So honored to have Michelle Gilbert, mother of Aiden here talking about Angelman’s Syndrome! Salt Lake City has a walk this next month check it out here: Angelman Syndrome Foundation’s National Walk. Welcome, Michelle!
My husband and I started a family in 1997 with the birth of my oldest son, Shawn. Working in Kansas City, I balanced my time between work and family. But when my youngest son, Aiden, was born in 2004, I had to put everything on hold due to his unexpected medical obstacles.
During the first year of Aiden’s life, he was always sick and was frequently hospitalized for lung infections. He also missed several developmental milestones and NEVER slept. When he was a year old, my husband and I decided to leave our life in Kansas City for a fresh start in Salt Lake City. Not long after we moved, he developed viral pneumonia and was hospitalized on Christmas Day. He spent three days in an oxygen tent and hardly moved. I was terrified he was going to die.
Aiden was almost 2 years old and he continued to miss major developmental milestones like sitting up, rolling over, talking, crawling and walking. He had been ill most of his life with lung infections and he rarely slept more than 3 hours a night. When we finally met with a geneticist, it took him all of 10 minutes to recognize the symptoms and give us a diagnosis, Angelman syndrome (AS). When Aiden was diagnosed with AS, I was devastated. I had never heard of this syndrome and had no idea what to expect. However, we were blessed with an amazing physician who has and continues to help our family through some tough times.
I was told not to look on the Internet because the information could be discouraging. Of course, the first thing I did was look online. Luckily, in my search, I found the Angelman Syndrome Foundation website. There were answers, support and an entire community of families just like mine. The next year, we attended our first Angelman Syndrome Foundation National Walk and felt so fortunate to meet other individuals with AS and their families. Having a community of other families that understand exactly what we are going through has been so important.Serving as a Walk coordinator for the Angelman Syndrome Foundation National Walk has become an important annual volunteer commitment for me. This event raises awareness for AS and funding for research that we hope will ultimately lead to a treatment and cure. It brings me so much joy to see the other individuals with AS grow and surpass the milestones we thought they would never come close to reaching.
Six years ago I didn’t think we would see a cure for AS in my son’s lifetime. There just didn’t seem to be much interest in research for AS. Aiden is now 11-years-old and although he requires constant care and supervision, he walks with assistance, understands directions, and communicates with sign language, gestures and is learning to use a communication app on his iPad. Aiden is a remarkably happy kid with an infectious laugh, and our connection with the Angelman Syndrome Foundation has given us hope that one day, Aiden will see a cure.
Q: Tell us about your background?
I was raised on a farm in rural Missouri and graduated from Missouri State University with a degree in Cell and Molecular Biology, with the hope of becoming a medical researcher. Instead, I discovered my passion in the field of organ donation and transplantation. I spent the first 10 years of my career procuring donated tissues like corneas, heart valves, musculoskeletal tissue and skin which were instrumental in saving the lives of so many people. In the last 10 years, I’ve worked to advance electronic documentation and data sharing for donated organs and tissues. Being able to help save and heal the lives of others has been rewarding for me and enhanced my outlook on life as a whole.
Q: What was the most unexpected surprise (hard or wonderful or both) about motherhood?
A: From the first time I held Shawn and even when I think about him and Aiden, I am still surprised at how much love I have for them. I thought I knew about love before – but I discovered a whole new level of love that you have for your children that I don’t think you can have for anyone else.
Q: What’s a typical day like for you?
A: I hit snooze at least twice, then get the kids off to school and go to work. When I come home I workout, have dinner, and then have family time. After I tuck in Aiden, I try to have me time for hobbies, movies, or reading and then get ready to do it again the next day.
Q: How do you balance motherhood, family life and work?
A: That’s tricky and I can’t say that I am always successful. Maximizing productivity while at work is key so that I don’t have to take work home. I set boundaries for my work hours and keep talk about work to a minimum during family time. Planning time with my husband can be difficult with all of life’s demands but it is important for maintaining our relationship.
Q: In fifty years what do you want your kids to remember you for?
A: I want my kids to remember me for my faith. My faith is how I find the strength to continue day after day.