Mom to Amara Jocin Newland
August 12, 2005 – March 7, 2006
My name is not important, but her name is. She was Amara Jocin Newland. And I am, and forever will be, Amara’s Mommy.
I met Amara quite by accident. After two failed private adoptions, I had all but given up on the idea of being a mother. A good friend mentioned me to a lady, a friend of he and his wife’s, that had decided to give her baby up for adoption. She said “You should go get her. That’s the second time in two days that I’ve heard her name. Maybe I’m supposed to meet her.” He walked right over and knocked on my door and when I answered, he said jokingly asked, “Do you still want a baby?” He explained the situation to me and I guardedly agreed to meet her. After the first meeting (which lasted almost 4 hours of us just talking about my childhood, her life, etc.), she told me that I could “have her”. She was 5 months pregnant and had just found out that it was a girl. I was optimistic, but cautious. After all I’d been through, this was just “too good to be true”. I just couldn’t believe that someone could hand over something so precious without a second thought. But she had made up her mind and she never wavered throughout the rest of pregnancy, delivery, and after. She never reconsidered. I just knew that this was the answers to all my prayers. I attended every OB appointment from them on, saw the ultrasounds, and every report was good news. It seemed to me that her birth mother was doing everything right. I never suspected that this woman, this vessel, this bearer of my dreams, would be the reason that I would someday lay her to rest.
Amara’s Story: I was there for delivery. I saw my daughter come into this world and was enamored and completely in love before she ever took her first breath. I saw her for the first time, saw her little cleft lip (we had seen this on the ultrasound, but never felt it was significant because it was so easily repaired), and I remember thinking to myself that she may have Downs’ Syndrome. The features of her face reminded me of kids that I’d met with the condition. Even this couldn’t dampen my joy. I loved her completely and was ready to do whatever it took to ensure her a long and happy life. She was the most beautiful thing I’d ever seen.
When she was only one day old, the doctor sat me down with her birth mother and told me that they had bad news. They told me that she had a genetic condition called Trisomy 13. They said that my little girl, my brand new miracle, would be blind, deaf, and mentally retarded. They told me that she wouldn’t live long, that she’d be lucky to make it three months. I just couldn’t believe that she would leave me. I cried for a very long time. Her birth mother cried with me and never said a word. After she left the hospital the next day, I never saw her again while Amara was alive.
During that meeting, the doctor informed me that I could back out on the adoption, that it wasn’t too late and that no one would blame me for changing my mind in the face of such sure heartache. I had already loved her for so long, all the months waiting and preparing her nursery…dreaming dreams about what her life was going to be. I couldn’t imagine leaving her now, when she needed me most. I was her Mom.
We were sent to Children’s Hospital and spent months in NICU, our new home. Amara never left that hospital again. After the geneticist tested and told us that it was not Trisomy 13, the doctors concluded that her condition was a tragic combination of drug use, alcohol use, and poor nutrition. Her birth mother had never given any indication that any of this was going on. They determined through testing that there was marked abuse and neglect throughout the entire pregnancy, noticeable in abnormalities in her development. When I tried to defend her, they assured me that they had no doubts. They said that they’d seen these defects so many times, but never so many evidenced in one child. She was born with 7 heart defects, 2 lung conditions, and a migrational issue with the neurons in her cerebral cortex. She had a tracheo-esophageal cleft, fused hands, webbed ears, and rocker-bottom feet. As heartbreaking as it was, this was almost a blessing. With Trisomy 13, the condition is not compatible with life. Even with the overwhelming amount of work to be done with Amara, there was hope! All of these conditions had the potential of being repaired. This was the BEST news I’d been given since she’d been born. The migrational issue was the tricky one. It’s very nearly impossible to “fix” a brain. You just never know how it will react. Her specific condition would make her forget things that she already knew. For example, she would forget how to suck or breathe while eating, but remember how at other times. She had severe feeding issues and eventually got a feeding tube (G/J tube) to use until she was older and could be “taught” how to eat and swallow.
In spite of it all, she was very aware of her surroundings. Those big blue eyes never missed a thing. She had such a big personality for such a tiny little girl. Her smile was amazing. Her strength and courage were inspiring. She had her ways of letting you know what she wanted, and made no qualms about letting you know that she was upset. She fought such a hard battle, facing odds bigger than the both of us. She made friends with the nurses, doctors, aides, and other families in the NICU. She was such a joy to be around. It still amazes me that she was able to touch so many lives and never went more than 3 feet from her bed (due to her wires, tubes, and vent).
She was FINALLY discharged from NICU on March 3rd, 2006, having been there since August 19th, 2005. We were placed on a step-down unit and began preparing for our big move home. We had finally managed to get a handle on her heart conditions (after several surgeries) and she had a tracheostomy/vent to aid in her breathing. She was getting plenty of nutrition through her feeding tube and she had recently acquired her very first fat roll. We were very proud of that little chubby on her, and she would grin when I mentioned it. She was actually healthier than she had ever been and we were only 5 days away from being released home. She was supposed to be fitted with her home vent the next day, the day that would be her last. On the early morning of March 7th, Amara’s heart forgot how to beat. I was there with her. When her heart rate started dropping by 10’s, she smiled the most peaceful smile at me and closed her eyes forever. I was kissing her sweet face and telling her how loved she was, while begging God to let her stay. She had air support the whole time, nurses and doctors working to save her from the first sign of distress. There was simply no way to save my baby. I saw her come into this world, and sadly, I saw her leave.
She was the innocent victim of her birth mother’s mistakes, the sufferer of her terrible decisions, and the light of my life. She was only on this Earth for 204 days, but her time here was precious. Amara was 6 months and 22 days old when she left, and I thank God for each and every second. People ask me if I would do it again, knowing how it would end, and my answer is always the same: I’d do it again tomorrow. That little girl was the best thing that ever happened to me. She changed my life. She saved my life. And my joy in her far outweighs my sorrow.
I am working hard to someday open a long-term pediatric care facility to honor her, and I will call it “Amara’s House”.
You can contact Beatrice at firstname.lastname@example.org.