Ezra Bruce Burgess was addition #5 to our crew. The anticipation and excitement of adding a rambunctious bundle of joy to our family was big!
We were four months along this beautiful pregnancy when we went in for the growth and gender scan. Things were talking quite some time. A second technician was called in and we were told we needed to speak with the Dr.. The feeling of worry immediately flooded my body. We were told that Ezra's bones weren't growing as they like to see. He may have dwarfism.... but he also may not. Further evaluation by specialists needed to be our next endeavor.
I walked out of that office from worry to straight panic. Tears of the unknown for our baby puddled my eyes. The love and nurture of an angel nurse, tried to comfort me and let me leave the office through the back door so none would have to see my hurt.
Immediately after our appointment, was gender reveal time. We came home to a house filled with family and friends all ready to learn the gender and celebrate with us. I dry my face, try to push this panic aside, and celebrated with the ones we love and finding out we had another boy baking in there. Oh the joy!! The love surrounding us helped ease the worry as we had not shared the "could be news".
Waiting.... Waiting for that specialist appointment was nothing less than a ball of anxiety all the while I was trying to tell myself "it will all be okay" I was sure they had it all wrong. As long as our precious boy was not faced with enormous health scares, I was preparing for him to have dwarfism. I was already so in love with every inch of his little body. I was ready to be his mommy on the outside. To stand by him and watch him soar with his brothers and sisters
We finally made the trip to the specialist. We had scan, after scan, after scan... By this time my heart was nearly beating from my chest. Here it came...... "Mr. And Mrs. Burgess, we hate to tell you but your son not only has dwarfism, as he also has a genetic lethal skeletal dysplasia". "Incompatible with life" They spoke to send us out of the state of Alabama for termination because of the dangers and the "known" outcome for our Ezra. We declined. They assured us over and over there was nothing that could've changed or would change his fate.
This moment forever changed me.... Screaming and begging for them to be wrong at the top of my lungs in that office room, I could barely stand to my feet. I felt as if I just lost him and I would also have to lose him again...
Explained to us, Ezra's diagnosis was like a lightning strike genetic disease. Extremely rare, so rare that we contacted by John Hopkins University for "studies". His bones would not grow to support his life functioning organs. There was a mutation at conception... A crazy genetic "accident" before he was even fully formed. I was his only life. He could only live through me.
He. Could. Only. Live. Through. Me.
For months we made the hours drives seeing specialist after specialist.
We lived day to day with this dark shadow of knowing as soon as our boy is on earth, he will be taken. But oh how he was ALIVE!! I could feel him, I would sing to him, and speak to him, his every flutter would make me believe he was saying, "I'll be okay Mommy", he was a feisty trooper. Surely these Dr.s were wrong!?!
The long agonizing ups, downs, the thoughts of "they are wrong" and "he will die" played games in my head and my heart was growing tired. All the while still trying to be the positive sunshine to our precious living children... Inside, I was shattered.
Things were getting dangerous for us. Extreme fluid buildup and nerve pain. Those horrific things came along for me with his disease. Trips to Birmingham Hospital for monitoring and fluid drains became even moreso tiresome.
It was time....
I sat on our back porch all night with my head in my hands, crying uncomfortably, trying not to wake my family, knowing the time was now down to hours. The time for our boy to leave my body and enter this world. While the anticipation of seeing him, the trepidation of what was to come for him was heavy.
On February 22, 2018, Ezra Bruce Burgess, (his daddy's namesake) entered this world.
When Ezra entered the world he did cry one tiny beautiful cry. They handed our boy to us and those were the most precious minuets with Phillip and myself holding him together. They told us he was making no effort to breathe. They tried to prepare us for this months before. Those words, no matter how much preparation, were like a stab in my chest. My body began to shake as I screamed and cried, trying to hold on to him as long as I could. He was a fighter. His little heart beat went on for an hour but his tiny lungs just could not hold up.
As strange as this may be, I still couldn't let him go. I held his little body in my hospital room until we were discharged. I know that his soul was in peace with God in heaven but I needed this. No time is ever long enough with your children. I held his little hand, kissed and stared at his beautiful face, and snuggled him as long as I possibly could. I would catch myself thinking he was cold so I would bring his body closer to mine and wrap him up tighter. I would notice the blanket being on his face and I would move it so that he "could breathe". All to suddenly realize again and again, that our baby boys body was lifeless.
The days following, we came home and oh, how I wish he was with us. My body was so wore out from months of problems with the pregnancy and now a c section. It gives me constant reminders. My milk began to come in and I wished I could just tell my body there is no baby to feed. I have this incision that I can't even look at and that will leave a scar as a reminder. These physical pains and scars are normally supposed to all be worth it. I kept his blanket and his pillow that I would cling to them all day and night long. I had a stuffed bunny with his gown on it. But..... I didn' have him. I would stare at his pictures and I hear in my head his tiny little cry. I would much rather be kept up all night from him wanting to be fed and held than having sleepless nights with pain, thoughts, and tears. I wanted to snuggle him, feed him, rock him, sing to him, so so badly. I wanted him to know how much we love him. I wanted to watch I'm grow into the wonderful and talented young man that I know he would've been.
Instead of shopping for diapers and sweet outfits, Phillip and I were out looking for his final outfit to lay him to rest. He was pushing me in a wheelchair and we had to just stop in an aisle as I gather myself from all of the tears. I know he looked so handsome.. he even had a little green bowtie. We got him a baby stuffed bunny for his casket and how I wished so badly that we were putting it in his Easter basket instead. This HURTS!! My heart and my soul is shattered. There is an emptiness that will never be filled.
God did answer prayers. We prayed so hard for our Ezra not to suffer. We prayed that he would not have to live a life hooked up to machines to live and in the hospital. We prayed that if he couldn't be whole, to please take him home with him. We know Ezra is not suffering in heaven along with many others that we love.
In just one single moment... our lives changed forever. Loss has just been a part of my journey. I've had no choice... but it has also reminded me again what is precious. This journey has me accepting to ebb and flow and learn to live beautifully broken..... Grace has to be given, even to ourselves for this is how we survive for the ones we love so deeply that are living. The cards we are handed, or thrown at, we don't get to choose. Life can be quite bazar, it can change in a second... When you get to the point of you choose to see... that it can also be full of beautiful reminders that love always wins.
2/22/2022 Happy 4th Birthday to our baby bunny. Oh how I would love to know who you you'd be now!
You are greatly loved by many. I still believe because of you, amazing things will happen in your honor 💙