Madison

My daughter Madison was diagnosed with a very rare chromosome syndrome which is known as 5Q14.3 micro-deletion syndrome. When we received her diagnosis, I was 28 weeks pregnant, and we were told there were only 30 documented cases worldwide with this exact deletion. The genetic counselor assured us it’s genetic, not hereditary. Meaning, it didn’t come from Grant or me. It’s something new in Madison’s genetic makeup. It “just happened” for no reason. I recall the genetic counselor saying it was like a "lightening strike."

She couldn’t tell us a whole lot since her deletion was so rare. I remember all of us sitting in her office reading a pamphlet together about this rare genetic deletion. Grant and I both had so many emotions that day.

Before you have your baby, you have dreams and expectations of what your kids will be like, what they will look like, and what activities they will enjoy. When you find out your child will have special needs, you have to adjust those plans, and for most parents, it’s a grieving process. I will be honest with you, I was scared to become a special needs parent and to let go of the hopes and dreams I had for my baby. I was scared to grieve.

Five years later, I’m not scared anymore. I’m strong, I’m happy and I am whole. She is happy and oh so loved! I’m not only a special needs parent, but an advocate, an educator, a specialist, but most of all I am a parent to the most wonderful little girl. Madison has proven the doctors wrong time and time again. She is the happiest little girl you will ever meet, even on days when she's exhausted or sick you will find her still smiling through it all.