The story of Kayla
Luella Gracelyn Day, your birth was a traumatic event. You were so rare that no one ever knew why these things were happening to you when you were born… or even while you were in mommy’s belly. You stopped growing when I was 5 months pregnant, but no one was concerned. You had hypotonia in the womb, but no one questioned why I could not feel you move. We constantly heard, “sometimes things just happen, but Luella is fine.” Intrauterine growth restriction, lungs that were not developed, and Absent end diastolic flow with her cord… the midwife still told me I was overreacting in how I felt. Even having a pediatrician ask me when she was 2 months old, “What’s going on mom, aren’t you feeding her?” Not knowing that she was in failure to thrive, the beginning stages of PWS. Her daddy and I knew that something was just not right. After so many torturing tests, we finally ended it with genetic bloodwork at 5 months old. After a week at Children’s Hospital, we went home and waited. The results came back… Prader-Willi Syndrome.
What?? We had an appointment with the genetic specialist, where they told us all the horrifying things that come along with PWS. “Sometimes the kids don’t get every symptom and subgroup of PWS, although sometimes they do.” After we accepted the diagnosis, I kicked my research into high gear. Along with occupational therapy and physical therapy both once a week, I started learning sign language to help with Luella’s disability. “It may take a very long time for her to speak and she may have a large delay in her cognitive skills.” We turned to God and prayed for our daughter to have the most normal life that we could possibly give her. Boy, did He ever answer our prayers!
Living life with a rare daughter is extremely difficult some days. However, we know exactly what she needs to be strong and we will never let her fail. I quit my job to be a stay-at-home mom and give Luella the one-on-one attention that she needs. I will NEVER regret that decision. Luella has come leaps and bounds on this journey. She is accomplishing things that the doctors never believed would be possible for her, yet here we are… with this beautiful miracle child. She was not due until June 20th 2019, yet she was born on May 31st 2019. Just early enough to make the cut into PWS awareness month. To me, that is no coincidence. We have met so many amazing families along our journey so far. There is something special about having friends that you have never met, but they know everything you are going through.
Luella taught us patience and understanding when we did not know that it was missing. She brought our families extremely close and made them into a village. She made me an advocate for something that I never even knew about. She taught us that the challenges everyone else feels are small, are the milestones… and that the milestones everyone else feel are the big things, those are our tear-wrenching miracles that never seemed possible. Prader-Willi Syndrome is scary at first, but seeing your child defy every single odd she is up against daily, that is the true blessing. We love to share our rare, and we are so proud to continue learning more about PWS every week!