even with a ventilator her undeveloped lungs would struggle to get enough oxygen to her body.  She likely would need to be resuscitated a number of times.  The doctor said they are very good at this and would most likely get her to the NICU alive.  During this time, we would not be able to be with her, she would be with medical staff only, as I would be in the OR still and Joe would not be able to be there until she was stable.  If Mira survived all this, she would need an IV to sustain her.  The doctor believes that most likely even with all these interventions she would not survive more than a few hours, or maybe a day or two.  If he is wrong and she did survive, she would be looking at several surgeries on her brain, heart, bowel, and bladder.  Likely a catheter and dialysis.  If she managed to survive all that, which is nearly impossible, she would not have any quality of life.  She would be unable to talk, walk, express her needs in anyway, and live much like a coma patient but aware and very possibly in pain.  We will not put Mira though this pain and suffering just so we can try to keep her longer.  

If we chose palliative care (like we have), Mira will be born via c-section (due to her head size).  She will quickly be suctioned and cleaned and handed to Joe within minutes or even less.  If I feel capable during the surgery, I can hold her as well.  At the very least Joe can hold her next to my face.  Mira will never leave our side.  The psychologist will be present to support us and ensure our wishes are followed.  She will also take lots of pictures.  Once I am closed up, we will go back to our room and have Mira with us without any medical equipment.  Medical staff will monitor closely to watch for signs of distress that could indicate she is experiencing pain.  If she is, she will be given a sedative that will prevent her from feeling discomfort.  We can be with her, take pictures, give her a bath, etc for as long as we want, no matter how soon she passes.  

Originally, Joe and I believed that we would have only minutes with Mira alive.  The neonatologist, said this is still possible, but it is also possible we could have hours or even a day with her.  He seemed to feel most likely we would get around an hour.  An hour seems wonderful when you thought you had no chance at more than 2 minutes.  He was very clear that it is impossible to accurately guess this though, and we should be prepared for anything.  

The psychologist then went over what we wanted and what support we had/needed.  She was wonderful.  All the things we already planned (a bath with special soap, a special dress, her blanket and stuffed fox, NILMTS photographer) were all okay with her and she had other ideas as well.  She wrote everything down and will type up a plan that we can continue to add to over the next visits.  This plan will be shared with everyone to ensure our wishes are followed.  Next time we will also meet with a Child Life Specialist, who will help us plan memory making options. 

We still do not have a date for the c-section, in fact, we were given a broader range of dates.  At this time they are thinking 32-36 weeks, which would be early December to early January.  We go back in three weeks to check on Mira's head size.  They believe they will be able to give us a date at the following visit (so maybe the end of November).

Thank you to everyone who has been praying, texting, reaching out, sending gifts/cards, reading this blog and commenting on it, and supporting us in any way.  It means so much to both of us.  This journey has been such a roller-coaster of feeling blessed to carry Mira, and feeling terrified and angry to lose her.  I know that these feelings will continue for years to come.  Support from others is what gets us through, so we thank you.  

Reading to Mira about her namesake-
such a beautiful gift, thank you! 

The book of love is long and boring

No one can lift the damn thing

It's full of charts and facts and figures 

And instructions for dancing

But I, I love it when you read to me.

And you, You can read me anything.

The book of love has music in it,

In fact that's where music comes from.

Some of it is just transcendental,

Some of it is just really dumb.

But I, I love it when you sing to me.

And you, You can sing me anything.

(The Book of Love, Peter Gabriel)

It's All I Know

This weekend something new hit me.  I was at Wal-Mart picking up some cleaning supplies and walked by the baby aisle.  Seeing all those sweet little clothes and socks made me sad thinking that I didn’t need to buy any, but not overwhelmingly upset.  I was prepared to pass the baby section.  However, as I kept walking I passed the toddler clothes.  Adorable little dresses and outfits.  At that moment the realization hit me that I am not just losing an infant.  I am losing a chance to see if my daughter likes dresses or sweat pants better.  Does she like sports and watch football with Daddy?  Or does she love to read and learn about all kinds of things?  Does she want to play with makeup or think it is a waste of time?  Does she like to color and make crafts?  Would she like playing in the dirt or want to wash her hands right away?  

I have known all along that I would not see my daughter grow up, but I was so focused on missing first words, first steps, getting to breastfeed, and plan a nursery that I had not looked beyond that.  Joe will not walk his daughter down he aisle.  I will not take pictures of her first day of school.  She won’t pick an instrument in middle school.  

Joe and I have a drawer in our guest room that we were keeping items in that people gave us for the baby before we knew her diagnosis.  There isn’t much, but there are several outfits, a nursing pillow, a bottle, and a few other items.  Since then we have added two tiny premie cloth diapers, a baby blanket, and a stuffed animal.  Items bought to be with her in the hospital when we say good-bye.  The stark contrast of the little outfits given with love and hope and the items bought to prepare for loss is heartbreaking.  I can’t really look at those outfits, because I know she will not grow into them.  I can’t imagine ever moving them from the drawer though.  

What if I am standing in the closet trying to talk to you?

What if I kept the hand-me-downs you won’t grow into?

What if I really thought some miracle would see us through?

What if the miracle was even getting one moment with you?

(Ronan, by Taylor Swift)

People often express to Joe and I that they cannot understand why this would happen to us.  Some of them express that I have experienced enough challenges in my life.  Some express that Joe and I are good people.  Some express that Mira is so innocent.  I don’t know the answer.  Not even a little.  Joe and I do struggle with this.  I hope at some point we will get a medical answer that explains why Mira has so many anomalies in her tiny body, but we have not gotten one yet.  What I know you all want, and what Joe and I really want though, is the big “WHY” answered.  Why is this happening? Are we supposed to learn from this?  Is any lesson worth the death of a child and this pain to her parents?  I don’t think we are supposed to learn from this.  I think it will change who we are. It already has.  That's not really a bad thing though, trauma changes you.  I know this quite well.  But it is how you change that matters.  No, I don’t think a lesson needs to be learned though.  

I do think that God has a plan.  I don’t think I will ever know what part Mira’s life and my pain plan in His plan though.  At least not until I am with Mira and Him and can ask.  Not knowing things bothers me.  I would like to know the answer to everything as soon as the question is posed.  If you ask me what a word means, what something stands for, or how a theory came about, and I don’t know, then I guarantee I will look for the answer until I find it.  You can’t google the meaning of my daughters life though.  (I may have tried anyway).  Sitting with not knowing something is so hard.  It makes you angry.  It make you question things you thought you knew.  It makes you hurt.

I found Angie Smith’s (author of I Will Carry You) thoughts on the subject comforting.  She states that she struggled with this question of ‘why’ herself after her daughter live for only 2 hours due to birth defects.  Smith writes about a story in a book she read in the past (The Hiding Place, Corrie Ten Boom).  A young girl asks her father a questions that she is too young to hear the answer to.  He in turn asks her to carry his bag off the train, but it is too heavy for the child.  When she tells her father this he says: “Yes and I would be a pretty poor father who would ask his daughter to carry such a load.  It’s the same way with knowledge.  Some knowledge is too heavy for children.  When you are older and stronger you can bear it.  For now you must trust me to carry it for you.”  Smith goes on to say: “What a beautiful example not only for our children but for ourselves as children of the Lord. Many things in this life are not meant to be understood.  We are simply not strong enough to bear them, but where there are gaps in our understanding, there is also the grace of God who has chosen to carry the traveling case for us.  Our role is to trust it into His keeping.”

This explanation does not take away the pain of my grief.  It does not make me stop questioning why.  It does remind me that God is protecting me still in this time.  And that just has to be enough for now.  I don’t know why this is happening.  Just as I don’t know what Mira’s favorite color would have been or what her favorite game to play would be.  All I know is that God is the same as he was before Mira’s diagnosis and I believed He had a plan then, and I still believe it now.

Sometimes ignorance reads true

Hope is not in what I know

It’s not in me, it’s in You

It’s in You

It’s all I know

I find peace when I’m confused

I find hope when I’m let down

Not in me, in You

It’s all I know.

(You, Switchfoot)

I have not yet found the peace, I have not found the hope.  But I do take comfort in trusting that God will hold me through it all.