L i n d s e y + D e r i k + Z o i e + I v i e
About a month ago, I was asked to photograph a family for their sweet little girls Make-A-Wish trip to Orange County , CA. Zoie, age 4yrs, has a genetic disorder called Microcephaly which causes CP and epilepsy, and also has Cystic Fibrosis. I wanted to capture this time for their family, as an addition to their Make-A-Wish trip so that they could have these memories documented to last a lifetime. Both their girls have never been to the beach, never dipped their feet in the ocean or sand and I got to capture them experiencing this for the first time as part of their visit to California . (Wow brings me to tears just writing this) Another part of Zoie's make-a-wish trip was also to visit Disneyland .
Zoie is one of the strongest little girls you will ever meet, or at least that I ever have. This family story is one that tugs my heart strings, but I think the mother Lindsey says it best in her narrative below :
The Cissell’s Family Story
"Derik and I were married in the summer of 2010 in a little town in the Foothills of Colorado. We got to enjoy a beautiful Honeymoon in Playa Del Carman, Mexico, and soon after that we started to plan for a family. We always wanted a lot of kids; I did anyways! I have always loved being surrounded by the comfort and love that family brings. We got pregnant with Zoie, shortly after our honeymoon, and I was a para in a special needs classroom at the time. My pregnancy was smooth and up until our 36 week appointment everything was perfect. At 36 weeks I started to measure small so we went in for an ultrasound. Zoie's head was measuring small, but nothing was brought up because everyone thought it was just a bad angle. At our 37 week appointment and after our doctor reviewed the ultrasound in detail we were rushed in for an emergency C-section to get Zoie out because there were some growth concerns. When she was born, she was healthy, she cried, her color was great, but she looked a teensy bit different. There were whispers of Down Sydrome that my husband heard, and there were multiple chromosomal tests that were done while we were there for our 3 day delivery stay. As new parents for the first time, this was scary, but everything came back totally normal so they sent us on our way and we were a happy family at home. A few weeks later while Derik was at work, I received a phone call from our pediatrician about Zoie's newborn screen test coming back positive for Cystic Fibrosis. I remember not even knowing what this was or who to turn to. Instead, I started bawling and got on the phone with my husband for him to come home right away. 2 weeks later a sweat test at Children's Hospital Colorado confirmed our sweet Zoie Rae indeed did have Cystic Fibrosis. CF is a chronic lung disease that is passed down only genetically and both parents must be carriers. Unfortunately, Derik and I had no idea we were carriers before we had Zoie. It causes secretions to build up on the lungs which can cause infections, lots of coughing, and when a CF person gets sick, their body has a very hard time getting rid of the sickness. Zoie gets vest therapy treatments daily to keep mucus loose, she gets extra salt, and extra vitamins daily to keep her healthy, and we have a great pulmonary team at Children's Hospital to help guide us in the right direction. Currently there is no cure for CF. As a family we were in shock about CF. It came out of no where, but we were also in for another shock. When Zoie was just 2 1/2 months old she had her first seizure. After spending time at Children's she was diagnosed with what's called Microcephaly, which means "small head." Zoie's Microcephaly is also genetic which isn't common at all, and once again, Derik and I both had to be carriers, and we both had to pass the Micro gene onto her. Zoie has seizures, Cerebral Palsy, learning delays, is almost all non-verbal, and can only eat puréed foods with assistance because of her Microcephaly. As I tell a lot of people, she got a double whammy thrown her way.
When Zoie was 2, I became pregnant with our second little sweetie, Ivie Mae. We worked hard and closely with genetic doctors and in the end we put our whole heart and faith in God to give us a healthy baby without CF, and without Microcephaly and He did so without skipping a beat. Ivie Mae was born in 2014 and we call her our little miracle baby. She is a carrier of both CF and Microcephaly, but didn't get either one of them. Zoie is now 4, and Ivie is now 1 1/2. My husband and I eat, sleep, and breath our girls. Zoie is the smiliest, happiest, closest thing to an Angel that you will get here on Earth, and Ivie Mae, she's brought so much light and normalicy into our lives. She loves her sissy, and they are both learning so much from one another. Ivie is blessed because she will know a type of love that a lot of other kids don't, and that's how to accept anyone for who they are and see past what society sees as normal. This week we are spending time in Newport Beach for Zoie's Make-A-Wish trip and Cori got to capture some of the things we wanted to make sure our girls did for the first time together, like putting their feet in the ocean, or touching ocean sand. Thanks to God we are getting to experience this and we are so grateful to Cori for giving us these memories in pictures. "
