Sunday, April 29, 2018

Cloud Boy

Up in the clouds live the cloud children.  They play all day with the wind and the rain.  They go swimming when it rains and paint pictures with the rainbow colors afterwards.  Father Sun and Mother Moon take care of them.  One day, all the cloud children were playing ball, when the ball rolled right through a hole in the clouds and fell down below.  There was one little boy named Noah who ran off to c+hase it.  When he saw it fall through the clouds, he knealt down besides the hole it fell through and looked.  He saw something he had never seen before.

What Noah saw was a beautiful land with mountains, trees, rivers, and oceans.  He saw animals of all kinds and he saw people.  He thought it was the most beautiful place he had ever seen.
Everyday he returned to that hole in the clouds to watch what was happening on this beautiful land for he wanted to go there.

One day as he was watching he saw four people.  He saw a mother with brown hair that everyone called Tracy or sometimes they called her Teacher Tracy for she had lots of little children around her.
He saw a father named Josh, and two little boys, one older one named Elijah and one littler one named Jonah.  He saw them hiking, playing in the river, and mostly he saw them playing with balls too just like Noah loved to do.  Noah wanted to go and play with them so badly.

So that very evening, Noah went to Father Sun and Mother Moon and told him that he wanted to go down to the beautiful land and be with this family.  The Sun and Moon were not surprised for there had been many cloud children who had wished that before and had indeed left the clouds to live on this land that the Sun and Moon called Earth.

Mother Moon explained to Noah that to travel to the land called Earth, he would get there through a dark wet place inside his new mother Tracy where he would grow a new body.  After that he would travel through a rainbow bridge to the bright land of Earth where his family would welcome him with lots of love.

Noah was very excited and he immediately said yes and began his journey.   When he got inside of Tracy he grew slowly and as his new body was growing he noticed that some parts were not growing as his old body had been.  His lips felt funny and he could not move them very well.  He began to grow slower and slower and his hands were bent instead of straight and also hard to use.  His ears were not in the right place and he could not hear very well.

Noah really wanted to travel to Earth and be part of this family.  He really wanted to play with Elijah and Jonah and all those little children in the river, so he keep working really hard to grow his body and keep his heart beating strongly.

When his body was done growing and it was almost time for him to travel over the rainbow bridge, his body became too weak and he just was not strong enough to come out and play, so he said goodbye to this new body and went back to the clouds to live with Mother Moon and Father Sun again.  He was very sad and his family was very sad too.  Tracy, Josh, Elijah, and Jonah missed Noah so much and wished that he was able to play with them.

Noah told Mother Moon and Father Sun that one day he might want to come back in a different body that wasn't so hard to grow in, but for now he would stay playing ball in the clouds and watch his Earth family from above.  And indeed, every day, he looks through that hole and watches them and whenever his family misses him, they can wave to him from below.

Loving someone you never knew

Some days I am blown away by the amount of love I have for someone I only met after his death.
I certainly was not prepapred for how hard it would be to lose him.  It felt like a bomb had hit, one I had no idea was coming even with months of preparing for all possible outcomes.

Many people know me well, they know the mother I am: the organic, protective crazy woman armed with research on screen viewing and young brains and who slept with her oldest until he was seven and nursed him until he was five.  So one can imagine what it might have been like for me to leave my baby in the hospital with strangers to never see him again.

I was blown to bits, I didnt recognize myself at all.  I don't cry easy, and I cried for five days straight.
Everything I thought I would feel was not present at all, but instead replaced with utter grief.  I didn't want to see anyone I loved except those that were present at his birth.  It was as if they were there with me when the bomb exploded and because of that, I felt drawn closer to them and wanted them around all the time.
I have been broken-hearted, sad, and depressed before, but loss is different.
I spend a lot of my days attempting to hold normal conversations with people about everyday things like the car breaking down or about their recent vacation, or even my recent vacation,  but most of the time I want to scream, "do you know what just happened, my baby died!"

So here are some things I want you to know about the person I am now, who somedays is not anyone I recognize:

  • My love for Elijah and Jonah had nothing to do with Noah                                                       "It's a happy life, but someone is missing.  It's a happy life AND someone is missing."       -Elizabeth McCracken
  • I count every day of what would have been his life, I always know exactly how old he would have been and so does the rest of my family.  I think we always will                                    "Your friends may say 'time heals all wounds'.  No it doesn't, but eventually you will feel better.  You'll be yourself again.  Your child will still be dead."  -Elizabeth McCracken
  • When people don't mention him or what just happened to us, it makes me feel isolated and alone in this reality.  You cannot remind me that he died, I feel it all the time                        "Our child dies a second time when noone speaks his name."  -Mitch Carmody
  • How I approach life with my children has differed, at least internally.  I no longer think, "that won't happen to me" or "everything will be fine".  In fact, there is an intense video in my head anytime there is any danger anywhere close.  I visualize it happening and feel for a moment that it just has.  I have to remind myself before I react that it hasn't happened yet and approach my children in that way.  The other day Elijah was acting as bat boy for his dad's team and I almost stopped him because I was so sure he was going to get hit by the bat of the player on deck.  I have visualizations of my boys dying from such injuries.  I know some of this is normal for all mothers, but the panic that accompanies it now is different.                         "Once you have been on the losing side of great odds, you never find statistics comforting again." -Elizabeth McCracken
  • I have read a lot and remarkably all of what I have read has been raw, and comforting, and has allowed me to know that I am not alone and I will survive this.  Mostly though, the authors have taught me so much about being present for someone as they grieve.  Before Noah, I never would have known what to do, now, I think I understand.                                                        "On good days I can look ahead and understand that I will always be becoming who I am.  On good days, grief is part of me that I can learn to carry.  But I am wise enough to know that I will need you to restore me to myself on the bad days, when the most I can do is so much less"  -Elyria Rose

While it is true that people have to go back to their lives and cannot be there in a way that I always want, it is also true that I am so fortunate for what I have experienced since his diagnosis and his death.  I was not told, like many woman that I had to get over it when leaving the hospital or to move on because of my other children.  Instead I have countless cards, phone calls, dinners, flowers, and love. Instead I have the love and understanding of an enormous tribe.

  • I have friends who have left their families for days to be with me
  • I have family who dropped everything to fly hundreds of miles to meet their nephew/cousin not knowing if they would ever get to see him again or if they would even get to see the color of his eyes
  • I have midwives who climbed into bed to hold me while I cried
  • I have women who have faced the same fate and whom have become a family I never would have wanted and who came over and shared there stories so we could cry together
  • I have a therapist who came to the hospital and to my house to hold my hand while my body healed and milk dropped from my breasts and gave us a beautiful piece of art to hold our memories of Noah inside
  • I have mothers from my school holding their own babies who hugged me simultaneously despite the fact that facing baby death must have ripped them apart from the inside out 
I know I will survive not despite Noah, but because of him.  Because of what he gave others who in return gave to me.

Noah is now:  a urn, a quilt hanging above my bed, a dream catcher, a memory keeper.  He is a picture of a pregnant belly, a friend's watercolor picture painted of cloud boy.  He is river rocks I collect.  He is the blanket he was wrapped in.  He is a garden and a treehouse.  He is irreversible lessons about life, love, connection, longing, and loss.  What a legacy for someone who never took a breathe outside my womb.

Thursday, May 18, 2017

Noah's birth

Noah... that name has had so many different meanings to me throughout my life with special people, but right now it is most precious.

I had much more leeway with this pregnancy because of Noah's diagnosis so while I have always gone to 42 week or a bit longer, my midwives had no problem with going 43 or 44 weeks or more this time.  I really wanted to see what my body would do on its own since the last two times I had to break my water to get labor started if I wanted to stay with my midwives.  I decided at 42 weeks though that the anticipation of the unknowns with this baby was getting to be too much for my family.  So I decided to only wait until 43 weeks and the day after that to go in and have my water broken.  I had made the decision, but was still unsure going into it if it was the right one.  When we got to the birth center, they broke my water and there was light meconium which got a bit darker throughout the day.  It made me feel better in a way because I knew that meant it was time for him to come out.  I was so sure that labor would start, it worked like a charm both times before.  We stayed in SB, walked on the beach, had lunch with a friend, etc...  nothing happened.  Went home, had dinner with my sisters who arrived that day, nothing happened.  Went to bed, nothing happened.

I was quite upset in the middle of the night thinking that something was wrong, I couldn't understand why this wasn't working with such an advanced pregnancy.  Josh couldn't sleep either.

The next morning (Sat, April 29th), we went back to the birth center to talk further.  They mentioned a medicine called cytotec which works well in these situations, but I had regained my faith and wanted to wait 24 more hours to see if I could still start labor on my own.  I told them that is what I wanted to do, but that I thought we should check his heartbeat one more time, I had only felt slight movements in the last two days.  So she did a belly check, she thought he was lower, even though my cervix had not changed in many weeks.  Then she did a check for his heartbeat.  Every time we had checked his heartbeat regardless of how much movement I felt that week, it was always very strong. My midwives always found it quite easily.  But this time, it wasn't there.  Even though my midwife did a very thourough check twice, I knew when she checked the first place that he was gone.  Maybe that is why I asked for the heartbeat check that morning.

That news changed everything because for a body to start labor when the baby is not alive can take much longer to happen and eventually there is risk of infection to me.  So we began a course of labor inducing medication.  We waited at the birth center for hours and I did enter early labor.  I labored there all day, but Josh and I were already dealing with the grief of losing our baby.  I mentioned something about just wanting to go to the hospital to handle this with medication because the emotional strain was enough.  One of my midwives encouraged this and after talking to some people I trusted, I decided that I didn't want to face the possibility of much more difficult induced contractions.  So a few hours later, we went to the hospital.  When we got to the hospital things started to change.  I started to shiver uncontrollably even though I felt warm outside.  Nausea started and things just seemed out of control.  I think it was a side effect of the medication, but I had also begun to spike a fever and get an infection.  If I had stayed at the birth center, I would have been transfered at that point.
The contractions coming were manageable for a long time and I told them to wait until I asked for the epidural.  Everyone at the hospital was wonderful and my midwives Laurel, Alice, and Alissa were all there as well as was my wonderful friend and doula Genevieve.  They gave me a second medication that meant I had to stay in bed lying down and then the contractions went from manageble to feeling constant with really tough spikes which felt like those were coming fast too.  At one point I asked for the epidural, but of course the anestheoligist was at home and could not make it there for about 45 minutes.  By the time I got the epidural and a catheter was placed, they checked me and I was fully dialted.  When they placed the second medication, I was still at one centimeter, which meant I went from 1 to 10 in a little over 2 hours. Maybe that is why I was shaking.  I pushed him out in 20 minutes.  He was born at 10:48 pm. I think Josh may remember some things differently than my timing on all of this, but regardless, it felt very fast.  I was in shock when they told me I could push.

Things I remember are that he was very tiny, his placenta was tiny, and that he looked like he had been gone for a while.  It was an overwhelming stream of emotions from that moment on.  After holding him for a while, Josh and our team of angels (the only word close enough to explain my midwives and doula) washed and dressed him.  He stayed with Josh and I overnight and his brothers and many family and friends met him in the morning.

I don't want to share everything about our time with him or our goodbyes, but I will say that Noah has changed me for the rest of my life.

He has changed everything.

Living without him is much harder than I could have ever imagined.  I miss him so much and am so thankful he chose me to be his mama.  He will always be my little bird.

Monday, March 6, 2017

Baby Blessing

About a month ago the mamas in my school, all women I would be honored to call my friends, hosted a baby blessing for me and Noah.  Three of my friends from LA also came to celebrate with me and to give me a beautiful gift of pregnancy photos.
There really are no words to describe what that day was like.  Usually having all that attention on me would make me quite uncomfortable, but we entered into a circle of words, candle lighting, and offerings for Noah that continue to leave me without words to this day.  I can say two things about this day though:
1.  It really felt as though all 25 of us had entered into the same space for almost three hours.  There were no distractions from what was happening and I felt at peace and truly held with love for so long. I really did not want it to end.
2.  It was quite an honor to hear how Noah was affecting all of them, what he brought to them, and how he had changed them.  What a special person who can do that before he is even born,

I am almost 36 weeks, full term on Thursday and I am nervous about what is to come so this will likely be my final writing until after he is born.  Thank you again for sharing with us in his journey.
Here are some pictures from the blessing and the photo shoot.  (Thanks Melissa for capturing such a wonderful day!)



Sunday, January 29, 2017

Noah means rest and comfort

We named him Noah...  
I have seen many meanings for his name including rest, comfort, freedom, and popular one.  He is definitely living up to the last meaning so far.

We have been preparing for his arrival in many ways.  We saw a pediatric cardiologist in LA and while his heart has problems, it is relatively healthy for a Trisomy baby.  Ultimately the baby's heart will not be an immediate problem after birth.

We have met with a neonatologist at Cottage Hospital and had a NICU consult even though I think the idea is to stay away from the hospital in most scenerios.

We now have midwives and an OB in case I need to go to the hospital for any reason,  It feels like I am always seeing someone lately,

We are working on logistics that include hospice, funeral homes, and random questions like who signs the death certificate if the baby dies at home.  I sometimes have no idea where to start, or what to ask.  While it is overwhelming, we have an incredible amount of support and many who are doing the actual work for us.

The hardest part has actually been navigating the conversations with those around us.  I mentioned in the first blog post that I might not want to talk about it.  It is quite hard to have to tell the people when I see them around town mostly because it feels like I am assaulting them with bad news.  This is why I had sent out massive emails and posted it on social media.  It was much easier to tell people that way.  And most people know now.  It is still, however, a strange reality to live with.  I believe that often our friends and family don't know what to say or if they should mention anything at all.  Others mention it all the time and my sister (sweet love that she is), checks on me a few times a day.

The other part of course is that Josh and I handle it quite differently and what we need from others is different.  I know that for someone outside the situation, it has to be quite uncomfortable and many are unsure what to say or do.

For this reason, I wanted to make this update about just that.  I wanted to let you know how I am, what I am wanting/needing, and how to be with me.

What I want  you to know about my health:  This is a normal pregnancy for me in every other way. Normal for me though takes into consideration that I have a muscle disease called Myotonia Congenita.  It is mild form of muscular dystrophy which is relatively easy to live with except when I am pregnant.  Getting my muscles going from a resting position is very difficult and I can get winded and tired easier.  So this is one part that is making my job and taking care of the boys much more difficult.  If I look like I am struggling with getting up and down, it is because of this and not that I am a drama queen (not that I don't have my moments).

What I want you to know about our decision to continue this pregnancy:  A few people have in one way or another implied that we are making the right or brave decision in this situation.  While I understand again that others do not quite know what to say or are maybe just being kind, I really could not disagree with that more. We are making the right decision for us.  I was very close to ending this pregnancy.  I wanted it to be over and to grieve and move on.  I sometimes still feel this way.  If I had made that choice it would have also been right and brave.  We are simply dealing with what life has given us as all of you would do in this situation as well and the decision we have made comes with its own joys and struggles as all decisions do.  I am grateful I could make this decision for my body and my baby.  I believe all women should have the right to do so.  If any decision had been forced on me when it wasn't the right decision for me, that would have been unbearable.  I feel so sad for the women who have been in that situation.  So I want to make it clear that our decision to continue this pregnancy is in no way taking a stance on abortion.

What I want to make clear about how I handle things is this:  I have reached a place where I am comfortable talking about it for the most part.  I actually need from my friends a person who can listen in a matter of fact way and even help me problem solve or debate or sometimes listen to the joy that comes with this hard situation.

For example, just recently, a friend had done some work on funeral homes for me and told us that our local funeral home does not charge for transport, cremation, or any other service involving babies and children who die.  I cried for almost an hour when I found this out, but most of those tears were ones of joy.  I was reminded how loving and kind people are.  Mostly I was reminded that there are complete strangers who will come to your side when things are really rough.  As a human species, we all understand suffering and grief and what a beautiful thing that is.  I was happy that all families who have to bury their children get this kindness and this relief.
I want people to share in those small joys with me, to not necessarily be horrified in that moment that we have to call funeral homes about our child, but to stand with me in the feeling of oneness that I felt towards my fellow human being and to recognize the incredible gesture of kindness.

Maybe for those who have not been handling this up close and personal, this is too much to ask.  I can understand that as well.

I do want you to know that for me, it doesn't have to be an off topic conversation anymore and I am happy to answer questions about Noah.  Mostly, know that if I bring him up it is because I want to talk with YOU about it, that I value your perspective, and that you don't have to walk on eggshells around the words you use or the feelings you have about it.  Many people cry when I talk to them about it, why wouldn't they? The entire situation is tragic.  And Death is part of life.  I am not sure what life would be worth without it.  It is ok to be matter of fact or to help me see the goodness in all of this.  Mostly, I want Noah to be recognized for whatever life he has in me or outside me and what these situations bring to us all no matter how hard it is to handle at times.

We do not need anything very specific likes dinners or cleaning help right now.  We do need help with childcare from time to time and I forsee needing much more of this specific help once the baby comes especially if he sticks around for any length of time.  If I am caring for a terminally ill baby, I will let you clean my house I promise 😀.  For right now, just keep doing what you have been doing and telling us how much you care.  Thank you for providing the comfort part of his name.
We love you too!
30 weeks and counting...

Monday, December 26, 2016

That would never happen to me...

In July 2016, we found out that we were having a third child.  I have to admit that even though this pregnancy was not exactly an accident, I was a bit terrified to be a mama to three children.  I didn't think I could handle it and still be the mama I wanted to be.  I spent months fretting over this.  In addition, the pregnancy was much harder than my other two with much more nausea and exhaustion than I had expected.

Around Thanksgiving, I started to make peace with whatever was to be and began to start seeing my life as it would soon be and imagining all the wonderful things that come with a new baby in our home.  I was starting to get excited.  We had told our boys early on which then meant the whole world would soon know as well.  They were thrilled and have spent months talking to and arguing over who will hold the baby most.

On December 6th, we went for our 20 week ultrasound and decided not to find out the sex of the baby once again, but simply to see that it was healthy and thriving.  We really hadn't considered that it would be any different.  We had denied the early genetic testing even though I was 39 because we figured that whatever they could possibly tell us would not make a difference to whether we kept the child or not.

As soon as the doctor put the monitor on my belly, he began to see things that looked not right... Cysts on the brain, a cleft lip, abnormal hands, a hole in the heart, too much amniotic fluid, and more. Josh and I sat there in shock.  I think Josh started crying, but I sat there with my hand over my mouth thinking, "but the baby is ok, this cannot happen to me".  It lasted all of about 3 minutes and then, the doctor said, "this pregnancy is not compatible with life, I am sorry.  I need to send you immediately for a genetic bloodtest, but I believe your baby has something called Trisomy 18, a chromosomal abnormality".  Then he left the room.

We went for the bloodtest and then to see our midwife who we called right after the ultrasound.  Our midwife sat with us and explained that over the next few weeks we would need to decide between ending the pregnancy or seeing what nature had in store for this baby.  We found out that many of these babies die in utero and many during birth, but that if the baby is born alive, it only has a 5% chance of making it to its first birthday.  We later found out that the doctor thinks it will make it to term because I am 25 weeks along and he thinks we will have only a few hours with this baby.
The blood test results came back after four excruciating days and confirmed Trisomy 18, also known as Edwards syndrome and told us we were having a boy.

I found out that the three day procedure for ending the pregnancy was at a "termination center" in LA that began with ending the heartbeat and concluded with a D and C.  It was extremely expensive, not covered by insurance, possibly a place that could be protested, and simply felt like something I could not do.  I felt relieved in a way to get this information because it meant that I no longer had to make a decision, the decision was now clear.  I also felt scared about what the future would hold.
If this baby dies in utero, I will need to go to the hospital and give birth.  If the baby goes full term, we have very little idea of what to expect of its condition as each of these babies present differently. We do know it will likely have trouble moving and breathing as the biochemistry is mixed up and the brain cannot tell the body what to do to survive.  We are not certain if it will be able to eat given its possible difficulty swallowing and the cleft lip. Most of these babies seem to have breathing apnea.

We told our boys and that was very difficult.  I felt like part of their innocence died that day and I know I broke their hearts.

And so for now we wait.  I have 3.5 months until my due date.  I don't know what to expect or how to handle many of the decisions we will likely have to make.  I don't know how to help my boys through this or how much to include them in the birth and death of our child.  I am just taking each situation as it comes.  I am posting about it as much as possible because having individual conversations about it is too much when it has to happen over and over again.  So if I dont want to talk about it, please understand.

I do know that I have reached a place of peace with what is and am trying to take one day/one decision at a time (not something my personality lends itself to very easily).  The peace has come with three thoughts I repeat to myself often:
1. We likely have time before we have to handle anything so being miserable for those months seems silly.  Go back to your beautiful life and live it.  What happens in the future we will handle when it comes.
2. We have two beautiful, healthy children who need us and we are so beyond fortunate to be their parents.
3. Whatever does happen in the future and however horrible it may seem now and then will only make us stronger, wiser souls.  And quite possibly there will be joy along with it.  For you can't have one without the other or so I am learning.

Our current challenge which might seem not so dificult in the face of this challenging time, is to name this baby.  Let me assure you that for Josh and I to name a third boy may actually prove impossible.  The first two times was pretty much like pulling my hairs out one by one.
I would really like to name him now for he is my child and has already taught me so much about myself.  We have no idea how long he will be with us so giving him a name as soon as possible is my goal.

We will make updates on the baby's situation here on my blog if you are interested in following his story.

Thank you to all our friends and family who have supported us so far, some calling more than once a day to check on us.  You remind us how lucky we are, how much we are loved and as a very important person my life often says, you remind us "how wonderfully messy life can be".
This is our little angel baby...

Monday, June 6, 2016

Magical Childhood

Today was a special day.  My son had his first grade celebration.  The first celebration of him leaving Kindergarten and entering the first grade.  I say the first because everything Waldorf touches seems to turn to beauty and magic and there are many symbolic ceremonies.  It is one of the main reasons my son attends a Waldorf school and why I am a Waldorf trained teacher.
In Waldorf, leaving Kindergarten and entering first grade is a major milestone because it is the start of academics, sitting in a desk, and longer school days.  You are not advanced to first grade until you are close to seven years old and have completed many other developmental tasks.  Elijah is so very ready!

I am going to walk you through this short 45 minute celebration primarily so I never forget it!

It began with the children who are leaving the Kindergarten being called into their classroom to sit in a circle and hear a story from their Kindergarten teacher.  If you know anything about stories in Waldorf, the start of a story itself can make you cry.  The story was about the oldest children in the class going off into the forest on an adventure where they found many treasures including letters, numbers, colors.  The children put these things in their basket and headed off until they came to a beautiful rainbow bridge.  On the other side of the bridge was someone they recognized.  It was their first grade teacher Brooke waiting to escort them into a new land.

After that, the children, were each read their own special poem and got up to the words, "off you go", where their Kindergarten teacher sent them to follow their first grade teacher off.  She shook each of their hands and then led them to their new classroom.  When they arrived, each of their desks had pictures of themselves on them, a book from their teacher, and their poem.
Upon entering the world of desks and blackboards in first grade
Elijah with his gifts
His beautiful Kindergarten classroom that we will miss so much!

Seeing the excitement on the faces of these children, I cried and cried tears of joy in watching my beautiful son, his classmates and his teacher grow and embark on a new journey through the next eight years together.