Mommy's heart for Baby Jacob

Monday, October 24, 2011

On Jacob's One-Year Angelversary...Mommy Loves and Remembers

In loving memory of my Baby Jacob, here is one of the last photos of him alive. Taken at our in-depth ultrasound at 12.5 weeks on October 21, 2010, you can see my little baby as we saw him.  His head is on the right and he is looking up.  If you go to the left along the top of the photo, you will see his eyes and nose and mouth.  There you will see what they thought was a possible cleft lip or cleft palate.  You can also see his right hand up by his face (in the dark space) and his left hand close to his body.  You can see a dark spot by his tummy--that was something that wasn't supposed to be there--his small intestines were outside of his body but they were enclosed in a sack. I guess that meant that it wasn't super major and was fixable with surgery if he would have lived to have been born.  You can then see Jacob' little feet up in the air on the far left and then it curves around to show his butt and his back as you head back to the right along the bottom of the photo.  This is the first time I've every posted a photo of him at this stage. I hope you enjoy meeting my son.  Readers, meet Baby Jacob.

I would have never guessed that I would be at a point like this in my life.  Well, who does?  It has been one year since we lost our precious baby Jacob that you see alive in the photo above.  One year. 

I went back and read through some of my posts from one year ago.   Who was that person?  Who was that poor, hurting woman?  Sometimes I can't believe that that woman was me.  That I was the one going through such a dark and hurting pain.  I was the one who lost a child, not someone else--not someone that you read about.  It was me.  I had a miscarriage.  I had a D&C. 

The beginning of this journey was so unbelievably painful--full of uncertainty, confusion, panic, sadness and anger.  When I read my feelings from back then, I remember how bad things were.  And then I say a prayer of gratitude for how much better things are now.  Thank you, Lord, for the healing that you have brought to my life throughout the past year.

This isn't to say that all days are wonderful or that I've "moved on" from the grief over losing my son.  There are some days that are still bad, frustrating or confusing.  Have I moved on?  No, I don't think anyone in a place like this just moves on.  Have I moved forward?  Yes.  Call it a word choice preference if you want but you'll find in the baby loss community that many moms don't use or like "moving forward". I think it implies that they simply leave their baby behind.  We all carry our baby with us and just hope and pray that we move forward with thoughts of love for our baby, rather than constant thoughts of grief and sorrow.

So I have "moved forward" with my baby in my heart and I am a different person than I was one year ago.  Am I a better person?  Who knows, don't we all like to think that?  That something like this happens to us and we are changed for the better?  Sure, I guess. I'd like to think that I've grown from this in a lot of ways, especially regarding my faith and my relationship with God.  However I have changed, I know that I will forever carry October 25, 2010 with me.  I will forever carry Jacob with me.  I am a new person.  I have three sons, not just two.  Two of my boys live here with me.  The third lives in Heaven.  It's as simple and as beautiful as that.

One year ago.  Last year at this time I remember being in such a different place.  Even after we received Jacob's diagnosis I still was so unsure of what the future held for us.  Doctors could be wrong, right?  Maybe Jacob would beat the odds and make it to full term to be born.  Maybe he would live for months.  I had so many scenarios running through my head and it was so difficult to process them all. 

It had been a rough weekend.  Jacob's ultrasound had been on Thursday, October 21 and we had gone out of town for my mom's birthday to celebrate with her that weekend.  Everything changed of course.  What was supposed to be a joyous time full of birthday surprises had become a stressed event with all of us trying to best figure out how to celebrate her and yet to be mindful of the pain that we were experiencing. 

On that Friday, October 22, I remember calling my brother and asking if they would mind coming up after we left.  I had planned everything out for mom's party and had reminded him of the event just earlier that week.  My brother and his wife were expecting too.  They had just announced their pregnancy.  Under the circumstances I just couldn't figure out how we would all be there at the same time.  I love my brother and despite how much I would have loved to have seen him, I wanted him to have their time with my mom and family. I wanted them to be free to share their joy and not to have to worry about saying the wrong thing around us.  I just felt it would be so awkward and especially didn't want my mom to have to worry about that since it was her birthday that was to bring us all together.  Plus, I had no idea even how I would celebrate during such a time of misery and uncertainty but I had to try for my mom and for my boys.  They had really been looking forward to Grandma's party so even though I considered not going home at all that weekend, I knew home was where we needed to be. 

On Sunday, October 24, right before we left, I had Alex take a picture of Mom and I so she could have at least one picture with her grandson.  I have misplaced the picture but hope to find it to post sometime--it's not a great one of me but it shows the genuine emotion of the night.  I didn't have any eye make-up on and my eyes were red from crying.  Truth is, I looked pretty pitiful.  My mom looked great and so happy.  My mom gives me such strength. She is my best friend and I really needed her during this time.  While I was so grateful to have been able to come and see her I was also crying because I wished she could have come with us.  I hated leaving her and facing the uncertainty with Jacob.  I needed her so much.

Originally I had been looking forward to my October 25 doctor appointment.  This was obviously prior to the ultrasound.  I had just found a new dance group, clogging to be exact, and was so excited to start dancing again.  Remember, we had just moved from Texas to Ohio in early August and had left all of our friends and activities (including clogging) behind.  It was so great to find a new group after looking for the past few months.  Unfortunately because I had had some spotting (one spot to be exact) a month prior in September, my doctor advised me to wait for this appointment before she gave me the thumbs up to start jumping around again.

Clogging was the last thing on my mind on Monday, October 25, 2010, as I walked in to the OB's office that afternoon.  The memories I have from that day are permanently etched in my brain.  How they took me straight back to my doctor's office so we wouldn't have to sit in the waiting room with other pregnant patients.  How long we sat in that office waiting to see her.  That wait was pure agony.  I still wish my doctor would have simply rescheduled me for her last appointment of the day rather than having us come in at our normal time, only to get everyone else out of the way before seeing me.  Nice gesture, just didn't work very well.

I've included a bit from my post last year, October 25, 2010.  Feel free to read the rest of the post from that day if you wish:

"So as we waited for an eternity--an hour in the doctor's office--those questions chased each other around my mind.  The boys watched Dora's Pirate Adventure on the DVD player we brought in for them.  Because he had only 6 hours of sleep last night, Alex dozed off and on in the chair.

I can't tell you how long and how agonizing that hour was.  I wanted to tell Dora to zip it.  She sang with such gusto it was making me sick, literally.  I grew tired of looking around the office.  The brown carpeting.  The medical certificates elegantly framed on the wall.  The statues of doctors holding babies.  The family picture showing my doctor, her husband and 3 smiling children.  The collage of baby pictures showing her twins.  The stupid pyramid clock on the desk was annoying.  It was sliced at angles and rotated by seconds, minutes, and hours.  How could anyone tell the time on that clock?

Finally the doctor came down the hall and introduced herself to Alex.  She said she wanted to get all of her other patients out of the way so she could spend as much time with us as we needed.  That was nice, but I wish they could have just told us to come later.  It was so hard sitting there for an hour with nothing but worry and Dora pummeling your head.

One of the first questions she asked us was about our preference.  I told her that I just didn't think I could terminate.  It might make all the sense in the world to do so, but it just didn't feel right to me.  I knew I could never live with my decision if I did do that.  I know many women make this decision and I respect them because it is such a difficult decision to make. But we all make our own decisions that fit who we are.  For me, it just was not something I could do. 

From there we talked in-depth about everything that could happen and when.   What if the baby miscarried in the next few weeks.  What if the baby went past 20 weeks, how he would 'come out.'  What hospital I would go to for what procedure.  I know poor Alex's head was spinning--go to this hospital before 20 weeks but go to that one after because they have a level 3 NICU.  Go to Labor and Delivery at this hospital.  Go to the ER at that one. 

We discussed having a 3rd c-section if my baby made it to near full-term.  How he could still pass away because the birth process is so traumatic.  Would I hold him for a few hours or if the neo-natologist gave him a quick assessment that saving his life was not possible, or if it was, he would be rushed to Dayton Children's Hospital where they have surgeons standing by but I would not be if anything were to go wrong there.

We discussed his chances.  We discussed all of the things wrong with him.  There were four primarily:  1-  thickness behind the neck which could signal different problems, but not necessarily mental difficulties like I first thought.  In fact, at this time, they didn't see any specific brain or heart problems but it could have been to early to detect.  2-  A protrusion in the abdominal wall--this is something like, "Omaphele" or something like that.  It doesn't matter the exact word.  I was happy to know that it was only the baby's small intestines which were outside but still enclosed in a sack, compared to other situations were some babies have all of their organs outside and no sack to protect them.  I know it sounds strange, but sometimes you need even the tiniest of hope to hold on to.  3-  Extra digits--not a problem.  4--A cleft lip and/or palate--again, something they could fix.  I was happy that that was ALL they found.  Again, you take what you can get and not seeing any obvious heart problems right away was something ever so tiny that I could hold on to.

At this point it was around 5:30 or so.  We'd been at the doctor's office for almost 2 hours.  Dora had finally been shut off.  It was now time for my ultrasound to check on my baby.  I told Alex that he could take the boys out since they wouldn't be able to handle much more. 

The doctor came in while the technician was doing my ultrasound.  I'm no expert but I'd like to say I've learned something from all of these ultrasounds.  There wasn't a heartbeat.  I knew it before they even told me.  My baby was lying kind off all stretched out with one hand up by his face and the other down.  His legs were stretched out.  I kept hoping to see the little 'flicker' as I called it, I hoped to see the little heartbeat.  They kept looking at different angles.  The doctor came close to the screen.  I asked, "We can't see the heartbeat, huh?"  My doctor said, "No, Kim.  I'm sorry."

Even though I knew this was possible, an onslaught of tears hit again.  There was my precious little child lying dead in my womb.  Never to be held by me.  Never to be sung to Mommy.  Never to feel Mommy's tears on his face as I told him over and over how much I loved him.  Never to nurse at my breast.  How could this be?  How could he have died so quickly?   And why on earth couldn't we have done the ultrasound first?  Do you know that I actually apologized to the doctor for taking up so much of her time discussing options when it wasn't even necessary?

My baby had been so active last Thursday.  His little ankles were crossed.  He kicked his feet several times.  He squirmed, wiggled and rolled.  It was so beautiful to see.  But today, he was limp. Lifeless.  He looked like a child's doll just...lying there.

One thing touched me.  My baby died sometime today.  I hit 13 weeks today.  My baby measured 13 weeks.  That meant he was with me until sometime today.  It gives me a small degree of comfort in knowing that.  Maybe he died this morning.  Maybe it was during our visit with the doctor.  I'll never know but I am happy to know that he wasn't gone for long before we found out. I don't know why this brings me a small amount of peace but it does.  Knowing when he died.  I guess I feel closer to him somehow.

I asked one more time for pictures of my baby.  They were so kind to give them to me.  Again, they are not the best angle, nor as close up as I could like but they show my tiny little love in there all the same.  I'll treasure those pictures forever.

I was the last to leave the doctor's office.  Again, for the few nurses and staff who were left it was a hush as I exited.  Glances and quiet that quite frankly I'm getting tired of walking through."

I don't know how it was for you just now, but that was so hard for me to re-read.  I can't believe everything that I went through in a matter of days. I can't believe that I somehow endured Dora and all of the gazillion scenarios we discussed only to find out that Jacob had died.  All of the scenarios and planning were totally worthless at that point. 

I know at times I wonder what might have happened if we did the ultrasound first that day?  Would Jacob have been alive?  Would he then have passed away some time later?  Would I have missed a miscarriage and suffered from some infection?  Remember, I was already at 13 weeks and was warned repeatedly that a late miscarriage in the next 2-3 weeks could be bad for me. 

Perhaps all of this timing was truly in God's plan.  Wow.  I never thought of it that way until just now.  What if God planned all of that out to the last agonizing minute of us waiting for the doctor?  The extended wait that drove me nuts.  The lengthy discussion with the doctor that had my head spinning.  The Dora nightmare.  The annoying pyramid clock that I wanted to chunk into the trash.  Everything.  What if God did that so to give my little baby time to pass away into His arms.  And to give us time to know that he had gone so the doctors could take care of his mommy sooner rather than to wait any later.  Wow.  I'm blown away by that thought.  I can't believe it took me a year to even consider this!  This whole time I had been agitated by my wait but my Lord knew what he was doing.  Thank you, Lord, for taking care of me that day.  For not letting an infection build that could take Sammy and Benny's mommy away.  Thank you for making me wait if it meant that You sent Your angels at that time to carry my baby back to You.

I want to share another photo that I have not shared before.  It is my sweet little Jacob on the day that he died.  After the doctor confirmed that Jacob didn't have a heart beat and I heard those dreaded words, "I'm sorry," again for the second time in 5 days, she printed pictures for me while I cried. 

I still love that Jacob made it to exactly 13 weeks.  I had just turned 13 weeks that day and Jacob measured the same.  I don't know why but one year later this still brings me a huge amount of comfort knowing that he died then.  It's like he died with me.  He waited for us to see him on October 21.   He probably just wanted to show off! :)  He waited to celebrate his grandma's birthday that weekend and for her to tell him that she loved him. He fought hard and made it much longer than he should have--apparently most Trisomy 13 babies pass away very early in pregnancy, like around 4-6 weeks.  He waited to die on the very day that I turned 13 weeks and for it to register that way at the doctor's office.  He died with his mommy loving him so much.

Here is my little baby.  Lying on his side, I think his face is angled up with his arm near it.  I remember what the doctor and ultrasound technician told me last year about his position but it's hard to make out on this photo. It's really the only photo out of all of his ultrasound photos that I have a hard time seeing him in. I know he was stretched out.  Maybe he just went to sleep or was taking a nap.  And then he woke up in the most glorious place ever--Heaven!  I'm sorry about the white space below, the photo scanned that way and I can't figure out how to cut that part.

Why did Jacob make it so long? Why did he make it 13 weeks?  I have no idea.  I still wonder about that alot.  If you're wondering what type of anger or frustration I've had in the last year I guess you could throw that in there.  I don't know that I've been angry really.  I don't think that's the right word. I think confused fits better. 

If I could ask God one question, that might be at the top of the list.  If I was too old to conceive again, why didn't He just let things be?  We'd been trying for awhile.  Number three was taking longer.  If it wasn't meant to be, why didn't we just not ever conceive and chalk it up to age in the end?  But we did.  God granted us another baby to love, just not here on earth.  That's what I try to remember when I find myself wondering about that question.  That's what I have to remember.  Life is more than just what's here on earth.  There is so much more awaiting all of us in Heaven.  And my son is experiencing those things as I write this!

Would I have changed things?  If God said, "Okay, Kim.  Let's chat about this.  Would you have rather I not let you get pregnant at all or let Jacob come see me sooner?"  I'd probably sheepishly reply, "Uh, no."  Because you see I am thankful that I did get pregnant.  We did it all on our own--no pills, no shots, no ultrasounds.  We beat the odds in some respects, huh? 

And regarding God taking Jacob earlier?  Oh no.  Then I would have never seen my little one.  I cherish that so much because I know that there are several moms who never see even an ultrasound photo.  My heart breaks for them because I know how much every single photo means to me.  And seeing him that last day alive?  Technology is pretty cool.  Despite my little baby being so tiny, I was able to see so much of him!  And I LOVED every second of it! 

I still wonder about it all though.  God must have had a reason for everything that happened.  For us getting pregnant right after we moved.  For me to have made it through a third of my pregnancy carrying little Jacob.  For Jacob dying so quickly after only 5 days from learning of his condition.  I can guess all I want but what's most important is that I continue to trust God through all of this. 

What happens next?  Well, I am looking forward to our little private family celebration at 6:00 PM Tuesday, October 25, 2011.  We will be remembering our precious Jacob--Alex, me, Sammy and Benny.  I will write about that in the next few days and even will share photos too.

I made it one year.  Wow.  I still can't believe that one year has already gone by since I was last pregnant and anticipating joy at being a mommy again.  Since I just felt that we were having another little boy to add to our mix.  Since I found myself dropped into a dark well with storm clouds raging all around me and what appeared to be no way out of the chaos.

I did find a way out and every step has been a journey to make it out.  I've learned that I was so naieve when I asked my nurse during my D&C how long the emotional pain would last. That's got to be one of the dumbest things I think I've ever asked but hey, maybe I can blame it on the drugs they had me on during my surgery?  :)  I learned that this is a pain that is a part of you but what it does to you depends on how you react to it...how much control you let it have.  Sure, there have been plenty of days full of tears throughout the past year.  But there have also been plenty of days full of joy at simply remembering my son.  Those are the ones that I aim for because those are the ones that I feel bring me closer to him. I feel him more when I am joyous then when I am sad.  Actually, I feel God's love more.  I know that I am letting Him in to work His healing in me.  And I'll take it.  I'll take it because it's what got me out of that dark well that I was in one year ago today.

My dearest Jacob,

How Mommy loves you!  How much I miss you!!  You would be a sweet six months old right now, do you know that?  We would have just gone to Grandma's this past weekend to sing happy birthday to her.  Your party hat would have fallen off, no doubt!  I don't know that I would have let you eat cake since you'd still be a bit young for that, but you probably might have checked it out with your little hands.  Maybe you would have had six fingers, that's okay. I'd lick the icing off of a thousand little baby fingers if they were yours!  And your brothers would have laughed at you for making a mess.  And you would have laughed back. :)  Your laughter would melt my heart, I know.

And this week, Jacob, we'd be getting your little Halloween costume ready.  I always wanted to do the baby pumpkin thing and I'm sorry to say that you'd probably get stuck in such a silly little costume.  But I know you'd humor Mommy, right? :)

Sweetheart, please know while this past year has been difficult and even now continues to be difficult as we approach all of the holidays which would have been your "firsts", I am okay.  It's my love for you, for our family and for God which has gotten me through losing you. 

Do you remember when I 'felt' you several months ago?  It was only once but I know it was you.  I think you dropped in on me to let mommy know you were okay.  Jacob, if you can, would you come see Mommy tomorrow?  I will be missing you so much.  It's the day one year ago when I learned that you left me and it was so hard.  I would love to feel you tomorrow!

Please know Jacob that you are loved!  You were here for 13 wonderful weeks and so many people know your name now!  They know that despite losing you so early, that despite never holding you in our arms, we love you so deeply and always will.  You were here, my little one.  Thank you for leaving your little footprints on my heart...the mark they left is permanent and I am so grateful.

With all of my love Jacob!  Mommy remembers you today...Mommy loves you today, and always.  "Hearts" to my baby...

Love, Mommy

Thursday, October 20, 2011

One Year Ago--'A Mother's Journey' is created--October 21st--One Year Ago--"I'm Sorry" Changed My Life

Hi Friends.  Well, so much for my great intentions with regards to my blog this month! :)  What can I say?  So many things I had planned for this month have changed as a result of unforeseen difficulties.  I'm sure I'm not writing about anything new and we've all been there.  I am sorry to those of you who have been checking my blog for updates, I really hadn't planned to be absent for so long.  I hope you'll stay with me and forgive me for the delays!

The first thing I want to tell you is that I do plan to continue what I wanted to do on my blog this month into November.  I have so many posts that I need to write about, more giveaways to do, etc.  If there's one thing I've learned on this journey throughout the last year it's to allow myself to do what I need to do when I need to do it.  If that means staying up late to write a blog post in order to express something that's on my heart, then I do it.  If that means forgiving myself and allowing myself an "extension" so-to-speak for "Jacob's month" (October), well, then I am doing that now.  There is so much in a journey like this that you simply cannot plan for.  You never know when the grief may hit you harder...you never know when the struggle to conceive again may overwhelm you...you just never know.

Tonight though, I simply could not go to bed without writing.  One year ago today was a pivotal day in my life.  It was the day that this blog was born.  As grateful as I am for the chance to write and to reach others, I'd give it all up if I could simply change one key thing from October 21, 2010.  I would change the diagnosis of my sweet little baby to one of "everything is fine" rather than the two words every parent dreads hearing..."I'm sorry."

Where was I last year at this time?  I remember being so excited to be nearing the end of my first trimester.  I hate to complain but I'm human and I remember being cranky from time to time during those early months of my pregnancy (maybe I was cranky a lot, who knows!).  If you've been keeping up with my blog since last year, you might remember me saying that everything stunk.  Seriously!  It did!  I was so sensitive to smells. I could smell things that the average person couldn't.  And, of course, every smell made me nauseous. 

Last year at this time too I had just recently announced my pregnancy on Facebook and to family and friends.  The congratulations were so joyous and I truly felt like everyone was sharing in our good news.  I had even been lucky enough to have made it back to my school for Homecoming and to participate in a ceremony to dedicate my sorority's new house. I was so goofy back then.  I knew I was showing a bit--guess I'll blame some of that on my previous two c-sections!--and wanted to find a cute top to wear when I saw my sisters--most that I hadn't seen in almost 20 years! I didn't want to look like I was wearing a tent, but wanted to wear something to show where I was still skinny and well, where I wasn't so skinny.

I picked out a new blue shirt and remember having a wonderful time that beautiful fall day and just 5 days prior to Oct. 21.  Here is a photo from that very fun Saturday...a picture of me (wearing my blue shirt, little belly sticking out) with some of my dear sorority sisters.  Those of us in the photo were some of our chapter's charter members who were able to attend.  When did we colonize at Kent?  Sometimes 1990 seems like just yesterday!

We were all so happy to see each other.  I loved renewing old friendships and catching up.  The day was so much fun--we all watched the Homecoming Parade, I showed Alex where I used to live, we had a great time touring our chapter's new home (seen behind us in picture above) and then we took the boys to tour the part of KSU where the May 4, 1970 shooting had occurred.  I had never seen all of the tour spots as they were new to the school.  It was such a beautiful fall day to spend on campus with the leaves turning gold and the black squirrels darting about. 

And then.  Everything beautiful about fall turned ugly just a few days later on Thursday, October 21.  Here's just a sample from my very first blog post which I started that evening after my appointment at 12.5 weeks for an in-depth ultrasound:

With a sigh, he (the doctor) looked at me and started by saying, "We have some serious issues here.  There are some severe problems."  He went on to list things like:  thickness behind the baby's neck, extra digits, a protrusion in the abdominal wall and a cleft lip.  Never in my life could I have imagined hearing such things.  He said that while we didn't know for 100% sure, chances were highly likely that my baby had Trisomy 13 or 18, but he was pretty sure it was Trisomy 13.

Suddenly the the genetic counselor's information and diagrams came flashing back in my head.  I was thinking, "Wait a minute, isn't Trisomy 13 the most rare of the chromosomal abnormalities that a baby can have?"   People sometimes say that time stops when they receive horrible news. I wish I could say that time did stop.  I'd give anything if it just would have stopped.  It didn't.  It just kept ticking on with each second, each minute getting more and more unbelievable and awful with what the doctor told me. 

The doctor put his hand on my arm and said, "I'm very sorry."  Again, more red flags went off in my head.  It was almost like I had to pump him for the 'bottom line.'  It was then that he told me that my baby had an 80% chance of not making it to term.  It was difficult for me to form words at this point, but I asked, "So, are you saying I'm just waiting for my baby to die?  That it's just a matter of when and how?"  He said, "Yes."

I don't think any woman ever wants to use the words, 'baby' and 'die' in the same sentence.  It should be illegal. It was almost surreal as I used the words.  The doctor said I would more than likely miscarry.  Again, more shock.  Don't the statistics say that once you see the baby's heartbeat, once you reach the end of the first trimester, you have something like a 95% chance that everything is good and that you won't miscarry?  What good are statistics like that?  Again, I asked, "So, I'm waiting for my baby to die?  Is that what you're saying?"

My mind raced ahead through the next 6 mos.  Trick-or-Treating is next weekend.  My mom's birthday is this weekend.  Thanksgiving.  My husband out of town for various November weekends.  Christmas.  Do I just continue to live my life waiting for this awful thing to happen to me?  It could happen at any time.  How?  How do I do that?  How do you continue to get bigger, wear maternity clothes and at a time when you should be getting things ready for the baby, instead prepare yourself for your baby's death??  How?  How do I do that?

If you'd like to read more about the start of my journey, please feel free to read the rest of the post from October 21, 2010 by clicking on that link in the sidebar.

How fast things change.  Here I had just announced my pregnancy right before my trip home to school, I had just seen my sorority sisters who were full of congratulating hugs and I came back to what I thought would be a fresh start into my second trimester only instead to be forced into a journey that I never asked to take.

Who does ask to go on this journey?  Not many people would, I don't think.  While I didn't choose this journey for myself and my family, I would not change a thing that's happened in the last year.  Well, obviously if I could have had Jacob live, that's an easy one--of course I would have done that.  But, aside from that, I do not have any regrets.  For whatever reasons, God chose me for this journey and I am taking it one day at a time.  In the early days of losing Jacob or on some bad days, I take it one minute of a time.  That's all I can do and so far it's worked.  I have no idea what the "end" of this journey will look like or even if there is one. 

I think one thing that's helped me make it through the past year since receiving Jacob's fatal diagnosis and then losing him has been to not fight this journey.  As much as I would have loved to have denied what was happening, to hide from it or to lash out at it constantly, what good would it do me? 

I think back to Oct. 21, 2010 when I was so blunt in telling Sammy that his baby brother was going to die.  In his caring way, he had told me, "The baby will be okay, Mommy.  Don't cry."  I wouldn't have it.  I told him, "No, honey.  The baby is very sick and is going to die."  Sometimes I cringe when I think about my response.  How could I have been so insensitive to my sweetheart Sammy?  But then other times when I think about it I know I did it because I had to. I had to face this journey head on if I was going to make it through.  Even my mom was in utter shock when I called her with the news in the car.  Again, she tried to provide the ever supportive, "Well, I'm sure he'll be okay."  I remember yelling and crying, "No!  No, he won't, Mom!  He is going to die!"  I needed everyone around me to know the truth. I needed them to share the truth with me.  Only in sharing in the truth about sweet Jacob would I or would any of us make it through...and make it through together. 

From that day on, everyone was concerned and supportive.  Well, most everyone.  We'll leave that lie for now.  Even my loving Sammy offered me hugs to catch my tears. I knew he loved his little brother too and together our family shared in the uncertainty that came with that dreaded doctor visit and Jacob's fatal diagnosis.

Of course I prayed for the opposite. I prayed constantly that God would show all of these doctors with their stupid statistics.  That God would save my baby--that he would be a miracle baby and would live to be born and to be kissed in his mommy's arms.  I dreamt about it too.  How much I wanted to show them all that they were wrong!  Jacob would live and be an example of God's wondrous saving power and love!

I knew in my heart though that God had a plan.  I just didn't know my part in that plan.  Would his plan include my son living for a bit longer?  Much longer?  To be born?  To only live for a few months into his first year?  I had no idea.  It was like I was setting sail into an unknown sea where there was a tumultuous wave everywhere I looked.  How would I make it through? I had no idea. 

But I had to try. For the sake of my family--for Alex, for Sammy, for Benny...even for Jacob--I had to try to make it through that storm.  I had to be strong.

I tried to start planning for all of the "hows" and "what ifs" that very day.  Do we go out of town for my mom's birthday?  How do we celebrate mom's birthday with my brother and sister-in-law who also just announced they were pregnant?  What happens if the baby dies while Alex is out of town? What if the baby makes it past 20 weeks only to die shortly after?  Will I have a c-section?  Will I be able to have more children?  What if he made it to be born only to die immediately after he took his first breath?  What if he only makes it a few days or weeks?  How would I cope?  How? How?  How? 

All I can say is from October 21 on I started thinking about all of this.  I didn't have answers but I was going to get them as soon as I could in order to regain some sort of control because when I left the doctor's office last year, I felt like I was caught up in a whirling tornado that was thrashing all over the place. I had so many questions.  Scenarios in my head.  Fears.  Tears.  Anger.  Sadness.   And what did I leave the doctor's office with?  Pamphlets?  Support groups?  Anything to help me make sense out of what had just happened? 

Nothing.  For the most part, I left that awful place with nothing.  I left only with three ultrasound pictures that I had to ask the technician for over and over--I still think that she wasn't going to do them because of Jacob's fatal condition.  Did she really think that I didn't care to have them after hearing the news???  I also left with stupid printout that the genetic counselor ran to get for me when she saw me come out of the ultrasound room.  I remember asking her if she had anything about Trisomy 13 so I could begin to educate myself on what was happening to my son.  She said no but that she'd find something.  Do you know what she gave me?  A one-page sheet which was a technical summary of Trisomy 13.  It's all she could find.  You are a genetic counselor who grills people on their genetic family history and you don't even have packets of information assembled to hand to patients when they need the information?  I couldn't even understand what she gave me.  That's what I walked out of there with.  More questions than answers and certainly no help from the doctor's office.  So I was going to get the answers myself.

One question that I've yet to find an answer to is about the "odds" in pregnancy.  What are the chances for a miscarriage/stillbirth/etc.  The "1 in 4" at times seems to be conflicting with so many things that you read.  To this day I find myself HATING statistics. I will never forget how after I had sat through an hour-long meeting with a genetic counselor answering every question under the sun that she told me, "Don't worry about all of this.  You have a 98% chance everything is fine."  This was just prior to my ultrasound.  Ninety-eight percent.  That's pretty good, huh?

Really???  How is it that I fell in the 2%?  I guess someone has to, right?  Unless I'm the "1 in 4?"  And then of all things for my precious little one to have, it's one of the most rare chromosomal abnormalities?  Well.  Let's just say when someone now quotes statistics about how rare things are, I frequently react with sarcasm.

So.  It's officially one year since I received the horrible news that my precious son wasn't going to make it.  One whole year.  One year of tears, of sadness, of anger, of confusion, of questions...and also one year of discovery, of learning, of reaching out, of helping others...and lastly, one year of love and of hope.  I love my son.  I love Jacob so much.  I will never stop loving him nor will I stop talking about him.  He was a gift from God and I treasure him daily.  I never regret that we got pregnant. I carried my son for 13 weeks and I now treasure every one of those weeks.

October 21, 2010?  A day of horrible sadness for sure.  But also a day that I CHOOSE to remember something else. I CHOOSE to remember Jacob when he was alive and showing his mommy that he was very much ALIVE during the ultrasound.  I CHOOSE to remember those moments with a smile on my face.  Jacob was kicking.  He was squirming.  He was punching.  He was opening and closing his mouth to practice for when he would breathe someday.  I loved every minute of that part of my ultrasound!  How I wish I had a video of it!  That was the last time that I saw my sweet little baby alive.  But it's not the last time that I will see him, for I will see him again.  And I will kiss every squirmy inch of him when I do.

Much of this year has been about choices.  I have learned that I must choose how I will react to things.  Sure, some days I will cry because that's all I can do.  Crying is the only choice sometimes...like on the day you find out that your baby probably will not survive. That's what I did last October 21.  I cried.  I panicked. I yelled.  I moped.  But other days when I can make that choice, I choose to be grateful for my baby, for the 13 weeks that we had with him and for the opportunity to see him so clearly that day. 

October 21, 2010.  Where were you on that day?  I was at the very beginning of my journey and one that is common to so many, unfortunately.  It's not just my journey.  It is "A Mother's Journey"...full of loss, full of love and full of hope.

Thank you for sharing in this journey with me, my friends. 

With love to my sweet little Jacob--Mommy remembers seeing you on October 21! I know you wanted me to see you.  You wanted me to watch every movement you made--to laugh, to cry because I loved watching you so much.  You were here, my sweet baby.  Mommy loved seeing you and always will dream of the day when I can hold you in my arms.


*Special thanks to Small Bird Studio for the beautiful graphic about strength!

Monday, October 3, 2011

HEAL - A Walk to Remember...A Time of Shared Tears

October is finally here!  For those of you who are familiar with the significance of this month, you may have already been planning your activities to remember your precious baby. For those of you who are new to the baby loss world, the month of October is a very special month for baby loss families.  In 1988 President Ronald Reagan made October 15th National Pregnancy and Infant Loss Support Day.  The entire month of October is a time for us to reflect on our journey through loss and grief and a time to honor and remember all babies gone too soon. I look forward to sharing this special time of year with you.

For me October has extra special meaning. This is the month one year ago that we received Jacob's fatal diagnosis.  It is is also the month that we lost him to Trisomy 13.

I plan on celebrating my love for my baby all month long and I hope you'll share in this journey with me...parts of it might be painful as we look back to where all of this began, and on the difficult times...but then other parts of it will be joyful as we see how far I've come--as far as so many mothers come who have endured this grief.  I will also be sharing how much I've learned and how much love I still have for my son.  I'd like to think that most of my blog this month will be joyful as that's all I feel for my son--joy and love--no regrets.  The last year was definitely not something I planned, but it is something that I have grown from and something that I thank God for.

I hope you'll keep up with my blog this month and if you're not a follower, please add me!  I will be unveiling a new blog look later in the month (so excited for that!) and I will be sharing some of the baby remembrance events that I am participating in and coordinating as well.  If you are participating in baby remembrance events of your own, I'd love to hear about them and to share some of them here.  Please leave a comment so I can reach you. 

Because this month is so special to me, I also will be having some giveaways throughout the month.  These are just a small way for me to thank you -- each of you for taking the time to read my blog, to follow it and for offering your supportive comments, thoughts and prayers throughout this past year.  I cannot tell you how much it means to me.  Look for my blog posts to be approximately 3-4 times per week during the month of October.  Giveaways will be sprinkled throughout the month so keep an eye out!  The very first one will be on Thursday, October 6 and will be a copy of Richard Paul Evan's book, The Christmas Box (read below for why I chose this book).  If you don't have this book, it's a very inspirational read!  Even if you have the book, consider entering anyway as it would make a great gift.  Please just post a comment below this post to enter!  I will randomly draw one name on Thursday at 11:30 PM EST.

I couldn't have asked for a more special way to kick off this month of remembrance.  We participated in the HEAL Walk to Remember Sunday afternoon and this was our very first remembrance event to attend for Jacob.  HEAL stands for Helping Endure A Loss and is sponsored by the Atrium Medical Center in Middletown, OH. 

While the Walk to Remember was very emotional for all of us who attended, there was also much beauty and love blooming in the Children's Memorial Garden yesterday.  You could feel it all around you.  I have included several pictures of the event below and I hope you can feel the beauty that I saw and felt too.  Even if you never lost a child, I think there is something that makes us all stronger by sharing in a remembrance ceremony like this.

We got to the Atrium Medical Center at about 1:40 PM on Sunday.  I was feeling very anxious.  While I was really excited to be doing this for my baby and with my family, I also felt nervous about arriving to the walk on time and getting signed in. The walk was to begin promptly at 2:00 PM and I was worried that we might arrive late, not get a balloon or other memento items.  I know it sounds silly, but those things were important to me.

Once we found the event (after being on the wrong side of town) I dashed up to the event sign-in while Alex got the boys and stroller out of the car.  I had plenty of time, of course, but still wanted to make sure I made it through all of the stations to do and get what I needed to.

The first station:  Welcome

I am so proud to say that HEAL put on an amazing and wonderfully organized event.  I know how much planning these events can take and you could tell from the very first step that you took into the event area of the parking lot that they didn't leave any details out.  The first table you went to was clearly labeled, "Welcome".  Here I received a beautiful program.  I had no idea there would be that much structure so felt even more excited at what was to come in the ceremony.  The women at this table directed me to the next table to get name tags.

The second station: Name tags

Well, here is where I lost it.  A dark-haired woman wearing a beautiful baby photo button instructed me to fill out a name tag with Jacob's name and to wear it on my coat so everyone could see my son's name.   I don't know if it was seeing her baby or perhaps just writing Jacob's name on a light blue name tag with a butterfly on it, but somehow right at that moment I couldn't speak.  It was the type of tears that suddenly come out of nowhere to choke you while you talk. 

I think I spit out that there were four of us so as the lady counted out four name tags in blue and green colors (since Jacob was a boy), I looked up at her and said, "I'm sorry.  I was doing fine until I got here."  I don't know...was it that she was so kind to get all blue and one green name tags since that's what I originally requested?  Something so small and seemingly insignificant brought me to tears.  Seeing Jacob's name followed by the heart that I drew on it, knowing that everyone would see my precious baby's name on our coats...well, I just couldn't stop the tears from coming.  It was as if they had a mind of their own.

The lady took my hand and said, "It's okay.  That's what we are here for today."  I don't remember what else she said but she gave me two extra packs of Kleenex from a basket, our orange and yellow, "Free to fly" bracelets, and purple buttons with the same logo.  I quickly scooped up my items and went to the next station.

Because my nametag wouldn't stick to my coat, I wore Jacob close to my heart...

The third station: Backpacks

Again, who would have known we would be given so much stuff today?  Here I picked up a black and orange backpack with the HEAL and Walk to Remember logos.  I didn't look inside right then but found handouts later that talked about their support groups as well as a Christmas Tree Lighting Ceremony for our babies in December...oh, and more Kleenex!

The fourth station: Butterflies

I think I was still weepy at this point.  I couldn't say anything to the women working behind the tables.  The wind was blowing, gentle music played on a loudspeaker, and here I was writing with love and pride, "Jacob Alexander Villalva" on a lavender butterfly while tears continued to force themselves from my eyes.  I love to write Jacob's name. 

I think all of the women working this event knew what the mood might be.  No one pushed you to talk, no one forced you to laugh or smile...there just seemed to be an invisible support net that you felt caught in from the moment you entered the registration area of the parking lot.  Here was a safe place to be yourself and to let your emotions out if and whenever you needed to.

I looked towards the car and saw my hubby taking his time getting the boys extra coats and hats and then the stroller so I kept making my way through everything.  It was starting to get more crowded as 2:00 approached.

The fifth station:  Kids.

Wow.  I cannot believe that this organization cared so much to plan goodie bags for kids!  They were beyond generous!  They had bags for kids 3 and under and 4 and up.  Each bag was full of little toys, a pinwheel and animal crackers.  It was so sweet to see that butterflies were a common toy item--butterflies are symbolic in the baby loss community and I thought it was so touching that they included this symbol for our children.  Kids were also given rocks with butterflies on them--I took two and was told I could have the boys place them in the Memorial Garden or I could take them home.  Well, no doubt about that!  These rocks were coming home with me!  I am going to have Sammy and Benny decorate each of them around the butterfly and then date it for this year.  Can't wait to do that special craft with them.

The sixth station:  Balloons.

Big purple and orange balloons with alternating colored ribbon were provided for our balloon release...and you didn't just get a balloon.  You got to write your sweet baby's name on a card marked, "Precious Child".  More tears.  Yes, I kind of assumed that I would cry today but I didn't think they would give me so many opportunities and so early in the event!  :) At this point though, I never know when it will hit me.  My emotions are right there it seems, just waiting for a moment to escape. And of course, this month is probably just a tad extra heavy on emotions due to Jacob's angelversary approaching so I guess I need to be ready for it.

I fought the wind to tie Jacob's card, marked "Jacob--Mommy loves you!", onto the balloon ribbon.  Once I secured my card to the ribbon, I wrapped the ribbon around my fingers tightly so it wouldn't blow away.  Again, it probably sounds silly, but I felt that I just couldn't lose my balloon.  Even when Alex brought Sam back from the bathroom (you probably could have guessed that!), and we were looping the other 3 balloons on to the stroller, I had a death grip on all 4 strings.  The wind was pulling so hard and every once in awhile you'd see a balloon fly away.  It wasn't long before I felt my left hand cramping but I didn't mind, as long as I didn't lose my balloons.

Our Walk to Remember...Jacob

Finally it was time to start our walk.  I gave Alex my camera since my left hand was busy with the balloons.  He did a great job capturing the setting and us starting our walk.  We started in the middle of the group so had a lot of open space around us.  Then we caught up to the mass of people ahead of us, while another large clump trailed slowly behind us.  I didn't realize it until I saw the photo below, but I guess my emotions were quite easy to read just by looking at me.

We walked along a sidewalk that lined the curvy road.  To our right was the hospital.  To our left was a field, woods...simply nature.  It was a beautiful walk with the blue sky above and green around us.  It was only a 1/4 of a mile walk so it went pretty quick.  We didn't say much on this walk.  I don't think I could have talked if I had to. 

As we walked up the hill, I saw an event photographer take our picture.  I wondered what we said to him as we approached...what stories did our faces tell?  Could he see a mother's loss and longing to hold her son?  Could he see innocence on the boys'?   Could he see a quiet uncertainty on my husband's?

We came to the Children's Memorial Garden and found a spot on the grass since the circular bricked area in the middle was already full.  Alex guessed that there were probably about 200 people there.  Two hundred people came to remember their children on this cold, blustery day.  I saw grandparents looking like children themselves as they held the brightly colored balloons.  I saw little kids posing by memorial plates for their lost brother or sister.  I saw young couples--childless and clinging to each other.  I saw people like us.  Some families wore shirts to honor their loving children.  Others wore photo buttons.  All of us proudly wore our baby's name tags. I wished I would have had time to ask about each name that I saw.  I'm sure everyone would have shared a beautiful story about their child.

The Ceremony

The coordinator opened with a few comments about how we were all connected on this journey through grief.  We are a family. Last year when Jacob died, I would have never thought that I would be joining another family and yet...I have.  We have.  We belong to the baby loss community now.  We are forever a part of this very special group of people who have lost a child...a child gone too soon. 

The coordinator then prepared to read the list of names from the butterflies that we filled out earlier.  She spoke lovingly of her son, Mark, who passed away 19 years ago.  "Even though it's been 19 years, my heart still leaps with joy when someone says Mark's name out loud.  I will never hear his name at a football game.  Or at his graduation."  I will write more about this in a later blog post, but for those of you who have not lost a child, hearing your child's name said aloud is a treasure that long echoes in our ears and our hearts. 

As she read each name from the pastel butterflies, another volunteer stapled them to the orange ribbons that were blowing on a wreath.  When Sammy heard the name, 'Jacob', he said, "Mommy, that's Jacob!"  I said that that was a Jacob...but not our Jacob yet.  I counted one family had lost 5 babies.  A couple lost 4.  Some lost three and many lost 2.  My heart breaks for them.  One volunteer we met later had three baby girl names on her name tag.  She told me there were triplets and she lost them at 20 weeks and only had minutes with them alive.  She now has twins. :)

Finally our Jacob's name was read and our last name mispronounced. :)  Alex and I just smiled at each other. 

After the reading of the names, it was time to let the tears flow once more.  A soloist sang the song, "Precious Child" by Karen Taylor-Good and I don't think I was the only one wiping my face.  This song has been one of my favorite songs since I found this community. If you have never heard the words to this song, or if you are in the mood for a good cry, click on the link at the very bottom of this post and watch the video.  The words speak so gently to your heart.

The Balloon Release

After the song, we were instructed to walk up to the next garden in more of a clearing so the balloons would launch more freely and not get caught in trees.  A few had already popped or blown off but HEAL was so prepared that they had volunteers with more balloons so you wouldn't feel left out.

We made our way to the inner part of the garden circle this time and stood on the bricks.  Alex worked on untangling our balloons and I kept hoping my loose one wouldn't blow off that close to our release.  We untangled mine first.  Then Sammy's.  Then his and Benny's which had twisted together. 

The song, "Somewhere Out There" was played and everyone turned slowly around to face the outside of the circle towards the open sky--almost as if on cue.  As I turned, I saw the balloons going into the air from behind me.  The wind took each one of them up into the open sky, far from any trees or buildings.  I felt the string that I had held so tightly around my fingers loosen...and I let Jacob's balloon fly away to join those of his angel friends.  I was so happy to catch a picture of it--it's the orange one in the middle of the picture, (closest to the camera) and you can see the tag hanging from it. :)

Sammy let his go (the orange one in the bottom right corner of the picture above) and finally Alex and Benny.  Again, I was able to get a picture of their late release as their purple balloons followed the rest of the already far into the sky.  Not only could I hear the timeless melody still playing, and cameras clicking, but also sniffles from all around.  We all watched the orange and purple balloons dot the clouds in the beautiful blue sky and dance in the breeze.  They all flew off in the same direction--together. 

I heard a sniffle to my right--it was Alex.  My dear, sweet husband who for so long has held his emotion in, let it out freely during the balloon release.  We leaned on each other which of course made me sob some more. I longed for my baby to bundle up in the cold.  I wished he was riding in the stroller with a cute little blankie wrapped around him tight.  I know I haven't talked a lot about my husband's way of dealing with grief in this past year but have truly respected how we have shared our grief together and yet in very different ways.  Seeing him moved that much during the balloon release...well, it's hard to hold it together when you see your husband cry.  I was so grateful that he could spending time with his son in this way.  For just those few moments, everything stopped around us--schedules slowed down, there was nothing else for either of us to do but to mourn, remember and love our baby. 

I blew several kisses to Jacob, waved and gave him my "heart".  Sammy and Daddy gave Jacob hearts and we then made our way back to the Children's Garden for pictures.

It's hard to explain the emotion that you see and feel at an event like this.  Tears?  Sure.  Many eyes were red and many cheeks were streaked with eye liner.  Many sunglasses hid the depths of pain their owners felt.  Many words go unspoken but a hug can between two moms can capture it all--just like the woman at the name tag table who took my hand earlier.  I couldn't say much, but looking into her eyes through my hazy tear-filled ones, I knew she knew and felt what I felt.  That was enough.

But back in the garden after the balloon release, there were also feelings of love and hope that were shared amongst all of us.  I think everyone felt a little bit lighter.  No pun intended referring to the balloons, but it's as if the balloons lifted some of our sorrow and let it fly free and far away from our souls.  Our love soared to our children and then, I think our grief went too.  I think many of us felt a sense of peace settle in after being part of such a beautiful ceremony.  Families took pictures of their child's marker or of their kids placing the butterfly rocks in the garden.  Others photographed the wreath of names like we were about to do.

I went up to the wreath and remembered that Jacob's butterfly was lavender.  Something about the softness of that color spoke to me today and so I wrote on that one instead of looking for a blue one.  Because the wind was so strong, it was difficult to pin down the ribbons and to see some of the names which were twisting all around.  I'm smiling as I write this because you know what?  The very first lavender butterfly I flipped around was my Jacob's. :)  There is some significance here and I had a similar event happen years ago when I lost my grandparents' graves in the snow.  But, that's another story.

I held his butterfly in my hands and kissed it, just as if I would have held and kissed him had he been alive today.

Alex and I sat next to Jacob's butterfly...together.  There was just something so special to me about sharing these moments with my husband. I was also so grateful that we didn't rush our time there.  We took our time looking at the memorials, the baby angel statues and the Angel of Hope statue which graces the center of the garden.  I didn't know it until today but the Angel of Hope statue came out of a plea from parents nation-wide after reading Richard Paul Evans' A Christmas Box book several years ago.  There are 90 Angel of Hope statues across the country and that Evans finally commissioned.  We are lucky to have one here!

Below are just a few of the other baby stones that I loved.

We walked back along the curvy road and I too one more picture of the crowd who remained to enjoy the Children's Garden.

When we reached the parking lot, I saw that only one table remained now.  All of the brightly colored balloons were gone.  All of the families with their baby's names on their coats had left.  The event was over.  I think many of us came today with heavy feelings of sorrow on our hearts.  I know I was looking forward to this day but I wasn't prepared for the onslaught of emotion that hit me when I got there.  I'm sure I wasn't the only one.  But I think we left a part of our grief there...it went high up into the clouds with our balloons.  Will there be more grief and tears in the future?  Yep, most definitely.  Does this journey ever have an end where you don't feel some level of sadness?  No, I don't think so.  I have learned that this journey will continue until I reach my Jacob someday in Heaven and all along it I will face days of great joy and others of sorrow that will pop out at me when I am least expecting it.  Some tears I will be happy to shed and others I won't. 
No matter what, I am clinging to one thing on this journey.  It's what's gotten me this far in the last year and what I know I will need as I walk on my journey...hope.  Looking forward to spending this month with you, to sharing our tears, our joy, and of course, our hope.

With love to my precious Jacob...
Kim :)

Don't forget to check out the link to "Precious Child" and to post a comment for the book!

Here is the link to "Precious Child"