No words..pictures instead

Sometimes as I sit here thinking about Emery, wondering if it is real life the words just seem to fail me.  What words are there when your missing your child.  I wonder how much he should weigh right now, and what he would be doing.  I imagine what it would be like if he was with us. Wishing we had that opportunity.  But since I cant think of the right words to say I thought I would post some pictures instead.

tiny toes :)

Dad washing Emery's hands :)

Admiring Emery

 Dads favorite spot to hold onto his son.

Here are pictures from saying goodbye at the funeral home...I hadn't shared them before.

 Toes peeking out of his gown

 Last time holding dad and moms hand.

 Tying on his hat

Dad tying on his tie.  He took the tie from our wedding and cut it in half so he could give his son half of his tie <3

 All dressed at the funeral home.

 last time holding him

 Dads last time holding him

I cant believe it has been so long since I last held him.  He changed my world though and I hope to pass that love along to the others I meet in my life.

Here is Emery's stuff.  It breaks my heart that his stuff is confined to a corner and a safe.  BUT I do love seeing these when I wake up every day :)

The little things

It is funny to me the things you find to appreciate when your baby is gone.  I was online tonight and came across something that says it fades stretch marks.  After my daughter I would have been thrilled to try it.  I had, and still have a ton from my pregnancy with her, but I am thinking I will just accept them.  My pregnancy with Emery was different, I got only a few and they add up  shorter then an inch, and I want them there!  Never would have thought I would appreciate something most people wish would disappear.  But the few tiny lines I have from my pregnancy with Emery are some of the only things I have, and I do not want it to go away.

As a parent who was expecting a child, knowing they were going to die, the things I hoped for changed.  With my daughter I hoped for sleep at night, her health, and to see her happy.  But since those things were taken out of the equation with my son I hoped for much different things.  Besides a birth certificate, I hoped to hear my son cry, to change a dirty diaper, to see a breath or heart a heart beat.  Most parents don't enjoy changing diapers, waking up at all hours, or listening to a screaming baby.  I know they sure weren't my favorite things when my daughter was a baby, but now they are things I long for.  Emery SHOULD be crying, waking up at night, dirtying clothes and diapers.  Who would have thought I would wish for that.

It is easy to take things for granted when you don't realize how many things in life can go wrong, and how things must perfectly align on a daily basis to go "your way".   I took so much for granted when my daughter was born.  I felt like I spent the whole time looking forward instead of enjoying her time as an infant.  I spent my days wondering when she would sit up, crawl and walk.  When would her teeth grow in, and what would her first word be?  My daughter grew up so quickly (and still is) anyway I feel as though I missed out on the moments with her.  I will be the first one to admit that I never truly understood or was able to appreciate what a miracle, what a blessing it is to have a smart, beautiful, sweet, healthy daughter!!  I would love to go back and relive those days with her as a baby, but instead I will focus on today (since that's the only option I have:) ha  )

Emery taught me to appreciate the little things in my life.  The moments that fly by and seem unimportant really can be ones to hold tight to and remember.  I may not have him in my life every day to enjoy his time with, but I do have my daughter, my husband and the rest of my family to hold onto and love!  You never know the path your life may take you on, you just have to hang on and appreciate the ride.

As I have said a million times, I am so very thankful for my son.  How lucky am I to have been blessed with an angel to have held and kissed!! I really appreciate both my kiddos.

 Picture by our cousin Carla

Picture taken by my wonderful husband.  Taken when we had some time alone with him, before we had to say goodbye.

Once upon a time....

Once upon a time....that is how many stories as long or complicated with ups and downs start.  But those stories always end happily ever after, and I am not ready to end my story that way.  Once upon a time, and happily ever after may not be appropriate phrases for the Emery's journey.  My story is just a little more complicated that a fairy tale.  

Today is 6 weeks since Emery was born.  It feels like yesterday and a lifetime all at once.  I have turned to God, believing in angels and heaven as a way to reunite with my son.  I have been thinking more and more about how people hold so much significance in a physical body, me included.  When someone we love dies, who is to say that just because their body is no longer with you that their spirit is not? You may not be able to see touch or hold your loved one, but I can't help but think they are near by when you need them.

This has been a difficult 6 weeks for me.  Besides having lost someone who I love SO much, life continues to get in my way!  I am making every effort to stay positive, but it is sure pushing every boundary I have.  When the bumps keep coming, it just makes me miss my son more.  I long to be able to hold him and kiss him after  a bad day.  My daughter doesn't want me to do that anymore, she thinks she is grown up!  I miss having a little one I can take care of and snuggle and squeeze when life is hard.  Emery sends me dragonflies every day which help boost my spirit, but I do wish I had him to hug!!  I know he is looking out, making sure I have the extra strength I need.

I found this online and think it is so perfect.  I have 2 beautiful children, though only one is in my home.  Sometimes I want to shout it out to the world!!  I miss my Emery today, glad I have my daughter around to keep me smiling through the day though!

Emery's memorial balloon release

Today was Emery's memorial.  It is so weird to think that he should be 5 and a half weeks old!  As I have gone back and forth feeling like I missed out and life isn't fair some days. Other days are spent feeling so lucky and so thankful for having a son who touched so many lives and inspired so many people.  He has inspired me to do so much with my own loss, and opened my eyes to the large group of people who have lost their babies too.  Losing a child is like nothing you could imagine, it is a crazy roller coaster of ups and downs weather you had the time to prepare for it or not.  I am thankful to have known of his diagnoses so I had months to plan for everything to turn out just how I wanted them to.

Life isnt fair and no one should have to lose a child, for any reason but sometimes it happens.  I lost my son to a fatal birth defect, I couldn't have done anything differently it is just the way things end for some reason.  I remember getting the news that something might be wrong with my baby.  It was a down syndrome test and I remembered wondering if I could handle it.  Then I started thinking about spina bifeda and thinking how strong all those parents have to be to take care of sick kids.  I only had experience taking care of a healthy one, one who had hardly ever even had a fever or thrown up.  Once we had the ultrasound and I knew that my son was never going to be able to live a normal life, or even one more then just a brief period, my world turned upside down.  I suddenly thought I would want to be a parent of a kid that was alive, whether he was sick or not.  He was my first son and I just couldnt let him go.  I was told I had 2 weeks to decide if I wanted to abort or not, but how could I?  I just had started to get to know him, I certainly wasnt ready to say goodbye.

Every day I became closer to my little boy.  I began to know that no matter what the doctors said he had a personality.  Every morning I would wake up before the rest of my family and go and listen to music, just me and Emery.  I loved those times we spent together.  At night I would wrap my arms around my growing belly as I fell asleep and hold him the best as I could in my arms.  My son got the hiccups and would throw himself around when they went on to long.  He would lay really still when his daddy talked to him, but bounced all over if he stopped.  I know he was getting to know us too.

They told me anencephaly would make him blind, deaf and unable to feel pain (or anything else).  But to me he seemed just like a normal baby growing in there, it was hard to believe anything was wrong.  I prepared for any of the outcomes.  Whether he was born sleeping, or he lived for a while I was prepared to handle anything that came our way.  I just wanted to see his face and hold him in my arms.
The 11 minutes alive were something I always will love.  He got a birth certificate, and with him being alive we were able to donate his heart valves which will be used to save 2 other babies lives.

I will always appreciate my son. I am glad we gave him a birthday, and werent the ones to pick when his life was over.  This blog was for me to write and remember all the moments we had with him, and maybe to let some other parent know they arent alone.  Many people are too afraid to talk about losing a baby or a child but I want people to know its ok to be sad,mad, angry, happy or anything else.  I have been honest every step of the way, no matter what I felt.  Losing a baby is like nothing else and words and feeling cannot describe it.

If you are visiting the blog because you found cards from his balloon release I would love to know where you found it if you want to comment!!

We love you and miss you Emery yesterday today and always.  2-6-13 <3 

picture taken by Ginger with NILMDTS.

Balloon release memorial plans

Here is the plan for the balloon release for Emery. It will be this Saturday, MARCH 16th. It will be at the city park in Pueblo. If you are close enough to drive here please do! Otherwise gather balloons where you are and release them at 11:55 from where you are at, and take lots of pictures to send to me!! I will have cards to attach to them if you are interested, and they can be printed off (if you want them sent to you please let me know). They have a link to my blog with a few sentences about Emery's journey.

If you come, please bring latex balloons filled with helium (they are biodegradable), a lunch for yourself, and if you wish, something to donate to the hospital. I will be collecting donations that day for parents who lose babies while in the hospital. It is not necessary to bring any but they will be greatly appreciated!! Ideas are new blankets, newborn/preemie outfits, and (the best one) hand/feet molds. We have a 3d mold of Emery's hand. You can buy the kits at hobby lobby.

Also if you are to far too bring something, but still want to donate I have set up a PO box to receive things from a distance. You can send things to Ashley Cortez PO Box 3193, Pueblo, CO 81005.

We appreciate all the love, support and prayers and hope to see you there, or pictures you have taken of your own balloons. Pictures can be emailed to aecortez09@live.com .

Life before YOU

Even though it was just a short time ago, it is hard to imagine my life without you.  A year ago I was getting bi-weekly blood tests to make sure HCG levels were staying down.  Every time I went in, anxiously waiting to hear what the results would be.  I was so stressed I dropped some of my classes for the semester and just focused on 6 credits and working part time.  I felt as if I was dragging myself through days, barely motivated, just feeling mostly stuck.  I don't really like the city I am living in, and I was unsure I really wanted to stick to my major.  Now looking back God  must have known I was just making it through the day by day, waiting for something more.
In just a few short months I had YOU to look for.  I thought about both my kids growing up together, and how wonderful my daughter would do taking care of (and picking on) a younger sibling.  After I saw your heartbeat the day I knew about you, I knew YOU had a strong one.  From the start I had a feeling you were a boy.  When I was told that you were I was so happy though not really surprised.  I bought a few things during the next week, excited for my first son. But only a few days after I knew my son was on his way, I also found out how short his life would be.  The night I found out I sat there asking myself how could it be?  That strong little heart beat didn't seem to know anything was wrong.  You just bounced around my belly, enjoying our time together.  I readjusted to what it meant to be giving birth to a baby who wont survive.  I knew I had to see your face, and tell you happy birthday, but how do you plan for your baby to die?
But plan I did.  Much of my daily life revolved around planning for you.  Everyone plans for their baby to arrive, and I did just that, though preparations were different.  I didn't plan a nursery, knowing if you didn't come home how it would kill me to look at.  Plus I had your sister to think about, I had to prepare her for the worst, and hope for the best, knowing it would be much easier to tell her you were doing well.
Before I had YOU I never thought about what it was to love your child.  I knew I loved my daughter and would give up my life for her, but this brought me a new understanding of a mothers love.  I had to accept that it would be best to make his life comfortable, and that sometimes things our just out of our hands.  I had to learn as a mother you can't fix everything for your kids, sometimes things are just bigger then a scrape.  I learned to love you in a different way.  I cherished my pregnancy, every moment of it.  As long as I felt you I felt happy knowing you were safe.
Before YOU I was completely unaware the strength I held inside.  I didn't know how much strength I had in my relationships with the people in my life too.  I was always wanted to do or handle things on my own.  But as you plan for the death of a child you must learn to lean on others.  You brought strength in the relationship between your dad and I.  Sometimes trauma rips families apart, but we cared for and relied on each other more then ever.
Before YOU were here I thought I was a pretty good mom.  My daughter has all she needs or wants, I play with her and spend lots of time teaching her.  You taught me you can always be better.  You can love stronger, play harder and cherish every moment, that you never realized how special it was.  Realize how lucky you are to have a beautiful, smart, caring, healthy child at your home.
Before I knew of YOU, I would have never thought I could share my feelings.  Put them out there for so many people to read.  And if I ever did who would care.  I didnt know how many people in this world who have lost a child, and even those who haven't could be touched by another families journey to get their son to Heaven.  I carried you with you for such a short time, but look how many lives you touched baby!  Thank you for letting me share you and the inspiration you brought to this world.  God sent you to me to care for so briefly, knowing how great your little life would be.
You taught me to value each day.  You taught me how to let others help me.  You taught me it is ok to be vulnerable and sad, because I am not the only person in the world feeling this way!  You taught me motivation in my life.  You showed me how important family is.  You brought me back to God, because how could I not  believe someone had greater plans for you.  Your life was not how I planned it would be, but YOU had some other plans. You brought us to the organ donation place, so you could save 2 other babies.  What a special  gift you are to this world.  Whenever I feel sad or lonely, wishing you were here I just need to remember the impact you have had.  I love you Emery, and I am so proud of YOU.  Thats what every mother wants right?  To be proud of their son?  Well little boy I am proud!!
What a year it has been and I cant even remember how I got through life before YOU.

Memories

Most every day I spend feeling motivated and inspired to live the best life I can.  Emery taught me so much about strength and love that I never knew had existed in me.  But the past few nights I have spent quietly pouring over pictures of him.  Remembering the brief moment in time we held him in our arms.  It has been a quiet time that I enjoy feeling like it is just him and I having some mom and son time.  What I have noticed though as I put together his baby book, sometimes I wish I had a picture of something that I dont.  I always have the thought, oh I just have to get that one of him....if only it was that easy.   I have so many pictures of my son but as I see cute stickers or things to decorate his pages with I wish I could have that perfect picture.  It is so weird knowing I cant go back to fill in the pages.  I have so many sweet memories, and so many amazing pictures, dont get me wrong, it is just a weird thing to think of, that I cant go back and get a picture. But what I wanted to talk about where the scrapbooks for him. I have 2 different books.  One is from his shower where we put together poems, quotes or things people had written for him.  The other is his baby book.  You know they dont make a really awesome baby book for one who has such a brief life.  I didnt want to buy a regular baby book and leave it mostly blank, so I am making my own.  I am trying to get a lot done so I can bring them to his memorial in a few days, but for those who cant be there I thought I would post some of the pictures of the pages that are finished.

 Cover of the book of letters/poems for Emery.

 Cover of his baby book

 Angel shower instructions for what to do, and his heart rate on the monitor.

 Hand prints/footprints and cards from the hospital

 Picture of him brand new and his baptism

 Page of pictures, we sang him happy birthday

 Emery in his handmade sweater, hat and blankets  and pictures of how much hair he had

 Clip of his hair (it was much longer but the nurse was nervous to cut it :) )

 Dragonfly poem, page done for Emery by a cousin

 Poem about butterflies page and other page decorated by cousins

 Page by Gigi and page by Sa (and Gigi)

 pages by his great grandparents

 Letter I wrote to Emery

 Page done by a friend, and poem sent to me by another friend

Pages made by myself and my amazing daughter!!

I love the way that his books are coming together, I am so excited to share them on Saturday.  I love that I will have all these amazing things to keep from my son's life and from the people that were touched by him.

I have this poem on my wall by Emery's things.  

Just a Memory Away

I'm no longer by your side

but there's no need to weep;

I've left sweet recollections

I'm hoping that you will keep

Eternal joy and memories

Stay in our hearts forever

Strengthening our special bond

That parting cannot sever

Now it's time to journey on

So let your faith be strong

For I am in a better place

I'm home where I belong

And if times of loneliness

Bring sorrow and dismay

Don't despair, for I am there

Just a memory away

-Rita S. Beer

Our birth plan

SO after I have met many other parents who are going to lose their own babies so I thought I would post my birth plan on here.  I got a lot of my ideas from a String of Pearls, though I changed some things and added some things to our plan.  The plan was a great place to start, though some things did change a little, the nurses did whatever we needed to be comfortable.   I know our ideas are not a wish for everyone, but maybe they will help someone to think of things they hadn't thought of (like I did while reading others plans).  

Birth Plan for Emery, son of Ashley and Randall

As Emery’s parents, it is our greatest wish to be able to cherish every moment we have with our baby, in a loving and caring environment. Emery has been diagnosed with anencephaly and we know what the diagnoses means but wish to have as much time with our son as possible.  We have compiled this list of requests and wishes regarding his care in order to make this experience as easy as possible for all involved. Please do not hesitate to ask us for clarification if it is needed. Please don’t mind if we change our wishes at any time, and if they do we wish that the new plan is the one we follow. Our wishes all revolve around our need to spend as much precious time with Emery as possible and to prevent her from suffering during that time. Our wishes are as follows:

We DO NOT wish to have extraneous staff entering our room without speaking to our nurse first (i.e. housekeeping, dietary).
We DO NOT wish to have continuous fetal monitoring during labor and delivery. Periodic monitoring of heart tones is preferred. We DO NOT wish to have an emergency cesarean section in the event that Emery’s heart tones are undetectable or decreased. However, we do realize that if one is necessary to protect Ashley, we will take the advisement of our doctor.  Also if an emergency cesarean is required for mothers’ health we wish to have Emery go with his father, Randall immediately.
We DO NOT wish to have Ashley’s water broken.
We DO NOT want any pushing or pulling to help labor along unless medically necessary for the mother.
We DO NOT wish to have any life-saving intervention on Emery’s behalf. The focus should be on care and comfort.
We DO wish to have routine care for any newborn such as having his mouth and nose suctioned with a bulb at the perineum and drying him quickly. And we wish for it to be done in the mothers or fathers arms.
In the event that Emery is born and is struggling to breathe, but otherwise is doing ok, that he may have some oxygen, not to try to save his life but to keep him comfortable.
As long as it is safe for Ashley, we want her to be able to hold Emery immediately following delivery. If Ashley is unable to hold Emery, we would like him to be handed to his father, Randall. We wish to cherish all the time we have with him. Every second counts.
We DO ask that you give us privacy, without abandoning us. Encourage us to do whatever feels right.
We DO NOT want Emery to be taken from the delivery room at any time, by any person, for any reason.
There is no reason he needs to be hungry.   Ashley will try to nurse Emery after he is born if he is alive and able. We DO wish to have a nasogastric tube inserted in order to feed Emery if he is unable to eat on his own. 
We DO wish to have Vaseline gauze if his is born alive with no skin on his head, to help keep his head more comfortable and then a hat on top.
We DO wish to keep Emery warm with the use of kangaroo skin-to-skin care, warm blankets, hats, or the radiant warmer.
We DO wish to have Emery baptized or dedicated at our request.  Our pastor will come to the hospital for him.
We DO want the nursing staff to weigh and measure Emery when we request it. Should we forget to request it, please do it prior to him leaving the hospital.
We DO request that Dad be allowed to give Emery his first bath.
We DO request that Mom or dad be allowed to dress Emery in his own clothes. We DO NOT want these clothes to be removed at any point or by any other person than his parents. Emery is to be wearing these clothes when he goes to the mortuary.
We realize that Emery will look differently physical. We hope that everyone can see him for what he is, our beautiful little baby. He will be greatly missed and never forgotten.
Any keepsakes that mom or dad leave with Emery, are to remain with him at all times, even when he is taken by the mortuary personnel.
We DO NOT want Emery to go to the morgue at any time. We DO request that the hospital contact the funeral Home directly when we are ready to say goodbye to Emery.
We have contacted Now I Lay Me Down to Sleep, a bereavement organization, and arranged for a photographer to come to the hospital and take professional pictures of us and our baby. We ask that you accommodate them in any way that is helpful. Their number is.......
We DO wish to allow our family members to visit as we deem appropriate. Please DO NOT allow anyone in our room without talking to us first. We DO wish to have our daughter be the first visitor allowed in the room accompanied by adults.  We ask your assistance in keeping them updated as we request it.
We DO wish to be with Emery and holding him at the time of his death.
If any caregiver has a suggestion or an idea that you think may be helpful, please share it with us, as there are many things we haven’t thought of.
If any nurse, doctor, or other caregiver on our team is uncomfortable with any of this, please excuse yourself from our care if possible.
We are participating in a study about anencephaly babies through Duke University.  We have kits needed for blood samples from mom and dad and a DNA sample of Emery’s to be taken from his umbilical cord. 
Also for the study we wish to take a few pictures of Emery before his hat is put on and before visitors are allowed in the room.
We DO NOT wish for a time limit to be put on our time with our son.  We will tell you when we want the funeral home called.
We would like for our labor/post-partum rooms to be as far away from others as possible.
We DO wish to be released from the hospital if medically possible after we give up our son to the care of the funeral home.

We DO wish to have as many keepsakes and memento’s as possible. Please save the following items for us to take home:
the bassinet card
hats
baby blanket
any photographs taken by the hospital
hospital ID bracelet
hand and footprints (we also wish to have footprints put in books we have brought with us)
mold of hands and feet (we have kits with us)
lock of hair if possible
clothing Emery may have worn
and any other things you think we may wish to have
Thank you for being a partner in our baby’s birth. Please be patient with us. We don’t know how to do this sad thing and are learning as we go.

Signed,

Ashley and Randall 

Seeing my dragonflies

This past Thursday was a beautiful day so we decided to take my daughter to the park.  We left our house and started walking.  Something flew right down in front of my eyes.  I looked up and showed my daughter and husband that it was something that looked like a very tiny dragonfly, about the size of a fingernail.  It followed us the whole was as we walked to the park.  When we got home I came home and looked up baby dragonfly, and what we had seen was one!  They are called a nymph, and they look just like dragonflies just super tiny babies.  It is so funny to me because I live in the desert!  I never see dragonflies here, at least before I was pregnant with Emery!  I have seen a new one every day since he has been born.  Sometimes its a picture, or something else I see at a store.  I never seek them out, but when it fits into my life I have bought some for my house/yard.  I have some pictures of some of them.  Not all of them, some I couldn't get good pictures of.  But the dragonflies bring me such joy :) I know it is Emery looking out for me.

 decorative bird house in our room, my daughter picked it out.

 for the garden

 Large butterfly and dragonfly to put on my fence.

 On a tapestry my husband has had for a while, that I NEVER noticed the dragonfly on.

 Dragonfly pot, where I planted the seeds that came with his urn.

Soap holder for the bathroom.

I may be turning into a crazy lady obsessed with dradonflies, by putting them all over my house, but I feel like I am able to include Emery that way.  It is my way of including him in my every day life, and seeing them all bring me a smile every time!  

Memorial-please read if participating

We are planning a balloon release and picnic in memory of our son. It will be March 16th, (changed from the 9th due to weather) unless the weather is bad then it will be the following Saturday. It will be at the city park in Pueblo. If you are close enough to drive here please do! Otherwise gather balloons where you are at and release them at 11:55 from where you are at, and take lots of pictures to send to me!! I will have cards to attach to them if you are interested, and they can be printed off online as well (if you want them sent to you please let me know). They have a link to my blog with a few sentences about Emery's journey.

If you come please bring balloons filled with helium, a lunch for yourself, and if you wish, something to donate to the hospital. I will be collecting donations that day for parents who lose babies while in the hospital. It is not necessary to bring any but they will be greatly appreciated. Ideas are new blankets, newborn/preemie outfits, and (the best one) hand/feet molds.
Also if you are to far too bring something, but still want to donate I have set up a PO box to receive things from a distance. You can send things to Ashley Cortez PO Box 3193, Pueblo, CO 81005.

We appreciate all the love, support and prayers and hope to see you there, or pictures you have taken of your own balloons. Pictures can be emailed to aecortez09@live.com .


Also I have been asked where to send various things to our family. I appreciate it greatly, it is so sweet to know so many people are wanting to make us smile :)  Though comments on here are more then enough to get me to smile.  I got the PO box to send things to so use the above address for cards, dragonflies ect.   Thank you all again :)

1st month in heaven

It has been 1 month.  This day a month ago was the first time I saw your face.  I was so in love.  They put you on my chest, and I waited anxiously to find out if your heart was beating.  It was my son.  I was so proud of your strength!  You stayed where you were for 61 hours holding on to me, and I am glad I had that time with you too.  We could have had to say goodbye 2 days sooner, but you held out.  I was amazed by your size, such a big boy!  You had some amazing chunky cheeks, and you were so so tall!  I still have a hard times sometimes believing this is real, I should be sitting her snuggling you, instead of crying as I write about your birthday.  I don't know why things happened this way, but I am so glad to be your mom.

Today will be a hard one, boy.  I know you were meant for much greater things, but I selfishly wish you were here in my arms.  It isnt fair that I had to share you, or that at 1 month old you are looking down from heaven.  I hope your having fun up there, and you always know how much I love you down here.

This was right when he was born.  I was anxiously awaiting what the nurse had to say on whether his heart was beating.  Since we chose not to have it monitored during delivery I didn't know.

I miss you my son, today tomorrow and every day after.  You changed my life more then I ever could have imagined.  

Most days I am pretty ok.  But days like today,  things that should be important are really hard on me.  I wish I was watching him grow.  I wish I was holding him in my arms.  I wish I was changing his diapers, who wants that right?  But until you have been in this situation, you dont know how "nice" a dirty diaper is.  Today will be a rough day for me, but I will make it through, just like any other day.  Ill light a candle, and say a prayer, work on his scrapbook and spend the day with him on my mind.

I really love this picture, so I cropped it so I could post it on here.  I so wish I could kiss those lips again!!

Not so scared

Being a mother who was carrying a baby to term who is terminally diagnosed is such a weird spot to be in.  You grieve the death of your child before you ever even lose them.  One of my fears I had was what it would be like to hold or see my son after he had "gained his wings".  I was worried about how hard it would be, or if it would be uncomfortable or weird. I think though that having plenty of time to prepare made it not weird at all.  Having him with us even after he had passed away was just such a peaceful experience.

I feared having him be still born.  You can see it in my face in a picture I have, he was just born, and on my chest.  The nurse had a stethoscope and was listening to his heart beat, and I was looking up at her, holding my breath with a look of hope on my face.  It was another milestone.  My whole pregnancy  I counted the milestones, hiccups, growth, checking his heartbeat each appointment.  It just meant my baby was beating the odds and showing us the incredible strength that he had.  I was so very happy to have his heart still beating.  I remember looking at my husband and smiling, us both thankful that we would have a birth certificate for our son.  I so prayed to have one, I wanted him to be acknowledged!  How sad that if he had been still born all he would have had is a death certificate.  I fought so hard to give him a birthday I wanted it to have the paperwork backing it up! No matter whether he was alive or not, he definately deserves acknowledgement that he was here, and he was MY son.

After Emery had passed it really made no difference to me.  I still was holding my amazing son, who put up one hell of a fight to be here with us.  Even at the funeral home after we got him dressed, my husband and I each held him.  We told him how much we loved him and gave him a final kiss goodbye.  It was never weird, it just felt right, and I am so thankful for all of the time we had with him.

Ever since my son was born I have felt at such peace.  It certainly doesn't mean I have been happy, just means that I have found peace with a bad situation.  I had so much time to prepare ahead of time, I knew exactly how I wanted things and I made sure I did everything I could to make sure that happened.  I had as much control as I possibly could and I know that helped.

"The Hat"

Talking to other mom's who have had children with anencephaly has gotten me thinking about something..."the hat".  It is something you plan for while pregnant and prepare SO much for ahead of time.  You worry about keeping your baby's head covered up, for many reasons.  For fear of what you might see, for pictures, for warmth.  No one honestly wants to talk about what their worries are.  But it is scary!  Going into whatever it might mean seeing your child with part of their head open.  I admit it, I was scared.  I thought it would break my heart.  I know I wasn't the only one in my family who had fears, and I know that other families go through the same thing.

The hat is something you plan for.  I made sure I had a hat (which my mom made).  Other parents make sure their kids have hats as well, and all the pictures you see of these little babies they are wearing hats.  You can find medical pictures of what anencephaly looks like, but when it is a loved baby it is different.  I am thankful to be part of a group where parents can post pictures of their babies without their hats on.  And you know what? They are beautiful children!!  When looking at these pictures you see precious faces, and chubby cheeks!  You see love, and babies who are incredibly loved.

Trust me, I am a realistic person, thats why I have never posted any pictures without "the hat" on Emery's head.  But the whole time my husband and I were alone with him I dont think his hat was on his head.  I have  the creative shots where I can post them, and have.  But I do have lots of pictures of him as well without it.  I was not ever fazed, sad, upset, scared or anything else when seeing my son.  He was my son, and that was all I saw.  Even the nurses who checked on us just saw the love.  When it was time for us to say goodbye, and she took him away we were told by other nurses that she went to the nurses station and rocked him.  How lucky was I to have nurses that cared about my son that much!  She didn't want to have to give him over either.

It is sad to me that us as parents have to worry about "the hat".  It seems like you plan for the baby to have a life revolved around a hat.  I just want other parents to know that no matter what you will love your baby.  Your baby will be beautiful and you should not have to be ashamed or scared of what they look like.  There are other parents who understand.  I am so thankful for the support from other parents who understand, and who think my son is just as handsome as I do.  Even without his hat :)