I’m not a writer and I’ve never written a blog. The only way I know to get started with this is to simply tell our story and write from the heart. Maybe I will get better with time 🙂
I’m sure that you have read Abigail’s story in the “Her Story” section of this page. Abigail is our 4th and youngest. My husband and I tried for another child for several years (2 actually), after our daughter, Alayna, was born in 2008. We were unsuccessful, and after several miscarriages, finally accepted that we were not meant to have anymore children. Several months later, I made an appointment with my OB-GYN to discuss a tubal ligation. As I entered the office that Tuesday morning, September 6, 2011, I was content with my decision to be “done” having babies. I hadn’t been feeling very well that morning and my OB-GYN insisted that I take a pregnancy test. When she came back into the consult room, she had a big smile on her face. She informed me that I was pregnant! I was shocked! We had given up on trying for more children and I had even been on birth control. I was nervous and happy all at the same time. I had truly accepted the thought that I would have no more children and here I was- pregnant!
I am extremely paranoid when I am pregnant. Paranoid in the way that I follow all of the “rules”. Limited caffeine, no aspartame, no lunch meats, no medication other than Tylenol if absolutely necessary, etc… All of the things they warn you can cause harm. I went in for regular check-ups, ultrasounds, and even had a 4-D ultrasound where they checked her blood flow and heart valves. Everything seemed to be perfect. She was developing great and appeared completely healthy. We were very excited and couldn’t wait for her due date in May of 2012! We knew things would change and having a new baby would be an adjustment for all, especially Alayna who would be almost 4 when Abigail was born, but little did we know the journey we would be headed for… and little did we know that through that tough journey, a tiny, innocent baby would teach us huge things about life before she could even walk.
On May 7, 2012, Abigail Faith Haynes made her way into the world! She was perfect in my eyes. I didn’t notice the small bruise-like mark on her left cheek. I saw a beautiful, already smiling, perfect baby girl. Our entire family was immediately in love. When the pediatrician pointed out the small mark on her cheek and said it was probably a bruise or could be a birthmark, I didn’t think twice about it. Honestly, it didn’t matter to me. Otherwise, Abigail appeared completely healthy. We took her home 2 days later and life felt complete.
Even though Abigail developed normally for the next 9 months, the spot on her cheek did not disappear. The doctors deemed it a birthmark, more specifically a Hemangioma. It never felt like a “right” diagnosis to me, but I accepted it until one day when I noticed a mass forming on the inside of her cheek.
February 21, 2013 was the first time I had to watch my baby put to sleep. It was the day of her first MRI and I was a wreck. Watching her struggle and cry while the IV was inserted, unable to explain to her why this was happening, and then watching her finally fall asleep in such an unnatural way, gasping for air (which they said was normal due to the crying leading up to), completely did me in. I went back to the waiting room and sobbed. I was terrified for why we were there in the first place and after watching that, was trying to fathom how I could possibly handle what procedures would follow if the doctor’s suspicions were correct. When the specialist at Emory mentioned “Vascular Malformation”, I did some research. Enough research to know that it wasn’t good. I could do nothing but sit and wait and pray. Pray that they would find nothing.
Two weeks passed. I was getting frustrated. The doctors at Emory had been reviewing her MRI and were pulling in other specialists to review and give their opinion before making an official diagnosis. It seemed like an eternity. March 8, 2013 was a Friday. I was looking forward to the weekend and decompressing from a stressful week. Around 6pm, I decided to take a shower. I had placed my cell phone beside the tub. It rang and I noticed the caller ID was an Atlanta area code. I quickly answered the phone. It was Abigail’s specialist at Emory. She was hesitant, asking me if it was a good time to talk. Of course it was! I had been waiting 2 weeks! When she explained the MRI findings to me, I was in shock. Not only was the mark in Abigail’s cheek a Venous Malformation, but there were 2 more in her lip and tongue that were not yet visible on the surface. When she said there wasn’t much they could do to help her, my brain shut off. The remainder of that conversation is a blur. I simply remember yelling for my husband and then collapsing in the tub.
Even though Abigail’s condition will affect her for the rest of her life, I thank God daily because I know it could always be worse. We have stayed at the Ronald McDonald House numerous times and my heart breaks into pieces for children battling much more serious illnesses. I know they cannot relate to our battle and I cannot relate to theirs. Abigail’s condition could be life threatening without proper treatment. We will go to the ends of the Earth to find the best treatment possible for our ‘Smileybug’ and I will pray everyday for a cure. I thank God everyday for all of the family, friends and complete strangers that have come together to support us 100% in our journey. When Abigail was diagnosed, I felt completely alone. In a matter of months, we had 1000 supporters on her Facebook page and so many individuals that had put together fundraisers for her and that were sending us messages of hope along with many prayers. When I found out we would have to travel long distances to get Abigail proper treatment, the cost of travel never occurred to me. I knew that Abigail needed these treatments and I was going to find a way to get her there. I look back on the total cost of everything over the last year and know that we couldn’t have done it without all of the support from everyone. It is truly humbling. It has always been easier for me to give than to receive and being on the receiving end has not been easy. I will pay it forward one day. If you are reading this and following us on this journey, thank you. Our family sincerely appreciates you.