Conversations with Extraordinary Everyday People, excerpt from the book
“Tuesday Morning Love: 52 Commentaries and Weekly Affirmations to Honor the Soul Within the Souldier”
July – Week 27: Party of Five/Emma’s Journey
Rochelle Soetan: How do you define faith?
Amber Woolsey: Faith is having a hope in something greater and better. No matter what you do in life you are there for others. Looking outside of yourself allows you to do what Christ would do. Living by faith is living as Christ did.
RS: You are a true philanthropist. How do you help out within your Christian community?
AW: I see where there is a need and try to fill it. I was listening to a talk from one of the ladies at the church about having something to teach, whether it be a gospel principle or a hobby. You go out and teach it. That’s more of what I do. I find the things that I’ve learned and I share them with people that have a need. If someone needs a meal, I’m there. If someone needs someone to talk to, I try to be a listening ear.
“We realized that every sorrow and pain we were going through, Christ already did.”
RS: Have you always been this way or was there a life-changing event that pushed you to become more than you knew you were?
AW: I haven’t always been this way; my mom has always been this way. We call her
Mary Poppins because she’s practically perfect in every way and she was my influence in life. She made me want to be a better person and there were times when I was selfish as a teenager.
RS: No one would ever know that about you if you didn’t tell them. Cammon is six, Aiden is five, and you lost Emma in January. Tell me about Emma’s journey.
AW: We had two miscarriages before Cammon. Emma was two when she passed. It was on the fourth of January. I was 18 weeks pregnant when we found out about her heart condition. It was really odd because I was walking in for the ultrasound and I didn’t want to be there. I just felt like something was wrong. My husband, kids, and mother-in-law were there because we wanted them to see the baby. I’d had two kids and the doctor generally says, “Ok everything looks good” then he lets you go, but I knew something was wrong this time due to the ultrasound tech spending so much time on her heart.
The doctor came in and told us that Emma had a very bad heart condition called
Hypoplastic left heart. Basically, she had a two chamber heart instead of a four chamber heart. Her blood was getting mixed because one of the two chambers was experiencing even more difficulties with functioning. They said they had never seen a condition as bad as hers and recommended terminating the pregnancy. Because we were inspired beforehand, we said no. They kept pushing us after many appointments but we kept saying no.
RS: When you say you were inspired beforehand, you knew of something significant?
AW: We knew that one of our children in the future would have a special or medical
RS: When did you discover that?
AW: Before we had Cammon…that was something that was revealed to us through spiritual enlightenment. We knew that this child would be a girl and I remember the first thing out of my mouth after being told it was a girl was, “Now we have to find out if it’s Emma!” Sure enough, it was. We went through the journey preparing ourselves for what was going to happen next.
RS: You gave her a name before you knew she was a girl?
AW: This special child, yes. We knew it was going to be a girl and we knew that her name would be Emma. We also knew that she would have special issues but we didn’t know what those issues would be. When we found out about her heart condition, we knew it was our special kiddo finally coming to join our family.
RS: How did you prepare for that or did you?
AW: We did our research and found out more. My husband is in med school so he drew a diagram and showed us, “Here is what a normal heart looks like and here is what her heart looks like. And here’s what her heart will look like after surgeries.”
We worked with the doctors but weren’t sure if she would even make to her birth.
Everything went really smoothly the rest of the pregnancy then she was born.
RS: She graced your life and blessed you guys.
AW: She went straight into the Neonatal Intensive Care Unit [NICU]. She was doing so well that they brought her back into my room so I could see her. It was amazing and she was a miracle. We called her our “tattered angel.”
RS: How long did she stay in the NICU?
AW: She was there for five days and on the fifth day which was a Monday, she went in for her first open heart surgery. She was only five days old and recovered really quickly, but she kept throwing up which prompted a big concern. It’s bad for babies with this condition to vomit because they can aspirate and die quickly. She was in the hospital for three months while we figured out her feeding issues. We never figured it out and she ended up getting two feeding tubes – one in her stomach and the other in her intestines. She came home for a week and then was back in the hospital for a month. That was her journey. She spent over half of her life in the hospital with multiple surgeries and lots of X-Rays.
RS: How many surgeries did Emma have altogether?
AW: I honestly don’t know. It was more than 15. She had only two open heart surgeries and there was to be a third but after her second one, we almost lost her. They discovered that one of her lungs wasn’t working properly because it wasn’t getting enough blood. She had one fully functioning lung and the other was pretty much dead.
RS: Before her passing, did you expect that coming so soon?
AW: We knew that pretty much every day we had with her was a blessing. Even if she had all of the open heart surgeries or a heart transplant, we knew that she would make it maybe only to age 25 because her heart condition was so bad. We took things day by day. It was hard because every time she would go into the hospital sick, we weren’t sure if it was the last time we would be with her. It taught us a lot about having patience. I’m one of those people that plan for everything; it was a big lesson in patience for me in just knowing that God was in charge.
RS: What was the energy like the week before she passed?
AW: The month before she passed she went into the hospital with pneumonia. We woke up in the morning and her jaw was clenched; she was unresponsive and it didn’t look good at all. We had just taken family pictures a couple of nights before. That was amazing. I remember her being really sick. Every single time they would try to take down her oxygen her bad lung would collapse, so they put her back on the respirator. Once they got her off the respirator she had to have a high flow of oxygen, which was like having hundred mile winds blow into her face all the time in order to make her breathe.
No matter what pain Emma was in, she was smiling and happy. She would get her blood drawn and scream the entire time, but as soon as the needle was out she’d be playing and laughing with the nurse! She was just a happy person. During the last few weeks, she wasn’t happy nor was she smiling. She was very lethargic and you could tell in her eyes that she was tired. That light was still there but it was dimming out.
RS: Did she pass in the hospital or at home?
AW: She did pass in the hospital. Her lungs were clearing up but her heart was failing.
She had been through so much that her little heart couldn’t take anymore. We were preparing to go to Pittsburgh for her to have a heart transplant. The day before we left is when she passed away. It was amazing and another miracle because we all got to sit there and say goodbye. I was going to be leaving my family so that she and I could live in Pittsburgh for the year needed to recover after a transplant. We all went to say goodbye with the boys and my husband, and within a few hours after we left we got the phone call saying that she had passed away. It was pretty incredible that we got the chance to say goodbye to her, most people do not get that opportunity.
RS: How did her journey change your family structure? Did it make your family stronger?
AW: It did make us stronger. I believe that in having a child that’s so sick, you have to rely more on the Lord and put your life in order so that you can have His spirit with you. When challenges like this appear, instead of asking and praying and not getting an answer, you ask – or sometimes you don’t ask – and the answer is right there.
Get your copy of “Tuesday Morning Love” and read the full conversation! Amazon.com
In 2011, my connection with the Woolsey Family was quite unique. I had the extraordinary opportunity to meet little Emma, and I am honored to know them. I am equally grateful to them for sharing Emma’s Journey with me.
Today, Amber Woolsey and her family continue to enjoy life. Verl, Amber’s husband, has finished med school and is now a Physician’s Assistant in a Cardiology clinic in Washington, DC. Amber works from home as an assistant manager for her husband’s medical office. She spends a lot of time coming up with fun things for her sons, Cammon and Aiden, to do and fun ways of helping them get along and learn responsibility.
She has not been able to take the time to work on her business ventures, but does enjoy sharing her knowledge with the world on her blog “Confessions of a Super Woman” found at superwomen-r-us.blogspot.com