Can you describe your emotions when you first heard your child’s trisomy diagnosis? What thoughts or fears came to mind?

She was over a month old before I was told. She was a premie with other health issues low blood sugar and strep positive. I did not know anything about it. They had to send labs to SALT Lake City for testing and Dr Carey had come to are area doing a clinic he was the first to try and explain it to me. I had no preperation before she was born that there was any problem. Then over a month later. They wanted to send her to Primary Childrens in SLC Ut because of her health issues but choose to keep her here so that I would have family support incase anything happened to her. I had 2 other children at the time.

What were your feelings and experiences when your child was born? How did that day compare to what you expected?

She was born at 31-32 weeks as my placenta had been shutting down. She was born by C section because they keep losing her heart beat. My water had broken so I was in the hospital because I am strep positive. When she was born she was very small 4 lb 9 oz and I only got to see her small face before she was taken to the NICU ICU. The cord was wrapped around her neck 2 times. Because I had a fever I was not allowed to see her. They took a picture and gave it to me. Before she was discharged the RNs in the Nsy made a cast of her hand as she had 6 fingers on her right. She had to stay 2 weeks in the NICU. Once when I went in to visit with her she was in a warming bed all hooked up and the RNs did not want to move her. My Doctor came in as I was very upset the bed was wet and she was laying in it. He told them that they were to make sure that I got to hold her as much as I could her time might be short. They sent her home with me and had Home Health working with us. I still did not know what I was looking at.

How has your perspective on the trisomy journey evolved over time? What have been the most challenging and rewarding aspects?

I was set up with Home Health when I brought her home to give her meds and test her blood sugar. Dr Carey sent me a book on Trisomy 13. After about 6 months I was set up with Early Intervention TLC which was a God sent. They helped me work with her to crawl ect. Because of Dr Carey who was also a god sent he got us set up with different clinics from Primary Children Hospital for testing on brain stem, cardiology, vision, orthopedic and later endocronolgy for her diabetis. Because of getting her in on early intervention she got into head start and then special education and teachers to help us in school. I worked full time and had two other children so my mother moved down to help me take care of my girls and Hayli. It takes a village to raise her.

What specific people, resources, or moments helped you the most in navigating life as a trisomy parent?

Dr Norman Fawson the doctor that diagnosed her and helped to make sure I had contact with her in the Nicu. Helped with special formula because it was expensive. I did not produce enough milk. He got her set up with early intervention TLC. Dr Carey getting me connected to the right doctors. Dr Day cardiologist for getting her the heart surgery she needed. He was the one who fought for her to get the surgery at 2 years old because they did not want to do it. Several special education teachers . teachers and Principals of the schools that were so good to work with us.

What would you say to a parent who has just received a trisomy diagnosis for their child? What do you wish you had known at the start of your journey?

Love them extra because the road ahead is hard. Never put up fences as to what they can and cannot do. Let them try. It takes a village to raise them do not try and do it all yourself let others help you. If you have other children teach them to be the protectors of their sibling. As in my case teaching her sisters how to take care of her incase something happens to me and they will need to be the care givers. Most of all listen not only to there words but actions to know what they need. There mile stones are not going to be the same as other children. Reveal and celebrate all things.