3/30/2012
Actual Journal Entry by Sarah Bergeron written on Caring Bridge to keep family & friends informed of Dr visits
After barely sleeping we headed to the specialists office with hope and prayers. All morning Brent kept reassuring me that Braxton would be fine. We sat in the waiting room silent with fear. For what we felt like was hours we next went through ultrasound frenzy. Watching them take pictures of our baby we could only smile because he was perfect to us, but then the Dr. spoke the worst possible news ever.
Braxton appears to have one of two very rare bone dysplasia's:
Braxton appears to have one of two very rare bone dysplasia's:
1- Osteogenesis Imperfecta Type 2
or
2- Campomelic Dysplasia
So of course naturally we wanted to know what we needed to do to get prepared for a special needs baby. The rest of the appointment is a blur to me after this. She did finally explain that there was nothing we could do to help him because both of these diseases are what she kept calling "lethal". No words can explain the feeling that overcomes you at that moment. Our hearts dropped and the tears began and have not stopped. Our angel is not going to be ok. The next thing I knew we were home surrounded by our family and friends. The next week was a roller coaster of emotions. Phone calls from the Dr were waited on daily, but still no news was good. We quickly felt like we were Dr's ourselves researching everything we could get our hands on. Finally we were asked to schedule a follow up appointment and amniocentesis to help determine Braxton's diagnosis. So all we can do at this point is be here for each other. At some point during this week my cousin and soul sister reminded me that Braxton could hear us so we should tell him how much we love him. Immediately we started reading to him multiple times a day. This gives us so much comfort. Friends and family members have now been sending Braxton books for Mommy & Daddy to read to him.
My Reflection Looking Back Now:
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 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 the picture I posted a few months ago now shows two precious miracles 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
