This past winter was hard. Everything was getting to me and it hit me how much we’ve been through. I held my cool for a long time, but I think I finally processed the last 4 years. It’s been draining and exhausting. The kids had the most therapy we’ve experienced. Sometimes I feel so controlled […]
Tag: Grace
It’s been one year since Nicholas was diagnosed with Autism and a rare genetic mutation called ZNF462. Autism was something we expected, the genetic mutation was not. Both diagnoses left me scared with different emotions, however I also felt a sense of relief. We had answers and could now get him the help he needed. […]
When I was eight months old, I had open heart surgery to repair my pulmonary valve that was only 2mm wide open. As a result, sometimes I have shortness of breath. I could possibly have another surgery in the future to replace the valve. Other than that I have no other medical conditions. Thirty years […]
I have two kids that rely on a feeding tube for nutrition due to the same diagnosis of silent aspiration. My son Nicholas was diagnosed when he was 2 weeks old, while my daughter Grace at 5 days old. Silent aspiration is when fluid enters the lungs after swallowing; silent meaning they didn’t cough to […]
Sometimes it’s really hard for our family to go places outside of the home. Whether it’s going to church, a park, a holiday get-together, or some other event, it’s difficult for my husband Steve and I to juggle our three kids 3 years old and under. We’ve probably only been to a restaurant as a […]
Something I want to start doing this year and really need to do for my own health is using respite services to take a break and do something for myself. Respite allows caregivers time away from their duties while someone else comes in to care for your loved one. Breaks are important for any parent […]
One of the things I want to work on this year is our busyness as a family. This includes therapy sessions, doctor appointments, and meetings with various service coordinators. After everything with the kids, there’s not a lot of time to be with our family. It’s easy to get sucked into all the therapy that […]
This year was big for my family. There were exciting times when important milestones were met such as walking and talking. Our family grew by one more when our daughter Grace was born in February. There were also hard times like when half our family was diagnosed with a rare genetic mutation. Whether it was […]
Having three kids with special needs means spending an incredible amount of time in doctor’s offices. Whether it’s a just a regular check-up or seeing a new specialty doctor, the appointments are part our weekly routine. My son Nicholas is very medically complex. At first he just had follow-up visits after being in the NICU […]
I would like to honor my mom and mother-in-law this Thanksgiving. I’m thankful for everything they’ve done for my family in the past three years. I have three kids with special needs and they both have been there since the beginning. They’re our biggest support system. My first son Nicholas was recently diagnosed with Autism. […]