Immediately following the delivery of Michelle, my husband and I received the news from my obstetrician that she suspected Michelle had Down syndrome. Even though I had read about Down syndrome in prenatal books, I knew very little about it. My obstetrician gave us a brief description of Down syndrome and had our pediatrician and neonatologist visit and attempt to answer our questions. Most of our questions concerned Michelle’s health and how it would affect our family, including our older daughter who was 3.
The preliminary diagnosis was devastating and left us in a state of despair and grief. It was very difficult to make the phone calls to our families and friends announcing Michelle’s birth. Unfortunately, all our family members lived out of state, so we had to share Michelle’s birth and diagnosis over the phone and attempt to address their questions, for which we did not have answers.
Our concerns about Michelle’s health and the emotions of receiving an unexpected diagnosis were overwhelming. A hospital social worker gave us the NADS phone number, and I contacted NADS immediately. A NADS staff member arranged for a family support parent to visit us when we arrived home. Having someone who knew about Down syndrome from her own experience visit our home and answer our questions was extremely helpful. In addition to all the medical terms, we had questions about early intervention, respite care, special education, inclusion, etc. We soon learned that we didn’t need to have all the answers. The visit from our support parent helped us to enjoy our new baby and focus on taking care of her and our older daughter, Sarah.
Meeting with other parents of children with Down syndrome helped us learn to deal with the mixed feelings of family members and friends, as well as talking with our older daughter. We did often mention Down syndrome when we talked about Michelle, but we did not use it to describe Michelle. As Sarah got older, she recognized that her sister developed a little slower than other children her age. She did understand that Michelle needed extra attention and help sometimes from a parent, aide, or therapist. Among the things we worried about at the time of Michelle’s birth was the type of relationship the girls would have. I’m pleased to say that at this point, Michelle and Sarah have a strong sibling relationship. They argue like siblings, laugh together, and share some similar physical characteristics.
Some of the questions we had after receiving Michelle’s diagnosis were answered as she developed. When will she reach her developmental milestones? Where will she go to school? Will she have friends? As an infant, I did not imagine that Michelle’s strengths would be her social skills and her love of reading. And I did not think that she would be participating in school and sporting activities, volunteering at the library, or be involved in so many programs that have created friendships for her.
Michelle has impacted many things in our family. Through her involvement in many different organizations, schools, and programs, we have been introduced to wonderful people that we might not have met otherwise. The support we received from many family members and friends at the time of Michelle’s birth and throughout her life has been very important to us. With their help and encouragement, Michelle has developed into a charming, polite, friendly, loving sister and daughter.