Anastasia Turns Two with Trisomy 9
Many fellow parents say that time has flown when they see their babies becoming young people. That isn’t the case for us. We have felt every minute of Anastasia and Athena’s two years-of-life.
We clearly remember their tenuous start in a Florida NICU named by the nurses as “Baby A” and “Baby B” and the many medical procedures. They probably remember them too!
We are learning that one of the positive aspects of having a special needs child is that they never grow up. Anastasia’s favorite toy is a rattle designed for newborns. She tries to hold it for as long as possible and laughs every time it lights up as if it’s the first time she has seen it. We can all learn something from her pure and simple joy at the little things in life.
It can be a difficult balance, juggling Anastasia’s extensive therapies and medical appointments with Athena’s hobbies like gymnastics and play dates. It’s hard to switch from being a special needs advocate to a “normal” parent each day, but we have learned so much along the way. Athena has made many friends in the playground and at her toddler classes. We feared that Anastasia would be isolated because of her medical equipment and inability to interact with other children, but so far we have been pleasantly surprised.
Sometimes we take Anastasia to Athena’s play dates or classes. The other toddlers have mostly embraced Anastasia and simply continue to play around her. One memorable moment was in gymnastics. Anastasia was lying on the trampoline, and the other kids gathered to jump around her in a circle, so Anastasia could enjoy bouncing up and down with them. We hope the twins’ peers will always involve Anastasia like that. The toddlers have reacted better than most adults when they notice Anastasia’s medical equipment. As parents to a unique little girl, we have become used to the stares and questions, but it pains us to know that Athena will soon understand that her twin sister is different. She will also realize that Anastasia has a difficult path in life and possibly a shortened life. It’s important to us that Anastasia feels special rather than a burden and that neither of our daughters is bullied because they are adopted and/or have special needs.
Anastasia’s second birthday present from Ann and Robert H. Lurie Children’s Hospital was an improved EEG. The test looks for signs of seizures caused by her epilepsy, but it also reveals how organized Anastasia’s brain signals are. We learned that her brain is less chaotic. She rests, and she has dreams, which was a nice surprise. We have had a lot of fun imagining what she might be dreaming about – going for walks in her stroller, lying next to Duchess, or perhaps sitting in the sun and listening to Classic FM on the radio. Anastasia’s developmental therapist says Anastasia likes classical music because it is organized. Many special needs children apparently don’t like jazz because it isn’t predictable. Some of our more talented family members are recording a series of songs just for Anastasia that she can listen to by pressing a switch button.
Our goal for Anastasia when she started therapy at six months-of-age, was for her to sit by her second birthday. According to her physiatrist, children who sit up by two years-of-age have a 70 percent chance of learning to walk one day. Anastasia is sitting for two minutes at a time while wearing her back brace. She can sit with some help and is certainly more engaged in her environment, so we have hope that she will walk and fly!
The twins’ birthday is between Mothers' Day and Fathers' Day. Those days have been hard for us to celebrate in the past. Many people don’t realize that there are others who dread Mothers' Day and Fathers' Day. There are men and women who haven’t met the right person yet, but they desperately want to start a family. There are people who have lost parents or are estranged from family, children or partners. Others who suffer from infertility can feel isolated on these days. We also think of the twins’ birth mom at times like this. She chose to give up her biological children because she couldn’t offer a stable home or upbringing. The birth mom wanted the twins to have a loving, large family, consistent healthcare, good schools and a safe environment-the same wishes most parents have for their children. Her decision to place her children for adoption enabled us to become parents. It hasn’t gone how any of us thought it would. We have had to advocate, travel and parent more than most new moms and dads, but we are a family with unique and close bonds. They say you can’t choose family, but the twins chose us and we chose them.
We are grateful to have Athena and Anastasia.
