I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared this unique experience to understand it, to imagine how it would feel. For me, it was like this…
Once I found out that I was expecting, I immediately started making plans about the things my baby and I would do, what I would teach him or her, the things we would experience together. When I learned that I was having a girl those thoughts and plans expanded to include all kinds of mother/daughter experiences, trips to the mall, makeup sessions, and spa visits.
I ran out and bought all the “What to Expect When You’re Expecting” books. The first book in the series was my guide as I went through my pregnancy. I discussed everything that the book said should be happening with my doctor. I never missed a doctor appointment. I took every test my doctor recommended. Everything progressed as scheduled and all tests came back that I was having a healthy baby girl. The excitement and anticipation of the arrival of our little bundle of joy could hardly be contained.
FINALLY, the day arrived, SHE arrived, and we were beside ourselves with joy! A few hours after her arrival the doctor came in with news we weren’t expecting, “Your daughter has Down Syndrome… and a heart defect.” Down Syndrome?!? What do you mean Down Syndrome… and a heart defect??? We signed up for a perfectly healthy baby. All the tests said we would have a healthy baby girl. All my life I’ve dreamed of being a mother to a perfectly healthy baby.
Throughout my journey, I have been blessed to work for AT&T. Not only did I have great benefits and paid time off but I received continued support to take care of my family’s needs. I was able to find the doctors and specialists that my daughter needed who were all within my healthcare plan. Having these benefits gave me one less thing to worry about when my daughter had open heart surgery at the age of 6 months. One less thing to worry about when she was diagnosed with leukemia at the age of two. The support of the company I work for and the support of my supervisors when I needed FMLA and PTO was a blessing. I even joined the Ability employee resource group, a group of AT&T employees who were traveling down a similar road. It was a place where I could learn from and share my journey.
My daughter is now 21 years old and an 18 year cancer survivor. Her heart is strong, so much so, that she is now a Special Olympics athlete who has earned many gold, silver and bronze medals. She is a High School graduate and currently taking courses at our local Community College. She loves to sing and dance and is always the life of the party. She is the most loving person I know and has a smile that melts my heart.
My journey did not take me down the road I had planned. It took me down a different road that wasn’t always straight; there were many twists, turns, and even detours. There were many hills to climb and many sleepless, worrisome nights (and days). Through it all, I am thankful that I was entrusted to be her caregiver, her advocate, and her MOTHER! And I am thankful to AT&T for making the road a little less bumpy.Learn more about our team and benefits