Our First Specialist Appointment...

Friday, March 30th 2012..... WOW that was an incredibly hard day.  Although so much feels unreal about that day, there is so much pain that can still be felt from it.  That day is the day my whole world started to crumble.  And still to this day out of all of our appointments (and believe me we had many) while pregnant with Braxton, this one is the one that I can say blindsided me the most.  There are times in my life that I have been caught of guard or even completely had something unexpected happen, but this appointment was like someone punched me and took all of the oxygen out of my body.  This day took a piece of me that I have never been able to replace.  It took the naïve thought "all good things happen to those who wait" out of my world.  And yes I still believe that all good things do happen to those who wait very strongly, but now I have a big piece of worry that goes along with it.  Well actually a huge piece of worry that is with me day in and day out now with everything.  You hear so many stories of families that have endured so much, but you never in a million years think you will be one of them. 

"Your son may have one of two bone diseases"  I heard the specialist say.  As I laid on the ultrasound table sobbing and unable to form any words Brent began to speak for both us as he gripped my hand even tighter.  "So which of the two should we pray for, which is the best outcome for our son?"  Through all of the scanning up until this point he had been sitting on the side of me watching the screen intently.  Now as he began to ask the question that would determine Braxton's future he was standing and I could tell he was in major defense mode.  Almost as if to tell the Dr not to let anything bad exit your mouth, enough was enough it was time to tell us something good.  "BOTH ARE LETHAL DISEASES" the Dr said.  And I have said many times that I have almost blacked out in appointments, barely remembering much.... But I do remember that word.  There is no forgetting that word when it comes to your child.  But even though I heard it I still could not get my mouth to form words and ask the questions that needed to be asked.  Next, I heard Brent begin to speak again but this time he did not have the sternness in his voice that I am so used to.  This time it was shaky and confused as he said "LETHAL?"  His tone had a loudness to it and I could tell it was because he was trying to get the word out without crying.  As I looked up at him from the table I was laying on I began to cry harder as I watched him fall apart.  He began crying harder and harder and shaking his head back and forth, in a way that I knew meant he was not wanting to believe what he was hearing.  "What does that mean" he asked looking down at the floor unable to look the Dr in the eyes.  I know now he knew exactly what that word meant, but he needed it to be said outloud so he would never question it.  Me on the other hand heard it and would never accept it no matter if it was said outloud or not.  Brent's next words were merely "No, No, No".  As the Dr tried to explain the definition of LETHAL I think we both tuned her out.  We didn't want to hear anything she was saying.  Brent looked around the room and became even angrier when he was unable to find Kleenex for either of us as we sat there in our own pool of tears.  "Seriously how can a place that tells parents their child is going to die not have any freaking Kleenex", I heard him semi yell??  I couldn't fuss at him for the rudeness because he was right.  And although he was madder than I have ever seen him I knew it was because he was hurting more than anything.  The Dr left the room and we just sat there in each others arms crying and trying to make sense of what had just been said to us.  The room still dark from the Ultrasound procedure felt cold and empty, almost as equally to how completely helpless I felt.  It seemed like we could of sat there for hours because we physically could not move.  In some way once we got up and left that room it meant even though we didn't want to except the truth we were going to be forced too.  And we simply were not ready for that.  Finally the nurse came back into our room and told us we would have a follow up appointment that would be scheduled once the Dr was able to contact another Dr to view our scans and verify her findings.  The trouble was the diagnosis she was leaning towards; Osteogenesis Imperfecta Type 2, was so extremely rare that she only knew of a Dr in Nova Scotia that may have seen it, which meant to be able to reach him would be difficult due to the time difference.  As we were exited out of the back door I remember having to tell myself to put one foot in front of the other as I held my abdomen in a way that made me feel like Braxton could feel my love for him.

As Brent loaded me into the car we started to drive home.  Who do we call first, what do we tell them?  All of our close friends and family were waiting on an update from us, but none of them were prepared for what we had learned today.  Next I heard my Mom say, "What, wait Sarah I can't understand you baby.  Why are you crying so hard?"  She has always been my go to, my friend, my safe place and I could not find the words to tell her the sweet baby boy who was supposed to make her a Grandmother was not going to be okay.  Brent took the phone from me and all I heard was "No Mam it is not good."  Then I heard him trying to find the words himself.  Apparently my Mom was unable to control her tears as well and had handed the phone to my brother and Brent simply told him "Just get to the house now!"

I honestly can not explain what I was thinking or feeling in this moment.  Mostly because it truly felt like a bad dream that I just needed to wake up from.  I do know when my parents and my brother arrived , but when they did I was sitting in Braxton's room with one of the few items he had been given, due to the fact that we had only learned he was a boy yesterday.  It was the tiniest white 2 piece set that said Mommy Loves Me in grey.  As I sat in a ball I clinged to the outfit tighter than I think I have ever held anything in my life.  All I could do was rock back and forth as my tears poured onto the outfit that my son was supposed to wear in a few months.  The one that he may never get the chance to wear if this day was actually true.  For the next few hours after Brent's parents arrived we all just sat together and cried.  At some point I needed fresh air and we all made our way to the back yard.  And this photo was taken.  As I posted in my very first post on this blog.... This was our spot!   This backyard has seen, heard and been with me through it all.  It gives me so much peace and happiness knowing now my other two precious miracles can be seen playing in it, but it also is a place where Braxton was present at one time too.  I truly believe when we are back there 3 babies are present now.

My brother took the initiative to inform our close friends for us so we would not have to keep retelling our update over and over.   I have since learned that most of our friends and family he called were also having a hard time understanding him because he was crying so hard as well.  My heart still breaks to think I put him in that much pain in a way that was unintentional even though it was out of my control.  Our friends one by one showed up at our house and sat with us all evening.  The love and support was amazing.  All we could do was explain that we did not truly understand what was going on, but that the Dr was adamant that our son would not survive.  So the waiting game began and it would prove to be the hardest thing any of us had ever endured.  I still do not know how we were able to survive these days.  The only thing I do know for certain is we could of never done any of it alone.  We are forever grateful for our friends and family.  Every single day we received calls, texts, emails and prayers to remind us we were not in this by ourselves, and more importantly that Braxton was loved very much.

This beautiful arrangement was sent to me the day after our first specialist appointment from my amazing group of highschool  girlfriends, whom mean the world to me!  The card read:

This arrangement was chosen especially for you guys from the "Mob Squad."  We collectively chose the Gladiolus flower representing strength.  This amazing flower got its meaning from the Latin word "gladius" that means sword, representing the strong and resilient Roman "gladiators."  In congruence with the belief of "strength in numbers" you guys can always count on all of us for support & strength in every step of this journey.  Take comfort in knowing we are here with you the entire way.  We love ya'll so very much.

Love,

The Mob Squad

 We promised ourselves and Braxton we would never give up on him.  We would take it one day at a time and fight with everything we had in us.  The next week we received tons of phone calls informing us that there was no more further information they could find yet, but when they did we would be asked to come in for an amniocentesis.  We prayed that would answer all of our questions.  The uncertainty was a very lonely and scary place.  A place I do not wish on anyone.  I began to view everything so differently.  In the moments I was not mad I started to take in all the little things that before I had never truly paid attention to.  So many things did not matter anymore.  All that mattered was my son and protecting him.  Plans, schedules, normal daily stresses were nothing.  My cousin began traveling to my house weekly at this point to be with me.  Her and her kids were the happy in my day when they would visit.  I recall the ducks in our neighborhood visiting often and when their small babies were born I remember thinking it was a sign.  Some sort of message to me that I was and always would be Braxton's Mother no matter what happened.  My brother's birthday and Easter were coming up and the thought of trying to smile and continue on was painful.  But life was still going on around us and I had to realize that was never going to stop.   Brent & I were still determined that we were going to make each day special with Braxton while he was in my womb.  We were

 going to treat it as he was here and make memories regardless.  I vowed I would not look back and regret not sharing anything and everything with him.  And that is where our journey "Waiting On Braxton" began to take on tons of peace even on the hard days.  Our story may have to be different in the end ,but it was going to be a wonderful story no matter what.

Prayer During Pregnancy

Help me, Lord, to enter the mystery unfolding deep within my womb. 

 Allow me to accept this gift with wonder and excitement. 

Permit me to cherish the life I carry. 

I freely offer my body, mind, and spirit as my unique gift to this child.

Lord, I know you are present, taking care of me and my child. 

Help me to experience your presence and know your loving care. 

Increase my faith and trust in you.

Amen

Trying To Feel Normal

That night after our 20 week ultrasound we decided to still have our gender reveal; which I somewhat remember.  I can remember trying to smile and also trying not to show how scared I was.  All I knew was that I was finally getting to be a Mother.  Something I have wanted from as far back as I can remember.  It was who I was supposed to be and all I ever wanted in life.  And for now I felt like all the trying, all of the waiting and the joy of being pregnant may be taken away from me.  Brent and I had experienced a very hard time in our marriage leading up to our pregnancy.  To the point of us practically separating because we did not know if we were meant to be.  After many tears and painful words exchanged to each other we decided to give ourselves one more chance.  Not long after that we became pregnant with Braxton.  So in that moment all I wanted was to soak up every ounce of normalcy I had left before our specialist appointment.  Some where deep inside I knew this was not normal at all, but it was all I had.  So with tears rolling down my face I watched blue balloons rise up from the box that my Mom had gotten done for our gender reveal.  And with all honesty I can tell you those tears were real, they were real joy in learning I was carrying a son.  No matter how much fear I had that entire day in that moment I did not need to try and feel normal, because I felt exactly like I had ever imagined I would feel when I learned the gender of my first born child.  REAL, I felt like a real Mother just as I had always dreamed I would.  That feeling was beyond special and can never be taken from me, regardless of anything any Dr would ever tell me about my son.  It sank in then... I was having a boy!  A boy that needed me to fight for him with so much faith, hope and love that I never even knew existed before this moment.

Later after everyone left my phone rang.  It my OB Dr. Bourque. He very calmly began to tell me that once we left his office he looked at our scans again.  He explained that he truly thought the ultrasound showed evidence of Braxton being a little person/Dwarf.  I will never forget what came out of Brent's mouth next.  "Oh that's fine Dr Bourque that is fine."  While I watched him slowly tear up and grab my hand and squeeze it as to say, It's OK it's going to be OK.  This moved me more than I think he will ever know or more than I have ever admitted to him.  I know in my heart Brent is a kind and gentle person, but he is also quiet, timid and rough around the edges.  And with that being said he is also a man, a man who has always wanted a son to play sports like he did and to go fishing with in the weekends.  So to hear him verbally state he was OK with our baby having any sort of handicap as long as he could live and function (even if it was in his own way with mind and body) was so comforting.  In that moment he became a Father, and it was the start of him understanding that the little things we always wanted were not as important as the big picture.  We were united for once in our marriage and it felt good to feel like a team.  This would be the first of many times my husband surprised me with the words he spoke on Braxton's and my behalf along our journey!  A journey that was ours and we were excepting as God's plan.

Looking back at that night I truly do not know if either of us slept as we prepared for our specialist visit the next day.  I wanted more than ever for today to just be a nightmare that we would wake up from when the specialist would clear everything all up.  Even though I prayed for answers that night, the things we were about to be told were by far the farthest from what we wanted to hear.  But from that night forward the WAITING began and none of us knew the journey we were about to begin, the journey that would change our lives forever!  
This would be Our Story!

If I told you my story

You would hear hope that wouldn't let go

If I told you my story

You would hear love that never gave up

If I told you my story

You would hear life but it wasn't mine

If I should speak then let it be

Of the grace that is greater than all my sin

Of when justice was served and where mercy wins

Of the kindness of Jesus that draws me in

To tell you my story is to tell of Him

If I told you my story

You would hear victory over the enemy

If told you my story

You would hear freedom that was won for me

If I told you my story

You would hear life overcome the grave

If I should speak then let it be

This is my story this is my song praising my Savior all the day long

Numb From Now On

- 20 weeks pregnant 

- half way there

- boy or girl?

- how much bigger will I get?

- should we cook étouffée or order pizza tonight

   for the gender reveal party?

These were some of the thoughts racing through my head as Brent and I sat in the waiting room waiting for our 20 week ultrasound.  Now looking back, how naive was I.  The tech took us back and began the ultrasound.  Ahhhhh I hear the heart ✅ five fingers five toes ✅ diaphragm moving up and down ✅ kidneys ✅ stomach has fluid in it ✅ measurements......... Silence.  This is where our easy/normal pregnancy became something more than we could over ever imagined!!!!

The tech quickly exited the room and went to get my Dr.  I vividly remember looking over at my husband and saying "something is wrong."  He quickly told me I worry to much and she was probably just finished with her part of the scan and it's time for the Dr to come in.  Wanting to scream at him that he was wrong I just sat there and told myself to calm down.  I remember my Dr coming in and viewing the screen and taking a few measurements then calmly telling me a few things were concerning???  And then the numbness set in.

I don't recall much after that.  Next thing that I truly remember is sitting in my car.  Brent had walked me to it and made sure I was ok and hurried to work to inform them that he would need a couple days off for us to see specialists and see what was what.  I just sat there numb.  Who do I call, where do I go, how am I supposed to just wait around and I don't even know what's going on??????  

Next thing I heard was my Moms voice.  "Daddy is on his way."  My dad pulled up and immediately was in my car and I lost it and was sobbing in his arms.  I couldn't hold it in anymore.  The questions were flying and I didn't know what to tell him because I didn't even understand what was going on.  I recalled them saying his legs and spine weren't measuring correctly but that's all I could remember.  The numbness somehow how had taken over and I couldn't focus enough to pay attention to what the Dr had told me.  At that moment my phone rings and I couldn't even  move to answer it.  My dad answered it and this is what I heard.  "Hello, this is her Father.  TWO WEEKS?  No that is not acceptable we need to see the specialist today or tomorrow.  We will not put my daughter through 2 weeks of worry."  As he hung up he said you have an appointment tomorrow morning and then you will have answers!

Well I truly believed that.  But little did I know we may not ever get the answers we were hoping for, that we needed or that we wanted!  The numbness I felt that day still hits me at times.  I can be going about my life, raising the 2 healthy babies I've had since Braxton and it just hits me.  I'm motionless and numb.  I have to remind myself that this is my life.  Because from 20 weeks pregnant till after my sweet baby went to heaven is a blur.  How did I function in that time?  How did I survive? How did I make it through?  I still don't know the answers to those questions.  The only thing that I can say is my undying faith, my undying hope and my undying love for my child and in God is what got me through.

So for me when I see this picture all I can remember the numbness that set in and that is still present even today

When someone tells you that numbness is a feeling please believe them because it is real.  I now believe it was my breaking heart telling my body to go numb in order for me not to completely go crazy.  The blank stare I had from then on was not because I didn't  care... It was because I cared so much but was Numb 😥

Surviving

My mom is a survivor

or so I've heard it said.

But I can hear her crying

when all others are in bed.

I watch her lay awake at night,

and go to hold her hand.

She doesn't know I'm with her

to help her understand.

But like the sands upon a beach

that never wash away...

I watch over my surviving mom

who thinks of me each day.

She wears a smile for others,

a smile of disguise.

But through Heaven's open door,

I see tears flowing from her eyes.

My mom tries to cope with my death,

to keep my memory alive.

But anyone who knows her

knows it's her way to survive.

started a blog awhile back thinking I could share my journey as a grieving Mother and possibly help others.  After writing for sometime I began to doubt myself in every way imaginable.  Little did I know my blog was helping me more than others.  For the past few months I have felt broken more than ever and it’s time to silence those thoughts.  I am so excited to begin blogging again.  I still pray I can help even just one person through my journey; but if that one person is me, I’ll be happy with that too!!!!!!!!